Many people tell me they are dreading the day that their loved one with dementia no longer remembers them.
We think of that as one of the cruelest moments of the disease process.
A husband no longer knows his wife.
A mother no longer knows her daughter.
But as dementia progresses, there typically isn’t that one moment.
Maybe someone knows your name but doesn’t seem to know that you’re their wife.
Maybe someone seems to know that you’re their husband but doesn’t know your name. Or calls you by another name.
Maybe someone knows you’re their daughter but calls you by the name of their sister. Or the name of your sister.
Maybe someone doesn’t know who you are to them or your name but their face lights up when you walk in the room.
I recently overheard a conversation between some of our support group members. Many of them said they didn’t know if their partner knew who they were.
This deal of someone knowing or not knowing who you are….it’s not that simple.
A woman once told me of how she feared her mother with Alzheimer’s would forget her. Her mother became more confused and she knew that day was coming.
She would walk into the memory care community to see her mother. Her mother would look up from the TV and give her a questioning look.
“I’m sorry,” her mother would say shamefully, “I think I should know you but I don’t.”
The daughter would introduce herself and the mother would continue to sadly apologize.
One day the daughter walked in and her mother smiled at her and said, “Well, hi there!”
And the daughter realized that not only did the mother not know who she was….she didn’t know she should know who she was.
There was no more shamefulness. There were no more sad apologies.
Her mother just thought a new friend was visiting.
The moment that she feared wasn’t the worst moment of the disease process.
It turned out to be okay. Even a relief.
Her mom had been confused about who she was. Now she wasn’t confused. She was sure of who she was.
A new friend.
When Dementia Knocks 
Your blog is such a great support. My husband has moved into a more moderate stage of dementia but is still able to do a lot. He isn’t driving but can still make a meal if needed. My problem is with his adult children (my stepchildren, both men). They haven’t spoken to me since his diagnosis and told me that dealing with his dementia was my problem. They call him occasionally but I can tell the conversations are becoming hard for him to follow. They don’t live close to us and haven’t visited in over two years. My husband doesn’t like traveling (never has) and it is very difficult for me if we travel so mostly we don’t. Everyone tells me to let it go and not stress about what they say or do. I can’t let it go because I keep thinking that he is their father and they should care what happens. I’m sure I’m not the only stepparent that has this problem, but I can’t find any suggestions on how to deal with it. Any ideas?
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Lately, mom asks me ever more often, “Are you my daughter?” I can’t deny that it’s heartbreaking. I desperately want to run a videotape for her and prove I am and what a beautiful relationship we’ve always shared, but all I can do in the moment is say, “Yes, I am.”
It’s so difficult to witness the tension in her forehead, the fear in her heart that shows up in her eyes and in my throat when she cautiously inquires, “Can I ask you a question?”
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Thanks for sharing this with me. It must so heartbreaking to see that tension and uncertainty. You continue that beautiful relationship when you say “Yes, I am,” even though I am sure it’s such a difficult moment.
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It IS very heartbreaking. At the same time, I feel blessed to be caring for her and calming her when she is lost. I can’t think of any way to express my love more deeply than to simply help her navigate through this difficult stage of her life.
I have no children of my own and have this sober awareness that I won’t have this same level of care if and when I need it. This experience is definitely an eye opener.
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