My grandfather has Dementia. In hindsight we should have known for a while but in reality we just figured it out about a year ago.
My family and I have been taking care of him for the past few years but it was just about a year ago that he was officially diagnosed. There was an “incident” one night last August where he got lost while driving around the city. Eventually he was found heading the wrong way on a major highway. Luckily no one was hurt; there was no accident.
The police saw him almost immediately and stopped him before anything happened. They could tell he was having bigger issues and it was not alcohol related or something similar. They called my parents and suspended his license. We were able to pick him up and sort this out ourselves.
That’s kind of where this long, arduous adventure began.
But first, a little back story.
My brother and I had been going over to his apartment once a week for a few years at that point. We disguised it as just wanting to hang out with him and watch a baseball game but we would clean his apartment and make sure everything was okay. We all were checking on him on a daily basis in some form. A phone call, a random visit….really anything to be able see that nothing was wrong.
He was still running his normal routine at that point. He’d go to a series of community meetings in the mornings each week, he’d visit the gym a few evenings a week to go water-walking, then he had a rotation of dinners setup for him half of the week. Ours being his standing Tuesday dinner meeting.
The day after the police found him, though, my brother picked him up from one of his community meetings and took him straight to the Emergency Room. That’s the point in the story where everything changes. He would never drive his car again, he would never see the apartment he had lived in for over 25 years again, he would never have his routine again. Ever.
The weirdest part about it is, aside from some minor protestations about wanting his car back or wondering where some of his stuff was, he largely has not put up much of a fight.
They did a bunch of tests on him in the hospital and found nothing seriously wrong. There hadn’t been a stroke or anything major but they did diagnose him with ‘mild dementia’. After a few days in the hospital we came to the conclusion that he could not go home alone. My parent’s house wasn’t equipped for him (no bathroom or bedroom on the main floor) and neither were mine nor my brother’s. We had to find somewhere for him.
I should point out here that a few years prior to this incident we put a Living Will and Power of Attorney together for him. I should also point out that I am the Power of Attorney, along with my mother. Ultimately we had to decide what was best for him.
For the last year I have been navigating the waters known as Medicare and assisted living facilities/nursing homes. I have had a TON of help. My wife and her parents, my parents and my brother and sister. It really has been a team effort.
The scary and shocking part is that, well, it honestly seems like no one has a solid grasp on what can and can’t be done. I have had to explain to hospitals, after researching things myself, what they should and shouldn’t be doing. I have had to deal with the blowback of people that wield a lot of power telling me one thing and then, when it comes time to pony up, saying flat out that they never said that one thing to me.
And then there are just the straight up slimy ‘gray areas’ that so many places rely on (at least it feels that way) in order to serve their best interest.
Back to that first Emergency Room visit last August. That’s where we got to experience our first in a loooong series of gray areas. Specifically the gray area in which a hospital can keep a patient for basically as long as they want because they don’t think that person can go home on their own BUT (and this is a HUGE BUT) as long as they don’t ADMIT him to the hospital, then insurance doesn’t have to pay for it. (A later lesson learned is that there is also a big difference between ADMITTING a patient to a hospital and ADMITTING a patient for OBSERVATION. That lesson is for another post.)
I have learned a lot over the last year-plus and a lot of it has terrified me. I have been urged by many people to talk about it and document it. So here goes.