RE: Living with Alzheimer's Disease: Safety, Safety, Safety
After reading several of Richard's columns, I would like to respond from the point of view of the caregiver.
Maybe caregivers do not do everything perfectly. Certainly we do not do everything exactly as the person we are caring for might desire. But after making several serious errors (accommodating my husband's wishes), I decided that a person with dementia is not usually the best person to be making the decisions. Sometimes this means their wishes will have to be set aside, in the best judgment of the caregiver.
It should be remembered too that it is the caregiver who is now responsible for everything related to the management of the household, the finances, and even the health of the person with dementia, and we are the ones who will have to deal with the results of our decisions. We are also the ones that the entire world will hold responsible for the decisions made.
In addition, due to our loved one's short memory loss, topics may often have to be repeated. Some days I feel like my head is going to explode and I just do not have the patience to go over things again and again, let alone have repeated discussions about each decision. I wish it were possible, but it is not - physically or mentally.
I would also like to point out that the person with dementia may think that they are perfectly safe and capable to attempt something, but in fact they are not. The caregiver alone may recall failures involving previous attempts or details that the person with dementia remains unaware. Perhaps this is one reason why people with dementia often continue to drive, even after they have had several accidents. So, ultimately, it is the caregiver's responsibility, and decision, to make sure that they don't continue to put themselves in danger, even if this conflicts with their wishes.
My husband was diagnosed with dementia five years ago. He has told me that one thing that is hard for him is that on some days he can be perfectly rational, while on other days his brain "short circuits" kick in - he can not reliably do what he did the day before, nor think clearly. This creates difficulties for both him and me.
In our caregiver support group, we talk about how a person with dementia never gets up in the morning and announces, "Today I'm going to start a fire in the middle of the living room floor" or "I'm going to wander off while you are taking your shower." So we live with constant concerns about what the next stage will be like. Yet, as caregivers, it is our responsibility to anticipate the problems in order to protect our loved one, as well as other members of the family.
Dementia is not something that happens just to the person with the disease. Every family member's life is turned upside down by this disease. As caregivers, we try to be loving and patient, 24 hours a day, but we are only human. We can only do what we can do. Though sometimes that is not enough, we try to do our best.
Jan Hournbuckle
My husband wanted to add his thoughts:
"I understand Richard's frustration and share it at times, but with dementia of any kind, we are not rational 100 percent of the time. I cannot predict when my brain is going to "short circuit', therefore my future behavior is not predictable. I feel that it is my responsibility to adjust to my wife's judgment, because my judgment can no longer be trusted all the time. I believe that if I accept my dementia and what it represents, I must give up some of the control I used to have over my own life. I have to follow the rules that my wife lays down, and do my part to maintain or foster peace in our home. This doesn't mean that my wife never asks my opinion or what I would like to do in a particular circumstance, but she has the final say-so, because I realize that most of the time she sees the situation more clearly than I do. My part in this progression of dementia is to make my wife's job easier, not harder. She is under enough stress by carrying the complete responsibility for our welfare, since I can't do it any more. I also trust after 36 years of marriage that she has my best interests in mind. She wants my life to be the best that it can be during these changing times."
Perry Hournbuckle
