I've started giving my children instructions that they probably find odd. It's just that, after watching a grandmother with Alzheimer's, losing my parents, and watching my siblings weather a heart attack, bypass surgery and a pacemaker, I've become aware that there are things that your family may need to know, but you might not have thought to tell them.
For instance, I informed my children that "Circle of Life" and "The Rainbow Connection" need to be played at my funeral. "I don't care who might tell you that it's inappropriate," I told them. "I don't care if it's recorded, or if you sing it live, if it's the prelude music, or how you do it. " They just need to be played.
I started thinking, though, about what people would need to know if I was incapacitated. If I were to become senile, especially if I was nonverbal, the irony is that those most capable of coping with me would all have passed away. I'm guessing that I'd need roughly the same things I needed as a child, but no one who remembered my childhood would be available.
I mean, the legal stuff will be spelled out in legal papers, I'm sure. But what about all the other stuff, the nitty gritty of calming me down and getting me to bed and all that sort of thing?
So, I've started giving my kids pointers.
"I know, Mom. Get you a VW van." This is true. If I'm suffering from any kind of dementia, drive me around in a VW van. It doesn't matter where we go. As long as it sounds and smells like a Volkswagen, I'll be happy. Bonus points if the van is yellow and white. (And hey, if I'm still perfectly capable, it still won't hurt to get me a van.)
So, here's some more of my best advice. I'm being very serious here - no attempt to play it for laughs. This is seriously what will help, if I'm incapacitated and you can't ask me.
If you ever get complaints from the nursing home staff that I'm wandering outside at night, it's because I want to sleep outside. They'll balk, but try to convince them to let me sleep outside, at least for a few hours, if the weather is good. Volunteer to stay with me, if you have to.
I've had long hair for my entire life, so this request might seem odd. If I need assistance with basic tasks - eating, getting dressed - I'm telling you, cut the hair. All of it. Cut it to about 2 inches long, all over my head. TRUST ME.
I have never liked having my hair brushed or styled. Never. I was a feral small child, resisting any attempt to brush or comb my hair. It seriously went a week or more without brushing. Even now, I brush it once a day, and that's it. Even as a teen, I hated letting others style my hair. I deeply dislike elaborate styles, or letting someone handle my hair. I just know that some sweet, well meaning nurse or granddaughter would sit and brush my hair, thinking I'd like it, and I'd do something hideously inappropriate, like bite her. It's not about whether or not they're gentle; I hate it anyway.
Plus, I cannot stand hair on my neck when I sleep. I sleep with my hair in a ridiculous whale spout ponytail, so it will be off my neck in my sleep. If I'm not capable of doing this myself, it will not go well for anyone.
If I'm ever bedridden, or needing help with ordinary tasks, CUT THE HAIR ALL OFF. I realize that this will be deeply unflattering. With my thinning hair and round face, I'll probably look like a victim of radiation poisoning. I do not care. If you are afraid that I will frighten my descendants, put a hat or a scarf on me before I have visitors or get photos taken.
TAKE ME OUTSIDE AT LEAST ONCE A DAY. I cannot overstate this. Even if I'm wheelchair bound, and the most exotic place available is a tiny courtyard with a single tree and some potted plants, take me there. I need to feel fresh air. I need to watch insects and birds. If there's somewhere with any kind of water, take me there. I may just sit and stare at it, but trust me, that will make me happy. If I've regressed to my childhood self, I may want to throw endless rocks in the water, just to hear the splash. Fountains are OK; streams, even tiny ones, are better, as are lakes and ponds and rivers. Anywhere that smells of sagebrush or pine is good, as well.
Manicures and pedicures are not my thing. I'll barely let you trim my nails. Don't waste your time trying to do anything else to them.
I need reading material. Electronic reading is OK, but I do better with paper. Make sure that I have actual, physical books and magazines. I will reread old ones for a long time, but I will get unruly without reading material. If it's gotten to the point that I can't read, magazines with big, glossy photos of animals and beautiful places - think National Geographic - will be invaluable.
I may want an animal to take care of; I may even forget that I'm allergic to fur, or insist that I don't care. Do us all a favor and get me stuffed animals, and talk to me about "taking care" of my animals. Trust me.
Art supplies are a must. Simple crafts will keep me happy for hours. Taking me out to gather pinecones, moss, branches and rocks to use in crafts will make me equally happy.
Even if I have lost the ability to write, give me paper and pens.
If I can handle it even a little, give me a camera.
Don't expect me to have long phone conversations. It doesn't mean that I don't love the callers, because I do.
Play Ed Ames music. Often.
Let me watch vintage Disney anything as often as feasible.
Both of my parents were healthy, happy and in their own home, unassisted, until the days they died unexpectedly. I hope that's some sort of family karma that I can cash in, but it doesn't hurt to be prepared for the alternative.
