the whole trip

Prologue
February 15, 2006


It wasn’t my choice to move back home. I was nearly forty and desperately trying to move forward with life. But when I finally accepted that my dad had Alzheimer’s I knew that the only thing to do was move back in with my mom to help her.

I’d heard stories from people who had family members who were afflicted with this horrible disease and those stories weren’t good.

It’s been a frustrating few months. I’m not really sure what to expect. But one thing is for sure, dad’s so changed and he has changed so quickly. Just a few months ago he was the typical cantankerous old man and we loved him for it.

It was what made him dad. And now that feels like it’s changed somehow.


February 16, 2006

I’m feeling really stressed out right now. This morning I sat with dad in the living room and we talked about the cold weather. It was weird because he tried contradicting me about the level of coldness outside. I just gave in, sat back and chose not to fight. How could I? How can I ever now? He’s slowly evaporating and there’s nothing I can do to stop it, not a thing. All of it is increasingly overwhelming and it’s all because of his condition.

Alzheimer’s disease.

On the bus the other day I thought that by recording my thoughts in a sort of diary that I would be able to make sense of this. I thought that I would put it into a book. Well I’ve been here six months living with him under the same roof and thus far I’ve made sense of it by telling myself that there are varying degrees of this situation. He could be worse I often tell myself. Still a strong sense of lucidity. He knows who I am, who mom is, who my brothers and sisters are. But all that I know about this horrid disease tells me that one day those memories will be long gone and he will cease to know me.

Last week we had to rush him to the hospital. He’d had some kind of infection. But of course he refused to go. And the three of us – me, mom and my oldest sister, Elaine, try as we could, were just not able to make him come with us. He kept insisting that he would go in the morning.

“I’m not going anywhere” he kept saying.

His voice rose and got increasingly angry each time he spoke the sentence.

The three of us knew that his infection would get much worse the following morning and we knew that he had to get medical attention right away.

So finally after several long minutes Elaine finally persuaded dad to come to the hospital on the condition that a doctor would be able to see him right away. Of course if you have ever been to an emergency room you know that this just is not the case.

But remarkably the emergency room staff admitted my dad right away. And the doctor agreed that had he had waited until morning to seek care his condition would have gotten very bad.

I sat in the waiting room until 2:30 that morning watching the Olympics on the small television that sat in the top corner of the room trying to stay awake, trying to not be afraid, trying to not be stressed.

Trying to not think.

I’m slowly sinking here. When mom asked me to move back in six months ago to help her with dad my first thought was no, not on your life. Don’t get me wrong. I love my dad and mom with all my heart but they are my parents and they do tend to push the right buttons that set me off. But I did it anyway. I knew that mom needed help in the worst possible way.

I didn’t know that it would cause me immense stress that would find a release in whatever format was available. This morning dad came into my room and asked me to drive my 21 year old nephew to work. I didn’t hesitate for a moment to do this. But upon returning I discovered that my nephew had drunk a bottle of chocolate milk that I had purchased last night and that I had intended to drink for breakfast this morning. I was so upset that I ripped apart his headphones for his CD player. (Now I have to buy a new set of headphones for him).

It’s stressful.

Living with my dad who has a disease that’s eating the person he once was is sad. I want to cry. In fact as I write this there are tears in my eyes. I’m losing my dad and I can’t stop it.


February 17, 2006

He seems to be jumping back and forth through time. He recalls events sixty years old like they happened moments ago. Last night we were at the dinner table and he and mom were getting ready to go out for a night of bingo. Mom had asked him what he had had for supper and he simply replied that he was tired of everyone trying to force him to eat.

“Even the sisters are trying to make me eat”, he’d said.

He was referring to the nuns who ran the residential school he’d attended some sixty years earlier.

I struggle with this daily now. This mixing up of timelines is new. Yesterday was the first time he’d done that. It just used to only be him creating events. This morning he’d announced that the barber couldn’t cut his hair yesterday because the barber informed him that he his head was covered in lice. Dad’s been almost completely bald for about five years now. He recalls memories as being real when the rest of us know that his recollection is in fact his creation.

I don’t know how to deal with this. A few days ago I finally got a much needed break from this. I got my hair cut, had lunch and saw a movie. I was away about seven hours. That was my first real break from my dad in about two months.

The only one among my siblings who recognizes that there is a problem is my eldest sister, Elaine. The rest of my six siblings are choosing to ignore this, literally turning a blind eye to it all.

A part of me can understand why all but one of my siblings are reacting the way they are. They don’t want to face what Elaine and I know. They don’t want to accept that dad is not the dad they knew as children.

When I think about it tears come. I’m so totally tired. So completely exhausted. If I’d had a job that would make things easier on me. But even the thought of leaving dad alone with mom makes me feel guilty. She’d asked me to help out. And that’s what I’m doing.

A few weeks ago I saw this as a blessing and an honour. Growing up I was always lost in the shuffle. It happens when you come from such a large family. At times it was easy because I was able to stay in the shadows which was sometimes a good thing, especially when he drank and became violent.

But it was also difficult. Being lost in the shuffle also meant that I never got the nurturing and guidance and love I so desperately needed. I missed my parents even noticing me back then.

But now being here alone with both my parents, even under such strenuous circumstances I get to have them all to myself. And being given the gift of being relied upon to help mom with dad has been a blessing. Lately Elaine has been informing me that I was always their favourite growing up.

I told her that couldn’t possibly be true.

But after mom had specifically reached out to me to help her with dad I’m starting to perhaps believe that.

I now feel blessed to be caretaker not only for dad but for her as well. Mom’s approaching 70 rapidly.

Even in the hell of watching my dad deteriorate I feel a sense of warmth knowing that I’m here for both of them.


February 18, 2006

Dad seems to be obsessed with perpetually shovelling the front and back parts of the house even when those areas are free of snow. He wants to do this on a daily basis. I’m sure this action is a result of the disease.

Sometimes I grow tired of this situation.

This afternoon I had to play chauffeur to my dad and drive him to where my mom was so we could return the rental car she was using. Pretty well the entire way dad kept telling me how to drive, which way to go, to watch out for cars, etc. Had I not let it affect me I’m sure that I would have been extremely stressed by it. In fact at one point mom called my cell phone with instructions as to where to meet her and as she was giving me instructions dad was barking orders on how to properly drive.

I really feel completely alone. There’s no one there for me. My role here is to be there for both my parents and a lot of the time it’s okay. I don’t mind helping. But after a while it really does get draining.

I know that seven hours is not enough of a break. I don’t have a job and because of that I’m here almost constantly.

Someone pointed something out to me last October. It was at a men’s retreat. It was here that I was told that I have a very giving spirit, meaning that I love to give. That’s true. I didn’t hesitate for a moment to move back in to help.

Ten years ago I became a Christian and a few years ago I would wake up every day and pray to God that He would let me serve him that day.

I can’t explain why I love to give, why I sometimes feel that I need to give. I just do.

And as taxing and stressful as living with mom and dad is sometimes I feel that I need to be here. And the more I think about it, the more I feel that I’m really the only one that can be here. All my brothers and sisters have families of their own. Elaine’s children are grown which gives her the time to help with dad when she can. But the others? I can forgive them for seemingly not wanting to help. I think its not that they don’t want to help to the degree that I am. They can’t. They have families and children of their own.

I’m not married and I have no children. And I’m currently not working and didn’t have a place of my own before I moved back in. So asking me to help wasn’t really that big of a deal for me.

But lately I just feel that I have no life of my own. And more than anything I just want to move on. I want to move on but I can’t. And taking care of my first male role model as though he was now the son and I the dad hurts.

He’s not the giant mountain I knew as a kid. And I miss that man so much. Growing up dad was a drunk and would often beat me for something as trivial as accidentally causing my then six year old brother to cry. Funny thing is, right now I would give anything to have that man back and be that tiny scrawny 11 year old boy once more.

Some days I want to scream as loud as I can.

Some days I want to hitch to Toronto and live on the streets.

Some days I just want to die.

Because lately…

This is getting way too much for me to handle.


February 20, 2006

There are still more good days than bad ones. And even the bad ones aren’t always entirely bad, just those tense seemingly out of control wild moments where he is totally lost. I didn’t write an entry yesterday because he’d managed to get through the entire day on a pretty even keel. There were no major moments of confusion. Although at breakfast this morning he was once again unsure of his age. He believed he was 65 this morning.

Last month when he turned 71 he wasn’t even aware that his birthday had been approaching. And he definitely didn’t know his age. He was convinced that he was turning 55. I laughed when he told me that and simply replied “that’s fine with me because that makes me 24”.

There is medication available for him but it’s not covered by any kind of plan and at $175 per bottle and with mom being retired, well, she just can’t afford it and we have no choice but to stand back and let the disease have its way with dad.

He’s taken to wandering away whenever he is left alone at home. Remarkably he does know his way to the local mall, a 25 minute trek by foot from home and yes, he does know his way back. We try not to leave him alone unless we absolutely have no choice in the matter.

By summer time the disease will have ravaged his memory so badly that we may never be able to leave his side.

A deep degree of familiarity seems to stem the disease a bit. Perhaps this is why he is able to hike to the mall and back with great ease. Of course a totally foreign environment has the exact opposite effect. He and mom were in Venezuela at the end of last year and mom had told me that one day he was so confused that he didn’t recognize his 23 year old grandson, Jonathan, who, along with his wife and ten year old sister, had accompanied my parents on the trip.

I’m trying to brace myself for that moment when he completely doesn’t know me.

A decade ago I was invited on a tour of a retirement centre and a nurse had spoken to me about several of her residents. One in particular, a 90 year old gentlemen, she told me, still insisted on going down to the shore every morning to check his fishing nets. Something I imagine he regularly did 70 years earlier.

A couple of days ago his reality shifted a bit and for a brief moment he was a young boy again living in a residential school. That scared me when I thought about it later. Is this where he is headed? Stuck in between the real world and long gone memories?

I really wish that this whole process didn’t affect me. But it does and…

I have no clue what to do here.


February 21, 2006


He used to love hockey, especially Hockey Night in Canada. I have vivid memories of Saturday nights when I was a kid in the 1970s. Hearing my dad roar “score” almost as though he was a part of the team always meant that he was having a great time.

That part of him, thankfully, still exists, though at a much lesser degree. During the Olympics we sat together today watching Canada take to the ice battlefield against Czechoslovakia.

In these moments I still have my dad, the dad I once knew and respected to no end. But these moments are fleeting and dissolve in a heartbeat. The disease sometimes unfolds its wings and let’s the dad I grew up with peak out and look around, but only for an instant. Then just as quickly the disease raises it’s claws and yanks that man back inside.

Just a few short years ago dad was still dad – cantankerous, boisterous, and larger than life. He was dad. I didn’t even recognize the beginning when the disease sprouted. It happened so very slowly, though I was the very first person in the family to recognize the onset of Alzheimer’s disease in him. Even mom, who spends more time with him than any of us, didn’t recognize it or perhaps chose to ignore it.

He sits in the living room right now, quiet and peaceful. Four or five years ago when I hit hard times I had to move back in with my parents and everyday he would get extremely angry at me always yelling at me to go out and get a job. I accepted that behaviour. It was who he was. But now, that behaviour is completely reversed. Most times he is extremely docile towards everyone. There are times when he gets frustrated and upset when either I or mom are instructing him to do something or questioning what he had just done. He reacts very much like a child because in so many ways, he is a child.

There are times when our roles are reversed. And that isn’t just weird, it’s painful. I have to step into the dad role with him sometimes. More than anything I don’t want this, any of this.

I have to be positive about all of this. I have to accept that this is dad now.

And I also have to realize that this version of dad will expire and in a couple of years things will be radically different once more as I’m faced with yet a different version of him.


February 22, 2006

He wandered away last yesterday afternoon. As I was working on my last update I glanced over at him in the living room climbing into his purple sweatshirt. And a few moments later I heard the back door close. I got up out of curiosity and discovered that he’d left.

I quickly got dressed and ventured outside to see if he’d just went out to shovel yet again. When I saw that he was gone I came back inside and thought for a bit, not really sure what to do. After several moments of mounting panic I finally called my mom on her cell. And 25 minutes after he left the home he showed up at the nearby mall completely safe and unharmed.

