I am no expert by any means, but I have very quickly picked up on some dos and don’ts for when dealing with those with a form of dementia and their families from recent encounters from my experience with Papa. These are my thoughts and thoughts alone! Not one of medical professionals, not my family members, just mine. Mine and mine alone.
One. Don’t judge and say something ridiculous like: “I just talked to [your loved one] for a few minutes over the phone and it didn’t seem like there was anything wrong with him/her”. Thanks, I’m glad you came to that conclusion in the two minutes you spoke to him/her. How about being grateful, that alhumdulillah, there are still normal moments around.
Just think for a second [or ask a direct relative if just pondering over it won’t be enough] what it feels like for an immediate family when [the loved one] cannot recognize them, or know where they are at the very least.
We cherish those moments where everything seems right with the world, and those are the moments that get us through the difficult ones.
So far in our case, alhumdulillah, most “days” run smoothly for the most part. It’s the evenings and nights that pose the challenge in more ways than one.
Two. Yes, I understand what [your loved one] is saying doesn’t make sense sometimes. Deal with it, and let it go. Don’t remind him/her that s/he is wrong or correct them. Play along. Say nothing if you must, but please for the love of God don’t make [your loved one] think harder.
Three. Don’t judge the family for what they say to [your loved one] to ease their mind. Chances are, no scratch that– I’M ABSOLUTELY POSITIVE there is a reason behind it and they know better.
Four. If you are having a conversation with [your loved one], keep it simple. Enough said.
They don’t need to know a whole life story that will probably confuse them later. And they certainly don’t need to be put through a [political/personal debate/argument]. Not necessary. Chances are some parts [or bits and pieces of many different conversations] will stick in their mind and come back later out of context. Not to mention that it’s not good for them to be over thinking either.
Simple is good.
Everyone copes differently. What works for me? Writing my thoughts and sharing experiences with my family who get it simply because they are experiencing it too. It’s not something that is easy to explain. Chances are you have heard of someone with Alzheimer’s, but until you experience it first-handed… it’s unimaginable.
I don’t know if it makes sense or not, but my love/admiration for Papa has grown even more. I’m blessed immeasurably to have so many fond memories of/with him that I cling to on difficult days. I just came back on the 17th from Virginia after spending a week with him and unfortunately had several reminders to cherish the moment. That dementia/Alzheimer’s is ugly. I hate dementia with all my heart and soul, but love Papa with every ounce of me.
P.S. Twelve days until my parents and I leave for a trip of a lifetime, inshallah… for hajj! More on that later.