Wednesday, February 29, 2012

Accepting Caregiving

Now that we have moved from home, Mom and Dad are in need of some more help. Mom can not be left alone at all so unless someone else is in the house, Dad can't go out to the grocery store, to meetings, or really to do anything. Before we left, they got an amazing caregiver who comes four days a week for four hours, but Dad is realizing that they could use her more often. However, this is hard for Mom to accept, and I can understand why.

For someone with mid-stage dementia, they still know much of what is going on. They know they are sick, but they do not really know how sick they are. They may not believe they need to be supervised at all times, after all, they are adults. As Mom says, she does not want a "babysitter." It is very hard to say that her caregiver is not a babysitter though. They do projects together and she helps Mom get dressed and takes care of daily tasks, much of what our babysitters do for our son.

I really do not know how to help someone with dementia accept that they need a caregiver. They don't believe they need one and they don't understand why a family member can't be there 24/7. For some people I am sure they even become angry at their family for getting a caregiver rather than family staying with them all day. I can only imagine what they might be feeling: abandonment, misunderstood, angry, like they are being babied, and betrayed. All of this is understandable.

These are the hard times when it is up to us to make decisions for our loved one with dementia because they can't make the decision for themselves. We will always question when we do this because we really want our loved one to be ok with the decision. We want to treat them as adults who can still make rational choices and we do not want to upset them.

But on the other side of this, I know what it is like to have someone else make decisions for you when you can't. Sometime when my bipolar disorder is particularly bad, my husband has to make decisions for me, like make me exercise, go to bed on time, or tell me what to eat. When this happens, I am pretty mad at him for making choices for me, after all, I am an adult. But in the end, he is really taking good care of me and helping me have a better life.

People with dementia may never be able to look back like that and say that they understand we are caring for them well. However, if we were to go back a few years before the disease presented itself and asked our loved one if this was a good decision, they would probably say "yes." Sometimes we have to hold on to the understanding that if our loved one could understand, they would be happy with our choice.


Rev. Katie


  1. Even though Mom is in early severe stage, she still has flashes of self-awareness, enough to tell me she doesn't need help --- even when she does. I try to keep my sense of humor and when possible, I put myself in her world, since she's often not in synch with mine.

    My mother is now in a daycare program 5 days a week. We started with 2, went to 3, and now after 3 months, she goes everyday. It's good for her and it's good for me. She needs the social contact. She was constantly asking me where the other people are, when they would get here, or tell me she was going to look for them. It's a relief to know that she's being cared for by people who understand dementia, like her for who she is today, and treat her with respect while keeping her safe.

    1. I'm so glad you found a good daycare program! We just went to look at one the other day and are thinking about it as well. Sounds like the socialization is really something she likes and with people who really understand.
      Rev. Katie

  2. Taking care of people with dementia is a great challenge. You need to deal with their actions properly. It needs to let them feel that they are important as well. These are just the few things I've learned from a series of dementia training.