In this world, we need to love and be loved. We also need to feel a sense of competence or mastery in order to feel good about ourselves. Alzheimer’s slowly dismantles a person’s sense of competence. While living with this disease, the AD person and their spouse, family members, or caregiver(s) do an emotional dementia dance where the steps are always new and always changing.
Should I have rushed to do what Jim was trying to do in order to help, should I have offered to help and allow him the chance to accept or refuse? Or should I have just backed off and just watched to see what would happen? The latter is best when you are learning what they can or cannot do. The person with AD has to be given the right to try to do things on their own. The more they challenge their brain, the better off they will be. However, if they can’t do the task, the AD person has to learn to have the courage to allow their spouse/caregiver to help them without anger and frustration getting in the way. This scenario is not an easy thing to learn for either person involved. Frustration builds up in the person with AD, and may be directed at the caregiver, but ultimately the frustration is directed at themselves for not being able to do what they once could.
I didn’t always know what Jim was capable of at any given moment, although I had an idea. Each day, each hour of the day especially when fatigue set in was different and required rethinking my response. The only way we made this dance work was by talking openly about what Jim felt he could do, and those things he didn’t feel comfortable doing anymore (i.e. calling for a repairman and being able to remember the problem so it could be explained). Sometimes I overstepped and Jim would get mad because I assumed he couldn’t do something that he thought he could, which to him was demeaning. Then we would discuss, apologize, and move on.
This dance has to be approached with love, a willingness to show vulnerability, and a large dose of warmth and humor! We didn’t always succeed in making the dance look smooth, we had our share of missteps, but we kept on dancing! I’m so glad we did!