The Prodigal Son in Dementialand

It’s the old story of the prodigal son (or daughter).

Mom has dementia, and you have made sacrifices to give her the best quality of life possible. Maybe you are paying out of your own pocket for in-home care. Perhaps you stop by twice a day. You bring over meals. You sit and listen to the same stories on repeat. You get frustrated but you take a deep breath. Maybe you even quit a job you enjoyed so your mom could move in with you. It’s challenging. Some days you are the end of your rope.

Then it starts happening. Mom doesn’t remember you. Sometimes she seems to know you as a kind person who takes care of you. Sometimes she stares at you blankly, as if you are a new face. But it’s been months since she’s called you by your name. The other day she asked if you were her nurse.

You’ve almost come to terms with this, and then your brother (who lives across the country and stops in twice a year to second guess all of the decisions you’ve made about Mom’s care) comes to visit.

“Hi, Mike!” Mom says excitedly as he walks in the front door.

You sink into your chair—trying to figure out how a woman who you spend hours each day with can be clueless about who you are but remember the name of a guy moved away 30 years ago and now stops in semi-annually.

Do you know why that happens?

I don’t either.

And I don’t know what it means.

But I do know what it doesn’t mean….

It doesn’t mean she loves him more.

It doesn’t mean he’s more important to her.

It doesn’t mean she’s trying to spite you for the time she caught you drinking in the basement 40 years ago.

People with dementia don’t forget people because they don’t love them enough. People with dementia forget people because they have dementia.

Some people suggest it can be useful to think of the dementia brain as Swiss cheese.

I recently gave this example during a presentation but accidentally said cream cheese instead of Swiss cheese—probably because I really like cream cheese. My whole explanation broke down because it’s necessary to focus on the holes in Swiss cheese for this to make sense.

When someone with dementia tries to access a brain function, sometimes they come back with “cheese”—a success. And sometimes they get a “hole.” (I would argue that we could think of all of our brains like Swiss cheese. It’s just that the dementia brain has more “holes.”)

When someone tries to remember something and cannot, we often consciously or unconsciously assign meaning to the person or event that they cannot recall. If Dad doesn’t remember his birthday, it must not have been that fun for him. If Grandma doesn’t remember her stepson’s children, it’s because her stepson isn’t as important to her as her real son. If Aunt Bernice remembers your birthday and not your brother’s birthday, it’s because Aunt Bernice realized your brother was a loser years ago.

Or—an example from a conversation I recently had with a college student—if Grandpa can’t remember your major is Gerontology, it’s because he always wanted you to get a business degree.

But maybe we are assigning meaning where there is none. Perhaps they tried to access a brain function and came up with a “hole” instead? Maybe it has nothing to do with you…and everything to do with the declining functionality of their brain. But it’s human nature to think stuff has to do with us even when it doesn’t.

I’m sorry if you are in that hole. I know my explanation doesn’t make it better. As human beings, we don’t like to be forgotten. Knowing that dementia is the culprit doesn’t make it easy that Mom doesn’t know who you are.

I just want you to know that there is no mathematical formula for love and remembering.

If Mom loves you twice as much as your brother, she’s not going to remember you twice as long.

 

 

3 Comments Add yours

  1. A heart- breaking aspect of dementia, beautifully explained. I’m busy preparing my three young grandsons now, by telling them how much I love them, and reminding them that I will always love them, even when I get confused and forget their names.

    My eldest is 11 yo and has Autism seems to get it. He says, I know Nanna, you have dementia and you can’t help it. I know what it’s like to do things that you don’t mean to do without knowing it, people think you should be able to do everything as they do, but we can’t help it, can we. We know we love each other, even though I don’t like to be cuddled and you sometimes call me Noah (his brother), so we’ll be all right. The wisdom of children!!!!!

    Liked by 1 person

  2. kluce99 says:

    It’s as if you’ve spent the last several years with my family!! When my brother would come home for his bi-annual visits and mom would lavish him with love and affection (when I was caring for her 12-14 hours a day) it was like a punch in the gut and a broken heart all at once. It’s nice to know I’m not the only one. 🙂

    Like

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