It’s like having to watch a small child who doesn’t know any better. It’s scary. In his condition he’s not suppose to drive but he does on occasion and I never know if he leaves will he take a wrong turn and suddenly be lost. Thankfully most times he wanders away on foot but that alone doesn’t ease my fear of him getting lost.

Each day I try to make sense of this situation. Each day I tell myself that this is how life is, this is where things are with him and it’s never going to get back to the way it used to be. I’m trying to be calm and understanding and patient. But moments like yesterday afternoon so intensely frighten me because it’s one of those wild out of control moments where the disease becomes an angry dragon.

Sure he still has loveable moments and I eagerly dig for those treasures and when I reach that prize I carefully file it away and pull it out and examine every inch of it when he is totally buried by an Alzheimer’s moment.

I’m conflicted much of the time. I want to have a life of my own, my own home, my own career, my own path. But I know that I can’t. Not just yet. Maybe in a month, maybe in three. But right now I have to find a way to escape and maintain a skeletal existence while catering to my parents. And that’s getting more and more difficult.

There are movies. Last night I snuck away to see a movie. This afternoon I plan to do the same. It’s all I have right now. My only escape. My only refuge in this horrific storm. And for now, that is enough.

But my strength is slowly dwindling. There are only so many moments like yesterday that I can handle.

Sometimes I can still see that larger than life man that he was two decades back. A part of me has that deep in me. I believe that I am larger than life in the way that I care for and serve others. In every possible way I am my dad’s son. Our dads. They shape us. They make us who we become.

The weirdest thing about this is that throughout all this I’m not the least bit sad. I can’t be. There are moments when I’m terrified, angry, frustrated. But there are much more moments when I’m happy.

My dad is alive and physically healthy and breathing and watching television in the next room. In five years he may be gone. But right now he’s alive and well. And that is all that’s important.


February 23, 2006

His behaviour seems to be far different around certain people. He is somewhat “normal” around me and yet around mom he is so completely different. I’m not sure if it is actually the disease that is producing this behaviour but mom tells me that toward her dad is in a constant state of paranoia.

He has informed her on numerous occasions that men have come to the house, barging in, he often tells her. He says that these men come in and look around and then leave. And the saddest part about that is that he actually truly believes that these men have come there. If pressed about providing a description of these men I’m sure that he could.

Others in the family are realizing that he just is not in a healthy state of mind. This day my four year old nephew came to visit for the day and when mom had to step out for a few hours she pulled me aside and whispered to me that Derek didn’t want dad to be left alone with his young son, Jacob.

I’ve yet to read up on this disease. And this leaves me with so many questions. Is this behaviour normal? Are others who are stricken with this disease acting the way dad does?

My grandmother had this same disease some twenty five years earlier. I was 15 then and to be honest I really don’t have much memory of her behaviour. All I know was that yes, she had the disease. This leads me to believe that the disease is hereditary and that one day I, myself, might suffer the ravages of Alzheimer’s.

I’m really not sure how to deal with that one.

Maybe God will spare me seeing as how I’m indirectly struggling with it now. And it gets increasingly difficult. I’m not subjected to the treatment he displays on mom but I’m witness to its effect as she relays stories of his erratic and very taxing behaviour. She is on the verge of giving up.

She puts up with so much from him which causes her endless stress. Truthfully I don’t know how she manages. She’s always been the strongest, most powerful woman I know. I’ve seen her go through a lot but this… this is something that no one should have to deal with. The disease is relentlessly chewing him up and slowly swallowing him piece by piece.

He’s just stepped inside from a bit of shovelling. I can hear him moving about in the kitchen cheerfully chattering with my young nephew. He seems so at peace, a billion miles away from the paranoid scared old man that only shows himself to mom. But I know the truth.

This is who he is.

He seems to split into different personalities for different individuals. Another effect of this bloody disease.

There are days when I want to tell mom that I’ve had enough too. I have to now not think about the disease when I am with him. I have to display endless patience and understanding. There are days when I have to get away as well. Days when I feel so completely overwhelmed. I’ve told her that she needs to get away, that she needs a long break.

I’ve suggested putting him in a home, an idea that she wholeheartedly agrees with. But, unfortunately, we are just not financially able to do this.

So the rollercoaster ride will have to continue.

It’s been seven days since I’ve started this diary. Somehow it seems so much longer.

I just hope that at the end of this trail he finds peace. But the one thing that keeps me going is that I know that they both need me and I can’t give up no matter how hard this is. This is so hard that I cry almost everyday now.


February 24, 2006

It seems that lately I’ve been able to find more moments away from him. But in those moments away I’m able to see that this just isn’t about dad, it’s about mom too. Elaine once told me that mom empties her frustration onto her. I never quite knew what that meant. But at the time I was not living back here and was not subjected to my dad’s behaviour.

But now that I’m here I fully understand what Elaine had meant. Mom comes down on me from time to time and it really has nothing to do with what I have or have not done. It’s just her venting her frustration that living with dad has caused.

Things could be worse. I could be living in a homeless shelter. I have to put everything into perspective these days. And I have to keep reminding myself that this situation is only temporary even if temporary refers to a few more months. I can cope.

I don’t think about the end of this because the end of this situation could mean his leaving us permanently. And even though he is clearly no longer that dad I once knew I still love him deeply and still need him and I’m just not ready to have him die yet.

Of course no one can control that. If his time is up tomorrow then his time is up tomorrow. This morning I discovered a book that had been sitting by this computer for weeks now. When I finally picked it up this morning I realized that it was a book about Alzheimer’s disease.

I know nothing about this disease except what I’ve experienced first hand. Does that make me an expert? I don’t know. But what I do know is that it has changed who I am and how I look at life.

I never really was about me or my needs to begin with but since I moved back in with my parents I’ve grown so accustomed to doing for others that it really has become second nature to me. It’s just my role in life right now. I’m serving. And I’m okay with that.

I don’t want to know any medical information about this disease. I’m not sure it would do anything for me other than prepare me for what’s to come. And I’m not sure I want to know what’s to come. I know that one day this disease will take my dad’s life. And I just want to hang on to him a bit longer.

Knowing what the coming attractions will rob me of the rest of my dad.


February 26, 2006

His paranoia continues. Yesterday he was certain that I had taken his money jar. How I don’t know considering that he locks his bedroom door whenever he leaves and only he has the key. Yeah, even mom has to wait for him to unlock the bedroom door. When he finally did find his money jar he did something that was completely out of character for him. He apologized to me.

I guess being paranoid is one of the signs of this damn disease. Right now he’s having a relatively good day, just a bit of confusion about where mom is. But that’s normal for him, something that happens every single day now.

In the beginning when I first moved back in I was getting angry and frustrated with him a lot. I hadn’t really understood how the disease had affected him. I just couldn’t understand and as a result I used to get extremely upset at him. The thing is, back then when it was happening I wasn’t even really aware of it until mom pointed out my behaviour toward him. Looking back now on those early days I feel pretty bad about how I treated him.

But these days I am much more understanding and much gentler with him. In fact I go out of my way to be more caring toward both my aging parents. In a way this is a major blessing to be back living with my parents. This is allowing me to care for them and look after their needs they way they did for me 30 years earlier.

As a kid I can remember being somewhat afraid of my dad simply because he was emotionally distant and never really connected with me on a personal level. It took years for me to figure out that my dad was my greatest influence and my perfect role model as a man. I never realized until I was 30 that my great sense of humour comes directly from him.

In the past few years I’ve heard people say to me “You are your dad’s son” referring to my actions and mannerisms and behaviour and how they identically mirror my dad. I’m so incredibly happy and proud that people can see that and say that about me. That is such a huge honour.

There have been so many moments in the past few months where I have so badly wanted to be on my own and away from both of them. But everything happens for a reason and if I were meant to be on my own, I would be. I know that I’m needed here.

I cannot explain what it means to me to be in this role for my parents. Thinking about this moves me to tears, not tears of sadness or pain but rather, tears of joy.

Out of all my siblings my mom chose me to come help her with him. That is so wonderful and amazing.


February 27, 2006

This morning in the paper I saw that the dad of the best childhood friend I ever had passed away. Scary thing about that is that his dad and my dad are the same age. I know that time is drawing to a rapid close for not only dad but mom too. And all I can think right now is how much longer are we going to have dad here.

Late in the evening he suddenly wanted to go for a walk. He claimed that he had been in the house all day and that he wanted to stretch his legs. I ended up having to call mom on her cell who, thankfully, was just a few minutes away in the car. Dad was getting ready to go for his walk. He was determined not to let anyone stop him. But the disease played a key role in keeping him from his walk long enough for mom to arrive.

You see he misplaced his jacket and spent several minutes looking around the house for this jacket. At one point he told me that he didn’t have another coat. Of course he eventually found his coat. By that time mom had arrived.

His walk was instantly forgotten the moment the car pulled into the driveway.

But forgetting is what this is all about. He forgets to eat. He forgets to shower. In fact he has worn the same clothes for the past three weeks. He claims that his clothes are clean. It’s become an incredible daunting task getting him to do things that the average person usually does without thinking.

Things are never going to get better with him. Ever.

And the task for me and my family is to just cope and continue to adjust as he progressively deteriorates.

And me? I gotta find a way not to get so bloody angry at him and just remember that it’s the disease not him.


March 21, 2006

I could hear her arguing with him threatening to have him locked away. Of all my brothers and sisters I am the only one who truly understands what mom is going through because I live under the same roof and I’m exposed to it on a daily basis. I know that she is nearing the end of her tolerance level with him. I know that mom can’t bear to stand much more. It is incredibly stressing on her. It used to be that I was never exposed to that side of his behaviour, the accusations of infidelity, and the constant mounting paranoia. I never saw it.

Until recently.

In the past month I’d been witness to his outrageous behaviour to mom. And it’s caused me so much stress and anger toward him. He’d had an affair when I was 12. I can still remember him giving me money to take my two younger siblings to the movies while he had his way with another woman. I’d never forgotten that. And in the years since I’d often wondered why she’d stayed with him.

It is said that love is blind. In my mom’s case that is completely true. She turned a blind eye all these years toward his aggressive behaviour – the physical abuse he’d displayed toward her and me and my siblings, the all night drinking parties, his shortcomings as a husband and father. She turned a blind eye to it because she loved him and still loves him.

I can see in her eyes that she yearns for the man that he once was. I know that she sees that he is gone. And it tears me up inside.

I want to move out more and more with each passing day. I want to abandon my entire family and just start over. I want to ditch mom and let her deal with dad on her own. But I can’t. Because spikes of guilt are driven through my feet deep into this house. I just think that I would be a terrible son if I ditched her.

She has taken a teaching job to bring in more income. Unfortunately she has to take him with her everyday. So as she teaches he sits in the classroom just to be with her. She knows that she can’t abandon him. This leaves me here alone during the day but unfortunately I cannot go out because she now expects me to have dinner waiting when she arrives. I love to cook but under these circumstances it becomes a chore rather than a joy.

My youngest brother wants to have dad committed to a nursing home, something that in the beginning I had suggested because I knew that the situation was headed in this direction. Back then mom had disagreed with that decision because she probably believed that this situation would somehow reverse itself and dad would once be the husband he used to be. But now she wholeheartedly agrees with us. She now thinks that it is best to put him into a nursing home.

I took a walk this morning to the local grocery store and on the way I was thinking that once dad is placed into a nursing home that each of us would have to make the effort to reach out to be with him. I knew that I would make that effort. But as for the rest of my siblings I wasn’t so sure. They rarely come by. Only my youngest and older brothers come by.

Having dad in a nursing home would just be another river that they would have to find a way to cross.

We have to do something. This situation is destroying mom and me. I find myself so stressed out that I cry.

I wish that there were another way.

But the reality of this situation is that we have no choice but to put him into a nursing facility and soon.

And that thought brings more guilt than I thought possible.



April 25, 2006


Today the inevitable happened. He wandered away on his own miles from home totally alone.

He was taken to a treatment centre for senior citizens afflicted with the disease. Mom didn’t prepare him for this meeting, this planned day of rehabilitative activities designed to stimulate memory. She feared that he would not want to go if he knew the purpose of the meeting.

In retrospect she realizes now that it was a mistake not to be truthful with my dad. She dropped him off and he suddenly got the impression that he was being committed to a nursing home and in his fear he fled out into the city.

He has short term memories that remain.

