Being a Caregiver for a Loved One with Alzheimer’s disease
Only one who has "been there and done that" can even begin to appreciate all of the physical and mental problems involved with being a full time caregiver to an Alzheimer’s patient, especially for one that you love so deeply.
I think that most people have no idea when a loved one is originally afflicted with Alzheimer’s, I know that I didn’t. As a part of the disease, the patient is prone to keep the problem a secret. It was a year or more after my beloved wife died that I realized her Alzheimer’s started long before I had any inkling of the problem. After all, Alzheimer’s is something that other people get. No one in her family, or my family for that matter, ever had Alzheimer’s so why should I have suspected.
For many years my wife had made me promise that if anything happened to her I would not put her in a home, to which I had readily agreed. I take great pride in the fact that I was able to honor my pledge. We both had wills refusing resuscitation and were very strong in not wanting to live a life of dependency.
We didn’t have any family in the area that could help out so it was up to me to do everything. I started by reading everything I could get on the subject, books, the internet and the Alzheimer’s Association. The information was useful, but still didn’t prepare me for the difficult tasks involved.
It wasn’t until my wife started speaking more Japanese, her native language, than English that I realized that something was seriously wrong. Her primary care physician scheduled an MRI which indicated the strong possibility of Alzheimer’s. My reading had shown me that a positive diagnosis isn’t possible without a post mortem. At the physician’s suggestion we scheduled an appointment with a neurosurgeon. He, of course, couldn’t communicate with her so he diagnosed her with severe depression. A further appointment with a psychologist (one who spoke Japanese) confirmed that she was not depressed at all and most likely had Alzheimer’s.
I hadn’t realized that my wife was in a later stage of the disease until she started speaking all Japanese and no English. She had covered it up for a number of years, which I learned is a common thing for people with Alzheimer’s. For some reason there is a stigma attached to Alzheimer’s unlike other diseases causing people to hide it from everyone.
I learned very quickly how difficult things were to become. The lack of sleep for the caregiver due to the strange sleeping habits of the patient wound up being the most difficult part. She would wake at one thirty in the morning and want to eat breakfast. Other problems included the attempts at explaining things to a person using logic when the person isn't able to think logically. How can you explain the reason for doing something if you can’t use logic? Trying to get the patient (loved one) to eat or take their medication when they continually refuse or spit it out. The refusal to bathe for no apparent reason. Washing and styling her hair, taking her to use the bathroom at home or outside of the home became major undertakings. The ability of the loved one to remember things from long ago yet unable to remember where you are going after being told over a dozen times. The loss of the loved one that you were married to, in my case for over 52 years, replaced by a totally different person who you just can't get to know. The difficulty in dealing with the medical community, who are generally loving and caring, but for the most part don't know how to deal with an Alzheimer’s patient, like the hospital laboratory technician who got mad when my wife screamed at her for no apparent reason.
The list of problems goes on and on. One of the greatest heartaches is knowing that things aren’t ever going to get better and that each day is going to be worse than the day before. Her physician prescribed the only medication that was available at the time for Alzheimer’s, but it gave her violent nightmares and had to be discontinued, it wasn’t any kind of a cure anyhow it just prolonged the disease for some people.
Help is available from numerous agencies for some people, but with my wife reverting back to her native language the inability to communicate was a major problem for everyone, including me. Of course there is nowhere in Maine where there is a day care program for Alzheimer’s patients where they speak Japanese. We have no local family and it is almost impossible to locate anyone to come in for a few hours that could handle the situation. Complicating the things was the intense jealousy my wife developed to any other female in the house. She was convinced that they were trying to steal me from her. Alzheimer’s causes changes to a person that defy explanation. I did finally get someone to come in a few hours a week posed as a nurse which allowed me to get away for short periods.
To maintain your sanity the caregiver must have some time to themselves.
There were other problems for my wife and I, like when in spite of my close monitoring she managed to get out of bed, fall and break her hip. The hospital stay, physical therapy and recovery of an Alzheimer’s afflicted 78-year-old woman with whom you couldn't communicate was absolutely brutal. Again the medical people tried, but due to their lack of understanding of Alzheimer’s patients they sometimes caused more harm than good. Case in point; the nurse who scared her by hollering into my wife’s ear when she didn’t respond to a question in English and the physical therapist who insisted on procedures that caused my wife to have an extreme panic attack. They would try to reason with her, not realizing that late stage Alzheimer’s patients can no longer reason.
I could have put my wife in some sort of a home and if she had lived very much longer I might have had to do that. If they don't have any money the government will pay for their care, if they do have money they can pay upwards of $100 a day for someone else to care for them until they their money is exhausted. One professional even suggested that I should get rid of any monetary assets my wife had so the state would pay for her care. I couldn't do that as long as there was any way that I could care for my wife, it was the least that I could do for the woman I loved.
I have had people tell me "I know what you are going through. I used to see my grandmother about once a month when she had Alzheimer’s and it was hard". I never said it, but I always thought "You don't have a clue how hard it is unless you have been a 24 hour a day, 7 day a week caregiver for a loved one".
Certainly I would do the same thing again. She died about three years ago from pneumonia brought about by Alzheimer. Not a day goes by that I don’t think about my departed wife, but I wouldn’t wish her to come back the way she was and I’m sure that she wouldn’t want to. As hard as it is to be a full time caregiver for an Alzheimer’s patient is it’s what you do for one you love. I’m glad that I had the chance.
James W. Rhoads
Michiko Watanabe Rhoads