Living with a person that has dementia is incredible from the standpoint of learning. The caregiver is constantly making adjustments because everyday is not the same and sometimes changes are made minute to minute. One of the most difficult challenges I have personally is how I speak, what I speak, and the attitude in which I say things.
Mom’s vocabulary is pretty much still the same so it becomes difficult when she can say words, but when she hears those very same words, she can’t process them. The other day, we were getting ready for a get-together with friends. I tried to plan the menu around the theme of simplicity for all our sakes, but there always is a bottleneck of activity at some point. So, I looked at mom who always wants to clean up before I am ready for her and said, “Don’t worry about it.” She laughed and told me why should she worry – that she doesn’t worry much any more. She could no more understood what I was saying than if I simply told her “hakuna matata”.
You have to know that I love idioms. I enjoy saying things that have a meaning beyond the normal use of each word. Well, can’t really use them any longer around mom! If I say, “piece of cake”, she will probably tell me she doesn’t like sweets or if I told her we aren’t “cutting corners”, she’ll tell me that the scissors aren’t out.
Here are some things I am learning and still having trouble putting into practice:
- Say what I mean in the plainest, simplest of words
- Make sure I am making eye contact – touching her arm sometimes works, but not always
- Time what I say – not too early so she’ll forget, but not too late or else we surely will be late!
- Give an allowance of time for what I am saying to sink in
- Be patient because sometimes it takes multiple tries to communicate anything at all
- Speak slowly because processing is delayed especially if I need to get feedback in return
- I will not have 100% success in getting understanding and that is okay
I am sure other people can add much more to this list. From last year to this year, this list has changed and in a few months it is likely to change again. I truly have a growing admiration and respect for all those who find themselves in a caregiving role and for those who dedicate their lives to help those like us.