I Wish I Could Flip a Switch and Wake Up My Father

My Perspective on Dementia/Alzheimer’s

I wish I could flip a switch and wake up my Father. You see he currently suffers from severe dementia caused by a stroke 10 years ago. Is my experience unique? Probably not. Does it differ from other family members of persons with Dementia or Dementia caused from Alzheimer’s disease? Probably not. It’s cathartic for me to write about my experience and maybe, just maybe, my experience or perspective can help others.

I know my father is in there. I miss my confidant, my problem solver, my best friend. I miss his big personality, his sense of humor, his guidance, and his enveloping love. We would talk everyday and there was never a conversation we had where he didn’t end it with “I love you to pieces”.

I miss the man who went to the track (horse races) with me and my kids every year. One of our favorite stories to tell occurred on one of these occasions. My son was about 6 or 7 and about to enter first grade. We went to the track and my father won big. Afterwards, he told my son he could have anything he wanted at the toy store and my son got a huge LEGO. On his first day of school, the teacher asked each child what they would do with $100. My son responded that he would go to… “The Freehold Raceway”.

We never did receive a call from my son’s teacher. Coincidentally, we live right near “The Freehold Raceway Mall”.

As most of you know, dementia gets progressively worse over time. Some think of it as running in “stages” or phases. My father has run the gamut and is now at the point where he can’t take care of himself and has virtually no short-term memory. Luckily for us he is not depressed or angry, typical symptoms of dementia, but remains pleasant and calm. At this point, he hardly engages in conversation, will never start one, may respond with one or two words and that is it. Thankfully, he still recognizes me, my mother, his kids and grandchildren and people he knows. I can’t tell you how much that means to all of us. I hope he never gets to the point where he can’t.

I often hear people say, when talking about their loved one with Alzheimer’s or Dementia, how frustrating it is. I have felt the same way. They long for the prior “stage” and lament the current “stage”. Wasn’t he/she so much better before? But then a wise friend whose mother suffered from Alzheimer’s and didn’t recognize her daughter at the end, gave me great advice — Acceptance. You have to accept each “stage” as it happens. Although it was horrible at the end, my friend would do anything to see her mother in the hospital bed on the morphine drip. Why? Because she was still Alive. For me, acceptance means loving the person for who they are at this moment in time, and how much they mean to you. If not, the frustration you feel will overwhelm the time you have left with your loved one.

I know that no matter what “stage” my father is in, the essence of who he is remains — A loving man. Although he can’t express it as he used to, I see it in his eyes, and it is who he is, no matter what.

Not too long ago, my mother traveled to Houston for 3 days for a party and my brother, sister and I took turns staying over and watching my father. The next time we were all together, we spoke about what we did with Dad. Each of us, on consecutive nights, took him to see a movie. When I inquired which movie, each if us in turn replied “Argo”. Simultaneously, we each burst out in laughter and I don’t think I laughed that hard in a long time.

On my way home, when I was by myself, I cried like a baby. I vowed to myself that “That” experience for my father would never happen again.

Every other week I take my Mom and Dad to the movies and lunch. It doesn’t matter how hard it is to get him into and out of the car. It doesn’t matter that 5 minutes after the movie, my father won’t remember he even went. In the moment, while the movie is running, I know he is present. At a particular sad movie, I even saw tears in his eyes.

Recently, out of nowhere, he asked to go to the Track. Even after his stroke, we went at last once a year, but haven’t gone in the past 2 years or so. I knew that he would soon forget he asked and after we left the races, he wouldn’t remember going. It wouldn’t be easy. My parents live 2 hours away and the track is by me. I would have to do a lot of driving in one day. But he did ask so I decided to make it happen.

I know this may sound weird, but I have a very concrete way of measuring the progress (which sounds like a good thing but in this case it is not) of my Dad’s dementia. Each year, I check out his ability to read the horse racing form. Never a gambler, he was a pretty good handicapper. Each time we went, he felt particularly strong about one horse. Although typically the favorite to win, the horse won 9 out of 10 times. As you might suspect, his ability to read and analyze the race form steadily declined over the years to the point where he could no longer do it. When we went together 2 years ago, I think he was still able to understand the Odds on a horse winning and that’s’ how he made his selection.

This last time, I think he was just picking numbers. On the first race, he picked #7 to win. My mother, who typically reads her book during the races, chimed in “He doesn’t know what he is doing. That horse is the biggest long shot in the race”. My son quickly came to his defense — “Grandma — never question Grandpa when he feels strongly about a horse”. And I added, “When Dad says a horse is going to win, it usually does”. Although our response was clearly tongue in cheek, there was no way we weren’t going to make a nice bet on his horse.

Lo and behold his horse WON. Although, my father showed no emotion during the race or when our horse crossed the finish line, a big smile crossed his face when we told him his horse won. I’m glad we went to the track that day. It’s a memory I’ll always cherish.

Will I do anything differently if there comes a time when my father can’t recognize me and stares blankly? I hear stories that even when a loved one is in this stage, sometimes there are hints of recognition. But this too should not matter. My message to you is two-fold: 1) Accept and cherish your loved one at all “stages”; and 2) as long as your loved one is still on this earth, treat them as part of life and INCLUDE them. I know my father is in there.

I love you to pieces Dad.