JOAN’S BLOG – MONDAY, AUGUST 18, 2008 – NOT CUT OUT TO BE A CAREGIVER?

As is often the case, a message board post prompted this blog.  Our member, Jean21, started a topic, entitled Don’t Think I’m Going to Make Being a CG. The subject has come up in various other threads – spouses questioning whether they have the patience or desire to see this care giving journey through to the end.  In researching background for this blog, I found one recurring theme in the articles I read, that I thought was so absurd, it made me laugh - “Think carefully about being a caregiver, and if you don’t think you are cut out for it, DON’T DO IT.” Well, my goodness, I was not aware that caring for a spouse with Alzheimer’s Disease was a job for which one voluntarily applied. We do the job because fate sent Alzheimer’s Disease to our spouses, whom most of us have loved, respected, honored, and decades ago, willingly vowed to care for in “sickness and health.”

But that does not mean we are all inherently cut out for the care giving job, nor does it mean we all embrace it or do it well.

With a brain disease such as Alzheimer’s, the personality, cognitive abilities, and entire spousal relationships change. You are not only dealing with the emotional losses, but the repetitive questions, aberrant behavior, episodes of rage, irrational thinking, and in my opinion, one of the most difficult – the loss of reasoning ability. In the advanced stages, there is the incontinence, bathing, dressing, wandering, hallucinations.  Is it any wonder we question our ability and lose patience?

I want to be a good caregiver to my husband, who lovingly cared for me during my physical illnesses; I want to be patient, kind, and wise. Sadly, I have found myself to be lacking in all of these areas. I mentioned in my message board post that the only way I have been able to gain a modicum of patience is to learn about the disease from the perspective of what is happening in the brain. In most instances, I am a fairly quick study, but in this case, it has taken me four years to come to this realization.

Four years ago, we had an episode I will never forget. I had gone to bed around 10 PM. At 11:30 PM, my husband, who was just coming to bed, woke me up, and started screaming at me that I did not fix his laptop computer. “Huh? What? What are you talking about?”, I asked, completely befuddled. He was in a wild rage, yelling that I should have fixed his computer. When I asked why he didn’t ask me to do it when I was AWAKE, he said he knew I was busy, so I should have done it later. The fact that “later” I was sound asleep, did not seem to register with him. No matter how much I tried to reason with him (silly girl!), he could not connect my BEING ASLEEP with the fact that I could not fix his computer. This was at the time that there were many other signs of trouble, but we had not yet gone to a neurologist for testing, so I was at a total loss as to what was going on.

Since that time, I have learned that Alzheimer’s Disease shorts out the “reasoning switch”, and I no longer even try to reason with him when he goes off on one of those tangents.

For four straight years, up until last month, I tried and tried and tried to hold onto the old relationship we had, and relate to him as I used to. I finally learned that Alzheimer’s Disease had changed his brain forever, and I had to learn to relate to the disease – stay calm and turn away from the raging storms.

These were very difficult lessons, but I did learn them from reading all I could about how AD affects the brain. I cannot say this will work for everyone, but for me, it is only through learning what AD does to the brain, have I had any small successes with the patience of AD care giving. Because I have loved my husband so much and for so long, I keep trying to learn and get better at this care giving business.

Please post comments under the existing message board topic: Not Cut out to Be a CG.

Feedback to joan@thealzheimerspouse.com

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