When my dad was very ill in 2019, my husband wondered out loud if there was such a thing. I googled “patient advocate” and “Austin” and found an association that listed people. I called a few, checked out references, and then selected a wonderful RN who we really do think saved my dad’s life. When he was so ill again this summer, we were happy she was still available to help out. She talks to doctors, keeps an eye on all of dad’s medical records, deals with the long term care insurance company, attends important appointments, fills his med boxes, and is in charge of all caregivers. Etc!! It takes all the load off my sister. Of course, as you can tell, there is still drama, but this last fiasco was not her fault - my sister hired the caregiver before the advocate was back on board.
I just got a call from the social worker in Dad’s AL unit. She asked me to call Dad because he is expressing concern about money. He thinks the facility (it’s a CCRC) has been keeping his money from him and he doesn’t know how to pay his bills. He moved into an independent unit in this place in 2018 and put down a large deposit/bond that will revert to his estate when he dies (or be returned to him if he moves out, not very likely). He no longer remembers or understands that contract he willingly signed and he is blaming the place for holding onto “his” money. I called and reassured him that everything was fine and his bills were being paid electronically, that we were reviewing them etc. He said he just felt bad because he’s used to being “hands on.” He also lost a tooth out of his bridge and it’s been causing some problems. Poor guy is not having a good week. I will bring up the UTI possibility with the nursing staff. I must say there are very patient and I have no complaints.
Oh this reminds me so much of my dad . . .he would get so upset at the dining room because he didn’t have a credit card to pay for meals. No matter how many times we told him it was included with “rent.”
If it’s time to move to memory care, I found that that staff is more used to helping folks in this situation and can deflect them (“Oh you can pay tomorrow!”) and “live in their world.”
I am preparing myself for the staff to bring up memory care when I visit in a couple of weeks. I don’t know if that would be good for him because it might result in further disorientation. But if he can’t reliably express or relate his needs, it might be necessary for him to move to what they call “supportive living.” He is forgetting how to use his phone, his TV remote control. He cannot remember where anything is. Regarding these falls he mentioned having, the staff told him to press the call button he wears on a cord around his neck. But I’m not sure he remembers he has that. I don’t think he fell. I think he dreamed/hallucinated, because if he did actually fall, he wouldn’t be able to get up unaided, and the staff would have found him on the ground. They checked him and found no signs of scrapes or bruising. I find myself grateful that his mobility is so limited that he literally could not make it out of the building should he take it into his head to leave AL at 3 in the morning. It’s not a locked unit; SL is.
My mom has similar worries about running out of money, so Preferred gives her a monthly statement of sorts. It is a short list of the bills, and the date they have been paid. He does not include the actual amounts because we don’t want her chatting with her peers at dinner about how much she has, or doesn’t have. It seems to give her peace of mind and an odd sort of agency in her financials. (He has her initial it and date it)
I honestly wish my father had been more concerned about running out of money when he was spending a ridiculous amount per month on “comfort care” for a non-medical aide every day while in assisted living. He used up all his money and is now living in a Medicare paid nursing home.
My inlaws keep saying they will just “hire a live in” and nothing anyone says makes them confront how utterly unrealistic that is, given their circumstances.
I am so fixated on retirement/money now that I can only imagine how bad I’ll be in 30 years. Or worse … I won’t be fixated at all, and the thought I will have lost my mind and NOT be at all concerned about money in 30 years is stressful, too. 
My MIL tracked every penny she spent, using a very formal budget - she had an account ledger, and she would move money from one account if she had to overspend in another. At 94, a few months after FIL passed, she asked SIL to handle her finances. That was a shock … SIL is not good with money, but she was chosen because she was the closest in proximity to MIL. MIL abdicated all interest in and responsibility for handling her money. Fortunately, she has a good financial person she trusts, so SIL doesn’t manage that aspect of the money. We were so surprised that MIL just gave it up like that … and so grateful that she did! At 97, she definitely is unable to manage her finances.
My dad is officially in remission from leukemia (CML). There are no markers in his blood. I know it doesn’t mean it’s cured, but I’m still so happy. He’s had it for at least 10 years. His foot wound is healing well and his heart is doing OK. So incredible. He has more than 9 lives.
