Alzheimer's, asshole nursing home administrators, cemetery, dad, deer, dementia, dementia care facilities, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, graves, hospice, interment, Monticello, Thomas Jefferson
So, life kicked my heart in the crotch again yesterday. And then it gave it a paper cut and poured Mike’s Hard Lemonade on it, which probably sterilized the wound with the alcohol, but still hurt like a sumbitch.
The dementia care facility where my dad lives announced to my mom this week that, because he’s staging down again, he’s about at the point where they’ll need to move him over to the nursing center. Whatthewhat? When we moved him in, there was no mention about having to totally disrupt and disorient him once he got to a certain point. We were under the impression that he could live out his remaining time where he was in order to make it as gentle and stress-free a process as possible. And we’ve seen other residents do that. Now, suddenly, we’re being told otherwise. To make matters worse, the nursing side of the home is DE-PRESS-ING. Not that it’s all rainbows and bunny kisses on the dementia care side, but we’re used to it, Dad can roam as he’s able, the staff knows him, he (mostly) knows the staff, and it’s now his home. The nursing wing is dark, with narrow halls, and residents lined up in those halls staring forlornly at the linoleum or moaning at anyone who goes past. The only activities are meals and a small TV with room for about 5 patients to watch. And what’s even more f*cked up, is that there are residents still in the dementia care unit that are way farther along in the disease progression, so I don’t understand why they can stay but he can’t. So we spent part of yesterday visiting other nursing care facilities to see if they’re all as depressing as the one they want to move him to (answer: no, there are others that are much more cheerful). But we also learned that skilled nursing centers may not be appropriate for him since he doesn’t require any rehab and we won’t be doing any life-prolonging measures so he won’t need things like iv’s. So now we’re thinking we need to call Hospice and ask their advice about what an appropriate facility for him might be. Then, our goal is to tell the powers-that-be where he is now that, if he is not allowed to stay in the dementia care facility, that he and his dollars will be taken elsewhere, and hopefully when they realize they’ll lose that income, they’ll allow him to remain in his current situation. So cross your fingers.
As if that whole adventure wasn’t delightful enough for the day, we also went to the cemetery where my mom just bought a plot and a bench for putting Dad’s (and, eventually, our) ashes when the time comes. It’s a lovely spot in the cemetery below Monticello, Thomas Jefferson’s home. It’s right beneath a tree and has mountain views on either side. And two fawns were playing in the pasture near us. We also have some distant cousins and some family friends buried there, so we figure my dad can have a rollicking party when he arrives. Good company for eternity and all that. Hopefully there will be Scotch on hand for him. For some reason, the fact that it was a lovely spot and quite peaceful made me lose it. Or maybe I would have lost it anyway (this is assuming, of course, that I ever had it). I’m not sure that I can articulate why. But I pictured myself sitting on that bench, staring at those mountains that have always brought me so much comfort and peace, and just aching with missing him. And I started aching in that moment, and did that really attractive thing where you do the shuttering-and-sucking-in-air gasps, trying not to cry. And then Mom said, “It’s okay to cry,” which is just the worst and best thing, because you do. Losing him while you haven’t lost him is so damn brutal. Trying to get this stuff out of the way now, while it’s less painful and there isn’t a hurry, is probably a really good thing to be doing, except it’s still really f*cking painful anyway. Sitting there designing the bench and figuring out what we want to say on it, and do we want a plaque for his military service, and do we want his full dates or just the years, and are there any little decorative things we want on it, and do we want vases for flowers, etc., was just too much, and will always be too much.
So anyway, my heart feels a bit like it sat on the couch for 20 years and then went for a 20 mile run – stiff and sore and in serious need of good soak in the tub and a large bottle of bourbon.
Gail (Schwartz) Fellman said:
Your essay had me in tears just thinking about what you and your Mom are going through. It saddens me so much. Please know you have friends out here in cyber-world who care.
LikeLiked by 1 person
Thank you. It does help to know that.
Sarah Dowling said:
Emily, it’s heart-wrenching to read your words. It’s so hard to watch a parent leave. I’m never sure what’s easier, that they go quickly or linger with dementia so that you have time to process good bye. You’ve had such wonderful times with your Dad, which are a gift. I’m so glad we knew him when he was a vibrant, fun-loving, horn-playing man!
I loved the time we had with my mother on Preston Place, almost ten years, and I wouldn’t trade them for anything. The only thing I would offer as an alternative is taking your Dad in, and having full-time care. We did that and I don’t know if would work for you or your mother or not. We actually even took in my aunt, and had four rotating women. It was nuts, but I loved it! As the dementia progresses, they get more and more quiet and less troublesome. Again, I just offer this as a suggestion. I do think that the more your Dad can have things that are familiar, the better. So much looks strange and frightening to a dementia patient that I can understand your concern for keeping things stable for your father. I believe my mother felt real peace right up to the end
You’ve been such a wonderful daughter to both your parents, Emily, and Michael and I will keep you all in prayer as you make some hard decisions. You’re a precious family, and yours and your mother’s love for your Dad is so evident in everything you do. I don’t doubt that your Dad knows deep in his heart that he’s greatly loved by you both, no matter what you decide. Honestly, that’s the real gift. God bless you three!
LikeLiked by 1 person
We just want to do everything we can to make his final time less frightening – for all of us.
Pingback: Hospice – A Solution? | The Perks of Being an Artist
Pingback: I’m So Royally Pissed Off At Dementia | The Perks of Being an Artist