I remember growing up, never knowing my grandfather on my dad’s side. I hear he was a pretty good man but really know almost nothing about him. I just don’t remember even wanting to know too much either, he just seemed like another relative I never knew and never would. It didn’t seem to be a big deal to me to know the man and the fact that he passed away rather young from early onset Alzheimer’s never truly seemed to matter either. It was sad, but I didn’t think much of it. My dad once told me a story about how, when his dad was quite far gone thanks to the disease, he had visited him at the old family home in Two Mountains (just outside of Montreal) and brought some fast food so the two could have lunch. My grandfather spent a fair amount of time staring at himself in a mirror and telling my dad how another man had come over to visit and spent a lot of time talking to him. My dad realized rather quickly that the man who visited my grandfather was actually just his own reflection and he was talking to himself the whole time.
I don’t like thinking about the story, especially now. You see my grandfather and his disease no longer seem like a distant, unfortunate part of our family history; it’s a real part of my life now. Some of you know this and more of you don’t, but I’ll share with you a very unfortunate and challenging part of my life. Alzheimer’s disease is in my home and it affects the most important man in my life. My dad, John, has early onset Alzheimer’s disease which is also known by its umbrella term as dementia.
Alzheimer’s is a chronic neurodegenerative disease that starts slowly but worsens over time. Short term memory loss is the most common symptom, followed by disorientation, mood swings, lack of self-care, and behavioural issues. The disease eventually leads to trouble with speech, body functions, and breathing, which ultimately leads to death. The disease is the result of protein build up in the hippocampus area of your brain. The build up is known as “plaques and tangles” and grows over time blocking off the passage of information and eventually lead to the death of cells and tissue. There is no known cure for this absolute FUBAR of a disease and it progresses from simple forgetfulness to death over an average of 8 to 10 years. Genetics are believed to play a major part in inheriting Alzheimer’s and family members on both side of my family have it. My aunt, is my dad’s older sister and she currently lives in a home for people who can no longer care for themselves. My grandfather on my mom’s side is believed to have had it too, but luckily he only started showing symptoms very late in his life. Thankfully neither of my dad’s younger siblings are showing any signs of the disease and neither is my mom or her sisters Although I am certain that my mom must be some form of immortal being since she lasted this long with dad, my sister, and myself. I am going to share with you a few stories from the last year and a bit as they should paint a pretty vibrant picture of what it is like to live with Alzheimer’s in your life.
I first noticed my dad’s illness a couple of years ago. We were installing a new shed and patio stones in the back yard and it was all DIY. The pieces were bought but we had to put it together. My dad has always been an extremely handy guy when it comes to home repairs and the like. He always knew how to fix something and my mom and I used to think that after he retired he would be one of those old guys who works part time at Home Depot because he likes to talk about renovations and DIY projects. So when I was helping my dad build the shed and noticed him get confused or do a bad job at putting something together it was more obvious than an alligator at a crocodile pep rally … you know what I’m talking about. The troubles continued when we were trying to lay the stones for the walkway. Just the summer earlier dad had cut and laid the stones for a walkway that cuts across our lawn and he did so with incredible detail. But one summer later my dad would sit outside for HOURS flattening the gravel, laying the stones, removing the stones, flattening the gravel again, and so on to the point where he would only lay a few feet of stones in an entire day. To this day the stones aren’t completely laid down. I tried not to think about these events too much and just brushed them off as him getting a bit older and the job being a bit tricky. Then it got worse.
My dad complained about having difficulty focusing at work and remembering the sequences for computer work and sales (he worked at Sears, not the good one, the Canadian one). This eventually led to him having to leave work because he simply could not function properly there. He seemed to somewhat enjoy the time off at first but it became clear that he didn’t want to be sedentary at home so he made sure to take the dog (Fergus) out for long walks and garden for as long as there was day light and even sometimes into the night. But every now and again the disease would sneak up on him and he would start placing things where they did not belong or would forget to take messages or medication. I could start to see the changes more and more.
