The Longest Day: What Alzheimer’s means to me

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We’re almost done with our Longest Day blog marathon! Special thanks to Nicole for guest blogging with us today. Nicole is a regular contributor to Cupertino Patch. You can read more about Nicole’s experience with her father who has Alzheimer’s disease here: cupertino.patch.com/columns/oh-my-papa

When I was growing up and heard the word “Alzheimer’s,” I thought that was only something that happened to elderly people after they have already lived their lives and enjoyed what should be enjoyed. And even with that mindset, it still didn’t make sense. How could someone forget people they have known for years?

Then the day came when the neurologist told us that my father had stroke-caused early onset Alzheimer’s. At first, I just thought it would sort of go away. You know, like if he asked so many dozens of times what day it was or where someone lived or where I worked, etc. and I told him that many dozens of times, then maybe it would click the next day. It never did.

He was 61 years old when this all began. Though it has been moving slowly and we do still have some good days, it still doesn’t make sense. My father has not lived his life and enjoyed everything he should enjoy. This shouldn’t be happening now.

Now, my father and I haven’t always had the best relationship. But, I was taught to help the family. So, things had to be overlooked so I could mentally and physically help, especially because he didn’t remember any arguments or occurrences anyway. That is what I have learned this disease does – you either get closer to your family for support or you get further away to avoid the subject and sadness altogether. Many times, these two ways of acting tend to alternate from day to day.

When it comes down to it at the end of the day, I have always been his little girl. So, I keep a list of all the medications he takes, keep him company, make meals and more. I try to do things with him, but he is losing interest. Nowadays, I try to just talk to my mom more often so that she feels supported. I can’t imagine what this is like for her.

This is still fairly early on in the disease, though. There are some days – funny enough on the nice-weathered days – where he seems perfectly normal, alert and back to his regular, joking self that we all remember. Though those days are short, they are nice.

The days where he won’t get out of bed or keeps saying he has something else to do or tries to open the car door with a credit card are the days that seem to drag on and seem to be longer.

Alzheimer’s is the type of disease that does not affect just one person. It affects the whole family, and more. My mom now calls while at work to make sure things are okay or gets me or someone else to sit with him if she wants to go out somewhere. I seem to have made my work schedule around his schedule, or have tried to. My brother and aunt have been affected as well. Even the neighbors now know to call us if he starts wandering away.

To the patient and the loved family member, this is probably very well a lonely disease as things are forgotten and jumbled up. But, it is not lonely in that it affects many people around that center. I truly hope that if your loved one is affected, or you, that you can somehow find the support you want and really what you need.

Read more about Nicole and her dad at Cupertino Patch: cupertino.patch.com/columns/oh-my-papa