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Younger-Onset AD or Other Dementia
Why PWD give gifts
I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.
Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.
I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”
My mom worked in activities at a nursing home when I was a kid, and I spent a lot of time running the halls (literally). Many residents kept candy in their rooms to offer to guests. Mostly those butterscotch discs. Sometimes root beer barrels. Often the candy was old–really old. I always took it anyway. I’d put it in my pocket and say I was saving it for later. Spoiler alert: I didn’t always eat the candy.
Once an old guy with dementia gave me his John Deere hat because I said I liked the color green. Later, I gave it to my mom, who put it back in his room. Ironically, those John Deere hats are really in with the hipsters nowadays. Maybe I should have kept it.
I have heard from families who are frustrated that when they give their loved one with dementia a gift they often find it was been re-gifted. Someone I know bought her mother a colorful holiday wreath for her nursing home door and found it hanging on the door of another resident. She thought the other resident might have nabbed it…but realized later that her mother had gleefully presented it to her as a gift.
I was talking recently with a woman with younger-onset Alzheimer’s. She confided in me that the hardest part of having dementia (for her) was the feeling that she was no longer able to give. She hated that she couldn’t contribute to her family and friends the way she used to. She struggled with the idea that she being taken care of and had little to offer those who gave her so much.
As human beings, we want to give. Despite all the frightening and disheartening stuff going on in this world, I believe that most people are good, kind, and have a need to help others. Human beings have a need to make a meaningful difference in the lives of fellow human beings. Dementia can make it harder to meet that need.
To be clear, people with dementia make valuable contributions in this world. On a personal note, my interactions with friends who have dementia are some of the richest and most satisfying interactions I have. When people with dementia say they aren’t making a positive difference, I want to argue with them….but I have to allow them to mourn because they are not able to contribute in the way that they used…and that’s tough.
I know a woman whose family has told her that she won’t be making Thanksgiving dinner for a mega-clan of family and friends this year. In the past, she’s had up to 30 people at her house for the meal. It seems obvious to her family that her dementia has progressed to a point where she’s just not capable of this anymore. She is heartbroken.
Who is she if she can’t feed a crowd for the holidays? What good is a grandma who can’t pull together a Thanksgiving dinner? The ability to give that gift has been taken from her. They’ve told her they will buy the ingredients for her to make the jello salad (if you’re not a Midwesterner, jello salad is marshmallows and random canned fruit suspended in jello–and yes, we call it a salad).
As dementia progresses, people can’t give in the manner that they used to. And that’s hard. When they want to make a difference…when they want to make people smile…they look around for a gift to give.
One man unplugged the alarm clock in his nursing home room and handed it to me. He said, “Here. I know that you really need this.” He was so emphatic that I was pretty sure I did need a used alarm clock.
A woman once insisted I take her walker. I used it to walk out of her room–saying I was so grateful because I had recently hurt my knee (which wasn’t a lie). When she was napping later, a staff member put it beside her bed.
I used to argue when someone with dementia tried to give me a gift.
“Oh, I can’t take that. You need that,” I’d say.
What I’ve learned is that my acceptance of their gift meets a need for them. It meets their need to play the role of giver–a role that dementia can really diminish.
My briefcase is full of pages torn from coloring books. (“How old are your kids?” someone at a conference recently asked me when some fell out as I grabbed my laptop. “I don’t have any,” I said with a smile. I left it at that.)
I have to check my pockets before I put clothes in the washer so I don’t wash those butterscotch discs. Fortunately, it doesn’t ruin your clothes if you do wash them. Tootsie rolls, however, are a different story.
I have a simple rule for those of you who spend time with people who have dementia–Accept the gift. Always accept the gift.
Their need to offer it reminds me that human beings have a need to give that persists even in challenging circumstances, and that makes me think that maybe the world isn’t a horrible, awful place.
Heartbreaking post. So beautifully written too.
I am always collecting stuff to "give away" and it does not satisfy me enough to give it to St Vincent de Paul's, I want it to go TO somebody I am handing it too.
I brought some T shirts to church and 2 women graciously accepted them.
Most people have let me know they do NOT want the stuff (daughter in law) and my own kids tell me to stop it. I am almost down to basics so maybe it will stop soon.
The thing that touched me most was the ending words, to accept what people give. You don't have to keep it, and you don't have to say "I gave it away, you know I told you not to give me stuff."
I have often refused gifts and now am just learning to say "Oh, thank you!" Great post.