I denied all of this at first. I refused to accept that my dad had a disease and ignored all the signs for as long as I could. I was too proud to accept the fact that one day I too may have this disease. I kid you not I just started to shake while typing that last sentence. It’s a hard reality to face. The idea of losing my dad and one day possibly going down that same road has kept me up at night. It scares me, haunts me, and sometimes depresses me. I went through that classic denial stage and I think some of my behavior, eating habits, and outlook on life were affected by this. It’s really hard even now to type any of this but I have finally learned to accept the disease for what it is. The disease has really taken a turn down the wrong path in the last couple of months sadly and it’s more noticeable than ever.
Over this last summer, I noticed again and again just how much my dad struggles to do the simplest things. At dinner, he will walk around the kitchen not knowing what to put on his plate or where to get seated. When getting ready in the morning he will get fully dressed before taking a shower, then after the shower put on something different than what he had on before. Our dog Fergus wears a harness when we walk him because he is a clumsy ass behemoth and dad would probably have an easier time following the plot of LOST than getting that harness on the dog. Dad forgets to turn off lights and T.Vs, he puts dishes where they don’t belong, he loses keys, and he also forgets when he eats meals meaning he sometimes has two breakfasts or lunches. It is only getting harder for him. Some of the hardest days with him however came during our recent father / son (and uncle / nephew) trip down east.
Dad and I went on a trip to Newfoundland with my uncle (his younger brother) and his son, my cousin, this past August and truly it was an amazing trip. I went to the place my maternal grandfather used to spend time every summer and visited his mother’s old town in Brigus. I will cherish every day spent there and I felt so incredibly at home there, even though it was my first time on “The Rock”. Sadly it was not all good times as dad’s illness sometimes took a front seat and showed it’s true, ugly colours, think like, taupe or puce. Every single night was a routine of making sure dad was ready for the next day. I would have to help him pick out an outfit, put away his old clothes, and get ready for bed. On the third night, before I had developed a routine with him, I realized that dad had spent nearly 25 minutes taking the same clothes out, moving them around, and putting them back into his suitcase. I guess he would forget why they were out and would simply go through the motions. On top of this nightly ritual, dad would ask A LOT of questions about what was going on in terms of day activities and where we were going. Not that bad, but when you have to hear them multiple times a day for 13 days straight you start to develop grey hairs faster than you want. I’m going to be a silver fox by 30. Trust me, the little things can add up too and you don’t need these big dramatic events to see just how much of an awful disease Alzheimer’s can be. You start to feel helpless, weak even, when you watch someone close to you go through this and not be able to take it all away.
I remember on our second last day in Newfoundland waking up early and running uphill for 3.5 kilometers from our hotel in St. John’s to Signal Hill, cursing my mortal enemy; the incline, the entire way. When I got to the top of the hill I stared out at the Atlantic Ocean. It was calm, sitting silently, allowing me to stare out until the horizon. I could barely make out a wave in the absolute calmness of the water and the clouds seemed to purposely allow just enough sunlight to pierce them to create a yellow glow that I have never witnessed in my life. The view was ethereal and so absolutely breathtaking. I actually remember that I had my phone with me and was about to take a picture but decided that I wanted this image to be mine and mine alone (yes that’s selfish, want to fight about it?). I remember sitting there, close enough to the edge of the cliff to give my mom and girlfriend’s mom some serious heart problems, and thinking about what I had to do to help my dad and how I wanted to spend my waning time with him. Even with all this beauty around me all I could think about was my dad. His disease has become such an ingrained part of my life that I cannot escape it. I don’t want to though, not now at least. I used to think he was a burden and that I would be dealing with a man who would only get worse and worse, but I understand that he needs me now as much as I needed him when I was growing up.
