WWYD Dementia Edition

The NYTimes posted an article the other day about a surge in dementia cases predicted in the next 35 years.

My mom is 63 and was diagnosed last year so it’s my reality, dealing with the very real possibility I will face a similar fate and will be part of that surge. Everyday I hope she doesn’t burn my house down, or become agitated and traumatize my 4 and 8 year old. I’m also about to have twins, and have concerns about her being triggered and hurting one of them, or her moving them in the middle of the night while I’m sleeping, dropping one, or shaking one, or losing one because she gets up and thinks she’s capable. In my case I’m trying to get her out of my home as soon as possible, and taking every safety precaution available, alarms and locks and heightened awareness. But it’s definitely a tense situation over here while she is here.

I don’t think many people realize how horrific caring for someone with dementia is, or how unbelievably expensive care can be. Imagine caring for someone who bounces between ages 2 and 4, except they’re adult size and you have no real authority and you can’t baby proof. Unpredictable. Unsafe. And it just gets worse as time goes on. It’s exhausting having to be on high alert. I’d say it’s like having kids, except they are sweet and loving and kind and learn and grow, and this is unlearning, it’s mean, it’s complete dependence with a side of rude and nasty. 

Assisted living is close to $5000/month. Memory care (like assisted living but more security and medical care) $10,000+/month. Private places can be even more. Easily 6 figures a year. For potentially decades. Insurance covers nothing unless you were lucky enough to have long term care insurance before diagnosis. And if you can’t afford that or don’t wish to spend your kids inheritance, you’re either a huge burden to your children OR Medicaid gets involved and takes whatever you have and you get a shared room in a nursing home where they basically make sure you don’t die, but that’s it.

I’ve thought a lot about what I will do when I’m faced with this diagnosis.

For myself, I wouldn’t put my children through what I’m navigating. I also didn’t work my entire life for my money to be spent on someone changing my diapers and bringing me a tray of cafeteria food for the last 10+ years of my life. I don’t want to live that way, I don’t want my kids to visit me that way, I don’t want the generational wealth I’ve built blown on that. I don’t want my kids giving up their lives to care for me when I won’t even know what year it is and my personality is dead.

So I’m wondering if anyone else thinks about this. And what they would do.

Here are the options:

A. Check out. Unalive. Peace out. Call it what you want, but you’re going out on your own terms ala Robin Williams (he had a form of dementia called Lewy Body).

B. Spend that money baby. Put me in the nicest place money can buy, let a nurse turn me like a baked potato and make my kids/grandkids visit me for however many years I keep breathing. And if the money runs out, nursing home it is.

C. One of my kids will take care of me. I wiped their butts and mashed up their baby food, they can do the same for me, I’ve earned it.

Ps: this is your notice to start thinking about retirement and care NOW, while your brain works and before you’re in a mess.