He recognizes markers and as such is able to take short treks to my brother’s home, to the local mall and out for evening walks they used to take together by the lake near downtown Winnipeg. It was near that lake that the rehab clinic happened to be located.

My first reaction was to call the police and let them know that he was out there. I could hear her in the background telling my sister that she suspected where he was. A phone call just ten short minutes later to her and my fears were buried as she had located him.

We need to keep ahead of him, at least a couple of steps. We need to be strategic now. Last week I was ready and firm about moving out by the end of this week. I had had enough. But now I can’t. Not now. Not after what happened today.

I’m still needed.

And truth be known I’m not sure how to feel about this.

My independence is still gone.

But I know that what I’m doing for both of them greatly outweighs something as trivial as independence.


May 7, 2006

I don’t regret living here. I don’t regret giving up my independence because in reality I have not given up anything. In reality I have been given so much. I was blessed by being asked to come back and take care of both my parents in the last part of their lives.

It has truly been a remarkable gift these past several months. I have been allowed to give back to my parents in the exact way they gave to me thirty years earlier.

I used to believe that this was only a negative thing and that what happened to me was a negative thing. But now I realize that all of this, everything, has been a wonderful gift. I’m glad to take care of my parents. In ten short years when I am fifty years old both of my parents will likely be gone. And these moments now will be but a memory.

The biggest monster that used to regularly try to devour me was worry. But worry changes nothing. I cannot control what the rest of the day brings, the rest of this week, and the rest of this year. But what I can do is choose to be positive about it.

I know that there will come a time again when I will get angry and frustrated about life and about what has befallen me but it will be okay because I know that I am alive and well and that God is, was and will always be in control.

And that is the most important knowledge any of us can arm ourselves with.


July 15, 2006

I’d purposely not written an entry for several weeks because I suddenly decided one day that this journal was only reminding me of his disease and I was trying to focus away from it as much as I could. Nothing significant happened. His disease continued to ravage his memory. The days just bled into one another and I’d begun to not tell them apart. But I began writing again because one specific event caused the gears to change.

In retrospect Saturday, July 8, 2006 should have been a red flag to all of us that it was going to end very badly. It began a couple of days before with the sudden passing of one of my cousins on my dad’s side of the family. Of course with my dad’s memory being extremely short he would not remember being told of the death so it was left at that.

The morning of the funeral he got up, went about his daily routine which included getting dressed, having breakfast and so forth.

I’d been left behind which I didn’t mind because it would give me time away from him. The thing is, though. Even though he would be gone, he would still be here, his memory strong and bold even though he, himself, was physically absent from here.

They returned late that night and the moment they walked through the door I knew that something was once again terribly wrong. He’d been on one of his rants about mom being unfaithful to him - a total lie. I came upstairs afraid that something might be said that would escalate this encounter to a physical level.

Within moments that fear became a reality. I’d spoken up to defend mom’s honour, an act he’d didn’t take too kindly to. Suddenly he leapt up and charged at me. I easily took him down suddenly striking him like a jackhammer uncontrollably. I was furious at my dad. The frustration and anger about this disease, his behaviour, all of it uncontrollably spilled out. Looking back on it now those few tense seconds are now almost a complete blur.

All I remember is his face being opened up and a sudden gush of colour and him striking me across the head with toaster which I weirdly didn’t feel. I can still see mom on the phone talking to the 911 operator.

“Help me; this man has gone completely insane.”

Looking back now I can remember briefly wondering if she was referring to me and not my dad. And I’d also wondered why she’d not referred to him as her husband.

I wrestled with dad for several more seconds. We inched toward the stairs leading to the basement and I abruptly released him. I wasn’t afraid that he would try to toss me down the staircase I just suddenly became overwhelmed by the exchange.

Mom and me raced out into the front yard and waited while the ambulance and police arrived. By this time mom’s heart was wildly beating and she was complaining of chest pains. It didn’t sink in that she might be having a heart attack.

Within moments my cell was ringing and the rest of her grown children began arriving.

The ambulance arrived moments later and began administering first aid to mom. I was really hoping that she was just overly stressed at the situation and nothing more. For me everything moved in a blurring motion. I’d just beaten up my dad and the cops were on their way. Would I be sent off to jail for beating up my dad?

The police arrived and as I spoke to them I began to cry uncontrollably and then suddenly I couldn’t breathe and collapsed into the ground.

Mom was ushered into the ambulance and whisked away to the nearby hospital. And as I lay on the grass, I remembered thinking about how much I just wanted to stand up fully believing that I was okay. The medics all worked around me poking me, prodding me, taking my temperature, my blood pressure. It was all surreal. This one young EMT asked me a serious of bizarre questions such as did I do drugs or did I drink.

It was quite insane.

So finally the moment came for me to be placed into the ambulance and taken to the local hospital. I was just lucky that I was to be taken to the same hospital as mom because it would allow me the opportunity to learn about her condition.

As soon as the ambulance attendants asked me to stand I knew that I was still in the woods because the world started to spin. They placed themselves on either side of me and helped me into the back of the vehicle.

I arrived at the hospital and sat in a wheelchair and waited for the doctor to see me. Mom lay on a gurney just a few feet away from me. She was surrounded by all my sisters. She looked awful. I learned the next day that she had suffered a mild heart attack brought on by the stress of everything that transpired that night.

A few hours passed and eventually I was moved to a semi-private area to wait for the doctor to arrive. By this time whatever had caused me to collapse on the front lawn hours earlier had passed and I was well enough to leave the hospital. It was near four in the morning by then.

I spent the night at Elaine’s house. I was so tired that I fell right asleep. The next day she came to get me and we went to see mom at the hospital. We weren’t the only ones who had that idea.

When Elaine and I arrived at mom’s hospital room the rest of my brothers and sisters were there. It was pleasant because this was the first time that I’d been alone with just my brothers and sisters since I was probably 12 years old.

Mom stayed in the hospital for nearly the whole week. I refused to go back “home” for the remainder of that week. I knew that I couldn’t face dad knowing what had happened between us and knowing that he wore a black eye that I had caused.

I can’t believe that this all happened last Saturday. Dad was taken into psychiatric care just a couple of days ago. It’s nearly 2 pm and it’s Saturday again.

If it weren’t for the support of friends, I think that I would have gone off the edge myself.

I have to leave now. I gotta catch a bus and go see dad. Things weren’t suppose to turn out this way when I was a kid. But life is never how we want it to be I guess. Once again I’m fighting back tears here.


July 16, 2006

I woke this morning, jumped in the shower and patiently waited on the steps for mom and my sister, Elaine to arrive to take me to church. I’d moved out of my parents’ home and taken up temporary residence in my sister’s home while she stays with mom to take care of her.

Being at Elaine’s house provides a bit of a break from reality but only slightly. My cell will ring and it will be one of my siblings or mom wanting to get information about dad. But at least it is better than living back at mom and dad’s house.

Elaine and mom arrived and the three of us headed for church. In the car Elaine informed me that she was going to see dad later on that day and wanted me to come. I braced myself and quietly told her that I would join her. None of my siblings seem to realize that I was just as affected by my dad as mom was.

After all, I did collapse from exhaustion that night.

Wasn’t that proof enough?

The day after mom was admitted to the hospital I was hearing stories about how my siblings and grown nieces and nephews were angry at me for getting into a fight with dad but that anger quickly evaporated when they learned the truth about what really happened that night.

Church service ended and in the car ride back to mom’s house Elaine once again told me of her plans for that day.

“I’m going to see dad later. Are you coming?”

I thought for a moment. Deep down I really didn’t want to go. It was all really exhausting. I’d been on an emotional rollercoaster ride since that night and try as I may I just could not get off. No matter how much sleep I got I was always constantly tired.

“Yes, I told you earlier,” I said with a twinge of anger in my voice.

At mom’s house I made a quick sandwich from the chicken I’d helped barbecue the night before – the first time in my life that I had ever attempted to barbecue anything. I actually thought I did okay.

Elaine and I said goodbye to mom and as the car backed out of the driveway I was once again worried about seeing dad.

Mere moments after arriving at the hospital I could tell that dad was more agitated than ever. Elaine and I sat down and dad began in on there whereabouts of mom, wondering why she was still in Regina. This, of course, led him to insist that she was there seeing her boyfriend.

That was enough to set me off.

I abruptly announced to Elaine that I was leaving informing her that I couldn’t deal with him anymore.

I realize that it’s abuse. He’s abusing me by telling me these horrid lies. I also realize that it’s the disease and not my real dad but somehow that just isn’t enough for me to forget his actions.

I told mom about dad’s actions today and informed her that I’m likely not to go see him for quite some time. She told me that this was okay and that I shouldn’t have to put up with that nonsense from him.

I’m struggling with being a good son again. Not to mom this time.

But to dad.


July 19, 2006

It’s strange how something out of the blue, a voice from the past will calm me. Last night Jerrod came over for dinner. Back in another time Jerrod was one of my youth at my church where I was youth leader. A couple of months ago I sent him an email and he and I formed a present day friendship.

He was just fourteen back then, a typically shy, insecure young boy. I knew that I was having an effect on him. I can remember how this quiet kid slowly came out of his shell as that first year of youth group progressed and towards the end of that year he had kind of attached himself to me.

The year I retired as youth group leader Jerrod had stepped up to be a leader in training. Five years later when I’d made a special return to my old church. I saw in the weekly bulletin that he was listed as the youth coordinator.

I emailed him later that day. We’d gotten together for breakfast the following Sunday and eventually formed a friendship.

Around 4:30 pm I was itching to start cooking. I waited until fifteen minutes before 5 before I began preparing dinner. It took me 45 minutes from start to finish. I still love to cook. Cooking acts like a sort of healing tool with me. I get wrapped up in cooking the chicken and cutting the vegetables, getting the potatoes ready. It’s all very healing and therapeutic.

The house has become eerily quiet since dad’s departure last week. Last night Pam called me and informed me that he was finally placed in a ward. I’m still not willing to go spend time with him. I have just too much anger towards him because of the way he treated mom.

Jerrod arrived shortly after 6 pm and we enjoyed dinner. We laughed as we ate and thoroughly enjoyed each other’s company. I’ve known that kid since he was fourteen and at 21 I must say that I am very proud of the man he’s grown into. We talked deep into the night sharing stories about our experiences. We laughed, grew quiet as we got serious. And as we continued to talk we bonded even further. I know that Jerrod absolutely loves spending time with me. I can tell that I’ve become like a sort of big brother for him. He told me last night that I was the one person that he felt close enough to share anything with, any detail of his life. And last night he shared a lot of personal details about his life.

For me having this young man in my life has let me shift the focus of my life from the pain of life with my dad to the joy of watching this young man begin to spread his wings in preparation for taking flight.

Towards the end of the night I gave him an eagle feather and bestowed a traditional name upon him. I also said that as long as he kept that feather he and I would always be brothers. I’m not exactly sure how long this will continue, this friendship. I continue to benefit from it as I know Jerrod does.

I feel pretty blessed to count Jerrod as my closest friend. It’s this friendship that is allowing me to maintain my sanity. It’s the one thing that is holding me together.

Having Jerrod in my life lets me focus away from dad and home and the pain that this brings. Having Jerrod in my life is a lifeline and I’m pretty grateful for his friendship.


July 20, 2006

My sister called the house this morning. She was at the hospital visiting our dad. I could hear him talking in the background. I totally didn’t expect her to hand the phone to him but that was exactly what she did.

“Here, dad. Here’s Rich,” she said.

I instantly braced myself not sure what I would say and how I would react to hearing his voice. He came on the line and the moment I heard his voice a part of me was completely relaxed. It was his familiar voice, bold, deep, gruff, and distinguished.

I knew that I had to carry the conversation so I did my best to make small talk. I also knew that I had to do my best to carry my words in a very careful way with him now.

Last night I commented to mom that just in the past couple of weeks he has gotten increasingly worse. Conversations with him are now a crapshoot. I absolutely never know what to expect.

“Did anyone come to see you, yesterday?”

“No, no one came to see me at all yesterday,” replied dad.

I knew this wasn’t true because my older brother, Derek had come to the house last night and he’d informed us of his visit with dad that afternoon. I knew that I shouldn’t have been surprised but still. Hearing dad say that no one had come to see him yesterday completely broke my heart.

It was enough to bring tears to my eyes.

