Is there an ultimate authority, when approaching the end of sub-acute rehab placement, over whether Dad goes home or to long term care?
As legal and medical POA, I am emotionally on a wild ride as I begin to wait for rehab’s assessments. Dad, 97, is being admitted to rehab today after a four-day hospital admission, after a fall where he hit his head hard. He’s ok after lots of imaging. He has dementia, advancing hydrocephalus (no shunt, he refused in 1990), and severe aortic stenosis, which probably were the cause of the fall (my back was turned for about 10 seconds and he decided to stand up on his own to remove his socks). He has been falling (without injury) more regularly in the past six months. I have a hunch rehab will make a well-considered recommendation, but ultimately the decision lies on me. If that is true, I have to face either the probability of having a catastrophic fall at home (no reliable night care), or his being quickly placed in a dreadful LTC. I’ve just toured seven LTCs. Of course the ones I felt good about have 1-2 year wait lists. Dad has such an amazing daytime caregiver at home, that even Dad’s primary doc said (before the most recent fall) -- “Keep taking the risk” of home care.” My 86-year-old dear husband has been so patient with my caretaking role for the past 10 years. He’s suggested we split so he can live out his life in the warmer climate we have both dreamed of. I really don’t want to continue making Dad’s home life work, but am having a hard time facing realities now that crux time is here. I really don’t want to go through being Dad’s grim reaper. Most of all, I really want peace and some joy with my husband. I know that sounds like a no-brainer, but I don’t have a reliable brain right now. I feel very alone, as my co-POA sister is very ill and wants me to make all decisions.
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The indecisiveness is unfair to both of them.
Made a choice of who is the more important and if it’s dad then move in to your fathers place be there for overall presence and nite duty for your dad OR if it’s hubs have dad upon completing his rehab segueway to a LTC resident and you move with your hubs to whatever warmer climate you two have been planning for throughout your marriage.
Your home gets sold in choice #1 as your moving in to dads place & it gives hubs $ for him to start afresh in wherever he settles “warm”; Dads home gets sold in choice #2 & perhaps yours as well depending on your & hubs finances & snowbird plan. Whichever choice you make by placing a home on the market with a Realtor enforces that a decision has been made by you and moves forward your decision.
There are just so many imponderable factors, aren't there?
At 97, and with your father now so very frail, and although one has to be careful what one wishes for of course, this may all resolve itself quite quickly.
At 86, it is understandable that your husband doesn't feel he has time enough to spend on more waiting. But even so.
If rehab is going to come up with a good strong recommendation, would it be too much to ask them to come up with a good strong, not to say forceful, referral to a decent care facility? They must surely have some influence with the key admissions personnel.
Or, what is awful about the ltc's that might be easier to get into? Might it be possible to retain the excellent caregiver to supplement his care and compensate for any shortfalls at the least worst of them?
The problem I perceive with any facility though, actually, is that you still won't feel free to jet off to sunnier climes, will you? I haven't yet read of a caregiver who happily washed her hands of the whole business the second her loved one got placed.
Right.
Yes, there is an ultimate authority, and that is you.
You don't know what to do for the best. I don't blame you, I don't think it is possible to know.
So perhaps, its being Thursday, you should firmly decide to do nothing: you just don't have enough clarity to come to a decision with any confidence. Just let your thoughts marinate over the weekend, and then let's go through them again.
I've had patients fall with me hanging on to them. You can't prevent it. Also, their porous bones break (osteoporosis) and they fall.
If you bring him home, he will fall again. Either way, he will wind up in a nursing facility at one time or another, I'm sorry to say.
Biblically and by wedding vows, you have promised yourself to your husband.
God only knows how much time we all have.
Please find a facility that you and Dad can live with, help your dad settle in, then go to where your husband is enjoying the sunshine.
IMO, it's time to place Dad and rejoin your husband while you still can.
Just me, but at this point I would go with the husband. 86 is not young and I think your time should be spent with him. Dad's Dementia will only get worse. And if not already, he is in his own little world. Does he know you as his daughter? I do feel for you.
After many times of doing this with the police being called to help, the police turned to the adult protective services who assessed that he needed to be in the nursing home. He has been in and out several NH in the past for variety reasons. Yes there are good ones and bad ones. The last one didn't have those bells and whistles but it had people who cared. There was a very low turnover and that made the difference. My husband was a wiz at fixing things and would go to where the maintenance man was working to watch him. The maintenance man then made sure to talk to him anytime he passed him either in the hallways or his room. I didn't know this until my husband passed. That is just one example of the kindness of the people who worked there. The social worker and nursing dept will be able to help you make the decision and recommend a place. By law, the nursing homes has to call you if anything happens while in there care. His medication can be tweaked as they are more familiar with him and using their expertise recognizing what is not right.
