To be a caregiver for a person living with dementia is not an easy task. I am sure anyone reading the Alzheimer's Reading Room knows this by now.
However, the issues aren’t just the actual "taking care".
In addition to the difficulties of caregiving, I think many of us struggle with the emotional issues of guilt and frustration, and, quite truthfully, never really knowing if we are doing the right thing.
By Carol Blackwell
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Confession Number 1
I absolutely agree with Bob DeMarco when he says how important it is to keep on with your life as it was before Alzheimer’s reared its ugly head.
I know that staying involved with life helps my Bob, keeps him engaged, stimulated, etc. That being said, the effort does take a toll. It is still so tempting to stay in our insulated ‘bubble’.
When we are home alone, we have our own schedule. We arise around 7, have breakfast, read the paper, exercise, discuss news events, run errands or do chores in the house, etc. I become accustomed to spending part of each day looking for gloves, keys, the cell phone, etc., things that seem to ‘walk off’ by themselves.
I get used to answering the same question, hearing the same concerns. I know the chores we can do together and the ones that are more difficult for him. It seems like a regular life.
Once we go out with friends, or to a party, I am forced to see that others don’t live this way.
I remember that my Bob used to be an extrovert, always had the latest news, could remember the scores of football games from years ago, remembered a myriad of historical events.
He can’t do that anymore.
He is now very quiet in groups, speaks some, but does not say much. In these times, I come face to face with what ‘could have been’ for us, but isn’t.
Don’t get me wrong. I am happy for those couples that aren’t dealing with disease, sometimes, I want to say to them,
“Please, please appreciate what you have and savor it, it may not last.”
It’s not that I feel sorry for us -- life does what it does and we are happy with each other -- but I can see why sometimes people with Alzheimer's disease opt to NOT continue to live life the way they did.
I think it is critical we DO continue all the things we did, but there is a price.
Confession Number 2
I know strangers think I am a ____ ( starts with a B, rhymes with witch). I have always been irritated by spouses that complete the other’s sentence, interrupt them, etc. However, I have become one of these people. Not because I want to be, you understand. It’s just the way it is.
Confession Number 3
I tend to order for Bob in restaurants. Deciding what you want on a restaurant menu can be daunting to someone with Alzheimer’s. We usually take a while to talk about the menu and what might work.
Sometimes, Bob and I talk and come to a decision, but when the wait staff asks him for his order, he sometimes forgets and then can’t decide and gets confused.
What seems to work now is for us to decide what he wants and then I order for both of us. I have gotten weird looks from the wait staff when I do this. In fact, one person said, “Boy, you guys must have been married a really long time!” It didn’t sound like a good thing when she said it. I hate that.
Confession Number 4
I sometimes answer questions that others ask Bob. Most of the time he can answer himself, but sometimes, if the question is more involved, he will send me a pleading look, and I will answer for him.
We have been together long enough that I pretty much know what he would say. Sometimes I get weird looks when I do that, especially if it happens more than once.
On one hand, I don’t feel I have to tell strangers that Bob has Alzheimer’s because it isn’t their business. On the other hand, I don’t like to be thought of as a ‘you know what.’ It’s a trade off, I guess.
Confession Number 5
I feel guilty most of the time. I always wish I could do a better job than I do, be more patient, etc.
I wish I could be like Mother Teresa, but that ain’t gonna happen.
Bob is a great guy—he deserves the best. I wish I could make it through one day when I didn’t sigh even once, or say, “If you would always put X in the same place, you wouldn’t misplace it.” Yeah, right. AD is about putting things in the wrong place.
I am getting better, I think, in this regard, so I have some hope for myself.
However, if I have a good day with Bob, then I think, “Yes, but if you were a truly good person, you would be visiting his mother more often -- she needs someone too.” And I should.
Bob and I trade off visiting her. He is the only one she recognizes. Her face lights up like the sun came out when he comes in. She doesn’t know who I am, but that isn’t her fault and she was always very sweet. She deserves better.
What an awful disease Alzheimer’s is!
Well, we keep on keeping on because, basically, what other choice is there? There will be a cure for this disease one day---and it can’t come too soon.
In the meantime, we live life the way we always did, regardless of the price.
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Original content the Alzheimer's Reading Room
*Carol submitted this article to the Alzheimer's Reading Room in January, 2011.
Alzheimer's care is the art of looking after and providing for the needs of a person living with Alzheimer's disease or a related dementia.
Coping requires us to make our own conscious effort to solve personal and interpersonal problems. This allows us to minimize stress, reduce conflict, and to better understand our situation.
Caregiver is a person who gives help and protection to someone who is sick or in need.
Empathy the ability to understand and share the feelings of another.
Compassion a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate their suffering.
"Caregiving brings about a swirl of feelings: sadness, frustration, anger, anxiety, guilt, resentment, confusion, isolation, loss, fear, grief, impatience and stress". AARP