I apologize for so few posts lately. So much going on and to keep up with.
Mom has gotten to a stage of dementia that although she still recognizes the people closest to her, she often does not recognize, for instance, that she is in her own home. A few days ago she was calling out for her mother.
We finally will have a few additional hours of aid care coverage, but her needs are increasing at such a pace that it really isn’t keeping up with the need, and we were asked a couple of days ago by a nurse who was here in the capacity of finalizing the paperwork on the home care waver (specifically designed to prevent nursing home admission), if we had “considered placing her in a nursing home”. To say I was taken aback is an understatement. We started the process to get home care waver back in early October. That took 6 months and still won’t kick in until next Monday, March 26th. It felt like a kick in the stomach.
An aspect of this that I haven’t spoken of here, (that I can recall) is that my nephew, who was raised by my parents and still lives with Mom provides any day to day care not provided by the aid and twice-a-week RN visits, is on the autism spectrum, and has major anxiety and other psychological issues. He has done amazingly but one thing he can’t do is be at her bedside continuously. So having more aid hours was something we were really counting on. I had gotten the impression the visit 2 days ago with the case management co nurse and local agency on aging nurse, was to have been practically a formality, as in, papers-signing (so the 40 hrs/week she qualified for could commence). Instead we were offered 12 more hours to go with the 12 she was already getting. That still leaves my nephew with 112 hrs per week handling the care of a patient they clearly classify as needing nursing home level of care.
Social medicine in America. She has insurance but it covers less every year. When I was in nursing school in the 90’s, I was appaled by the thought of a lottery system like they had in the UK, where even a cancer patient could only hope to win a chance of being seen by a doctor before it was too late. We aren’t all the way there yet in America, but getting close, definitely headed that direction. Medicare Advantage plans already don’t cover much major medical. Don’t be fooled by the supposed perks like “Silver Sneakers, hearing aid benefits (that really only pay for an amplifier, not true hearing aid technology), cheap glasses and cheap(er) prescriptions. Yet most elderly can’t even afford original medicare either. However, if you can, you’re better off to stay on it and get a supplement for the 20% not covered and the “donut hole”. Problem is, a lot of folks already have pre-existing medical problems before they even reach qualifying age to get medicare, and don’t qualify for the supplement, as was Mom’s case. Maintaining private coverage at retirement is way outside the budget of most folks, and even if you can afford that for a while, theres a huge financial penalty for not going on medicare as soon as you are old enough to qualify at age 65. It’s not a one-time penalty, either. You will pay higher premiums until you die or become so financially strapped that you qualify for “extra help” or for medicaid.
Don’t get me wrong, I am thankful for what we do have in place, but this ordeal has stretched on and on. When I left, I explained to Mom I had to go catch my train to go home. Lying in her bed, in her own bedroom, in her home for the last 28 years, she asked me “when am I going home?” I explained to her, “Mom you are home, this is your home, you are in your own bedroom”. She accused me of being a “nasty liar”.
Her sister came to sit with her while my nephew took me to the train. When I again said I had to go or I’d miss my train, she asked me to miss my train and stay with her. I explained again that I live in VA and needed to go home, and she cried and said “ya’ll are scaring me”. I had to leave her that way.
My aunt said she was ok shortly after we left, but the fact is, she now lives about half in reality and half in an unfamiliar shadow world at all times that is very confusing and frightening. She hates going to respite care at the hospice house where she gets little personal attention, and nothing is familiar. Yet my nephew needs that 5 days each month to decompress and thus far, I have consoled myself with knowing 5 days a month in an unfamiliar place with 25+ days per month still in her own home is better than permenent nursing home placement.