I wanted to assure you that there are good places out there. One of the reasons I kept him home was because of several bad ones and how Medicaid was administered to grant approval or not allow it. In Ohio each county administered Medicare and Medicaid.
The local dept of aging is another resource to help you this process. Good Luck in your decision. I had to put my husband as first priority for my own sanity and honoring our our connection and vowes to one another.
P.S. My husbands NH also was a rehab facility and perhaps the one your father is in has a section that is for LTC.
It sounds so simple, doesn't it. Pop him into a nice home and then off you go, not a care in the world, with your husband.
I'm just wondering a) if anybody has done that and been glad they did; b) if anybody didn't do that and wishes s/he had; c) if anybody did that and rues the day.
Or are we all just speaking hypothetically?
There will of course be a lot of logistical hurdles, not the least of which is finding the right LTC facility in the new locale, but given your dad's veteran status, the VA and the state veterans service office may be able to help with some of the logistics and perhaps some of the costs, as well. Both the VA and my state's veterans office have been very helpful to me in providing my 96-year-old dad's care after I moved him from his state to mine and later from my home to a nearby memory care unit within a "full continuum of care" community. This community offers a full range of senior living -- from completely independent apartments, to assisted living, to memory care, and in skilled nursing. If this is of interest to you and your husband, you could do an internet search of "full senior living continuum of care in ____________(city/state) to see what's available. Of course, you'll want to follow-up those results by using Medicare's facility ratings, the state's H&W facility inspection/complaint reports, and any local word-of-mouth recommendations you can get, e.g. realtors and anyone else you can find.
Best wishes to you and your husband in making these difficult decisions.
The rehab facility social worker (SW) is probably going to recommend “24/7 care” but thus far it’s not “medically necessary” (meaning no Medicaid application, so Dad is unable to afford 24/7 care). Huh?
I have not yet heard about any rehab mental assessment -- that better be pending and I phoned the SW again today with that question, but was only able to leave voicemails.
My heart sinks to say this but I don’t want him living near me. I have broken myself and my relationships and career against rocks caring for him for over a decade, and the friction it causes in my life is unworkable for me.
I’m looking into assisted living or group homes, but it seems even they cost more private pay than Dad has and selling Dad’s house to pay for it won’t bring in but perhaps a year’s worth of subsidy. I have lymphoma and I can feel those lymphies swelling from stress.
The VA Caregiver Support program appears to be a referral program only. Basically, VA SW offered a wait list for VA LTC (years of wait), or two hours of showering help twice a week, which is useless given we have that and more covered with VA Aid & Attendance. It’s night care that’s missing.
I told the SW at rehab that I felt like The Executioner – damning Dad to certain catastrophic fall if he goes home or in a private pay AL without fawning caregivers. And if I “choose” to put him in a facility -- then rapid decline is on me because of my apparently ungainly and “selfish” need to carve out a life.
Have any of you dealt with being unable to afford the rehab-recommended 24/7 care, yet the rehab facility deeming 24/7 care “not medically necessary?” Maybe I’m jumping the gun, because he will be in rehab til June 6. But so far, the verdict is that it’s MY decision. A person cannot make a rational decision when the gun is loaded and there is no expert guidance. I am reminded of the little girl’s conundrum in The Quick and the Dead. At least my father isn’t urging me to try to shoot the rope. I debate calling APS, but have innocently done that before and it was six months of stress before they closed his case.
Another emotional aspect I struggle with, and am ashamed of sharing, is having to face Dad’s saint of a caregiver and the agency owner (my Dad was their first patient 10 years ago) and cut them loose. They are like family bedrock to me (my sister just isn’t involved and can’t be). I told my husband that cutting them loose feels more difficult than my apparent willingness to roll a dice and give Dad over to fate. He’s working very hard to go home. Perhaps that’s what I should honor, knowing it will all be repeated probably within a month of home PT ending.
Grateful for all you share and your empathic responses. I hope this is useful to others.
"Neglect means harm to an adult's health or welfare caused by the inability of the adult to respond to a harmful situation or BY THE CONDUCT OF A PERSON WHO ASSUMES RESPONSIBILITY FOR A SIGNIFICANT ASPECT OF THE ADULT'S HEALTH OR WELFARE ... Neglect includes the failure to provide adequate food, clothing, shelter, or medical care."
I am NOT Dad's legal guardian, only a DPOA and Medical POA. But I definitely have a long history of assuming responsibility for a significant aspect of Dad's health or welfare.
I have no idea how this is played out in a situation like ours, if for example the Fire Department alerts APS to Dad's ongoing falls for which a 911 "lift assist" is requested.
The rehab SW will make recommendations. These recommendations have to be justified. If the SW makes recommendations which go beyond your father's medical needs, and are therefore for a level of care which is uninsured, what will be the justification for them? Once you know that, you'll be better able to assess what is needed to comply with the recommendations and whether it is possible to do that at your father's home.
