Deciding which vitamins and medication to keep someone with dementia on can be tough. For example, we recently had to decide whether or not to give my dad the pneumococcal vaccine. I’m not going to tell you what we decided, because, honestly, I don’t need anyone telling me we were wrong, but I wanted to give you some insight into what goes into the decision-making process.
With frontotemporal dementia, the thing that’s most likely to kill my dad is pneumonia. As his brain winds down, so does his ability to swallow, which means he’ll aspirate food, it’ll cause an infection, and he’ll get pneumonia and die. So, considering whether or not to give a vaccine that could possibly prevent that isn’t something to take lightly – especially in our society, which places such value on length of life regardless of quality of life. We’re taught to do everything we can to help our loved ones to live as long as possible. It’s deeply ingrained in us, so every time my mom and I stop to think about whether a medication is right for him, we feel guilty if we choose an option that won’t prolong his life. Our main reasoning behind each vitamin, medication, or other treatment that he continues to receive is that it prevents pain, not death. Because he’s going to die, no matter what we do. But we don’t want him to suffer if we can help it. Pneumonia, though, will cause some suffering. So, of course, we want to prevent that. The thing is, we really can’t prevent it, because it’s pretty much inevitable that, barring a heart attack or stroke, that’s what will cause his death. So preventing it seems useless. And what if it makes it so that he gets it but less severely, goes through that pain, lives, and then has to do it all over again one or more times before the pneumonia wins and he dies? And is delaying the onset of the pneumonia this year with the vaccine a good thing? Let’s say he doesn’t get pneumonia this year, but he does next year. He’ll be in much worse shape over the coming year as the dementia continues to progress, and if he were to die from pneumonia tomorrow, that might save him more pain. And knowing who my dad was before the dementia, I think he would not want to be like he is now and would want this all over. But how do you not give someone something that could save his life? And if he does get pneumonia with or without the vaccine, should we treat it at this point?
You see the circular thinking that happens here? The pros and the cons kind of balance out. And we’re guaranteed to feel guilt, not matter what. If we don’t give him the vaccine, and he gets pneumonia and dies, I’ll feel responsible. If we do give it to him and we have to watch him lose more and more of his dignity daily, and we extend his life longer than he would have wanted, we feel guilty. And even worse, finances do come into the decision – at least in part. Currently, my dad’s long term care insurance pays for his approximately $7000 per month bills for the dementia care facility where he lives. That will run out soon, though, and my mom will have to take on that burden, which is scary. Her father lived to almost 90 and her mother lived to 98, so odds are that my mom has another at least 20 years to go and will need that money herself, which means that the burden will fall to us to take care of her if it runs out. The worst sentence you ever want to have to write is that you can’t afford for your loved one to live much longer. It should never, ever, have to factor in to your decision-making, and we mostly don’t let it and we figure that we’ll work it out down the road, but that fearful thought is floating around in the back of our minds.
I’m doing my best to eliminate guilt through this process. I’m making the best decisions that I can possibly make to give him the care he deserves. But I think that it’s inevitable that I’ll feel at least a little guilty in the end, because we’re forced to make very hard choices in interpreting what his wishes would be. Frankly put, it sucks.