I did my best to not let my voice betray me and carried on the conversation. But the more I spoke to him the more it hurt. Even thinking about it now is making me cry.

He informed me that he had no idea why he was in the hospital. I’m not sure if that is the worst part, him not knowing that he is even sick.

“I gotta go now, dad,” I said. I was unable to maintain my composure. And as I hung up the phone I burst into tears. The greatest, strongest man I had ever known had been crushed to dust. Superman without his powers.

You cannot imagine the true magnitude of this loss unless you experience it for yourself firsthand. You don’t know where to turn and where to look to. You just feel completely lost. Mom and I talked last night. She told me that she didn’t expect things to turn out like this so quickly. The thing is, none of us had prepared ourselves for this moment. None of us knew how hard this would be, how devastating it would be to carry on. He’s alive and well and yet he’s already gone.

As I write this particular entry I am crying hard, bawling my eyes out. I feel so incredibly powerless, so amazingly lost right now.

I really don’t know what to do anymore. I don’t know how much more I can take of this. I just…I really just want this ride to stop.


July 22, 2006

It’s Saturday again, just after 7 pm here. The house is fairly quiet. My brother just dropped me off and I’m here alone. Today has been okay. Yesterday, however, was fairly strange. Since her heart attack I’ve been helping out more than usual. I’ve been preparing dinner, cleaning house, driving her around to pay bills and stuff. But that wasn’t the weird part. The weird part was that she was talking to me about things that she used to talk to my dad about.

“We need groceries,” she said.

That used to be something that she said to my dad and then the two of them would go off and do those kinds of activities. Somehow I’ve been roped into that role, the husband role and truth be told, that really freaks me out but not in how you might think. It just destroys me because I’m suddenly afraid that I’m never going to able to leave here. Ever.

I’m going to be 60 years old taking care of my 90 year old mom and that will have been my whole life. Living at home, never having had a life of my own. It is completely and totally frightening.

We got a couple of puppies yesterday and as I had feared, I’ve become the one to take care of them. I think that the one saving point for me is that Elaine is here too. Her presence makes things so much easier on me.

But unfortunately, it does nothing to erase that fear.

Last night I woke at 2:30 because I was thirsty. After I quenched my thirst I came back down stairs and watched television for awhile. At such an early hour the only thing on television are infomercials and music videos. Not interested in what sellers had to offer I watched Canada’s version of MTV, Muchmusic. I was feeling deeply sad about my situation. As a Christian I’m taught that at times that are darkest and most hopeless we are supposed to praise God and give Him thanks. Last night I was close to that point.

A beautiful video came on last night about a woman who was singing to her older mom and in the video she was talking about taking that last final journey. In the video the mom reaches up and gently touches her daughter’s face and as she does this the daughter starts to cry. I watched the young woman cry and started to sob myself.

I felt completely alone and totally abandoned. Still do. I’m 40 years old. Has life passed me by?

I’m struggling to figure out what all this means. 8 or 9 months ago I felt blessed to be able to take care of my parents. But now my dad has nearly completely disappeared from my life. My mom slowly recovers from her internal wounds and lately, instead of feeling blessed, all I feel is robbed.

What kind of a son only feels selfish thoughts at a time like this?

The thing is, though. Things could be so much worse.

Sure I’m sitting on one of the lower rungs of the ladder but I’m not at the bottom. I mean, I do have a roof over my head; I do have food on the table, a warm comfortable bed to sleep in at night. I have my health, both physically and mentally.

I guess this is the part where I thank God for all that. Well, okay.

Thank you, God for all those blessings.

Just wish I didn’t have to fall this far to have to appreciate those things.


July 26, 2006

Today my mom encouraged me to go see him. I didn’t really respond. I just sort of grunted. I’m still not ready to see him. I don’t know why I refuse to see him; I just know that I’m not able to just yet. I know that a large part of me not wanting to see him has to do with how he treated me over the past several months.

All along I kept telling myself that this was the disease and not the real him but in the end that did nothing to erase or even cushion the pain and abuse that I ultimately had to endure.

I’m so incredibly tired of everything. I’m so desperate to move out that I get upset if something wrong is said to me or if I’m instructed to do something.

“Richard, fix my bed.”

Elaine had said that to me this morning after she woke up. She was referring to shifting the mattress of the futon that she now sleeps on each time she spends the night. But then when she walked in and saw that I had left the covers lying in disarray on the futon she got upset and questioned why I hadn’t returned the futon into sitting position. It’s not that I don’t mind helping out because I do when it’s needed. It’s just that I get extremely annoyed when I’m instructed to something. It always feels like someone has given me an order and I always inevitably feel like I’m a young boy again.

I still can’t see the end of all this. I can’t see the proverbial light at the tunnel’s end just yet which only means one thing. I’m nowhere near the end of this journey. Some days I feel as though I’m drowning. I look up as the water covers me and as I sink I struggle to gain control. And that’s when I realize that this is the real monster I’m facing.

I’m not in control of my life and there is absolutely nothing I can do about it. I’ve made plans to go back to work as a teacher aide in a school for the fall but the school year doesn’t begin for another five weeks.

Five more weeks of this.

The coming autumn promises new things for me. I’m returning to being a youth leader at my church five years after I’d “retired” from those activities. I can’t see me not getting a job as a teacher aide, 15 years after I’d last held that position. And I’m hoping to move into a duplex for the beginning of the New Year.

But all that is a ways off and right now I’m still lost deep in the forest.

Elaine also tells me that she feels overwhelmed and used during all this. I don’t think either of us would feel this way if our other siblings contributed. But, unfortunately, for whatever reason, that just isn’t the case. It is still just Elaine and me.

And lately, more and more, I really want to move on with my life.


July 27, 2006


I woke this morning and the day felt normal. It had a routine feeling to it, like nothing was out of the ordinary. But as the morning slowly unfolded a feeling of emptiness slowly dropped onto me like a thick shroud.

I really feel like I’ve been passed over by life, almost though I wasn’t worthy to have any sort of real life, any sort of normal life. An absolutely big part of that feeling has to do with the sacrificed year – the year that I gave up to take care of my dad and now my mom.

Three weeks ago after that Saturday night I knew I really needed a break. I know that I still need a break. But I think that it’s more than just a simple break that I need. What I really need is a new start. I just need to break away and start over. The thing is though… I’m 40 years old. I’m middle aged (an age that I used to absolutely fear – still do to some extent) and I’m getting passed that point where I can just start over.

Sometimes I wish that I were still just a kid. I look at my nephews and nieces and marvel at their lives, how incredibly simple and stress free they seem to be. Life would be so much easier if I were still 12 years old. But none of us can turn back the clock no matter how hard we want that.

So I bow my head a little, wrap my arms around my chest and press on into the cold, biting, unforgiving wind.

Right now, there isn’t much else I can do.

July 29, 2006

The hospital just called. They had specific instructions not to call here on his behalf but that is exactly what happened. The nurse asked me if I wanted to talk to him. I outright refused. I’m still so hugely angry at him for the way he’d treated me over the past ten months that I’d lived here under the same roof with him.

After I got off the phone I’d tried rationalizing in my head the reasoning for not wanting to talk to him. I know that he just wanted to talk. But I wasn’t willing.

For a moment I’d wondered if this would be the last time that I would get to talk to him. I’d gone through a lot this week with being rejected by my old church. It’s just all still really overwhelming. I’m now at the point where I’m feeling obligated to go visit him at the hospital. He has become more and more confused about where he is and why he is there.

I know that I’m supposed to bury my anger here and just roll with everything but that isn’t always easy.

I can’t write right now. I don’t know how to feel. I actually called the hospital back and spoke to one of the nurses about him. I felt that I had to.

This isn’t how I wanted my life to turn out. At 40 I should have had a house and a car and a job and money in the bank. But that wasn’t how life turned out for me. An experience of racism in 1993 destroyed that path and then bad things began happening one after another and now I’m just trying to make sense of my life and trying to have a life before I get too old.

Some days I just wanted to crawl into a ball and die.

I feel abandoned by everyone. And lately all I can do to take away that pain is cry. I honestly don’t know if I will ever be happy again and that thought is so incredibly scary.

This is pretty dumb but some days I just wanted to wake up and be a little kid again and have a different family and a different life and be a totally different person.


July 30, 2006

Last night in the kitchen Elaine got quite upset with me after the phone call I’d had with dad. She was questioning why I didn’t do the responsible thing with this situation. I don’t think she fully understands why I’m avoiding him and why I refuse to even talk to him on the phone let alone go see him.

Mom told me the other day that I should go see him. Of all the children I’m the only one that does not go to spend time with him.

I’m still not sure if it’s guilt on my part for the physical fight that we’d gotten into nearly a month back or me still being upset over all the abuse that I had to endure over the past ten months. Whatever the reason is, I know that I still cannot see him. I’m just not able to do that. I can’t figure out why but what I do know is that I’m comfortable with this arrangement.

I do take part in the process to get him into a nursing home. I’m willing to be a part of that process. But only that.

There used to be a time when I would do anything to get him help because back then I was the only one of my siblings who was really a part of his disease on a daily, regular basis.

Two months ago I’d completed the fourth part of my journey as a Sundancer. It is a part of my culture that some people must travel through as part of a growing process. For four days the individual goes without food and water and dances beneath the blistering sun from sun up to sun down.

The third day was the hardest. I was sore, weak, tired and very hungry when my parents had arrived. I had chosen to dance for them.

Before they had arrived I’d wanted to quit and just walk away from the Sundance. Seeing my mom and dad I knew that I had to finish. In the native culture historical practises dictate that one must go through an intense journey as part of a growing process and we give of ourselves for our loved ones.

Growing up I never subscribed to that part of who I was. I didn’t really acknowledge that I was Native American. It wasn’t important to me. But as I got older I realized that by acknowledging that it was who I am I was respecting my dad and my mom.

This was why I was dancing for dad.

So I finished my four days of my fourth and final year.

For dad.

But now, I’m not so sure if there would be anything of that magnitude that I would do for him again. Inside I realize that the next time I may see him he may not even recognize me.

Elaine used to believe that the right dosage of medication would bring him back to us the way he used to be when we were kids. I know that this is just wishful thinking. Dad’s gone. That dad that we knew and loved. This version of dad is, for me, not my real dad.

Perhaps that’s why I’m choosing not to see him.


August 3, 2006

Mom finally saw dad today. It was the first time they had been together since that night. This leaves me as the only one who still refuses to see him. A large part of that is deep rooted anger stemming from not only that night but the past year and I still can’t get passed it, no matter how hard I try.

When I was younger I used to fully believe that I would be the one taking care of my parents in their senior years and would want that responsibility. How wrong I was. But am I allowed to feel this? I can’t answer that and no one I know can answer that question for me.

He was supposed to be the strongest person I was to have known. He was supposed to have been my role model for being a man. But I watched him when I was a kid and really didn’t learn anything positive from him.

All I learned is that I was never going to drink nor hit a woman or hit small children. I learned that weak people sometimes turn to alcohol to numb pain. Was my dad weak when I was a kid? A part of me says yes.

The one thing I did learn from my dad was to be powerfully protective of my loved ones.

A part of me knows that he continues to change and get worse. I’m just trying to hold on to the dad that I knew and loved, the dad that knew and loved me. But he’s gone. Even the angry, passionate, sometimes violent dad is gone. All that’s left is a stranger, one that is controlled by medication.

The disease continues to grow in leaps and bounds and its strength becomes more and more powerful.

And I continue to not want to deal with it.

More and more I’m just running as fast as I can away from the disease, trying as hard as I can to look for an escape route out of this nightmare.

I continue to sink deeper in the mud.

No matter how hard I try I can’t stop the days from coming. And that is so bloody scary because his last day is charging toward me like an angry, hungry lion. More and more I want to scream at the top of my voice.

“I just feel so sad for him,” mom said to me in the car a couple of days ago as tears coursed down her cheeks. I just held my breath.

“We can’t change this,” I softly said.

I know, was her response.

None of us can change this and that’s the worst part of this whole nightmare.




August 4, 2006

In less than an hour I’m going to visit him. All that I’ve heard from my siblings and my mom is that he is okay now. Earlier this afternoon I’d told mom that I was finally going to go see him next week. I really didn’t expect to be thrust this quickly into going to go see him.

I know that he has mom on a roller coaster with his behaviour and his comments but she keeps it together and presses on.

