Special Moments

When you're dealing with a serious disease, there are times when its difficult to paint a positive spin on the situation. Throughout this process, I've tried to do just that and look for the good. Without fail, there is always good, always blessings, always happiness. Sometimes its just harder to find.

In early June, I went home for two weeks to be with Mike so my mom could go out to Calgary to see Jessica and her new baby boy, Cormac, after his birth. I have to admit I was a little bit nervous but not nearly as nervous as my mom seemed to be. I think she must have gone over the lists of things I needed to do and remember about 8 times. Her and Mike picked me up from the bus station and we drove straight to the airport to send her off to Calgary, and there we were, alone together.

Over the next two weeks, we walked together, we went on long car rides around the county together, we watched a lot of Treehouse (never again!) and generally just spent a lot of time hanging out. We danced, we laughed, we tossed and kicked a soccer ball back and forth. That was one of my favourite things. We would toss the ball and every time he caught it, he'd smile or laugh, once or twice he would say something about how he was the best!

Just chilling

 I learned that if he didn't want to go somewhere, I could take him by the hand and lead him to where he needed to be. He got so used to this that when we went on walks, he'd walk slightly ahead and put his hand back waiting for me to come and take it.
Occasionally, personal support workers would come in to help me out. Mike reacted differently with all of them. One day, when he was in an especially good mood and the support worker took him by the hand to lead him upstairs, Mike exclaimed, "Oh you'd like to dance!" He then proceeded to chime out some tune "Doo doo doooo do doo" and dance the two step, twirling her around. :)

There were some tough parts but they're not really worth mentioning too much. One that especially stuck out to me though happened one night as I was trying to get him to go to sleep. Normally, after getting his pajamas on and opening up his bed sheets, I could, eventually, get Mike to sit down on the bed and then pull his legs up on to the bed so that he'd eventually go to sleep (if he decided he'd like to stay in bed, otherwise the process was repeated again and again).  One night, however, I asked him as usual, "Mike are you tired?" and he responded that yes he was, but he just stood there with his front arms leaning on the bed not doing anything else. To no avail could I convince him to get into bed, when I realized that he had forgotten how to get into bed. He'd forgotten he needed to shift around and sit down first. I stood beside him and slowly step by step, showed him how to bend over and sit down on to the bed. Once he saw how, he got into bed and went to sleep.
Even thinking about it now, makes me tear up. He forgot how to sit down into his bed. But.. I was there.. I was there to show him.
Our roles have completely switched and I became what he always was to me.

As his memory fades, its as if the light in his eyes has slowly faded. When he looks at you and doesn't know quite who you are, you can see the fogginess there. You can see the dimness.
There are moments though, special unforgettable moments, when he sees you. For a brief second, he looks at you.. AT you in the eyes and He SEES you. You live for those moments.

Where is "Home"?

In the earlier stages of Alzheimer's Disease mainly the short term memory is impaired. People can't find keys or forget why they're in a room. It tends to take longer before the long term memory is affected. As a result it is common to forget recent events and still talk at length about childhood memories.
This was the case with Mike. He would often go off on long tangents about things. As his disease got worse, his social interaction was affected more and more. He would be talking and looking at you but there was very little to no connection. Plus he would often change stories or topics mid-sentence, which made the conversation almost impossible to follow.
During these tangents, we would often hear small snippets about Owen Sound or about his Mother and he'd often use the word Home to describe them. Throughout his life, Mike has always had strong ties and memories to Owen Sound, where he grew up, and his family, especially his Mom. So it came as no shock that these are the memories that would be resurfacing.
Despite the fact that we have lived in our home in Kingsville for twenty some years, Mike would start talking about Home. It was almost always during times when the house was loud and full of commotion that it would come up. We would try to explain to him that he was home, that this is where he lives. Finally, in agitation, he would get up, announce "I'm going home, I'm going home" and walk out the front door. Most of the time he'd make it to the mailbox, pause for a few moments and come back inside. As time passed we started to notice that this tended to happen more when the house was busy and loud. He visited Owen Sound with my Mom and she was surprised by his lack of interest or lack of triggers. He didn`t seem to recognize the place the way she thought he would.
When discussing this with his personal support worker, we learned that this is common and that we were misunderstanding the meaning. Mike associates the word Home with a familiar place, a place where he feels love and acceptance. So in reality, by saying he wants to go home, Mike is expressing a need for love rather than a need to visit Owen Sound. So in those moments of chaos, Mike is seeking love and peace but doesn't know how to express it.
Its made me reassess what is important to me, where is my familiar place and where do I feel love? In other words, where is my Home? Home can be a place, it can be a person, it can be a feeling.
In a way, Home means all of these things to me. There are places I would call Home, but its more about how I feel in those places and about those places that make them truly Home. I think I've learned from Mike to associate the word Home with more of a feeling. A place where I feel safe and loved or maybe inspired. I've learned from both my parents to find Home in the outdoors, when I'm in nature.
Mike likes to take long walks. He has done this for years to relieve stress and as a hobby but now one of us needs to go along with him. On one of these occasions, Mike and I took a few trips around the neighbourhood. It was a beautiful warm day and the sun was just starting to set. After awhile, Mike started telling me that he would like to go home and that he was getting tired. As we finally neared home, Mike suddenly stopped outside of our front yard and wouldn't move to come inside. I was confused and said, Mike you said you wanted to go home!
He looked up at me so surprised as if he couldn't fathom saying that. Indignantly he replied, "I would never say that!!" and off he went for another lap around the neighbourhood.
All I could do was laugh and run after him. Special moments with him, wherever we are, is truly Home.

