Before I talk about our family and the experience of learning that my Dad has Alzheimer’s Disease, I have to disclaim any expertise or professional knowledge of this insidious disease. I am no expert. Whatever you read here is my personal experience and nothing more. I have decided to write about my Dad because I believe that it may be therapeutic for me and hopefully for others who are watching the fog roll in on a loved one.
My Dad is 83 years old and so forgetting things seemed natural, nothing to worry about. At his age, we expected some memory loss. It wasn’t until he started losing things that we became concerned. My Dad was the proverbial organizer. Everything had a place and he was never one to leave things lying around. At first it was things he used everyday; the car keys, the flashlight he keeps by the bed, his debit card. But when we started finding things in odd places, we knew this was more than just memory loss. When we started finding unused tissues in the decorative vase with some frequency it was time to seek help.
Our family physician suspected Alzheimer’s but sent Dad by referral to a local psychiatrist who specializes in elderly dementia and Alzheimer’s Disease (AD). A short battery of tests revealed that indeed there was a problem. My Dad who was a walking, talking encyclopedia for me, drew the face of a clock backwards, and didn’t know the difference. He couldn’t name the President of the United States and he didn’t know the date. I sat there watching in horror. Where was my Dad? How did this happen to the man who had the answers for everything I had ever asked him?
There are no easy answers. Science has yet to clearly identify the cause of Alzheimer’s and although there are drugs available that have shown some success in slowing the progression of the disease, there are no cures. The psychiatrist however was reassuring. After taking a thorough history and listening to the observations our family had made of my Dad’s changing behavior, he assured us that we were the lucky ones. Dad would not die from Alzheimer’s but he would die with Alzheimer’s. There is a difference.
As a daughter, the hardest part of this is watching my Dad lose his self confidence. Although the fog has enveloped his memory and he can no longer recall what happened five minutes ago, he knows that things are different. He doesn’t trust his social skills any more and is beginning to retreat into the safety and security of his home. He can no longer fix things around the house. There is a disconnect between what he knows and what his hands can do. He knows this and it scares him. He doesn’t say so though. He just waits patiently for someone else to do what he was so adept at doing before. He has gotten lost twice while driving and this too has robbed him of his confidence. It is very painful to watch and when I am alone, I often cry for him.
Some days are better than others. I’ve learned that there are things I can do to make my Dad’s remaining days a little easier. They are tools to living with as much peace as possible when a loved one is being taken from you by AD. Remember, I am no expert, but these things have worked for us and I share them, hoping they will help someone else.
- Don’t try to force memory. Never test your loved one by asking “do you remember” questions just to make yourself feel better. Treat your loved one as if they remember until they tell you they do not. Then, gently and patiently remind them. Never criticize them for not being able to remember.
- Suppress your frustration. Don’t argue or yell when your loved one asks the same question repeatedly, no matter how often they ask. Remember, they cannot help that they do not remember asking you before.
- Create routine. When meals, dressing, and personal grooming occur at the same time every day, the stress of trying to remember is diminished.
- Assign simple chores to your loved one. They want to be useful so let them do what they can.
- Stimulate brain activity. Provide some daily activity that breaks the monotony. Read to your loved one, play music, engage them in simple games or simple physical activity. Take them for a walk or for a ride in the car.
- Love them. Remind your loved one as often as you can that they are loved, that you appreciate them, that you cherish the time you spend with them. We all need to be loved even when we cannot reciprocate or communicate our own feelings of love.
I know that I have a lot more to learn and we will take it a step at a time. In the next phase of my Dad’s disease our challenge is going to be taking away his driver’s license. For now, he is still capable of driving to church, to the doctor, and to the grocery store but safety has to come first. We have begun talking about this with my Dad, trying to prepare him for the day when he must give up driving. It will break his heart and ours too but logic rules in our family. Safety first!
During our last visit, the psychiatrist reminded us of how lucky we are. My Dad is happy. He loves his family and he is stuck in his “happy place.” Each evening I call him at the same time and we have the same conversation, every single night. I listen to my Dad tell me all the wonderful things he has had in his life; his family, his health, his job, his faith, and his home. I am grateful that he remembers so much that has been good but sometimes I have to make myself pick up the phone to have that conversation yet one more time. It makes me angry sometimes and then, the guilt sets in. How can I possibly be angry about my father? He is 83 years old and has nothing but good memories of his life? I’m not angry at him but I am angry at the fog that is stealing this man that I have adored and leaned on for so long. I know he is still there somewhere but I can’t really talk to him the way I use to and I miss him so much.
It has been said that AD really is the longest goodbye. It is true. My rational brain reminds me from time to time that this foggy state that has embraced my Dad is also preparing me to let go. I am defiant though and I am not willing to let him go, not yet. I am strong and have always thought I could overcome anything. Dad taught me that. He always said I could do anything if I wanted to badly enough. Well, I can’t stop this disease and I’ve never wanted anything more. Why Dad, why you? Why us? You don’t deserve this. These are the thoughts that come in waves in the wee hours of morning when the world is quietly sleeping and I am awake, sharing the silence with my fear, anger, guilt, and denial. I know that these feelings are natural. I know that I have already experienced three of the five stages of grief. That’s it! That’s where I am now. I am already grieving the death of this man who has been my hero, my rock. There are two stages left: depression and acceptance.
I plan to skip depression. That’s what my Dad would want. He would tell me to put on my big girl panties and deal with it. He would tell me to quit worrying, that he is okay, that he and God have made a deal. And I am sure that they have.
Acceptance? There is no choice. I can’t change this. My Dad has Alzheimer’s Disease and there is nothing I can do about it. I love him and I will always show him that I love him. I will do everything within my power to treat him with the respect and dignity that he deserves. I will defend and protect him and his right to be clean, comfortable, and safe. And I will be his advocate. He would expect no less from me and I will give him the best I have.
Until we do say our last goodbye, I will try to learn all I can and share my experience with others. Alzheimer’s Disease is lonely and the journey through the fog can be very difficult. It can be different for each person affected by the disease but it is never easy. Statistically we know that we are an aging population and that people are living longer than at any time in history. Alzheimer’s Disease will reach epidemic levels in our lifetime. If you are reading this, then you most certainly know someone living in the shadows of this disease. My hope is that you will reach out to them and offer support, love, or even a momentary distraction that will enable them to hold on for one more day.
