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.

Blessings,

Rev. Katie

Everyone Is An Artist

We have expanded the ArtCare for Dementia program that we run from the Carolyn L. Farrell Foundation for Brain Health to include other forms of art besides just the TimeSlips storytelling. Today we had our first papercrafting session and it went really well.

I have been scrapbooking for years and know how fun and meditative working with paper can be so I wanted to bring that to our ArtCare participants. I also needed to think of something that would be simple to do no matter how well your organizational skills were working or your manual dexterity. I wanted everyone to know that we are all artists.

Today I brought different scraps of colored and patterned paper and let everyone tear the paper up and glue the strips onto a white background. Then I cut those collages up in squares and mounted the squares on colored notecards. When you describe the project, it is hard to imagine the beautiful artwork that will be created out of the collages, but just look at these pictures to see what everyone made. The collages turn out to be mosaic and kind of a stained glass effect squares that can be set off wonderfully by a colored background.

The best part of all this was to see everyone have fun with the collage and really see their smiles once they saw their notecards. Projects like this really show how if we just let our imagination go, we can all create beautiful art. The purpose of our ArtCare programs is to bring joy into people's lives, and I think we really did that today.

This is a project you can easily do at home with your loved one with dementia. Then they have cards to send people for birthday's, anniversaries, etc... or put them into stacks of 5 cards with a bow around them and you can give them away as presents.

Blessings,

Rev. Katie