I’m starting to understand that the only thing constant about Alzheimer’s is change.
I’ll be brief today.
Several nights ago, Mom woke up at 3 A.M. to find Dad standing by her bed fully dressed and wearing sunglasses. He was ready to go somewhere but didn’t know where. The sunglasses are still a mystery. Dad hasn’t worn sunglasses for over fifteen years when he found it easier to have photo-gray lenses in his glasses than to keep up with a pair of sunglasses. With a bit of gentle coaxing, Mom got him back in the bed and it hasn’t happened again – yet.
Today our family celebrated Easter together. When I arrived at Mom and Dad’s house, my first thought was – damn! Dad looked like a street person. His clothes were at least three sizes too big, his hair uncombed, and he was sporting a 4-5 day growth of whiskers. I noticed an odor today for the first time too. Clearly it’s time to have someone come in to help with personal hygiene. Dad would die before he would let one of his children see him in the shower and we are determined to help him maintain as much dignity as possible.
We enjoyed a meal together and before we all left, Dad had been shaved and had his fingernails groomed. A hair cut is in his future and will be done this week. He may not care but we do.
I did not feel the overwhelming emotions that I normally feel today. That is strange and I wonder if I am just adjusting or, am I emotionally detaching from the stranger living in my Dad’s body.
As usual, I have more questions than answers.
It’s been a while since I’ve updated our situation here and it’s been a busy few weeks. Dad has progressed into a more severe stage of his Alzheimer’s disease. It’s hard.
We met with the psychiatrist last week and he told us what we already knew. He said it’s time to move my folks into an assisted living facility that has a locked unit. Even writing that is painful. Who dreams of the day when they have to lock a parent up like a criminal? I certainly never thought I would be thinking that at my age. I know it’s the right thing to do but I won’t pretend that the news went down like a sip of fine wine. In fact, I almost choked on it.
Dad has had more frequent outbursts of anger and has begun pounding his fist into the wall when he gets mad. That…is not my Dad. My Dad is a peaceful, kind, and loving man. This man, is a stranger. The psychiatrist says we have reached the place where safety has to rule. We can’t trust Dad not to hurt my Mom when he gets angry. After 62 years of marriage my Mom has to accept that the man she adored can’t be trusted not to hurt her. I can’t imagine how that feels.
The psychiatrist has put Dad on a new medicine to help temper his temper. We’re starting with a 50mg dose of generic Seroquel (quetiapine fumarate). He says we can increase the dose as needed up to about 1200 mg. It’s only been a few days but I do think it has helped. It could be because we moved his car too which had been the catalyst for much of his frustration. Dad wasn’t happy that he had a car in the driveway that we wouldn’t let him drive. What an experience this Alzheimer’s beast is. It tells us how to adjust and live and leaves no room for argument.
So, we are embarking on a new journey. I am trying to wrap my brain around how to find the right facility and, how to condense 62 years of memories into a few boxes that Mom and Dad can take with them when they go. Some days I feel like my heart is breaking into a million pieces and then I remember. My precious parents must have felt the same when I left home to start my new life as an adult in the world. If they handled it, I will too. It’s the least I can do for them.
Like anyone, we get tired of the same old arguments that go no where and will never have a different outcome. And so it is when you live with an Alzheimer’s brain. You can’t predict when it will come but you know it’s out there lurking.
Last night it arrived again. My Dad decided he wanted to drive down the road. It has been months since we took the keys to his car but he doesn’t remember. We had the discussion with him, explaining that it was the right thing to do. We explained that in order to keep him safe and to protect him from the guilt he would feel if his driving caused injury or death to someone, he just couldn’t drive anymore. He agreed. That was then, this is now.
When he could not find his keys last night, he launched a verbal attack on my Mom. She, like the rest of us, can only take so much. It wasn’t long before it had become a heated argument and my phone rang. After a lengthy session of reasoning with my Dad, he gave up but clearly he was still angry. And, he said he would not forgive or forget. Now we all know he will forget, until the next time.
There is no real point to this entry today. I share only because I know that somewhere out there, someone else is going through the same thing and feeling like I do – helpless and sad. When I get this way, I remind myself that this disease is harder on the families of the person with Alzheimer’s than it is the person living in the Alzheimer’s World. There are no easy answers; no magic wands to wave. We simply take it one minute at a time and deal with each crisis as it arises. There is no preparation that can stop the same old, same old of Alzheimer’s. So, I repeat to myself….”minute by minute” and it helps.
I cannot imagine how it must feel to be the spouse of someone who has Alzheimer’s disease. And to be honest, I have not given it much thought. I am the daughter of a father who has Alzheimer’s and that has been enough to process. But it could be worse. I could be married to this disease. I could be the spouse and that…must be far more devastating that being a daughter.
There are moments when I can separate from my Dad’s Alzheimer’s. It may be late at night when I am writing or in the early morning hours when I am quietly introspective but I can separate. My mother does not have that luxury. Each morning she wakes up to a stranger. Each night she goes to bed exhausted from answering the repetitive questions and in reality, babysitting an 84 year old man. Her heart must be breaking.
Sometimes it is clear that Dad’s Alzheimer’s is taking its toll on my Mom. She looks more fragile and, alone. The man who could do everything can do nothing now. The man who once shared her thoughts and dreams is now lost in a fog of fragmented memories. I wonder sometimes if he remembers the joy he felt when my brother and I were born. Does he remember worrying about my mother when she had surgery many years ago? Where are his memories of birthdays and holidays and vacations? And the worst is yet to come. One day my mother will wake up and the man she has loved with all her heart will be unable to speak to her and will look at her with that vacant stare.
I wonder if it will be a relief. Will it be easier when there are no more bits and pieces of memories that tease his mind and leave him confused and vulnerable? Will it be better when she doesn’t have to answer the same questions over and over? Something tells me that the answer is no. I doubt that anything will make it easier to be married to Alzheimer’s.