In the beginning, caring for a loved one with dementia is seemingly a good idea and the right thing to do. It is certainly something we think we can handle on our own. Caregivers are devoted and determined. Our life is now different than before this disease, but we adjust. Even when we don’t really know what we’re doing, we still tend to figure it out the best we can, and then persevere. If we stop paying attention for just a minute, something can happen. When we take the time to look up from our situation, we discover that concerned family members and friends are willing to help. There are solutions to almost every problem. Sometimes it’s as simple as taking a deep breath, remaining calm, and having a trusted person by our side to keep us safe on solid ground. This experience can be fun, sometimes frustrating, often frightening, but well worth the effort.
As far back as I can remember I have learned great things from my father. He taught me words of wisdom, valuable life lessons, and how to be a good person. Now, I am learning from him about life with Alzheimer’s in a way that has given me a deeper, more personal awareness.
For me professionally, doing and saying the right things came naturally. At least it seemed effortless, until the day I became my Dad’s caregiver. How different it is when you are caring for other people’s family members. You know them only in that moment of their life. There is no past, no family dynamics, no buttons that can be pushed. There is just today. Then, at the end of the day you go home. It’s no wonder that it seemed so easy.
For some weird reason, when you are caring for your own, you tend to forget every, single thing you know about this disease. I certainly did. During the first year that my dad was living with me, we both learned a lot of new things about the effects of this disease on memory, thinking and behavior.
We were both surprised when there was an electrical fire in the lamp next to his bed. I was shocked that he would replace a 60-watt bulb with a 200-watt. He was astounded that it was a problem. To him it just seemed to be the right thing to do if you wanted more light.
The time we encountered each another in the hallway between our bedrooms at 1:30 in the morning, we were both a bit flabbergasted. He wondered what I was doing up so late. I questioned why he was returning from the garage with an electrical drill in his hands. Dad explained that the hole in his new paper wall calendar was too small to go over the nail, so he had decided to use the drill to make a larger hole. As you might guess, I was not in agreement.
Until it is in your home and you wake up every morning, go to sleep every night and worry about the tomorrows each day, you can’t fully comprehend the impact of this disease. From the very first day you hear the diagnosis, your world – and theirs – begins to change. Shortly thereafter you realize that everything changes, again, and again. And, so must we.
Many of the changes with this disease are ever so slowly and in such a subtle way that we often don’t even realize when it’s time to readjust or do things differently. We become acclimated to living in an unpredictable environment. We think we’re fine, until the moment we finally realize that we are not. And, we also tend to think our loved-one is okay until something unexpected occurs.
All of us wish that our parent, spouse, friend or partner had come with a book- like a personal instructional manual. Perhaps then, we could be better equipped to anticipate what was going to happen next. Adjustments could be made, plans put into place, adequate time allocated, and we could mentally prepare. We could expect the unexpected. Even better, this manual would have a special section in the back for troubleshooting. We could look up a problem in the index, turn to the exact page and find just the right answer. Wouldn’t that be a valuable caregiver resource to have handy!