In no way do I consider myself an expert or even qualified to be an authority on dementia, but I am offering these suggestions from the experience that I have attained and the books that I have read. I am not hung up on the technical diagnosis, and I would suggest whether it is dementia, Alzheimer’s, or diminished capacity, it all strikes me the same way. It is a change in a loved one, and it is a challenge for those who do not have the disease.
There are amazing resources available online. I have learned a lot from the Alzheimer’s Association, both their resources and videos. I have attended workshops and read books about Alzheimers. I know that the diagnosis sometimes brings some comfort to the children and spouse of the person suffering, which may help explain the changes in a loved one. Beyond the diagnosis, each person’s expression of dementia may be a bit different. A person who was loving, kind and docile their entire life may morph into a belligerent and difficult person who would make a pirate blush with their language. The reverse also holds; someone who was difficult or not friendly may turn into a loving peaceful person.
My dad’s face lights up when I walk in to see him. He no longer remembers my name, but he does remember that I am a nice person who he likes. I am ok with that and hold on to that for now. I am afraid that in the next stage I will be unrecognizable. I was told that in his dementia care facility he sat at the bedside of a friend under hospice care patting his leg and muttering encouraging words. My dad was always a social person who cared about others and he remains that way today.
So, here are some tips for dealing with this (according to me):
- Don’t confront their reality. If my grandfather remembered wheeling me into town in a wheelbarrow back in Romania when I was sick with a fever, then so be it. What is to be gained by arguing?
- Trying to explain difficult concepts will only aggravate. It will aggravate you and them and no ground will be gained.
- Be gentle and kind. Remember, as frustrating as this may be, this is the person who raised you and cared for you when you could not care for yourself. I am not naive enough to believe that all parent/child relationships were good and there were never any issues, but at this point, I suggest suspending all of that and giving them the benefit of the doubt by treating them with respect and dignity.
- This disease is progressive. This means that today is likely their best day and tomorrow will bring a fainter version of today. I have not encountered a recovery of any kind to an improved state of being.
- Be patient and tolerant. You may have heard the story a dozen times before, listen again. You may have answered the same question five times already, answer it again.
- Your loved one is still with you. I have offered to my mother this thin blanket of solace. I would ask, “How many of your friends who have lost a spouse would trade places with you just to hear their husband’s voice or to see his face again, or to kiss his cheek?” It is not ideal, but you still have a person who you can love and hold.
I am not an authority on this topic but sadly I have more experience with it than I care to have and as I look into the future, I can see that I will only be learning more and more. As we live longer lives and have better treatments for diseases that formerly were terminal, we will likely face dementia of some kind. I know my father well enough, that in the interest of science (or helping someone else), he would not mind me sharing our experience.