A picture I took 

that day of the sun 

setting over a wheat field 

near our Home.

Meet Mike

There doesn't seem to be a more fitting way of starting a blog about Mike than to use one of his favourite sayings. When he's up to one of his usual mischievous antics of sword fighting with the shoehorn or doing laps around the living room singing to himself, he'll often stop, laugh a little and tell us, "You gotta have fun! You gotta have fun!"

It sounds like a little kid, doesn't it? 

There is no easy way to tell you that Mike is my 63 year old dad and he has Alzheimer's disease.

Mike was officially diagnosed with early onset Alzheimer's disease a few years ago and since then our family has seen some ups and downs. It's so odd to think of the contrast I've seen in one person over the last five years. Alzheimer's disease never felt like a legitimate thing that I had to worry about. If someone was forgetful, it was often a line someone would whip out about them having Alzheimer's or 'Old Timers' as I called it growing up.

With Mike, it wasn't very obvious at first. He was working a lot of hours at work, he was under a lot of stress, the plant he was working at was shutting down and he was left to find a new job at a new company. He wasn't having luck finding anything and when he'd tell us about his interviews we'd find ourselves slightly confused about the way he answered questions. He'd been working in the health and safety field for years and yet his answers came out disjointed and confusing. Since then the disease has progressed rapidly. He'll often repeat himself a couple times or he'll trail off about something else in the middle of a sentence. It is almost impossible to follow.

The causes of Alzheimer's are still unknown, as is the cure. There are theories. Was it all the aspartame from the Diet Coke he drank often? Was it stress? Is this hereditary?

As we began noticing changes and realizing what was going on, I had trouble telling people. I realize now with some regret that I was actually kind of embarrassed. There is a stigma associated with mental disease. The stigma doesn't always exist for diseases in other parts of the body. Blame it on my Irish pride I suppose, but to tell someone there was a problem with my dads brain felt like some kind of failure on his part. It seems so silly and ridiculous to think that way, I know. The man, who I'd watched growing up, who seemed capable of anything, had suddenly changed. His wit, his charisma, his way with words, were gone. Maybe it was harder since it was a man who was so young. He was too young. Technically, you're diagnosed with the disease if you're 65 years or older, which is why Mike was diagnosed with early onset Alzheimer's. I certainly didn't know anyone else in this situation. I knew people who's grandparents had it; but parents? My parent? What do you do when you're 22 and your dad doesnt remember who you are?

 I have to admit I don't talk much about my 'dad'. The man who is my dad has passed on and now Mike has come to stay with us. I think of them separately in my mind. I think its the easiest way I've found to cope.

That said, my purpose isn't to tell you the sadness that comes with Alzheimer's. I have to admit I found a lot of that at the beginning.
Instead, my purpose is to tell you about the happiness. Surprisingly, yes, the happiness and the fun. I absolutely love a man named Mike. And although he drives us all a bit crazy sometimes and of course there are hard parts, which I'm sure I'll allude to at times, Mike makes me laugh and has tapped into a part of my heart that is hard to describe.

I want everyone to meet Mike. I'm sure that just as he's touched my heart and brought a smile to my face, he'll do the same for you and your day.