Good morning, midday or evening to whomever you are, wherever you are. I’m writing from a little cubicle-like 2-person booth at a Panera bread across from a well-educated world traveler. We’re both wearing glasses and have cups of hot coffee in front of us, and even went as far as to order the same breakfast. A bacon, scrambled egg, lettuce and tomato wrap. It’s Monday morning at 10:28am and we’re ready to carpe this diem!
What to do when I’m alongside this new friend of mine is always a mystery. A lottery of the will, really. Whatever she feels like doing in combination with what I feel like doing is what we do. To put that in simpler terms, if I think of something that I want to do, and happen to suggest it in just the right way to get her to agree to this plan, then we’ll do it. Presentation is everything. But if I present the activity in the wrong manner, she will have no interest or desire to join me.
For example. If I say “do you want to go to the movies?” she will promptly say “no”. However, if I say “Oh, wow!! There are actually quite a few decent movies playing right now!” Then her interest will be piqued and I can suggest a title or two and read the descriptions. At that point when her eyebrows are arching and her mouth turns into a slight frown as she contemplates the veracity of how cunning and appealing the descriptions really are, I lead with “I don’t know… do you wanna try it?”. Works every time.
When I want to go for a walk, I say “I’m going for a walk” and then proceed to start getting ready for said walk. She may automatically say “well I’m pissed and do not feel like going for a walk” or she may say nothing at all; but regardless of her response, after a moment or two, I invite her along for the walk with these words: “you’re welcome to come on the walk if you’d like! I’m just going around the block”. At which point she’ll say “oh, sure, I could use the exercise” and proceed to get ready for the walk herself.
Sometimes she just wants to be heard. Sometimes she just wants to go through all of the different thoughts in her head and then say “okay, so what’s the plan?” at which point I’ll respond differently, but usually in ways like this:
“To be honest, I have no plan! I’m just going to find some food at some point! And I have some things I can do. But if you want to do anything, just let me know! See, my friend here doesn’t want to feel like I’m taking care of her. She wants me to be a comrade. She probably would prefer if I were a coworker. She misses her company so much. She misses working so much. And business meetings. And lunch meetings. And setting up new contracts. And facilitating. She did it for 30+ years and had to stop two years go when the dementia set in.
She is stressed out. She’s in a new location and has a new occupation. She wants to be working but it was stripped away from her. The disease stripped her job away from her. Her purpose, as she understands it. Now she spends obscene amounts of time worrying about her company, her 3 different houses and condos, and she worries about why she isn’t in them. She becomes angry over her presence in her daughter’s house and refuses to accept it as her new reality.
All I can do is try to take care of her well. To do things that are good for her body, mind and soul. She loves walking, but won’t agree to it often. Yet when she’s out there doing it, she’s at peace. She loves observing people and engaging with them. She loves analyzing people and trying to understand them. She is very caring and compassionate and cares about justice.
We cannot begin to understand why some people get dementia, and we certainly can’t understand how to help people recover. The best way to treat a person with dementia is with patience and love. You can’t get mad at someone with dementia for asking the same question 100 times in an hour. Or for feeding their cat 4 times in 10 minutes. A sickness is a sickness. A disease is a disease.
So I do what I can. I treat her with respect and try to think of ways to take care of her as best as I can. So we go to Panera. And we do fun things that she enjoys. And we laugh. And I listen to her stories, over and over again. And I listen with interest. And respond with love. And we live one day at a time. One hour at a time. Just trying to savor the moments. Together. She is a person.
Treating people with dignity is the only way to go. No matter how different they are, how much older or younger. What color their skin is. Where they’ve been or where they’re trying to go. Whether they’re sick, disabled, homeless, an ex-gang member, a christian, an atheist, man, woman, child. We are to treat people with love. Dementia doesn’t change that.
The vehicle that dignity drives is love. Love and dignity and respect go together. These three things make life a much more vivid, colorful, warm experience.