Sometimes undetectable means one can go off the meds. After two years of PCR undetectable levels, docs will let patients go off the meds as a trial to see if they can sustain it. About half can do so; the other half go back on and return to good levels within a short period of time.
If your dad has a lot of side effects, the QOL without meds may be more important to him than controlling the CML. Virtually every CML med has cardiac side effects, too – and that may also be a consideration in continuing treatment. I have permanent cardiac damage and we know the sprycel messes with my pulmonary pressures – so I am on the lowest dose possible that keeps me undetectable but also keeps my pressures in a fairly good place.
I’ve been off CML meds twice; once for three months after the chemo-induced heart attack, and a second time when I’d been undetectable for 4.5 years. Both times I relapsed within a month, and it took several months to get back to previous levels. So, we know I can never go off the meds.
It’s definitely a balancing act with multiple medical issues and meds! Glad he is doing so much better.
Thanks for the info. I will forward your post to my dad’s advocate!
She did say he’s been off the meds for months.
Has anyone had the experience of having a parent (or parent-in-law) refuse to acknowledge that they can’t walk, and gradually just retreat to a bed, dragging their spouse into prison with them? Do you have any tips on how to get someone like this to accept regular home health care and respite care–or do you just let the spouse have to fight it out for any freedom at all? I think the sick person involved will just end up regularly in the ER for falls.
So sorry to hear this. Can any aide be hired, even part time to help with this situation? We hired a part time aide for my folks. She would come every morning, make sure dad took his meds, washed a load of laundry and escorted them to dining room for breakfast. Sometimes a 3rd party can get them to do more than family.
We are “lucky” that his spouse is about to get non-serious surgery. She will not be able to take care of him for a few days, and hopefully it will open his eyes to what he is asking of her.
Our experience with my parents and other elderly family members is that they were stubborn and it wasn’t until there was an emergency, that they agreed to extra help. It’s so frustrating to watch!
I hope the caregiver will advocate for themselves and demand help so they can continue taking care of themselves.
Our experience was that the “stubborn” person actually was well into vascular dementia, and no amount of cajoling, etc. would move them from their irrational and unreasonable demands. For example, my dad repeatedly got the riding lawn mower stuck. That in itself was super-unusual, but then he would demand that my mother hitch up a chain and tow it out. When she would remind him she couldn’t do that (she couldn’t lift the tow chain) he would call my brother. But then, it progressed to him asking her to just come help him push it out…and being absolutely enraged when she wouldn’t.
Anyway, looking back, I think we missed the clues and kept thinking he could be reasoned with. In your case, I think the only way to get your guy to give his spouse a break is to hire the help, with or without his cooperation. We did this buying a backup generator, and a washing machine. We ordered it, arranged the installation, and then told my dad it was being done. Not a peep out of him. Good luck with your specific situation, they all require (too much) patience and an uncomfortable transfer of power.
Goodness, will life ever settle down? Earlier in the week, my friend lost her son, then Sunday night my dad was taken to the hospital in an ambulance. He’d had a high fever for a couple of days and his doctor said he should go. They know he has some kind of infection because his white blood cell count is high. They’re waiting on test results to learn more. It could be his foot wound again, but everyone says it looks OK so they’re not sure. Then yesterday the heart hospital shuffled him off to a different hospital due to their wound specialists and podiatrists.
Does anyone know much about sepsis? The doctor accidentally called me instead of my sister yesterday (when I was frantically house cleaning for our out of town guests after getting three hours of sleep). She said he definitely has sepsis, but it’s not the scary kind, or something like that. “He’s not unstable.” I should have asked more questions, but I was beyond exhausted and didn’t have it in me. His temperature was normal all day yesterday.
He has a caregiver with him 24/7 and his advocate has been at the hospital a lot. Whatever happens, he’s gotten the absolute care we can get him.
I think it’s a blessing our friends came up from Texas. We’re taking them up to our cabin for three days, to see the foliage. They’ve never been in New England in the fall. It’s absolutely gorgeous today. The trip means we HAVE to relax. And internet reception is spotty, so I’ve told family, friends, and clients they might not be able to reach us. So I can decide selectively who to respond to. 
I would have someone reach out to the doctor to ask more questions about the sepsis. Sepsis is a reaction to an infection somewhere in the body. I would want to know the plan to treat the sepsis and if they feel they have it controlled.