I sat in the living room this afternoon partly watching television but mostly listening in on her conversation with him.

“I saw you yesterday, don’t you remember?” she said. A moment later she let out a loud, boisterous stress-releasing laugh. She looked up at me, smiling ear to ear.

“He says that he forgot where he put his memory.”

It was such a classic dad thing to say and it had the same reaction in me. I, too, also let out a loud laugh. Over the years he would unintentionally say extremely funny things. He’d always had a really great sense of humour, only he never knew it.

It was Sherri who’d instructed me to go see him. When we talked on the phone she informed me that he likely might accuse mom of having a boyfriend. I braced myself after hearing that comment. This had been the main reason why I’d walked out on him a few weeks back. I just wasn’t able to let that slide the way my other siblings do.

My uncle came to spend a couple of days with us today. He arrived early this afternoon. As I chatted with my uncle he announced that I seemed stressed. I told him I wasn’t. But then as we continued to talk I slowly released my grip and let him in and told him that I was simply still processing the whole mess.

I haven’t done that entirely just yet. I haven’t fully sorted everything out. I’m sure that this day will come, the day when I’ve fully processed, analyzed and let everything go into the wind.

But I’m not there yet.

And now I’m about to go visit with dad for the whole evening.

I’m not sure if I’m scared or not. In fact I don’t really know what I’m feeling. Mom told me that his medication seems to have steadied his mood and calmed him right down. Three weeks is a lifetime with an Alzheimer’s patient. A part of me is now afraid that he won’t know me.

I’m sitting here at this computer and the more I think about this visit, the more scared I become.


August 5, 2006

I got off the elevator and walked up to the nurse’s station.

“My dad is William George Courchene,” I’d apprehensively said to the tiny Asian woman who sat nearly hidden behind the desk. The nurse looked down at her roster of patients on her floor and then pointed me to my dad’s room.

I turned and then strolled down the small corridor and then wandered into the room at the end of the hall. I wasn’t sure what to expect when I came into the room but not finding him was definitely not what I had anticipated. I shrugged my shoulders, tilted my head and briefly wondered if I was in the right room.

A quick glance around the small room confirmed that this was indeed my dad’s room. On the metal bed board above the made bed were assorted pictures of my nephews and nieces and various members of my family.

I left the room and returned to the nurse.

“My dad’s not there,” I quietly stated. The nurse gently smiled and pointed to the far end of the hall. I looked at the end of the long corridor and saw my dad’s silhouette against the bright sun-filled window. I didn’t feel anything right then, no fear, no anger, no happiness.

Nothing.

It was as though no time had passed, almost as though I’d seen him just yesterday.

“Hey dad,” I boldly announced as I reached him.

For a moment he looked like he had on numerous other occasions, his glasses, his baseball cap. It was dad. The only difference was that he was dressed wearing a hospital gown and hospital-issue pajama bottoms.

“Hi,” he softly said.

I quickly whisked him away into the elevator promising to feed him pizza in the cafeteria. He had questions about mom of course, about her whereabouts. We got off the elevator and ran into a first cousin of mine on his side of the family.

I was actually kind of relieved when we ran into my cousin. It would shift the focus from me onto her. My cousin, Denise, joined us for dinner and she and dad talked while I sat at the table in silence.

It was clear by the expression on my cousin’s face that she knew that something was different with my dad. She later announced that she hadn’t even realized that my dad was in the hospital.

We finished dinner and returned up to the 6th floor just the me and dad. For the rest of the evening he was quiet. He kept trying to offer me the remains of his day-old submarine sandwich.

Towards the end of the evening he and I played cards. I have vivid fond memories of my parents playing cards with my aunt and uncle in the 1970s. Engaging in card playing with dad was wonderful and pleasant. In that brief moment dad was back.

I was glad that I finally made that decision to go see him today.

I said goodbye to him and as I left the hospital grounds I got teary-eyed. I know that the dad I knew and loved is long gone and watching what’s left of him slowly slip through my fingers is more painful that I ever thought possible.

Heading into that visit yesterday I now realize what I was feeling.

I had this incredible feeling of sadness. I talked to Elaine on the phone last night after I got home from the visit. I told her that all of this feels amazingly unfair. She asked me something that really surprised me.

“Do you think we will get some kind of miracle with dad?”

I knew that she was referring to the chance that he would return to us, the dad we knew as kids. I held my breath and answered her.

“He’s gone, Elaine. The dad we knew when we were kids.”

Elaine gasped at my response.

“Don’t say that!”

The truth of it is that yeah, he really is gone. Sure he still knows all of us and physically he is still pretty healthy but the man we knew and loved as children is long gone and this frail, old, confused man who is slipping away from us almost at lightning speed is that dad no more.

I told her that we should treasure where we are now and that we should hold on to this moment as tightly as we can.

“He still knows each of us,” I said.

For the moment that’s the best that we can hope for.


August 7, 2006

When I left him the last time I wasn’t sure that I wanted to see him again. It was just too hard to be there with him. Physically he is fine but mentally he’s a complete mess. His memory is completed mixed up.

Our memories are like puzzles. When we are younger we are able to have all the pieces fit together neatly and in the proper order. As we get older we sometimes tend to have trouble retrieving all the necessary pieces to complete the puzzle.

With dad all the pieces in his puzzle are completely jumbled and in many cases he has created completely new pieces for his memory puzzle.

I saw him again this afternoon. As I sat there at the table across from him what Elaine said about a miracle came back to me. He really is gone and that miracle will never come.

I thought about breakthroughs in medication for patients suffering from this disease. I think that those drugs are simply meant to prolong the inevitable. There is no cure for Alzheimer’s disease.

This made my visit this time even more difficult than my last visit. I sat there listening to him talk about events that weren’t real but clearly real to him and suddenly it just became too much and I got teary-eyed. I looked out the window and for a moment considered getting up to go off somewhere and just let it all out.

I was considering pretending to go make a phone call to do this. But I didn’t. I just sat there and after composing myself looked back at dad and continued to listen to him as he talked about events that were not real.

I went with Joel this time. At 22 years old Joel has grown into a remarkable young man. I am very proud of him. He finally has a grasp of this situation. He knows that his grandpa is very sick. But I also don’t think that he has had time to completely process it yet.

“I don’t think that he even knows he’s in the hospital,” I said to Joel as we drove home.

“Why?” Joel responded.

“Well, you know he’s not all there anymore.”

“Yeah,” my nephew quietly responded.

His older brother, Jonathan took it really hard when he finally realized that his grandpa was slowly slipping away but now Jonathan has come to grips with reality and is coping like the rest of us. Joel isn’t there yet. He’s most likely in a state of denial.

This visit was especially hard on me and I’m not entirely sure why. Elaine said that it’s the family disease. I can clearly see why. It has completely and totally affected each of the adults in our family. We’re dealing with it in our own way but it’s changed all of us.

A few short weeks ago when my nephew had rushed my dad to the hospital because dad had had a dizzy spell I sat in the waiting room in the early hours of the morning with my youngest brother, Wes. He’d looked as stressed out as I felt.

“When is this going to end?” I heard him ask himself softly.

That’s how I feel right now. I can’t see the end. The ride just continues.


August 10, 2006

So I woke this morning and I realized that I had to get on with my life. Thing is, though, that’s really difficult. There is a possibility that I might get some extra work with my mom. Mom picked up a contract from Red River College and I could probably talk my way into helping her out with typing and research and stuff.

This would give me just an extra bit of cash, nothing really significant, certainly not enough to use to move out and find an apartment. I also might be able to get work through Elaine’s group home.

I have a lot of possibilities right now but nothing solid. And that seems to be my biggest problem. I don’t have anything concrete to look forward to. I just wish that I knew that things on the job front were completely stable. If I knew that this was the case then I would be able to fully move on.

Yesterday I had had a really sad day. I was just feeling really rundown pretty well the entire day. Some days I get that way. Some days I just feel really defeated. And on days like this I feel like the only person on the planet. I feel as though people I pass by can’t even see me.

This is pretty stupid, I know. Teens are the only ones who are suppose to feel this way, right? But here I am forty years old and feeling completely abandon.

Jerrod called me late last night while I was in bed. We talked for about fifteen minutes. He made me laugh last night. By the time the call ended we’d made potential plans to get together for a movie sometime this week, plans for him to join me in a sweatlodge this September and potential plans for us to go camping before the end of summer. I got off the phone, rolled onto my side and wore a bright, refreshing smile.

That one phone call completely turned the entire day around. I was able to drift off to sleep fully at rest.

After the phone call I laughed to myself.

“My best friend is 19 entire years younger than me,” I softly said to myself.

I guess I’m pretty important to Jerrod Kusyk.

He sees me.

Sometimes I think I can begin to see the light at the end of the tunnel. Sometimes I think that my time in the holding cell is almost up. And then for the first time in five entire years I’m going to get my life back. But then…sometimes it feels like it will never end.


August 13, 2006

Some days I feel selfish. Some days I feel guilty for feeling like I deserve the best out of life. And some days I just feel foolish for not knowing that I should be satisfied with my life.

I continue to try to figure out what I am meant to do in life.

There was a time when I thought I knew what I wanted to do in life. There was a time when I knew I had everything planned out, or so I thought. When I was a teenager growing up I never had girlfriends. It used to get to me quite a bit until I began convincing myself that when I became an adult all that would change. I would find the right woman, fall in love, get married and have a family. Well, I finished high school and waited for that right woman to come along. It never happened.

But the thing is I think that maybe I’m supposed to have stayed single. And given how God has used me in the past twenty years that notion has proven true. I’ve been there not only for my parents but also the rest of my siblings on various different occasions.

I used to think that I had a really rough, bad upbringing. Dad was an abusive alcoholic when I was a boy. He would often beat mom in a drunken rage. Quite often he would turn his assault on his children, me included. Even during moments when he was sober his anger would still gush through and he would get vicious with me, sometimes over little things like causing my then six-year old brother to cry.

Once when I was about nine years old I’d made my kid brother, Wes, cry. I remembered that I ran up into my bedroom, scurried under the bed in hopes that he wouldn’t find me. He did. He stormed into the bedroom, flipped over the whole bed, picked me up and in one motion threw me hard across the room into the wall.

I used to think that I had a rough childhood. But when I began hearing stories of his childhood in the now infamous Canadian residential school system that way of thinking changed. I now count myself lucky, and even privileged to have been spared that hell that he grew up in.

Compared to his childhood, mine wasn’t so bad.

Now in the twilight of his life as he heads to where he is going I can still be as forgiving as I was on that day that I forgave him for all the years of beatings and torture that I had endlessly endured daily.

I was about 30 years old. I just decided to confront him about my childhood and outright tell him that I loved him and I forgave him.

“I love all my kids,” was his response.

Even in the confusion of this damn disease I know that he still loves us. That love will continue to be there even when the time comes when he no longer knows us. That will continue.

The most important thing I’ve learned as an adult is to stay here and to be present. Some of us suffer terrible, horrific tragedies and as we get older these awful moments stay with us because we stay in that moment reliving it over and over in hopes of finding a new, happier ending.

That ending never comes no matter how many times we relive the moment. In fact we are the ones who keep us trapped inside the walls of that pain. Those who have wronged us and hurt us so deeply have all moved on. I learned that with dad. He has completely changed.

No longer is he the monster I feared as a nine year old boy.

All that remains is the frail, old, quite often scared man who continues to float farther and farther away from us with each new day.

“You won’t true poverty until you have lost a parent.”

My uncle Ken had once said that to my oldest sister, Elaine.

He is still alive. He may not be mentally well. But he is alive. And each of us needs to soak up every frame of our time with him.

But the thing is, time often has a way with speeding up without warning and I know that at the rate the disease continues to devour him, he won’t be around much longer.


August 16, 2006

Sema, our homecare worker for dad, called today and talked with mom. She mentioned to my mom that her department has made arrangements for dad to be placed into a nursing home no later than the end of the month. Sema informed mom that dad was going to be placed into a separate apartment-type room.

As I write this I’m remembering my Aunt Ellen and how she used to live in a small one room apartment in her nursing home. Before she died mom and I would often pick her up Sunday mornings for church services. I remember that her room was so incredibly tiny and sparse in its furniture – just a bed, television, and a small desk. And I’m thinking now that this is what awaits dad, this future.