It has now been about 3 months since we returned and dad has had several visits from health care specialists, driven several times to Montreal for medical testing, spent nearly 2 weeks in the hospital thanks to an ulcer on the lining of his bladder, and is now at home having to drag around with him (skip this next part if you’re a tad squeamish) a baggy and catheter for about a month to make sure everything heals and works properly. Dad would probably be annoyed with me for sharing that with you but I want to make sure it’s clear just how much his disease sucks. The concept for his catheter and bag are pretty simple and I know exactly what it does and needs to be done. For dad though it may as well be a 40 sided rubiks cube or that stupid hover bike level in Battletoads. He has an incredibly hard time with it and even the simplest instruction seems to be translated to him in ancient Hebrew. It’s heartbreaking to watch and he even has to take pills which follow a schedule. This too is very hard for him to do. It is clear to my mom and me that dad may not be able to be alone at home for much longer, or even at home at all. We have to face the reality that one day he will need to be in a facility and be taken care of by professionals. Our family isn’t equipped to help him for the long haul. But one thing that amazes me, beyond all of this pain and hardship, is the fact that dad can look at the positives in everything and makes lame dad jokes when he sees other people upset. It’s absolutely astonishing that he refuses to let this illness take over him and change who he is deep down.
Why am I sharing all of this with you today? Why depress you and tell you about my life and the disease that is slowly killing my father? I tell you because I want you all to understand what Alzheimer’s is really like and what you can all do to deal with the emotional baggage that comes with it. I want you all to know how to deal with these situations and to not make the mistakes I made.
I took a lot of years with my dad for granted, I spent entire days’ worth of hours in my room or the basement playing video games and watching T.V while my dad was outside doing work that I will have to do one day when I own a home. I wasted far too much time doing trivial things while I could have been bonding with my dad. It is now too late to do those things with him because either I will not know how to do them or my dad will not be able to help me. I regret it often but know that I still have time with him now. I have accepted his illness and accepted that I may one day get it too. I know this may be hard for some of you to read, especially those who are going through the same thing as me or know people going through the pain of Alzheimer’s like my dad is. If you are wrestling with these sometimes herculean obstacles then I have some advice for you that I find has helped me not only cope with this situation but also but also mature as an adult and person.
The first thing I did was to simply open up about my emotions. I have opened up to my mom and girlfriend and cannot express in words how helpful it is to share your pains and frustrations with a loved one. If they truly love you, they will not let you walk the path alone. I will admit I have openly cried in front of both of these phenomenal women when opening up about my feelings. Neither of them chided me for it, but instead allowed me to vent without reservation. The second piece of advice I can give you is to accept that your time is limited and to make the most of it. Furthermore, accept that this illness will change them and that most of their decisions and emotions are not truly theirs to control any more. My dad gets much more agitated nowadays than he used to and can sometimes react in a rather bullish manner if you confront him aggressively. People with Alzheimer’s may also try to overcompensate for their shortcomings and become emotional at their failures. Dad will become visibly upset at not being able to perform simple tasks and sometimes try to do more than he is capable of to make up for it. Lastly, be patient. I promise you, unless your religious deity has personally bestowed upon you superhuman patience, you WILL become frustrated and angry at your loved one when they screw up. Just remember to breath and work past it. Please don’t bottle up your emotions, please do not let your time with your family and friends be taken for granted, and please do not become angry at your loved ones for their inability to control themselves. I don’t know how much time I have left with my dad and I don’t know how much longer I have before he won’t really be “John” any more. I know my time is limited, so, I had to make peace with the fact that I have to live in the present with him.
Another thing I suggest you do is visit the website “Dementia Friends” www.dementiafriends.ca. It won’t cost you anything, but it will help put dementia research and care in the forefront. Please visit these other websites for more information if you are interested in learning more about dementia and what you can do to help your loved ones or friends who may be going through the same things I am.
Dad, I am talking directly to you now. I know you are confused and I know you are scared. I will always be there for you no matter what and I will never forget any of our good times together. I regret not spending as much time with you as I should have but I plan on making it up to you by being the best man I can be. I know you have always wanted me to be that way. I have always looked up to you, even if we haven’t always seen eye to eye. You’re one of my best friends and I know I can always count on you for a laugh. Even though this disease is changing you, I know your terrible dad jokes and terrific outlook on life will always be somewhere in there. I will not let your memory fade for as long as I live.
Dad, I love you xo