Taking care of my Mom as her memory declines is both a challenge and a joy. She retains her sense of humor, but the problem is that she can't connect the conversation to the joke anymore. This leads to some oddly timed repeats that can leave us in stitches or in tears, depending.
She asks almost every question at least four times. The commonest question we hear is "What's for dinner?" She'll ask over and over and it doesn't really matter what we say. So we make things up.
"What's for dinner?"
"Yes, we got them in Hamsterdam." At which point we are singing variations on Boy Scout songs: "Hamster, Hamster, damdamdam..." (If you don't have THAT tune stuck in your head for the rest of the day, you had a sad and lonely childhood.)
She notices when the grandkids aren't here. She asks about babies every day. Since they are only here on weekends for dinner, that adds up to a lot of questions about babies and where they are located, and our answers vary from, "With their parents" to "Off to see the Wizard" in scope.
It's not mean if she can't remember, is it? Well, maybe LOL.
I've heard from friends that hygiene and dementia are not friends with each other. What is it that makes the forgetful seem to think that showers are freezing cold and quite possibly toxic? It's worse than the preteen I'm-not-dirty-I-bathed-four-days-ago phase. And since the passage of time means nothing to her at this point (she asked me yesterday during my weekly changing-of-the-linens why on earth I do that every single day), she thinks I'm trying to shove her into the shower daily. Since showering her takes well over an hour (cajoling, wheedling, bribing, demanding, shower plus un/dressing and hairstyling) I'd be insane to try it daily.
Changes in routine are not a problem. She like going out to go to the doctor but she wants a double Quarter Pounder with Cheese each time. And since she can't remember whether she's eaten or not, she keeps on asking. And asking. And asking. Not to mention that the LAST thing her cardiologist would want her eating is a QPC. With fries. Add extra sodium, please. Lord.
I want her to enjoy life as best she can while she can. We eat well, and sometimes adjust her water pills to compensate for the extra salt if we get a pizza or some Chinese (and trust me, she eats far less of that under our supervision than she did when she lived alone!). Balancing her heart failure against her dying kidneys against her memory loss is a fine, delicate thing.
I have had many conversations about end-of-life care with my mom, the majority of which took place long before the dementia was well-entrenched. In every single conversation she voted for quantity of life over quality. Respirator? Yes. CPR? Yes. Feeding tube? HELL, yes. No matter what? Even if you are so far gone you don't know you are there? YES.
Ugh. This stands in direct opposition to what common sense, and common decency would dictate. I don't understand how someone who spent years as a nurses' aid in a nursing home could think this way. But it IS how she thinks. So how do I apply it?
If I let her eat the way she wants to she'll be in the hospital by Friday and dead by the end of the year. Restricting her is practical, but it takes away the only clear joy she has left in life. She has a broken pacemaker wire (one of two - the other is pacing for now). Repair/replace and risk surgical complications that would worsen her quality of life? Leave it alone and risk decreasing her quantity of life? She's no longer competent to decide for herself, and I'm stuck with a promise made as health care proxy to do what SHE would want to do. According to her guidelines I should never let her eat anything she likes again AND replace the pacing wire.
Sigh. We have a consult with cardiology this week. I'll take a moment to speak to him privately. And I'll let her eat as she likes. She won't get much sodium at our table, and she seems to like our food anyway. Since she moved in she hasn't been back in the hospital for heart failure (she was in twice in the month before she moved in). If allowing treats does decrease her quantity of life, I think she's okay with it. After all, if she never worried about that before she got dementia I have a lifestyle precedent that I can follow. And I guess I'll have the pacemaker fixed if they suggest it - it IS what she would want.
But I want my kids to know - I don't want to do it this way when it's my turn.