Sema also said that he needs round the clock supervision because he now has an advanced stage of dementia. In the six or seven weeks since leaving us his disease has grown dramatically.

One of my best childhood friends came back into my life 25 years after we’d lost contact. He’s my age now with a wife and a teenage daughter.

I think that God brought John Geary back into my life for a specific purpose just as He dropped Jerrod Kusyk back into my life. John emailed me today and told me a story about how his dad had dropped dead of a heart attack just four years ago. When he wrote that a part of me felt guilty because my dad is still alive and physically healthy.

When I told John that this disease is going to one day take my dad’s life he told me that I need to take the time to make my peace with my dad and say what I need to say to him. The thing is, though I did that about a decade ago and as ghoulish as this might sound I’m going to be okay when he does eventually die.

But John’s advice did me a world of good. Back a quarter century ago John and I were very close friends.

We were just little boys then, 12 or 13 at the time. We’d met in the same class in 7th grade. When we’d lost touch he was one friend I’d thought of from time to time over the years. Thus far he and I have just communicated through emails. We haven’t worked up to verbal conversations just yet but if that is meant to be then that will happen.

Of all the friends I’d had over my childhood and adolescence I’m glad that I’m able to regain his friendship.

I know that dad is dying. A part of me wants to ask John how he got through the death of his dad. But to do that would mean that I would have to face this and for the moment I want to keep running, at least for a little while.

Some days I think that I can see the light at the end of the tunnel, other days it becomes an optical illusion and I know that I am nowhere near the end of this moment. When I look into the tunnel on those days all I can see is empty darkness.

Some days I just don’t want to think anymore.

Some days I just want to let this completely wash over so I don’t have to fight anymore. But I know I can’t do that. I have to keep fighting because I know that this is far from over.


August 17, 2006

My aunt Terry just left the house. She’d spent a couple of days. For the past few years she’s been in a constant state of travel. Her husband – my uncle Edgar, suffers from ALS – Lou Gehrig’s disease. My uncle’s body has essentially shut down and machines are now keeping him alive.

But she keeps faith that somehow, someway he will get better and return to the way he once was. My uncle is in a geriatric ward at a hospital here in Winnipeg. His home is on a reservation about 90 minutes northeast of here.

When he was moved to the hospital about two years ago, my aunt began the daunting task of visiting him on a daily basis. So for the past two years she’s literally lived out of her brown van, sleeping nights at the homes of one of her seven daughters or here at my mom’s home.

My uncle had been diagnosed with ALS several years ago. I’d watched the disease slowly progress and slowly eat him, piece by piece. I’d only managed to visit my aunt and uncle perhaps once every five months or so and each time it was always a shock to see his condition.

I’ve only had a peripheral view of his children’s reaction to this disease. I’ve never really spoken to any of them about how they handled it but what I know now is that none visit him in the hospital.

I’ve heard from my mom that some of my aunt and uncle’s children believe that their dad is already dead and that the person lying in a perpetual vegetative state hasn’t been their father in a very long time. Even my mom often wonders how my aunt could continue on visiting her husband knowing that he is in that physical condition and will never get better.

I should be learning something her from my aunt’s circumstance.

This morning I’d asked her how her husband was.

“Pitiful,” she answered.

Pitiful. I guess that she recognizes that this situation is not for the best. I think what I’m learning from this situation is that my dad is physically alive and physically healthy.

John Geary told me that he now regrets not being able to tell his dad the things he needed to say. I did that with dad. I guess in that respect I’ve been given a gift by this disease.

He knows, John. Your dad knew that you loved him.


August 19, 2006

Dad’s absence from here has thrust me into a new role. I’m not making any income at the moment so I’m unable to provide in that fashion. But I am now handling tasks that were left up to dad a generation back.

People would call it responsibility. On the surface it’s just things that need to be taken care of around the house such as mowing the lawn, taking out the trash the night before trash day, and so on. But what it really boils down to is that these are dad things that dads take care of at home.

I’m not a dad at the moment but I do dad-type duties.

And I fully believe that had this situation with dad’s medical condition not arose I would not be now performing these duties.

My oldest brother, Jeff is an alcoholic and he knows it. The thing with him is that he refuses to get the help that is clearly available. He chooses to drink and as such is not up to the challenge of carrying out the chores that I now take care of.

My only younger brother, Wes, has a wife and two small boys. He lives in a life of his own and with his world set up the way it is, he can clearly be excused from taking care of things here at the house.

My other older brother, Derek, has three boys all under the age of 13, the youngest being just five years old. He lives in a perpetual tornado with that many young boys under his charge. Derek is divorced and obviously has his hands full with his boys so he, of course can’t take the time out to come over here and help mom out with things that need to be taken care of around the house.

I still live here, at least until I can find a job and put away some savings. Helping out is the natural thing to do. Were I not to help out would go against everything and every part of who I am.

It’s the responsible thing to do. Dad taught me that through his actions once upon a long time ago.

“When he didn’t drink, he was a good man,” mom once said.

I would add to that statement….when he wasn’t angry and in a rage as well.

Yeah, dad had his good moments. This afternoon I sat in the living room listening to an old Crosby, Stills, Nash and Young song about teaching children well. Elaine was in the living room with me. The song brought tears to her eyes. She told me why she was crying.

She misses him.

So do I.

But I’m glad that while he still was dad, he taught me well.


August 24, 2006

I’m the last one in my family who really isn’t making an effort to see my dad and that’s become somewhat of mystery for me. True the last time I visited him was really hard but I’m not sure that this is the real reason why I’m not seeing him or choosing not to see him.

Two days ago I got off the phone with Jerrod and then suddenly I started to cry really hard. I’d allowed myself to have another person get close to me. I cried because I suddenly thought that I would lose Jerrod once he started school and I just wasn’t prepared to be abandoned by yet another person I grew to love.

With dad I feel that I’ve already been abandoned by him. The dad I knew and loved when I was a boy is gone. He left. The thing is, I know that dad didn’t choose to lose himself and that it was something beyond his control. But I feel like I have been ditched by dad just the same.

Growing up I so wanted to be close to my dad. I really did. But dad never let me in. He never opened himself up for me or anyone of his kids to get close to him. I couldn’t wait to grow up so I could be a dad and be close with my own children. My life didn’t work out that way.

I think that deep down I’m just scared to go see him. The fear is that when I see him he will be even farther away from my shore and I won’t be able to recognize him and worse still, he won’t be able to recognize me. A few months ago when I saw this on the horizon I realized that each of my brothers and sisters would have to make an effort to see him. I didn’t realize that this would most apply to me.

The last time I saw him I had to fight back tears.

My life is slowly turning a page. I’m starting a new job either through Elaine’s group home or as a teacher’s aide at my old high school. And when I save up enough money I’m moving into my own home.

Things are changing for me. But the past still remains clinging to me like an old familiar coat.

I’m still struggling with all this. If I had been better prepared for this moment perhaps I would have been handling this better.
I talked with mom this morning and she told me that dad knows that there is something wrong with him. He knows that he is not well. He realizes that physically he is fine but mentally he’s not. And it gets to him.

He didn’t recognize that he was sick when he was still living with us. But then again he was much healthier back then because he was completely focused on mom. She was his entire world, his outside brain. When that was taken away he rapidly tumbled downward.

I can feel that he won’t be around much longer. And that’s so incredibly scary. I am a good man because of him. He raised me to be a good man.

Right now tears are streaming down my cheeks as the reality of this steam rolls over me.

Help me, God. I don’t know how to get through this.


August 28, 2006

In the beginning it was supposed to be my sisters who were to take care of mom in the weeks and months following her heart attack. And at first, Elaine was there helping out but my other sisters didn’t help out at all. When Elaine stopped coming by on a regular basis I was left to be the sole caregiver for mom and it’s gotten to the point now where I’m so incredibly exhausted by the whole process.

More and more I just want to leave forever. Not only do I want to leave my family but I also want to leave this world for good.

A year ago I came close to ending my life. It happened at the end of a very bad week. I remember it quite clearly. I woke up thinking that I would have a “Richard” day – a day completely devoted to taking care of and entertaining myself. I was absolutely determined to have fun that day.

The day started out okay but on the bus ride to the movie theatre that morning I began to think about my life and about all that I seemed to be missing.

Things went downhill from there. The rest of the day is now a blur. I do remember standing on the midtown bridge looking down at the river below, tears soaking my face, my body heaving as I uncontrollably sobbed.

I had had enough of life and just wanted to leave. But God needed me to stick around which is why He sent that man to stop me that day on the bridge. I looked up and there he was, a complete stranger with the most compassionate eyes and soothing voice I’d ever heard.

He listened while I poured my heart out and then just like that he was gone. I never saw him again. I don’t even remember what he looked like.

My puppy just wandered into the computer room. She loves me unconditionally. There is a saying that I’ve seen a couple of times. Let me be the person my pet thinks I am or something to that effect. If my puppy knew just how messed up I can sometimes get she probably wouldn’t like me very much.

I think my puppy picked up on the pain I was feeling this morning and stuck near me to keep an eye on me.

My life isn’t my own. And I don’t know what to do about that. During times like this I tend to block out good things that have come my way like Jerrod Kusyk. Jerrod is such a great young man. He represents the great work that God accomplished through me.

Having Jerrod in my life just isn’t enough to get me thinking that my life is in a good place. There is just too much stress. Yesterday afternoon I’d gotten so upset with everyone – mom, Elaine, my niece Dawn because my life is still not my own.

I just want my life back. Is that such a bad thing to want?


August 29, 2006

I got off the bus and as I headed toward my doctor’s office I suddenly realized that it was directly across from the hospital where dad was staying. I thought for a moment as I waited for the light to change. It wouldn’t be right to not visit him. After all, I thought, I am right here.

Memories of the last visit surfaced and how difficult that visit had been. Both Elaine and mom have asked me a few times over the past few weeks why I’m not going to see him. Each time that question was posed I came back with the same answer.

“It’s too hard.”

“For goodness sake,” mom had answered me one time. “He’s not gonna bite you.”

I think that this was the problem. All my life I had known this man to have a hard edge to him. I had always known him to be constantly mad at life. It was just who he was and I’d accepted that behaviour and loved him just the way he was. I’m not visiting him as much as I should because of how much he has changed.

I think deep down maybe I’m hoping he will snap at me and get angry the way he’d done a billion times before.

Maybe I’m hoping that some part of him will survive this battle with Alzheimer’s disease. The last time I spent time with dad he was lost in a whirlwind of confusion and it was so incredibly difficult to observe because I knew that this was not who he truly was.

Sitting with him that last time made me miss my real dad so much.

I reached the other side of the street and decided that I should visit him out of respect more than anything else. Besides, I thought again as I entered the building, how would I explain to my mom why I didn’t visit him when he was right there. There was no way I could justify not paying my dad a visit.

After my doctor’s appointment I headed across the street toward the hospital. I passed through into the hospital as the front glass doors slid open. I stopped for a moment and looked to my left into the lobby area of the cafeteria to see if dad was sitting at the tables with one of my other family members. When I didn’t find him I exhaled and headed on into the belly of the hospital toward the elevators. What floor was he on again? I asked myself. Sixth or seventh floor? For a moment I felt guilty about not remembering this fact. It told me that I should come see him sooner and more often. As I turned the corner I was taken by surprise to see him coming down the hallway.

“Hi dad,” I cheerfully said. He looked up and smiled.

“Hi,” he said.

The last time he’d looked empty and lost. This time something was vaguely different.

His nurse told me that she and my dad were just going for a brief walk outside. I’d immediately made small talk telling my dad that it was slightly cool outside. I’m not sure why I made the comment about the weather. Was I worried that dad would try to escape and run home?

The three of us headed back toward the entrance where I’d entered moments earlier. As we walked I made the suggestion that we just sit at the tables in the cafeteria lobby. Just then another nurse suddenly appeared and dad stopped to greet her. I stood and as I took this in I thought to myself that he feels comfortable here. These people are his world now. As he said goodbye to that nurse he did something that I’ve never see him do before.

He hugged her.

In my just about 41 years on this planet I’ve never once seen him hug anyone, let alone someone who is so far removed from his family. It was then that I realized what the change was. It was his personality. He’s completely changed, even from a couple of months back when he was still under his own roof.

