Saturday, May 25, 2013

Caregiver Emotion #1 – Guilt

Recently, I read an article on caregiver emotions, and thought the idea worth expanding on. Having been a caregiver for ten years, I was familiar with all the emotions featured in the article, as well as several others.

Emotions can run high for caregivers, and I suppose that if you asked what a caregiver was feeling, guilt could easily be at the top of the list. Even good caregivers feel guilt no matter how unfounded. Some of us just have this little guilt complex that travels rampantly throughout our brains.

I don’t know about you, but I can manage to feel guilty over trivial matters. Some of the guilt associated with caregivers can be circumstances that seem entirely beyond our control. One of the guilt generators can be how a caregiver can be pulled in a lot of different directions at one time. I think this is especially true when the person with dementia is young. I know that I was conflicted with work and my responsibilities to care for Jim. Since I was only in my mid-forties when Jim began to need someone to watch over him, I didn’t think that quitting my job was an option. That is not the decision every caregiver makes, and I could see where both options could cause some feelings of guilt.

Had I taken a leave of absence, it would have lasted for several years because Alzheimer’s develops over time and can last for ten to twenty years. There were several advantages to keeping my job, one of which was to keep my health insurance. With good insurance, we were able to afford the diagnostic tests necessary to determine the type of disease and scope of the damage to Jim’s brain. The insurance meant we could afford the expensive medication. I was also able to continue making a living that paid the bills and avoided the stress and strain involved with having to make hard choices of medical care or paying the electric bill. Another advantage of working is that although Jim was never off my mind, I did have something apart from caregiving to fill my days. I was able to interact with other people at a time that Jim became silent and no longer carried on a conversation.

The downside was that I scrambled to find someone to watch him during the day. Between family, professional caregivers, my day off each week, and vacation, we managed to have someone with him at all times. It wasn’t easy, and had it not been for a flexible work schedule, it would have been an impossible situation. I still managed to feel guilty at times because I wasn’t there for him when he needed me, but in retrospect, I think it was the right decision for me.

Still, since I used all the caregivers during the workday, it meant that nights and weekends were my turn. Sometimes, Jim would be stubborn and uncooperative, and occasionally, I would lose patience. I beat myself up for those times when I blamed him rather than the disease. One time, I yelled at him and just about the time I felt totally like a worm, he started laughing at me over the colorful language I had used. We wound up having a good laugh over it, and it makes a happy memory rather than a guilt-ridden moment.

I think one of the most common reasons caregivers feel guilt is the nursing home decision. No matter how necessary, or thoughtful, the decision, it tends to make a caregiver feel that she has let down the person she loves. It is especially difficult when the family has promised they will never put their loved one in a nursing home. Caregiver feel like they have broken a promise when making the only decision that makes sense in the situation.

The nursing home decision was one I struggled with and put off as long as possible. Jim only slept a few hours a night and I was constantly exhausted. He began to wander off and no matter how careful we were, it only took a split second for him to disappear. It finally got to the point that we needed to put him in a safe place before he wandered off and we couldn’t find him. In that case, there would be no nursing home decision necessary. In my opinion, that wasn’t an option.

Unbridled guilt isn’t good for anyone. To help take control of your attitude, you need to have a reality check. If you are doing your best as a caregiver, and as a person, that is all you can do. There is a huge gap between reality and perfection. You don’t need to be the best caregiver in the world, you just need to be the best caregiver you can be. In the end, you need to make tough decisions that are not only best for your loved one, but also for you, the caregiver.

Copyright (c) May 2013 by L.S. Fisher
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