DPOA and Medical POA do make you a "person who has assumed responsibility." That is exactly what you have done - you have agreed to act on your father's behalf when he cannot in all financial and medical matters.
But that doesn't make you responsible for providing hands-on care for him. And neither does it allow you to act in direct contradiction of his expressed wishes, unless he is not of sound mind and there is an obvious necessity to protect him.
The caregiver. All professional caregivers, as part of their role, know that their work will come to an end. They will be more or less sorry to say goodbye to their charges, and they move on to the next one. It is lovely that you are so appreciative of this lady, and she may yet be an important person in your father's life, but you really *cannot* allow her employment per se to be a factor. You wouldn't keep her on if your father had passed away, would you? And you won't be preventing her from keeping in touch with him if she wishes to.
Hmm. Have you discussed this decision with her? You could tell her that you are waiting for the rehab's social worker's recommendations, but meanwhile you would value her take on how your father is coping at home and whether it might be time for a more structured care setting. In addition to her in-depth knowledge of him, she may well have valuable experience from previous clients to draw on.
A few hours ago I learned from the rehab social worker (SW) that Dad was deemed mentally incompetent by two professionals (attending physician and psychologist who administered a MOCA test (I'm not sure I would not have passed it 100%) and other more basic questions. So Dad's DPOA now grants my sister and me authority to make decisions on his behalf, against his will if need be. Rehab is recommending assisted living (AL) with a memory care unit attached, assuming that will be needed in the near future. Dad does not medically require skilled nursing/long term care, so no Medicaid application on the horizon.
Rehab SW recommended I contact VA fiduciary office, as a short form VA 21-0779 ?may? increase Dad's Aid and Attendance to offset somewhat going rates at local ALs. Strangely, this all seems to be falling into place.
Rehab has put me in touch with a placement specialist who now has Dad's profile/needs, and is apparently functioning as a quasi-realtor to locate good matches. This company has over 20 years of experience and excellent reviews. Living 150 miles away, what else could I do? She will accompany me this next week on all tours and she apparently helps negotiate down from published prices. Yea, she gets a commission from the facility, but I intend to use her mercilessly.
I'm stunned about the way I feel. Since 2006, I've put Dad's needs first. I have been convinced by all SWs everywhere that catering to my inner sentimentality and respect of Dad in his failing last years, is not the best course. After I talked with rehab SW, I sobbed to myself that "Dad would never have done that to me." My dear, cut-through-to-the-chase ex-psychologist husband simply asked, "...and you are 97-years-old?" End of story.
I really needed your perspective, as somehow names I know on Aging Care are surrogate sane family members. THANK YOU! If you want, I'll keep posting as to progress. If not, I'm sure I'll start posting in an Assisted Living thread.
Dad would never have done what to you, by the way? Made sure you had the right care for your needs? Looked carefully at all the options, and then placed you in an environment where your physical and mental and social wellbeing could be supported by teams of trained people? Why, did he not like you very much or something?
Be sad that your lovely Dad has declined and needs this level of care. But do not beat yourself up because you couldn't prevent him from becoming very old and very ill.
I'm curious when you say " Dad would never have done that to me"?
Done what? Did dad never send you to school, to be educated by professional teachers? Never took you to doctors, occulists, dentists, etc., to have your medical needs met?
There comes a time ( and dad is there, since he's been deemed incompetent) that an elder's needs warrant PROFESSIONAL care and oversight. Older-aged daughters with good hearts and limited strength and even more limited knowledge of medicine, rehab and drugs are no match for three shifts of rested, knowledgeable and supervised caregivers.
I just reread all your posts. You have lymphoma? And you feel more obligated to extend the life of your dad who refused surgery that could have improved his physical functioning 28 years ago?
C'mon. You need to start taking some responsibility for YOUR health and wellbeing here. Not to mention your husband. I think getting dad into care and leaving for warmer climes is exactly the right thing to do.
My dad was in AL placement after our care conference with rehab, due to his falls and medication assistance. He could still bathe, dress and eat on his own. It’s easier to go to Al Earlier than later.
Is it possible for you and your husband to visit 3 ALFs and leave the realtor out of it?
How much will Dads VA cover? What are his other resources?
And no, Dad CAN'T go home because you have a terminal illness and are under your own doctor's orders to give up caregiving.
Let go of the Fear, Obligation and Guilt.
Ahem.
That's really a lifetime of dysfunction, isn't it? Schizophrenic mother, abusive brother, abandoned sister, etc, etc, etc.
And your husband is a heart/stroke and major back issues patient. And is 86, and in need of care. And you have blood cancer.
Why don't you see taking care of your husband as your primary caregiving duty?
Did your father protect you from your mom's craziness or your brother's abuse?
Why don't you think that you are worthy of SELF-care at this point in your life?
I don't need answers. But these are the questions you should be asking yourself, IMO.