I wrote this story to be assistance to perhaps even one family. If that be the case, then I have done my part for friends with Alzheimer's.
Our Golden Years with Alzheimer's
Alzheimer's was only a medical name I had heard for many years, only knowing it had to do with memory loss. Little did I know that I would come to know the dreaded word in real life. How it begins, what it does, how it affects the life of the one who has Alzheimer's and how it affects family and friends is what I am sharing with you.
The words in this story are true; only the names have been changed. This disease is nothing to be ashamed of. It is very misunderstood by everyone who has not been affected by it directly; it is the unknown.
My name is Etta and I live with my dear friends and brother in Christ, Isaac. About 8 to 10 years ago, I was noticing subtle changes that I, for the most part, thought was nothing more than my friend becoming bored with life and maybe our living arrangement.
I knew something was not right, starting with, 'I don't know where my car keys are," or "What day is it?" or, "Let's get out of this store, I'm tired." Isaac didn't want to bathe, shave, go fishing or make friends. When company came, he would disappear.
Then his driving became so crazy. He did not realize he was in the wrong lane. He would run stop signs and forget to put the car in park (actually rolled to hit steps by a mobile home). He could not get the car out of park because he had the key out of the ignition. Isaac could not, as time progressed, figure out how to put the key in the car lock or put a key correctly into anything. It just did not work.
Isaac lost about 45 pounds in just a short time. His appetite went from full meals to wanting only junk food like chips, ice cream, candy and lots of pots of coffee day after day.
Isaac had not in all the time that I knew ever had a physical checkup. One day, out of nowhere, I told Isaac that we are not getting any younger and I found a good doctor near where we lived. I told him maybe his weight loss was due to diabetes. Isaac thought on it. With the great help of our mutual friend, we coaxed Isaac to keep his appointment with the doctor. Isaac finally did get a physical exam. Confirmed: Alzheimer's!
Isaac's doctor prescribed Aricept, a medication that is supposed to slow down the progression of Alzheimer's symptoms. After being on this medication for a year or so, I as his caregiver and friend could not see evidence of it slowing down or improving his symptoms of the disease. I am baffled.
Another day, another week passes with obvious changes that break my heart.
As with the passing of time, I had to learn an entirely different way to communicate with my dear friend. I had to listen with interest because I care, learning the challenges that will and do befall us on all to frequent a basis. I learned very quickly to listen, never to interrupt and perhaps a short time later, when the real Isaac cam back, explain that the brain is playing tricks on him; confusion hurts. I let him know I am here for him, no matter what.
Optical illusions are a huge part of Isaac's daily life. He sees larvae/worms on the carpet. He talks about the boss and the job. He lives more with pain, which confuses him to the point of name calling, not knowing who I am. He removes clothing frequently, not knowing what garment goes where or how to put his clothes on.
Of late, his desire for real food has almost completely vanished. I feel at a total lost much of the time.
Words of insult, of deep hurt come out of nowhere and in the presence of medical personnel and strangers – all directed at me, about me. I take it all knowing it is the disease and not the Isaac that I used to know. I have learned to never question why he says the things he does to me. I never argue with him or question what he says. Yes, I was verbally offended many, many times. But by now, by the grace and strength that almighty God gives me, I guess I manage to let it all pass. I wait for the real friend to come out, even for a few moments. Then my joy is back as is my willingness to continue the support and care for my dear friend.
I am reminded daily that life is short and that we are on earth for a reason. I have prayed diligently for patience, knowledge and obedience to the holy words written in the bible. With my heart, I tell you, God alone get us through every moment of every day.
As far as a support system, to this day, I have none. Not because I didn't seek help; I did. But no one helped me. I know there is help out there, a long waiting list and long wait for an interview. But for the time being, I am and must be alert at all times. All sharp knives, scissors and medications had to be removed from his sight. This was my decision. He has never threatened me in any way; I was using caution.
On a few occasions, I was approached by social workers, nurses and doctors. All of them stated more or less the same solution: "Ma'am, you're at the age now that you will not be able to continue to care for Isaac. This disease will progress to the point where it will take a big toll on your already failing health, not to mention you're not getting any younger." My steadfast reply was that I gave Isaac my word that I would do my very best to keep him out of a nursing home. You see, Isaac's mother was placed in a nursing home despite the fact there were grown children and other family members who could have kept her in one or more of their family homes. Yes, Isaac has a son who chose to leave his dad in my care. Family rarely calls Isaac; I'm all he has and I give him my all.
I could go on with many things that take place on a daily basis, but my writing this short story will have lost what it was meant to do if I linger on. Please know Alzheimer's is for the caregiver a very nerve-wracking, trying, exhausting, confusing act of brotherly love than any other disease.
If you can't deal with ever-changing situations that make you want to yell or give up, then you cannot and should not take on the responsibility of caregiver unless you have daily help, day and night.
Remember, above all – human beings get Alzheimer's. We are all human and want to be treated with kindness at all times, and then the rest will fall into place.
Your true inner strength will come from almighty God. He hears your prayers. I want you, the reader, to know that my personal life has been put on hold. I have no life other than to tend to the needs of Isaac. He comes first and foremost in my life.
I cannot visit my friends, go to the store for groceries or prescriptions, talk on the phone for any length of time or go to church. Isaac must be with me; he cannot be left alone, not even for a few minutes. Anything can happen as I have seen him leave the stove on, the faucet on and wander outdoors with his bare essentials. And so it goes.
Isaac can take a nap and come out of it as quickly as he fell asleep. Then confusion takes over and real harm could come to him and out home.
If you, the reader, have questions about this true story, you can contact ne at our local post office:
Weston, WV 26452