The only real difference between Ms. Wolf’s experience and mine is the much younger age at which she was torn from her life to caregive. Mostly, the parallels are eerily similar.
She was living a normal life out-of-state from her childhood home of NJ, when she was called back by her parents’ advancing dementia. They were both diagnosed with Alzheimer’s by their neurologist, and needed her help.
She thought she’d only be there briefly or intermittently, and set them up with care. FIVE YEARS LATER…she was still there, probably for the long haul. (Life span between diagnosis and death averages 5-7 years.
It started with incidents like extreme bathroom accidents that must be addressed frequently.
She had to manage their many meds for all their conditions, for them–and all the specialists, assistance, etc.
They tend to just sit, stare, and wander. Sometimes they get very agitated and paranoid delusional. But putting them in a facility would lead to panic attacks. They wanted to be in their own familiar home of many decades, but couldn’t manage safely on their own.
Dementia patients can be worse than infants. It’s a weird role-reversal, parenting your parents. It’s a full-time job; sometimes you’re up all night. Plus there are all the other household tasks to manage. And so-called in-home “help”, if affordable, is not always very helpful or competent.
There is no such thing as “me” time or personal health. You live in a constant state of anxiety, anger, exhaustion, frustration. You feel isolated from the world of your peers, and like you just can’t go on.
And those are just some of the highlights. It’s a growing problem, with no easy, affordable solutions. I was not surprised to see in the comments the topic of legalizing euthanasia. It’s not that anyone wants to kill their loved ones; it just needs to be an option available to anyone who wants and needs it, whose quality of life is horrible. When we caregivers bring it up, it’s often in the context of ourselves, when our turn comes. We’d rather put everyone out of our misery.
These days I try to avoid belaboring this old refrain of mine, but this article was just too uncannily familiar not to comment on it. It’s no longer about isolated situations in a closet; it’s growing much more close to home for many people. It will affect most of us, sooner than expected. There is no effective social safety net in place, and if the current line-up of political candidates is any indication of the near future, the zombie apocalypse is not so far-fetched.