This is Alzheimer's
I asked Jim what he would like for me to write about.
He thought for a moment and said, “About the disease. Most people don’t even understand what it is.” Boy, how keen he is to be someone with a malady that is slowly stealing his cognitive abilities?
So, I want to explain to the average person what happens when someone has Alzheimer’s disease.
First of all, it is very important to keep in mind, as all people are different, the disease affects both the brain and personality differently.
Secondly, it doesn’t just affect the afflicted person; it takes its toll on the whole family – extended members included. And neighbors. And friends. And co-workers. And sometimes strangers. The reach of this disease has the rippling touch of a tsunami. It takes the water out and you stand on a beautiful beach, wondering what is going on, and then suddenly you are overwhelmed, drowning, struggling and just reaching for something to hold onto in order to survive.
It isn’t easy to just get a diagnosis. That in itself is a treacherous task. Then, once you get the dreaded news your loved one does not have a tumor, stroke, high blood pressure, or many other possibilities, you succumb to the realization they have a curse that will eventually take them from you, and you are not sure what to do. But before they leave you physically, they leave you mentally, and you are left with an empty shell of the person you loved so much.
There are no treatments towards a cure. There are no specific game plans to make life easier. There isn’t any guidance to tell you to get your finances in order, take that dream vacation, visit an elder care attorney, have that difficult end of life conversation, and so much more. There is no team to meet with to go over possible treatments or surgeries or hopeful outcomes. You are simply told what they think your loved one has with much certainty, and sent home to do some research on the internet. You wind up alone, scared and with many questions. Questions with answers which bring on more questions and no positive conclusions or possibilities.
Once the prognosis sinks in, you go through stages of denial, anger, hope, disbelief and eventually, grief. But the person you are grieving is still there, living with you or possibly they are your parent who can still do most of the things they could before, but every once in a while there is the reminder that they are not themselves. That something beyond horrible is lurking beneath the surface, just simmering and waiting to overtake.
As a caregiver, you are left with many questions, frustrations, loneliness, and dilemmas that you could have never seen coming. The tsunami is in full force, throwing you in different directions, debris and chaos surrounding you at every turn you make. Sometimes you think drowning might be the easier path to take. But you can’t, because you have to take care of your loved one who can no longer take care of themselves. And there are cases where you still have children to worry about and care for – or maybe other family members counting on you – and your burden becomes heavier and heavier each day. Bills. Getting dressed. Eating. Going to the bathroom. Carrying on a conversation. Finding something simple enough to do, yet engaging enough to make them feel like they are contributing.
Every single facet of your day becomes something to analyze and struggle to simply make a decision concerning. There is no off time. There is no break or time to sit back and ponder life without stress, worry and isolation.
Along the way, you pass bystanders who wish you well, yet are so thankful this isn’t happening to them. They are sorry for your problems and your struggles, but they are helpless to help. Only you can forge ahead and deal with the myriad of tasks and life changing events that come your way….slowly at first but eventually they are crashing at you daily. You are barely able to keep your head above the treacherous waters, but you do what you can, when you can, however you can and hope like crazy it will be enough to see you through to another day.
Then you have those awful nights. The nights your children, who still live at home, cry as they lie in bed and confide to you how much they are hurting and how they don’t remember their dad before the disease took over. And you are unable to do anything. Again, you are helpless to save those you love. You can’t stop the disease from killing your loved one and you can’t stop the pain from witnessing the overwhelming surge. It kills much of the love in your home. It sucks the joy and the happiness. It overshadows all special occasions. It is the elephant in the room at social gatherings and during awkward meetings at grocery stores and school events and upon run-ins with acquaintances who haven’t been seen in years.
Alzheimer’s disease is unlike any other disease. It takes a beautiful mind, and with much leisureliness, transforms it into a new one, with no relation to the previous owner. It encapsulates a family into a nightmare and doesn’t relent. There is no escaping, no matter how much money or prestige you may have. There is no break. There is no hope. There is nothing but confusion, heartache, guilt, loneliness, frustration and if you are lucky, glimpses of days gone by.
This is a problem for our loved ones, for our neighbors, our society, and our world. We need to find ways to build life rafts, throw out life-lines and help everyone struggling to stay afloat. Then we need to find a cure so we no longer need all of those support systems.
Otherwise, we will all end up drowning. Together, yet separately.