This is going to be super hard | August 8, 2021

I am not looking forward to this latest surge of COVID. Well, no sensible person is, really. We saw infection rates decline with fewer hospitalizations. We saw death rates drop. We had a lovely three months of masklessness post-vaccination, had the luxury of dining out from time-to-time, and socializing with friends we haven’t seen in over a year. That is bound to be curtailed as the incidences of COVID edge ever-upward, even in a state like Connecticut which has a pretty good vaccination rate. 

Reinstated mask mandates, which are sure to come in the near future, will make it very difficult to deal with my mother who doesn’t understand the necessity of wearing a mask. She loops a mask around her ears and then pulls it down under her chin. I have to ask her repeatedly to pull it up over her nose to move around in the public spaces of her apartment building. It’s already hard enough coming into contact with the people who live there who really, really, don’t understand what dealing with people with dementia is like. Now if mom is maskless she, and by extension my father, is sure to be shunned even more. No one wants to be near a virus vector.

Mom doesn’t understand why she has to wear a mask and why she can’t get close to people. You can’t explain any of this to her and expect her to retain any of the information. She already gets uncomfortably close to children. She wants to tickle their toes and just gaze on them. She means no harm, of course, but it’s as if she’s drawn to babies and young children. She can’t get enough of them. However, she doesn’t understand that people may feel uneasy about her proximity whether we’re in COVID lockdown or not. People might be creeped out about some stranger hanging around their kid even without COVID.

It’s hard to go to public places with my mother at the best of times. She has no social filters anymore and says or does things she would never have done in her previous life. I have to disengage her as subtly and gently as possible when she’s hovering too close or hold her back out of earshot from groups of people before she says something inappropriate, most often to do with someone’s weight, hair color, or what they are wearing.

It leads to more social isolation for her, my father, and her caregivers because people don’t understand her behavior and I don’t want her at risk for contracting or giving COVID to anyone, especially an unvaccinated child. I don’t want her physically hurt if she says something people don’t want to hear. You don’t know how people will react if she says in a stage whisper: “Ewww. Look at her. She’s so fat.” Or, “That can’t be natural,” when referring to someone with bright pink hair. And she says things like that. All. The. Time.

What are we to do? She’s not a leper. She deserves interaction with other people, even if she can’t remember the thread of a conversation. She has a right to be outdoors and enjoy a walk in the park. She is a human being with all that humans need.

If she were in a wheelchair or had a walker people might think “Oh, that poor old thing.” In fact, my MOTHER sees older people with a cane or walking with a limp or something and says “Oh, that poor old thing.” My mother is 90 but doesn’t make that connection. I think she believes she is younger and everyone else is old. But she isn’t in a wheelchair and doesn’t use a walker. She looks normal. She walks at a good clip. She’s not unsteady on her feet. It’s only when anyone talks with her for five minutes that it’s pretty clear something ain’t right. 

That and the fact that she dresses like a ragamuffin. She can’t, or won’t, change her clothes unless you wheedle, cajole and then practically force her to change. Then again, she’s hidden all of her clothes in bags and tucked them away in closets, under the bed, or behind the living room furniture and can’t find them. She has mostly gotten off the thing where she insists someone has stolen her belongings, but that doesn’ really solve the problem of where she’s hidden a clean pair of pants.

She does this shuffling and shifting of items – any items – dozens of times a week so it’s like “Where’s Waldo?” It’s almost impossible to lay your hands on a specific item since we have no idea what’s in any of these bags without opening and pulling everything out.

My father is particularly helpless at tracking any of this. He never paid much attention to anything around him even before my mother’s decline. Now he’s even worse and just really has no clue.

No one who has never experienced dealing with dementia really understands what it’s like. They might THINK they know what it’s like by reading up on the subject or watching a movie or whatever, but they don’t know, bone deep, what it’s like to deal with a loved one disappearing in front of your eyes. They don’t know what it’s like to deal with someone who has suddenly become irrational, who you can’t reason with, who you can’t have a conversation with anymore. Who drives you crazy by asking the same question every five minutes, literally. Who won’t voluntarily change their clothes or bathe. Who won’t eat either because they don’t want to or can’t remember to eat.

I am beginning to see it more and more as my job to educate people about dementia because guess what? There will only be more and more and more people providing care to people with dementia in the coming years. If your relative doesn’t develop dementia of some flavor, you will know someone who has a relative who does. It could even be you who develops dementia. If you never encounter it in your life you are one lucky son of a bitch. 

But I wouldn’t bet on it.