I want to share an amazing story with you today that hopefully give you a visceral feel of what life is like for all Alzheimer’s caregivers no matter who they are, where they live, or what age they are. Keep in mind that Alzheimer’s disease lasts from 2 to 20 years with the average being 8-10 years. That’s a long time with continual maximum emotional and physical stress.
A former Alzheimer’s Caregiver
“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.
My name is Irma and I live with my husband Arthur. About 8 to 10 years ago, I was noticing subtle changes that I, for the most part, thought was nothing more than my husband becoming bored with life.
Arthur and I made an appointment with the doctor to get a physical exam and it was confirmed that he had Alzheimer’s.
Optical illusions are a huge part of Arthur’s daily life. He sees 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.
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 Arthur 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.
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 but I was using caution.
On a few occasions, social workers, nurses and doctors approached me. All of them stated more or less the same thing: “Ma’am, you’re at the age now that you will not be able to continue to care for Arthur. 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 Arthur my word that I would do my very best to keep him out of a nursing home.
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 because Arthur 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.
I could go on with many things that take place on a daily basis, however, please know Alzheimer’s is for the caregiver a very nerve-wracking, trying, exhausting, confusing act of 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. Unfortunately, our financial situation has deteriorated over the years and I have not been able to afford that outside care. And so it goes.”