She still has a lot of moments when “the Mom we know” is still there, coming through in funny statements, and awareness of the here and now, but those days are becoming fewer. The physical demands of her care keep increasing, and the psychological impact for my nephew, (and myself when I am there), increases right along with that. I have mentioned family dynamics also in play. I can’t go into that, but I do ask for continued prayer about it all, as I have many times before. It’s been a long hard season and it’s possibly going to get harder, and no telling how much longer and of course we know the only ending, unless the rapture happens first. She frequently talks of missing Dad, and her parents, but also frequently says she “doesn’t want to leave (her) ‘kids'”. Her over-enmeshment with us, is a piece of the family dynamic that contributes to the complexity. Most Christians raise their kids with an understanding they are just on loan from God until they reach adulthood, and with an understanding the child is his own person. Mom never knew where she ends and her child begins. “Mom” and housewife were here entire identity and raison d’etre (reason-to-be). She STILL frequently says “when I get better, I want to…______”. I honestly think her dementia stretches further back than we knew. But also there are things that when you are growing up, seem “normal” which only reaching adulthood, and having navigated parenthood, etc, yourself, can you recognize as (for lack of a better word despite how much I dislike “psychobabble”) dysfunctional. She and Dad having moved back to WV not that long after my sibs and I left home, I have not witnessed her aging process. We made as many trips to visit as we could over the years that they were raising 2 grandkids while Hubby and I were raising our boys. Busy times, and my own medical and mental health issues and life in general kept us all occupied in our respective locations. Mom had serious fibromyalgia, as did I. That eventually eased up for both of us, but anyone familiar, knows the toll.
So anyway, here we are. Mom has never let go without a fight to the death. Of anything! A psychiatrist would likely tag her OCD. And I have always known Dad would pass first and she would have dementia at the end because she has always been a world class champion worrier and her memory has been short circuiting under duress for decades (and being a worrier, she practically lived in fight-or-flight mode). I knew my nephew was autistic since 2004 and that obviously Mom and Dad wouldn’t always be around. I had tried since he was in 9th grade (will be 33 in a few days) to get him help, addressing my parents and eventually him directly. He was finally diagnosed a few months back. Executive dysfunction is a major issue, and being effectively on call 24/7 makes it hard to tackle anything else. Someone asked me the other day, if he is still working on what he needs to do for himself. Being Mom’s caregiver doesn’t leave much room for that. How much energy should be invested in trying to get through to anyone who doesn’t get that? But he deserves the understanding.
I feel like only one other person in the extended family has ever “had my newphew’s back”. Everyone else including in-laws, have judged him and or harshly judged my parents as having “made him the way he is”. Autism was barely even a known thing in their time and particularly in their circle of exposure. I have definitely had my own strong feelings in light of trying to make them understand the need for evaluation and help, but I believe they did the best they knew how. Still, damage was compounded by not addressing the issue, and my nephew is entitled to his feelings about that, which adds a dimension of irony to him now bearing the brunt of day to day care outside of the help brought in.
Mom has for the most part been the type person not to speak her mind and anyone who ever worked with dementia patients knows the “sweet little old ladies” who hardly had a harsh word before dementia, often become seemingly very mean when all the filters are gone. I have been having a hard time figuring out this other side of Mom. All of us can turn ugly at times when provoked, and are less filtered with those closest to us. I have seen and been on the receiving end of a tempered version of it, but in the past couple of years, she has behaved in some ways that have been pretty hard to take. Brain changes bring personality changes. Her longtime Dr retired several years back and her new NP probably didn’t know her symptoms were new, not knowing her baseline. The emotional atmosphere gets off-the-charts sometimes, even when you know its dementia. Wounds inflicted unintentionally are still wounds.
Said nephew has had to muddle through and figure things out about his own struggles the best he can, and though I don’t know much about his present influences, (the counselling he’s getting, friends he surrounds himself with), I feel concern, but it really is, at this point, something only he can figure out for himself. He is trying to do that WHILE caring for Mom “full time” and processing changes in her personality probably isn’t happening in realtime. (It hasn’t even been doing so for me). He isn’t with her every moment, but knows any moment she can push her buzzer wanting something. His inability to sit at her bedside, or with her in the living room (legitimate in my opinion, -not my place to elaborate) means isolation for her, especially when she doesn’t remember visits 20 minutes after they happen. It’s a sick slow motion dance with death that we and many others are forced to endure in this fallen world and I hate it. He remains financially dependant on her.
Necessary discussions have occured, more to ensue. (DREAD!) Everything about it feels like a stroll through minefields. Lord help us.