Once an older guy told me, “My wife has Alzheimer’s and doesn’t know who I am, but I still love her.”
It struck me that he used the word but to connect those two statements–as if it were surprising that he still loved his wife.
I didn’t find it surprising, of course. We don’t stop loving people when they forget who we are.
And…when someone forgets you…what does that mean?
Does that mean they don’t remember your name? Does that mean they don’t remember their relationship with you? Does that mean they perceive you to be someone different than who you are? Does it mean they have no clue who you are but seem to have a sense of comfort when you’re around?
Like so many things in dementia, forgetting isn’t black and white.
The man who told me that he still loved his wife said that he didn’t know if his wife still loved him or if she was even capable of love at this point in her disease process. It made me sad to hear him say that, and I told him that I knew she still loved him even if she couldn’t express it.
“I guess there’s just no way for that love to get out of her. It’s stuck in there,” he said.
Then he shrugged and said it didn’t really didn’t matter…as long as he loved her. He said he’d gotten enough love from her over the last 30 years to last him for a while.
I didn’t know what to say except to smile and tell him I had a feeling he’d been a pretty good husband over the last 30 years.
But, dementia aside, it’s hard to be forgotten. We want to be recognized by the people we care about. We want people to remember what we say and do. We like it when people remember our likes and dislikes. Remember when that friend or family member gave you a gift because they saw it and remembered you?
If my husband is going to grab dinner on the way from work, he remembers what I usually order at all of our favorite restaurants. He remembers I won’t eat curry or malt flavoring–as inconsequential as those preferences are to everyday life. He also remembers that I prefer Luden’s cherry cough drops when I have a sore throat but he’d better buy the sugar free because he also remembers I’ll eat the whole bag in three hours.
I could give a run down of all of the small things that my family and closest friends remember about me. It’s not rare for a friend to buy me something because they remembered something I said that I don’t remember saying. I’ve got a couple of friends who are absolutely gems at making me feel special by doing this.
It’s fair to say that people show love by remembering.
I show love by remembering when I ask a friend about a health concern that she had briefly mentioned weeks ago. If I mention to my husband that I am going to make him dinner twice a week (and that’s A LOT for me), I remember to buy groceries so I make those meals…not that they’ll be any good. I’m not known for my cooking.
Many aspects of our relationships are built on remembering. Remembering to do what we said we’d do–you can’t fulfill a promise if you can’t remember it. Remembering people’s preferences so we can treat them like they like to be treated. If I stopped remembering, all the important relationships in my life would fall apart.
And then comes dementia.
Can people love when they can’t remember?
I think the answer is yes, but dementia can change what that looks like. Maybe love is expressed differently as dementia progresses. Perhaps we need to become more flexible with what love looks like.
Someone with younger-onset Alzheimer’s once told that she would wake up in the middle of her night and look at her husband sleeping next to her in bed. She knew she loved him but she had no idea who he was. No clue what his name was or even that he was her partner. But an overwhelming sense of well-being because this person loved her. And that she loved this person.
It bothered her that she could forget her husband….but maybe you can forget someone’s name and their relationship to you without really forgetting them. Perhaps remembering isn’t dichotomous; maybe it’s more complex than remembering or not remembering.
I’ve heard many people living with dementia say something to the effect of, “I don’t know who you are, but I love you.”
It seems as if you can remember your love for someone without remembering their identity. Maybe you don’t have to know someone to love them. Perhaps it’s enough to have a feeling that maybe you used to know them.
I once spoke to a woman who found some solace in her husband’s forgetting. With dementia, he had forgotten to continue their ongoing nitpicky arguments. He had forgotten that they weren’t that lovey-dovey couple, and he’d even started holding her hand in public. She was thinking that perhaps dementia wouldn’t be so hard on their marriage when one day they were out to eat at a restaurant.
“You’re great, but if my wife ever learns we’ve been doing this, she’d kill me,” he said.
“Do you love your wife?” she asked. He paused for several seconds.
“Not really,” he responded.
She was devastated, understandably. She sobbed the entire night.
Then she spent some time processing. She decided that maybe it wasn’t important that he loved his wife if he couldn’t identify his wife while she was sitting right in front of him–but the woman sitting in front him was someone he thought was pretty great….and that was her. Maybe she needed to find a way to embrace that.
From that point forward, she decided to appreciate that he enjoyed the woman in front him no matter who he thought that woman was. If he thought she was his mistress, so be it.
It’s not easy to identify all the ways in which dementia and love are intertwined.
I don’t think dementia erases love.
But it does change love.
And perhaps those of us who have a loved one with dementia need to be open to receive love in unexpected, and sometimes strange, ways.