OK, two Thursdays back my Mom was recovering from flu and I was watching my Dad for symptoms, since he was getting more and more difficult to get clear communication of this sort. He was obviously ill, but how ill? On Thursday afternoon he was complaining more than usual about one of his legs (diabetic neuropathy) and his wheezing had gone over to gurgling. He had an appointment with his GP on Friday, though, so I debated whether he really needed urgent care, or just "more" rest.
My Mom and I went to an elder planning seminar by the attorney we want to hire to set up the special needs trust (for my nieces and nephew) that will protect the property from Medic[are/aid] lookbacks and clawbacks. That night, though, after dinner, he was barely able to speak because of the gurgling, and so we had to go to the ER.
At the ER they intubated him in some fashion but then he waited four hours
for a doctor, because the guy on call had to run out twice for code blues upstairs. Then at 3 a.m., after I'd taken my exhausted Mom home and run back, they found he had tachycardia. He peed himself at one point trying to get up with his IV attached instead of waiting for a urinal, then with the catheter in still kept demanding to get up because he was imagining he felt "rain" on his thighs. Then when he was admitted, I stepped down the hall to pee myself, got back, and found he had pulled out his IV and was spurting blood all over the exam room.
So he spent a week in the Special Care Unit, all of it with a 24/7 sitter. The arrhythmia was improved, the pneumonia was avoided, the lungs were drained, and his sky-high glucose was brought down. The better he got, though, the more we worried about having him home, getting into stuff. With frontotemporal dementia
, you can't understand your own level of sickness, and he wrote a long letter to the doctor on why he needed to be released. There were two items about his medical condition, and seventeen about the things at home he was concerned about (from caring for the kids to the bankruptcy) that he really wasn't needed for anymore, for months.
Beginning Monday we were talking about home care options with a visiting nurse, then Wednesday his doctor and our caregiver support person were urging us to put him in placement, then we were told he was being placed without us even looking because he required skilled nursing, then it turned out he probably didn't qualify for a skilled nursing placement because he had improved enough. Then there was the bed availability question, which cycled through half-a-dozen facilities in at least three counties.
Finally today one was found, 40 miles away. My Mom and I met with someone at a Perkins and signed all the papers to admit him there tomorrow.
He was primarily concerned about his clothing. We tossed the clothes he liked to wear, mostly grimy, torn, or frayed, and gave him stuff from his closet he may not remember (or fit). He called home three or four times insisting that we let him know when we were coming with the clothing. We got there around 8:30, and after some brief discussion of his move, he said "Well, since you brought the clothes, I guess there's no more reason for you to be here."
Unlike Alzheimer's, where you eventually don't know people, with FTD you eventually don't have any empathy for people. To him, we've become a delivery service, for items or information.
He's been happy to see most of the ex-employees we've sent his way, though he doesn't always remember them. The highlight was his visit with my nephew's new kid, Izak. But he had very little interest in my nephew or his girlfriend.
He had been putting out objections to moving, but I'm hoping that he adjusts just fine. In a way he already doesn't need us to visit.
Now -- now I get to worry about the financials. My Mom's full-time-employment insurance will cover the first 100 days, or maybe not all of it. What will the co-pay be? Six figures? Then there's the long-term care insurance. 2190 benefit days, but $130/day is not going to cut it. Does that mean only three years of coverage? Or more potential impoverishment for my mother?
I really wish I didn't hate him. It was the disease, but it goes back farther, so it wasn't all the disease. Thank God for the LTC insurance, but it may not be enough. The property is an investment, but mismanagement for years and years meant it barely broke even, and now it's on the verge of being taken away by the banks or the state (for Medicare).
It does feel less stressful around here without him watching everything I do on the computer, asking for "my Quicken" back, running off hitchhiking with cash to pay people in the pre-bankruptcy period, and generally still acting like the family office manager. I guess it's time for me to cross my fingers and meet with attorneys to see what can be salvaged.
So anyway ... it isn't quite the same thing, but HBO has its Alzheimer's Project
fully streamable online. It's superb, but emotionally difficult (for me at least).