The rest of the hour that I’d spent with him went fairly even. He was having a good day. There were no moments where he was so gone that it sent spikes of pain into my heart. I left him to head home after our visit and said something to him that up until the past couple of months I was never comfortable enough to say.

I told him I loved him.

But even that sentiment was out of place. I was saying I love you to this new version of my “dad”, a man who now loses layers of himself daily. I haven’t processed that visit just yet and right now I don’t know when my next visit will be.


September 2, 2006

My niece, Dawn, got married last night. It was the first family event of this size without dad. In the 1970s when I was a boy events such as this usually ended with all night drinking parties at my parents’ home.

I can remember watching my uncles and aunts stumbling down the hallway heading to the washroom or arguing on into the night with my dad about the smallest and silliest of topics.

It was a part of my dad that I never loved. Instead I just tolerated it and told myself that when I became a grown up I would never engage in such activities.

Thirty years down the road I kept that promise. I grew up never wanting a part of that life. As a kid those memories burned a deep scar into my heart but as I got older I never carried that scar with me. I let it fade with time.

Dad sat alone in the hospital while we ate and drank and celebrated deep into the night. I feel guilty now because I know that he didn’t cross my mind once. It was only as I videotaped a wedding well wish from my mom that I felt his absence.

This is life moving on. Life has to. I know it does. We can’t simply push the pause button while we wait for this part of life to play itself out. There will come a day when he will physically leave us. I think that by moving on now we will be perhaps better prepared for that day.

He’s already so far gone from my life that if I were to physically lose him it would not have as deep an impact than if it were to have happened a decade ago.

I’m ready to physically let him go. He’s finished moulding me. I’ve learned everything I can from him. I’ve said everything I needed to say to him. He knows I’ve forgiven him for the hell he put me through. And more importantly, he knows I love him.

I also finally know that he loves me too.


September 7, 2006

Today I realized that this was the first full day where I began walking forward. Yesterday my job started and today was the first full day where I banked hours toward me moving on with life and regaining the many missing pieces that had been lost for a very long time.

I won’t get a full paycheque until the end of the month. And I couldn’t be happier. By then I will have found an apartment and can use the cheque toward moving in. But setting my sights on a target sitting in the not too distant future doesn’t mean that the past doesn’t leap onto my back and try like mad to keep me in place.

My oldest living relative died yesterday, a great aunt who was 91 years old. When I first learned the news I just thought that it was simply her time but as I unearthed more of how and why she died I began to not only see what lay in the wings for dad but also the rippling effect it will have.

Aunt Lucy died in a nursing home, the kind of nursing home that waits for dad. I’m sure that all reputable nursing homes do what they do to perfection – caring for the elderly but Aunt Lucy never wanted to live in a nursing home and she allowed herself to slip away. A few months ago when dad thought that he was being institutionalized he ran away in fear and disappeared into the city.

Growing up he was always in charge and in control of his life. And now that things are so incredibly different how will he react to this new situation with him being at the polar opposite of being in control?

A co-worker once said to me that guys like my dad, guys who work their whole lives at manual labour jobs don’t last very long once that is taken away from them. Dad stopped working at least ten years ago so that was obviously, thankfully, not the case, but this situation is different.

Aunt Lucy chose to die because she felt that being put into a retirement facility took away her life, her freedom, and her everything. She knew that there was nothing left for her and she chose to leave. So now I’m left wondering how dad will cope when he is finally put into a retirement center.

Is he going to chose to leave to because his freedom and his ability to control his life are gone? I don’t know the answer to that question and that scares me but what scares me more is knowing how much more the disease will ravage his body. I was told that victims of this disease literally eventually forget everything, even remembering to breathe.

I’m not sure if I want dad to slip away like that. Sure he had bad moments when I was growing up but he also had good moments and those combined made him dad, my dad – the only dad I have.


September 9, 2006


I did a bit of yard work today and as I worked I thought back to last summer and how I used to watch dad putter around the yard deeply engrossed in his activities. As of late I’m itching to have my complete freedom. The worst side effect of this damn disease has got to be what’s it has directly done to my life, specifically my state of mind.

I sat on the deck ripping apart a large cardboard box. The early September sun bathed me in balmy sunlight. I flashed back to all the times that he had done this type of activity over the years and I knew; I absolutely knew that I didn’t want any part of this life simply because it wasn’t of my own choosing. This life was thrust at me and I had no choice but to accept it.

I find myself getting angry when faced with my present. I don’t know what to do here to move forward. A few days ago I was excited to be going back to work but that, like everything else in my life in the past year, abruptly fell through. I should have known that going to work for my sister would end very badly.

I want to be angry at dad, I really do but I know that I can’t because that would be extremely absurd and overtly selfish. I want to be angry at mom but what would be the point?

Mom is standing right with me going through the same valley. So who can I be angry at? God? I don’t think so.

The bible tells us that He is a loving God so in love with us and I fully believe that. That leaves me to be angry at. I can stand back on a hill and look back at my life and see the tracks that led me to my present moment. There are so many should haves and could haves over the past five years. Back then when the world shifted and changed forever, my world also changed. 2001 was a personal turning point for my life on the same level that it was for those in the United States.

In the earliest days of that year I was living a much different happier life. I had my own apartment, my own furniture, my own career about to blossom and most importantly, my own life. I was happy.

I can remember the events of the day that changed my life like it happened just this morning.

My phone rang. It was my Godson. His voice trembled as he told me that his 21 year old brother had killed himself hours earlier. The only thing I could think of to say was “I love you, pal”. I remember that he cried as he said the same thing back to me. I did love the kid.

Kegan was the closest person to a son that I had. He was a great kid and at 15 years old he was so mature and intelligent for his age. Up to that point I had never experienced a loss that would even come close to equalling his loss so saying I love you was the only comfort I could provide for him.

The next five days were the most painful and most bizarre days of my whole life. I was close enough to my Godson that I was allowed to be let into his close knit family and become a part of his family’s worst moment. For five days I became a part of that tragedy and became a part of that family.

In retrospect I knew that I should not have allowed myself to get that close to that event but I have always been a caring, loving, generous person. It is in my nature to serve and that was exactly what I had done.

Unfortunately once the funeral was done that family cut my tether and cast me adrift leaving me to figure out how I would recover from this tragedy.

This is perhaps one of the large reasons why I struggle with dad’s situation now. Deep down I feel that my brothers and sisters have cast me adrift leaving me to fend for myself. And more importantly, I sometimes feel that God has done that too.

I was aiming to move out for the end of this month. The way things have unfolded in the past couple of days I don’t think that this is going to happen. Right now the future stands in front of me like a cluttered garage stacked to the roof and I have to remove the obstacles one by one to get to the door at the end of the room that leads out into the rest of my life and the more obstacles I remove the more obstacles I see.

I’m angry at myself for letting myself be the one who moved back in last fall the way I’m angry at myself for letting myself be a part of Kegan’s tragedy.

Most of all, however, right now I’m just angry at myself for simply caring.



September 10, 2006

Throughout the past ten years God has been the biggest and best part of my life and yet reflecting back on the past year living here with dad I didn’t turn to God all that often during the toughest times. I think it’s because of my situation. I felt completely alone living here dealing with dad this past year. I think that I felt completely alone because of how I was raised. I grew up in a large family and I knew early on to depend only on me.

“You’re not alone, mom. Just remember that.”

I’d said that to her one day this past spring. She’d been sitting on the steps of the front porch softly weeping. The phone lay in her right hand. I came around the corner from the backyard and stood and watched her for a moment. Instinctively I wanted to comfort her.

You’re not alone, Rich. Not one person in my family uttered those needed comforting words to me in this past year. I never felt anyone wanting to instinctively comfort me during the times when I cried.

But now after coming back from church I know that even though I didn’t turn to the most protective force that exists I know that I can still do that now. A few weeks ago I felt a new page slowly turning in my life. I still feel that. It’s a process that seems to take forever but it is happening.

I’m going back to being a youth leader in church again, something a regularly did five years back when my world was completely different. It’s like putting on an old favourite sweater that I’d had tucked away in a box. I was very good as a youth leader, I really was.

I’m great with kids. I always have been. And now I’m stepping back into that arena one more time. The youth coordinator at my church told me that we may have as many as 90 kids there tonight. I probably should have been frightened at that prospect but I wasn’t. Compared to what I’d gone through in the past year tackling something like this isn’t scary. In fact I’m fully expecting to laugh and relax and unwind.

This kind of neat, wonderful experience is something that I’ve wanted and needed for a very long time. Thank you God for this.



.
September 12, 2006

I’m still needed here. I know that there are still a “million little things” that need to be taken care of around the house. The bible teaches us to let go and let God. We are supposed to just give everything up to God and to not stress and worry about anything. I’ve done that. And in doing that I’ve come to realize that if I were not meant to be here I wouldn’t be. I’m not embarrassed to be living with my mom because I know that she needs me and I know that I’m filling a much needed role here.

I want to help out as much as I can with her while she navigates her way through the maze of putting my dad into a retirement facility. There seem to be so many hoops to jump through and this, like all things, has its own red tape and political barriers to breakthrough.

Yesterday mom took a call from a government agency that proceeded to inform her that because dad was in hospital he was receiving proper medical care and as such was no longer a priority to be placed into a nursing home.

The other end of this is the sudden medical bills that have begun to mount. Canada is suppose to have subsidized medical care and our bills are suppose to be taken care of by this but we seemed to have fallen through the cracks here and as such need to fend for ourselves for a little while.

It is still just here dealing with this end of things. My siblings still refuse to offer any help. I’m still glad that I’m here to help out. And I’m also still upset that my brothers and sisters are not willing to help out.

As time progresses I’m beginning to wonder how long God wants me to be here helping her. I can say that I am blessed to be here and that I do have the time and means to step away from mom when I need to. Jerrod and I are supposed to go camping this weekend and I am a part of youth group on a weekly basis. Slowly my life is becoming my own again.

I’m no longer stressing about this even though I know that this is all far from over.


September 14, 2006

I saw him again today. This time it was with mom. This was the first time that dad had seen mom and me together since the night of our fight. In the past when she had gone to see dad mom had always gone alone. There were times in the past when I’d wanted to tag along but she would always say no and tell me that if he saw us together he might think that I was still living at home and therefore he might try to tag along with us when it came time for our visit to end.

I don’t know what changed mom’s mind this time but I’m glad I got a chance to see dad today. When we arrived at his room we found his nurse sat on the bed who waited while my dad shaved in the tiny bathroom of his hospital room.

Mom gently knocked on the bathroom door and said something to him. She spoke in her traditional language. I wasn’t able to understand. But I imagine it was something along the lines of hurry up in the washroom or something to that effect.

Mom told me earlier that day that he becomes trouble when he has male nurses on duty supervising him. She told me that he has become quick and has tried to run away on many different occasions. As I waited for dad to finish shaving I began to wonder if he would try to run away from me especially when he and I are going to be left alone in the waiting room while mom sees her family doctor.

He came out of the washroom and wore a bright, happy smile and the moment I saw him I knew that we would have a good day. We left his room and headed down the staircase.

Dad went on about the silliest of topics, a part of his behaviour that I accepted a long time ago. As we crossed the street he asked where the car was. From behind me mom said that she didn’t drive anymore. As she spoke those words I turned around to look at her. She winked at me giving me a visual cue not to say anything that would let dad know that this was a lie.

I kept glancing back at him just in case he decided to make a sudden dash for freedom. Thinking back on it now I guess I felt a bit like a prison guard. I don’t like that I had to feel that way. It just wasn’t right.

In the waiting room dad and I sat. I kept his mind occupied by providing a few magazines for him to look at. Of course once he had carefully examined all of the magazines he would realize that mom had been gone quite some time. That is exactly what happened. He got up and wandered around the small waiting room for a few moments. I kept my eye on him the entire time.

He was so much different then the first time he and I sat together alone in the hospital. That first time he was so incredibly confused about where he was, how old he was and most importantly, why he was there.

Today he seemed balanced and lucid. Later I would ask mom if he was on medication. Her answer didn’t surprise me but it did make me feel somewhat better. I began to wonder that if being on medication keeps him grounded how would he be off medication? I’m sure that he would return to his old behaviour that he regularly displayed while still living at home.




September 17, 2006


Mom has begun displaying a loss of memory and that scares me. I can easily chalk this up to a natural part of her getting older but a big part of me fears that this is an early sign of Alzheimer’s disease.

