Listen up, people. I have some things I need to say now, in case I get dementia later. I won’t be able to tell you these things then, so let’s get this over with. I have some rules you need to promise me you’ll abide by.
Promise as in pinky swear, as in blood sister/brother swear, as in cross your heart and hope to die swear. Wait, that last one is awful. Who came up with that? Way too medieval. Don’t do that, but take some sort of oath, will ya?
Raise your right hand and repeat after me: In case Carol gets dementia, I promise to abide by these 10 rules:
1. I will not sacrifice fashion for comfort when it comes to her footwear.
OK, now those of you that know me well know that I’m somewhat of a shoe whore. Specifically, I’m passionate about loafers, tennis shoes, and cowboy boots. Some might argue this passion extends to all things shoe related, but that’s not true. I don’t do heels.
Loafers are easy. Simple is good. Cowboy boots? Probably not practical. Which brings us to tennis shoes.
I have a thing for groovy tennis shoes. (Yes, I just said groovy – get over it.) Allow me to make some suggestions: Converse and Candice Cooper (Marjolijn: you will have to be responsible for these). If that’s all that’s ever on my feet, I’ll be good.
Avoid Velcro as long as possible. I know I probably won’t be able to tie my shoes, but someone can do it for me. If you put me in square old lady shoes with Velcro straps, you’d better have a note from the doctor requiring them. (Just so we’re clear: I believe in haunting after death).
2. I won’t keep her at home to make me feel better.
This is a tricky one, I know. Being at home is comforting, and it will be my familiar place. But there will come a time when it just doesn’t make sense for me or anyone else. If I leave the doors unlocked, leave the stove on, am bored out of my mind, or I’m wandering around — hear this: I WANT TO MOVE TO A MEMORY CARE FACILITY. (If we can’t afford it, then how about an adult daycare program?)
It’ll be harder for you than it will be for me. At first, I’ll be confused. But eventually, I’ll forget all about home and this new place will be home. It’s ok. You can remind me about my house and all the fun stuff I did there if it doesn’t upset me. But I’ll be happier in a facility where I’m engaged all day, where I’m safe and secure, where all my needs are attended to.
Find a place close by that specializes in dementia care. Ask how long the staff has been there — that’s the tell-tale sign. If they have frequent staff turnovers, I don’t care how nice the place is, the care won’t be as good. An attractive, clean facility is important, but trained and dedicated long-term staff is key.
3. I won’t make her wear a real bra.
I have suffered enough. Throw away all underwires and tight fitting undergarments. Give me loose exercise bras or those sleep bra things. I won’t be able to figure out how to put it on anyway, so don’t worry about it being complicated for me — people are paid to dress me.
4. Unless they prove grains, carbs and sugar make dementia worse, I will let her eat anything she wants. Including Sugar Babies.
It seems lately that everyone has a theory about the damages inflicted by grains, carbohydrates and sugar. Personally, I have no idea. I ate my weight in candy on a daily basis when I was a kid, and I’m ok so far. I had tons of cavities, but that was about it. Bread was one of my favorite things.
But I’m willing to do just about anything that will reduce the possibility that my brain will deteriorate. I already watch what I eat and exercise. I read like a fiend, and do word games. But you know what? So did Mom.
I don’t know if anyone has a definitive answer. But if there’s even a slight chance that dietary changes will help, I’m in. Yes, I’m reading Grain Brain and find it very interesting. I have no idea if it’s right or not. I believe in moderation for the most part (except when it comes to tennis shoes). I’m reducing the amount of sugar, carbs and grains from my diet now, if for no other reason, to lose the Thanksgiving pudge and prepare for the Christmas calories.
If it keeps me from getting dementia, fabulous.
But if it doesn’t…unless it can be scientifically proven that my beloved bread, pasta, and sugar make dementia worse, let me have what I want. I want Sugar Babies. I want cake. I want pie. I want pasta and lots of bread. I want fried food. I want Dr. Pepper (best served just above freezing).
5. I will make her exercise, even if she bitches about it.
Make me walk. Find ways to trick me into exercising. Be creative. I’ll no doubt gripe and complain, but I do that now, so don’t worry. Bring a yoga class into my facility if they don’t have one. Or better yet, a laughter yoga class. I know I could be more uncoordinated with dementia than without it, but that’s hard to imagine. I’ve been told I look like a cartoon character by a yoga instructor, if that tells you anything.
6. I will buy her the correct size Depends.
Don’t let me walk around looking like Baby Huey. I may not know any better, but I’ll still have my dignity. They make Depends in sizes, you know. Get me the right ones. Call them undies or pullups, not diapers. This is as important as the Velcro shoe warning — so ignore at your peril. Haunting may apply.
7. I will visit her, even though I don’t want to.
You say now of course I’ll visit! But I’ve seen what happens; I’ve done it myself. It’s hard to relate to loved ones once dementia strikes. It brings up all sorts of your own fears about getting old. What do you talk about? What do you do?
First of all, educate yourself on my disease. Do I have Alzheimer’s? Do I have Vascular Dementia? Do I have Lewy Body Dementia? Find out, and read up on it. This will help you figure out what’s happening to me, and what to expect.
Read everything you can on how to talk to me and relate to me. Read A Dignified Life: The Best Friends Approach to Alzheimer’s Care by Bell and Troxel. Go to their Best Friends Approach website. Study Teepa Snow’s Positive Approach. Read her Dementia Caregiver Guide and watch all her dementia DVDs.
Visiting me and making me smile will make you inordinately happy. Trust me on this one. (It’ll make me happy, too, but I’m talking about you here).
Believe me, there are plenty of people there who need you besides me. The care partners who work there need to be told they’re doing a great job and that you appreciate them. The other residents need a hug, a smile or a compliment. Their family members or friends need your encouragement and support. Great things can happen by visiting, even if just for a few minutes.
8. If I walk into her facility and she’s listening to Josh Groban or Kenny G music, I will rescue her.
I don’t want to offend anyone, especially the very gifted Groban and G. But hey, different strokes and all. Not my style, not even holiday albums.
So if you come in and I appear to be jamming to such tunes, PLEASE remove me from the premises. Put on Arcade Fire, Coldplay, or Lucinda Williams. Crank up The Rolling Stones, The Dandy Warhols, or Little Feat. Thank you in advance.
9. I will bring her Starbucks.
There’s a lady in the facility where Mom lives who’s always asking for coffee. I’ve been told her doctor won’t allow it. This is my worst nightmare.
I don’t care what the doctor says, give me my damn coffee. I mean, if it’s going to make me keel over and die right then and there, forget it. But otherwise? Give it to me. Sneak it in if you have to, but give it to me. I’ll take a nonfat, no foam latte please.
I love coffee. Hot coffee. I love the ritual of coffee. I love the taste and smell of coffee. It’s a social thing, a cultural thing. I’m very serious about my coffee. Oh, and if it’s not Starbucks, I take it with a little milk, no sugar.
10. I will make sure she has lots of pet therapy.
I love animals – always have, always will. They make me smile. Loving them makes me happy. I’ll talk to the animals, most likely in a funny voice. Don’t be alarmed – I did this before dementia. So if the facility I’m in doesn’t have an active pet therapy program, please create one. Or take me to a petting zoo on occasion. I love goats.
That’s it. 10 simple rules, one simple promise. If we had a super secret OBC handshake, we’d do that now. Instead, let’s just do a virtual pinky swear. No crossed fingers allowed.