Apr 24, 2012

Alzheimer’s and the Truth from Both Sides

Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

By Carol Blackwell
Alzheimer's Reading Room

Definition of truth.

Alzheimer’s and the Truth from Both Sides
(1) : the state of being the case : fact

(2) : the body of real things, events, and facts : actuality

(3) often capitalized : a transcendent fundamental or spiritual reality b : a judgment, proposition, or idea that is true or accepted as true c : the body of true statements and propositions 3a : the property (as of a statement) of being in accord with fact or reality
Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

It depends on which world you are in, I think. What is ‘real’ to me is not necessarily ‘real’ to my husband, Bob. The truth of both worlds is that we love each other and are trying to do what is best for each other.

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Carol’s Truth

My name is Carol Blackwell. My husband, Bob, was diagnosed with Alzheimer’s 5 and a half years ago. He did well—with the help of Aricept and Namenda—for the first 3+ years. He started a small photography business, took classes and we traveled a lot.

In February of last year Bob began a steeper cognitive decline. We can’t travel anymore, and he seldom takes photos. He can’t drive which is a source of constant frustration for him. Bob no longer remembers he has Alzheimer’s and I think that is a blessing. He used to worry a great deal about the progression of the disease and now he isn’t sure what it is. He now believes that he is young, newly graduated from college, and should be able to get a job and ‘do something meaningful’ with his life.

Bob attends day care three days a week and loves it. He is a strong extrovert and enjoys being with people. The day care is great---there are many activities and lots of singing and they often take ‘field trips’ which the staff says he loves. (They also say he loves to dance and I have pictures to prove it)

However, Bob does not seem to be happy at home anymore. He is unable to settle down and paces a lot. He has trouble grasping what I am trying to tell him and becomes angry at what he thinks I am saying, even though what I am trying to communicate is something else.

For example, our friends visited last month and I said to him, “Bob, why don’t you shave and take a shower so we can hike with our friends?” He looked at me in shock and said, “How can you say something like that about them. They are nice people”. ???? It does make it hard to communicate when one person can’t process what the other is saying!

Bob can no longer do household tasks, although he often tells me he wants to help. He frequently wants me to take him somewhere, but can’t express to me where he wants to go or what he wants to do. He tells me that he is ‘afraid’, but he can’t tell me the source of the fear. I am quite sure that he often does not know who I am, although he knows I am Carol and that I take care of him. However, once in a while he will look at me and say, “Oh, it’s you! I didn’t recognize you. You know I love you.” ???

After a ‘sort of’ conversation the other day, I realized I needed to go deeper into his Alzheimer’s World to find the source of his discontent and the following narrative, although not his actual words, reflects comments he made to me many times.

Bob’s Truth

“My name is Bob Blackwell. I am fine. People keep talking to me about this Alzheimer’s disease, but I don’t know what they mean. I am fine.

I attended the University of Georgia and I graduated not too long ago---I can’t remember when, but it doesn’t seem long ago. I want to get a job, get married and have children. I want to make a difference and have a career like everyone else, and I am frustrated that I don’t get any opportunity to do this.

I live with an older woman who is nice and I like her most of the time. Her name is Carol. I think she must be my mother because she is always telling me what to do. She always talks about ‘shaving’ first thing in the morning, but I am not sure what that is.

She tells me to take a shower a lot and sometimes I do. She lays out clothes for me but I don’t always wear them. I can pick them out myself and I get irked when she tells me I am wearing too many layers and shouldn’t wear the white shirt over the other clothes. She doesn’t let me drive and I know I can because I drove when I went to Georgia. I am a good driver, but she tells me that ‘they’ won’t let me drive because of this Alzheimer’s thing. It is unfair. I don’t know why they are doing this to me. I have never done anything to them.

I do like the woman and she does a lot for me so I try to be kind to her and I know you must help and respect your mother. I keep trying to tell her that, while I like her, I want her to take me somewhere so I can get a job.

I do go to an activity center and there are some nice young women there, about my age. I like them and would like to find someone to date. I am a little worried about Carol, though. I have told her I know I am her son and owe her respect, but she gets upset when I say that, tells me she is my wife, starts crying, and usually leaves the room.

I feel really awful when she does this. I did tell her I think she has a mental problem and needs professional help. For some reason, she thought that was funny. I don’t think it is funny. I want a life…..”

So, here we are, each of us telling the ‘truth’ from our side. It didn’t ‘make us free’ but I do have a better understanding of his viewpoint and I will try and make that work to his advantage. I will try and be more patient and more understanding.

I can’t promise I won’t be still upset. I do find the more I understand ‘his truth’, the better I react to it.

And so the journey continues……one we didn’t want to make, but here we are and still together……..

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

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