She and I talked late last night.

“He’s so changed.”

She was talking about his personality. I’d briefly wondered if this was a side effect of his medication. I have many questions about this. Is this better now, the way dad is and the way life is now? I still have crystal clear vivid memories of literally being beaten by him when I was a kid. As I got older he mellowed but only slightly, his physical behaviour was gone but the attitude and the verbal behaviour continued.

There were so many times in the past where I wanted to have a regular, normal relationship with him, the kind of relationship that my childhood school friends seemed to have with their dads.

He’s so changed.

The other day when I joined mom on her semi-daily visits with him I saw a quiet, lucid, coherent man waiting for his wife in the doctor’s waiting room. Had I been another person in the same room I wouldn’t have given my dad a second glance because his behaviour on that day didn’t indicate to the outside world that he suffers from severe dementia.

I didn’t actually see a difference in him on that particular day. In fact it was the same dad I’d known a decade earlier. But previous visits have told me that the person he was back then is long gone and I know that he is not coming back. I accepted that long ago and I live life according to that knowledge.

I still navigate these waters alone. I know there are support groups out there that would guide me through the rest of my journey but I still haven’t paddled over to that shore just yet. That probably makes me a fool because I’m tackling this alone.

With mom beginning to show the initial signs of this disease I’m beginning to realize that I really am left alone here.


September 19, 2006

Mom and I talked this morning about the possibility of bringing him back home. A key point into bringing him back home involves getting round the clock supervision and having at least one family member watch him for 4 to 6 hours during the day everyday. My gut reaction told me that this family member would be me.

If this falls onto my shoulders this postpones me moving out and on my own for at least another year because that is how long the process will take to get dad into a nursing home.

Right now there is no way that I would do that even if no one else in the family is willing to do that. I’ve put in my time and I’m beyond ready to pass the reigns over to someone else. I’m sure that mom could easily get one of dad’s nieces to come watch him during the day.

My mom is quite able of taking care of herself now. I know that I don’t really need to be here any longer. I have wanted to move out for the longest time. It’s more than just a want, it’s a need.

In fact at this point I would once again rather be homeless than stay here. I love my mom but I need my independence. Ten years back I when I wasn’t financially able to move on my own I would find a place of my own somewhere in the house and sit alone and literally feel uncomfortable and even unwelcome. At present I do feel welcome here but not comfortable.

I’ve gone through the guilt and pressure of being a good son. I’ve managed to toss that aside. Now I’m just aiming toward the future. I’m planning to move out at the end of this month. I don’t have the financial resources but I’m going nonetheless even if it means living in a homeless shelter for a while. I just really need my independence more than anything right now.


September 20, 2006

She went to visit him last night.

I’m still expected to take care of the little things like running to the local market or coming to pick her up after an evening of visiting with dad. This was the case last night.

As she came out of the hospital she said that he wants to say goodbye to me. I climbed out of the car and went inside. He was just by the entrance standing with the nurse. His current behaviour dictates that he has to have a nurse with him whenever he has to venture outside his room. There are also times when nurses have to be posted as sentries outside his door. He’s become a flight risk. So seeing the nurse with him by the front entrance of the hospital wasn’t a total surprise.

Dad was wearing a navy sweatshirt which was a really weird thing to see because for the past twenty or so years he wore checkered shirts and only checkered shirts.

He looked so different even from the last visit.

“Hi,” he said. It was that same tone he’d used the very first time I came to visit him in the hospital. I really didn’t know what else to say.

“Just came to say goodnight,” I said. My tone was cheerful and pleasant. It was good to see him. I walked up to him and hugged him. It was the first time I’d ever hugged my dad in my whole life but it had felt so natural almost as though he and I had hugged every day that I was growing up.

I turned and headed back to the car.

The past year has been a total mess. Nothing has gone right. Only in the last few weeks things have begun to change for me. Being a youth leader again five years after I’d last held that position has reignited a fire that had been extinguished for a very long time. I’m still waiting for the page to completely turn for me. But it is.

Ten days from now I’m moving on with my life. I’m leaving here. I’m not telling anyone until the night before but I’m going. I have to. It’s the only way I will keep my sanity. In the past few weeks my oldest brother has become a cross that I have had to bear. He’s a drunk and selfish and completely draining. He moved back in a month back. In so many ways he is still mentally a child even though chronologically he is nearing 50 years old.

This journey has been the most stressful adventure of my whole life. I’m supposed to be grateful to God for the life that I have and I am. But lately I find myself wanting more from God, needing more. Lately I feel that I just want to move on and not look back.

I am ready to step out into faith and trust that He will catch me.

There is an incredible scene in one of the Indiana Jones movies where Indy is standing looking down at a precipice and he holds his breath, wraps his faith tightly around him and steps out into what appears to be nothing. In reality it is a bridge that looks like it is not there. He survives.

This is the part where I gotta do that. I gotta step out into what looks like an abyss and trust that God will catch me. Ten days from now will be the one year mark that I have been living back under my parents’ roof. It was the hardest, most gruelling year of my whole life but I did it. I got through it.

If someone were to say to me you need to go through it again, I can honestly say that I’m not sure that I would do it again. I love my parents intensely but I don’t know that I would do this again.

I’m at the last step of my journey.

I just got off the phone with a representative from a personal care home. We’ve been struggling with crossing over this last hurdle for the longest time and it looks like we’ve finally reached our destination.

He’s got a room available at this personal care home. I’m really happy about this. He’s going to get the proper care that he needs and round the clock supervision.

In the end what this became about was trusting that this was a part of God’s plan for me. Jeremiah 29:11 tells us that God has a plan for each of us, a plan to prosper us, and not harm us because He wants to give us hope and a future.

I have a future waiting for me and I have hope that it will be prosperous and positive.


September 21, 2006


My youngest sister, Sherri, arrived this morning to help mom pack his belongings. I sat in the living room munching on grapes. It was decided that I wouldn’t be involved in the transition phase. In the past few months dad had only responded to certain individuals in our family. Sherri was one of them.

Several minutes passed and my mom and sister were ready to head to the hospital. I’ve known from the start that this is best for him. As I did a bit of sweeping I suddenly was struck with the thought that my dad suffers from Alzheimer’s disease. I know that this will take his life. This is how he will die.

That realization hasn’t sunk in yet and it won’t until that day actually comes.

I’ve had to live with dad and this disease on the frontlines for one whole year. I was the only one of my brothers and sisters who fought the war head-on. I wear emotional scars from the past year but I’m carrying on.

I’m not sure if we should be happy or sad here. Dad’s never coming home, he’s never going to be the same again and this will be his last address. But he’s also going to get round the clock supervision and medication to maintain his current level of stabilization.

When I began this journal I’d wanted to find some way to make sense of all of this. I’d wanted to find a way to navigate my way through the rest of this journey. But now that dad’s finally going to be placed into a proper care facility I can honestly say that my heart is broken. There are tears in my eyes as I type this. It’s weird because I’ve not cried in a while but suddenly at the very end of this journey I’m sad again.

This is where we are. This is our life now. I have to accept that and move forward.


September 22. 2006

He’s been in the care facility just one day now. When we first brought him in he seemed so much mentally healthier than the other residents.

I’d had concerns that perhaps placing him into a locked wing of the nursing home was a mistake. The other residents of that wing were clearly cognitively inferior and I could see how they could get hurt or hurt others if they wandered off of the wing. But dad wouldn’t hurt anyone unless he was provoked and as for hurting himself? That would never happen.

In the end I did tag along with Elaine to help dad settle in at the nursing home. I just somehow felt that I’d been along for the whole journey and it only made sense to be there at the very last stop.

The good thing is that the staff on that wing already recognizes that dad doesn’t belong in that part of the nursing home.

“You’re just throwing me away,” he kept repeating as we were helping him getting settled. I imagine that it probably did feel that way to him.

Of course we all reassured dad that we weren’t throwing him away and that we still loved him.

There just isn’t any other way right now. I feel horrible that he has to be in that facility. Now I’m thinking that I would absolutely stay here under my parents’ roof for as long as it took if it meant bringing him back here.

Locking him away in that kind of facility now seems cruel and wrong. But the reality is that this really is the best place for him.



November 9, 2006

An entire year has come and gone. Dad’s been in the personal care home for 6 weeks now. But he’s been gone from home for 5 months. In that time I’ve had to take up his role in a lot of ways like taking out the trash, tending to little fixer-upper things around the house and of course, yard duty (mowing the lawn, etc).

I’m itching to move on with my life more than you can possibly imagine. I’ve taken a job as a substitute educational assistant which, unfortunately, has yet to bring in any money for me because I’ve not been called to any schools to sub just yet.

But I have begun the process of moving on with my life. I’m very active in my church as a small group leader for boys in grades 9 and 10. Being a part of a youth group again is great. It shifts the focus away from here.

Unfortunately I still haven’t been able to move out just yet so here I remain.

In the past 5 months I’ve only managed to see dad less than ten times. In the beginning it was so incredibly difficult to be with him in the same room because he had changed so much. But as the prescribed meds he is on has stabilized his fear the distance and lack of reliable regular transportation has become the only reason that I have not seen him more often.

He’s so much better than he was one year ago. The difference is remarkable. Mom has found peace finally. Her stress has totally disappeared. And I’m glad for that.

I sometimes wish that there were another way that this could have gone, a road that had less potholes and less ninety degree abrupt sudden turns. But Alzheimer’s disease isn’t about predictability, nor is it about the easy way out. It’s an angry rhinoceros who is determined to run you down at any cost. And the only way to survive is to learn how to move out of its path as quickly as you can.

A year down the road and dad is no longer the bad guy. His medication has levelled out his behaviour and stemmed his dementia for the moment. But this disease is degenerative and I’m sure the coming year will bring more heartache than the previous one.

I know that it’s going to be immensely difficult but I also know that in the past year I was able to find strength I didn’t even know I had.


Coda

Ten months later.

June 19, 2007

The past year has been a year of growth and a year of pain but I guess that this is how life must move forward after an incredible journey such as this.

Dad’s been in the nursing home for 10 months now. I got used to him not being around long ago so his absence has not had the kind of deep impact often associated with events such as this. Though he’s not been around there have been times when I’ve still needed him, like the other day.

Last Saturday my best friend from college suddenly passed away. Though Curtis and I had lost contact three or four years ago hearing of his sudden passing was an intense shock. I was home alone the day I found out that Curtis had actually taken his own life. In that moment I was a little kid again needing my parents. My mom wasn’t around so I called the nursing home looking for her. And then on the phone I decided to ask to speak to him. I knew that dad wasn’t able to provide any comfort but I still just needed to hear his voice, to know that my dad was still my dad and still there for me.

I’ve stepped into the dad role. I’m a dad now. My son is 16 years old. I unofficially adopted the kid. Early this year I worked in a group home where I met Matt. He lived in the home. When I came to learn that this boy had spent his whole life in and out of 9 different foster homes I knew I had to do something and at that point I just thought that I would be a continuing presence in his life. But as weeks progressed I found myself caring deeply for this kid eventually coming to love him a whole lot.

Now I’m working toward formally adopting Matt. He already sees me as a dad figure in his life. And as life unfolds for me I find myself looking to the memories of my childhood and the kind of dad my father was during those days.

Dad was fiercely loving and caring. I’m already there with Matt. But being a dad is simply more than just loving and caring. Being a dad means I have to teach him how to love.

This past Father’s Day Matt didn’t know the protocol. He didn’t know that he was supposed to get me a card and wish me a happy Father’s Day. In fact he was kind of hurt when I didn’t do that to him – wish him a happy Father’s Day. When I talked to him about it the next day I half jokingly asked if there was anything he needed to tell me.

His birthday comes up in September. By then my plans are to have Matt come live with me under the same roof. I already told him that I would buy him a car for his birthday. I intend to keep that promise. It will be the very first birthday where someone he loved deeply will help him to celebrate.

Christmas comes after that. I’m gonna do all that I can to give him the best possible Christmas he’s ever had.

He loves me. I see it in his words when we talk on instant messaging. I can see it in his face when we are together. I can hear it in his voice when we talk.

I’m dad now. As my own dad continues to float farther away with each new morning I am no longer sad. My boy, Matt needs me.

I’m not worried that I will not be a good father. I had a good role model.

Thanks dad.