This is the fourth of my list of things to never say to a person diagnosed with dementia.
Early on, before we had a diagnosis but recognized something was wrong, I would try to over-explain things. This would only make my mom more talkative as she tried to ask questions but usually the conversation would get jumbled up and veer off in an unusual direction.
My dad on the other hand got silent. Whether it was because he didn’t want to talk, wasn’t sure what to say, or had no interest, I will never know. What I did find was that when my mom would start questioning him, he would just go silent. We initially thought our dad was depressed, and most likely he was, but he was also in the early stages of Alzheimer’s when we first noticed his silence.
Later, my dad got into the habit of saying “It’s a nothing-burger” when I raised something he didn’t want to deal with and to my mom would just reply “I don’t know” to defuse her rapidly escalating anxiety.
What I would realize after a few months of pure frustration on my part was that my dad did understand, did know the answer, but just didn’t want to discuss the matter.
I carried this knowledge with me through my mom’s move into a memory care community. There were quite a few silent residents who would respond with a smile at a simple “Hello” or would immediately come join you when invited to sit outside on a park bench. Even through my mom could talk, she started to talk less. It felt like she was feeling less sure of the words coming out of her mouth. Some days, she would be up for a lively conversation, and others, she would just wait until I shared another story.
Some much of what you learn is to see and respond to the person in front of you today. What my mom liked last year, or even yesterday, may not be something she cares for today. I was never one to find silence uncomfortable, so sitting outside with mom and just enjoying our surroundings became one of my treasured activities. Some days, I can still imagine she is right by my side when I close my eyes. Treasured.
A very important post Kay which has got me thinking. ‘Silence is Golden’ when I sit and hold my mum’s hand but I’m sure I talk to much with Maureen.
I am sure you are good at knowing when to talk and when to just be in the moment. When i relaxed and enjoyed the silence, both my parents seem to follow suit.
It took me a long time to understand sitting in companionable silence was sometimes enough for us both. What I found the most difficult was when dad was trying desperately to tell me something and he couldn’t find the words. I hated seeing his frustration. I did find acknowledging the problem helped – saying something along the lines of it being bloody murder when the words you want vanish worked better than trying desperately to second guess what he was trying to say.
Well said!
This is a good point that you raise. One of the most painful periods of my dad’s battle with Alzheimer’s was when he was trying to hold on to his verbal skills. He would try to insert himself in conversations that he never would have before, as he was typically a quiet man. Once he was in the memory care center, he was drugged into almost a mute state. Yet a month before his death, he was able to clearly communicate a wish, that he wanted to go to Ireland to see his family. So awareness and ability may come and go and family members have to adjust to that. Not easy, but worth it.
Reblogged this on the cotton reel and commented:
This post was written by Kay Bransford on her blog ‘Dealing with
dementia’. Kay has a great ability to identify her role as a caregiver
and a wonderful insight of what it means to support
someone who lives with dementia.
Through this post Kay shares her understanding of the verbal and
non verbal communication her parent’s used through their
experience. Kay writes first hand and hits the mark, I’m sure
many people can relate to her words. Thank you Kay!