I am a granddaughter, just like the many granddaughters who are all fearful for the day when they are asked, “Who are you?” It a question that is devastating. It is a question that I will more than likely hear. It is something that will come out of my Grandfather Gampa’s mouth in the coming days, months and years. I do not know how I will be able to sit there and tell him who I am, but I know that I will have to be able to.
Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. It is ranked as the sixth leading cause of death in the United States but more recent research shows that it is closer to third place behind heart disease and cancer.
When a family member is first diagnosed with Alzheimer’s you do not think much about it. You say to yourself that they seem perfectly fine, how could this be. You are still able to have a conversation with them about the past and tomorrow. You can still talk to them about things that just occurred five minutes ago. But when the first time you notice that they are slowly slipping further and further away it is devastating to both you and the one who has Alzheimer’s. I will never forget when my Grandfather forgot how to perform the simple task of making gravy for Thanksgiving dinner. It may seem small to those on the outside but to us it was devastating to watch a man who taught me how to make gravy when I was 5 years old, to suddenly forget how.
That would be the first of many devastating realizations.
A person who has Alzheimer’s disease does not necessarily realize it. My grandmother Nana would prompt Gampa. Help him remember people, what he had done and is going to be doing later. She was his safety blanket. But he sadly lost her in November and he lost his safety blanket that was by his side for over 50 years. He was left with only fading memories and was left with the daily struggle of trying to remember details that he could not.
When Nana first died I asked myself if he remembers that she is gone. I wondered if when he wakes up and in the first couple of minutes thinks she is still there to be his safety blanket. But does he not realize she is gone until he walks into the living room where he is met by an Aid and in a place that is not the home in which he raised his children in and said his last I love you to his wife. He is now in a place that can take care of him when he has forgotten how to walk, talk and feed himself.
My family, like millions of families watch their loved one’s slip further and further into the black abyss that is Alzheimer’s. We sit there and watch them struggle to keep a conversation and remember what day it is. We watch them get mad at themselves for not being able to remember. We try to have patients when we are being asked the same damn question every 5 minutes but we know that they cannot help it. It is hard to not feel resentful when they get mad at us when we are trying to do our best and rarely get a thank you.
A part of you starts to think, why shouldn’t I just leave? It’s not like in a year, a month or even a day he will remember me. But you cannot because being part of family is being there to remind them every day and if you have to every minute who you are and that they are still loved.
As common as Alzheimer’s is there is still no treatments to truly slow the progression of the disease. I hope for my children that they will not have to go through this and lose me in the black abyss of Alzheimer’s. I wanted to share my ever evolving story with Alzheimer’s with you all so you better understand what it is like to love someone through Alzheimer’s. I also hope to have given some people a little peace in knowing that they are not alone.
P.S. It is not always a sad time with people who have Alzheimer’s, they can be pretty damn funny.
