Home health care, or nursing home?
April 24, 2019 9:14 PM   Subscribe

Is home health care an option for an elderly man who is so weak that he can't stand up at all anymore, or should we be looking only at nursing homes? We're in the US, in New York State.

My 89-year-old father has Parkinson's disease and moderate dementia. Until very recently, he had enough strength left in his legs that he could move himself (with some support from my mother) from his wheelchair onto the toilet, and then back into the wheelchair. However, his legs are so weak now that he can't do this anymore. He fell off the toilet two days ago, and couldn't get off the floor. My mother called an ambulance (I don't live with them, and no-one else was around to help). He didn't really injure himself, aside from a scraped elbow, but he's still in the hospital until we can figure out a plan for him.

The hospital is advising us to move him to a nursing home. My mother and I are being pressured to make a decision very quickly. My father would doubtless be much happier at home, but is this a viable option at this point? His insurance would provide partial coverage for either a nursing home or home health care.

We're totally new to all this, but we need to decide quickly, because the hospital is eager to discharge him. We just have no experience with either nursing homes or home health care, and we don't want to make a decision that we're going to regret.

My suspicion is that he's beyond the state where he could reasonably live at home, even with frequent visits from a home health aid, but I'm seeking opinions from people who have been through this.

Incidentally, he weighs about 180 pounds and still has some strength in his arms. He has some dementia and frequent hallucinations, but he's always calm and cooperative.
posted by alex1965 to Health & Fitness (20 answers total) 1 user marked this as a favorite
my grandfather had round-the-clock home care when he was dying of congestive heart failure. iirc there were only a few times he was strong enough to be in a wheelchair after he came home.
posted by brujita at 9:19 PM on April 24, 2019

It would have to be round-the-clock care to ensure he was safe in the case of an emergency, like him falling down and your mom not being able to help him.
posted by bleep at 9:39 PM on April 24, 2019 [6 favorites]

What about trying it at home to see how it goes and if there are any glaring gaps of coverage? Can always move him in to a nursing home, but hard to go the other way.
posted by AugustWest at 10:07 PM on April 24, 2019 [3 favorites]

I know this is a terribly difficult time, but don't let the hospital pressure you too much about discharge. Tell them you are dealing with the issues as quickly as you can, but it takes time. I suspect they are so used to people not wanting to accept reality, that when they understand you are trying, they will be helpful. Especially if you can find one hospital staff member to be your advocate.

Although it might be too soon to consider hospice care to allow him to stay home until the end, in some areas hospice care can include palliative care, which doesn't have such difficult feelings around it as hospice, but is so helpful to the family.

One specific note: I was in charge of my brother's care for years after he became a quadriplegic in a car accident. He stayed in his home, and needed a team of 3 caregivers, because he could not be alone. Even so, he fell regularly. We always called 911 (not an ambulance) and a team of firefighters would arrive immediately and get him back into his chair or his bed. I don't how common this is, but it's standard procedure in the Pacific Northwest.

My heart goes out to you and your Mom and your Dad. Please don't worry too much about making "the right decision." You will not regret decisions you make about where and when and how. You will regret the times when dealing with the details, details, details took all your attention, and you didn't stop and pat his hand and smile and say a word, or give Mom a hug and hold her hand.
posted by kestralwing at 10:41 PM on April 24, 2019 [6 favorites]

Dementia means round-the-clock care. Someone I know had their parent moved into a nursing home after the hospitalisation. They chose a small family-style place because he was physically not so bad at that point, but increasingly confused. They were lucky to get a good place that facilitated near daily FaceTime calls and frequent visits.

The pros of him being at home in a familiar place weighed against the con of variable quality at-home aides. If they hadn't had that home available, they would have gone for an at-home until later.

I hope you get the time and choices you need for this decision, and that your mom gets the support to figure out what she needs as well as the caretaker - it's such a massive change. The hospital needs to back the hell up.
posted by dorothyisunderwood at 11:16 PM on April 24, 2019

If he can't get out of bed, he will require round the clock care because he needs to be rolled and frequent diaper changes. If these two things do not happen consistently he will develop bedsores/ pressure sores which are really painful, slow to heal, and have risk for infection which can lead to death.

Home hospice may be an option if you are looking into palliative care options and are willing to stop other interventions if no one has spoken to you about this, ask.

Someone should sit down with you and discuss all your options in detail. You do have choice, even if they are pressuring you about it. Tour the nursing homes. If it's one you don't like you can say no. There is patient preference in this.

I know people who have put together 16 hours of paid care with 8 hours of family care in the home, or other options in which family and paid care are put together for 24 hour care. If that's the case, you and other other members will need to be trained
On moving him safely, transfers and position changes. Make the hospital train you, do not leave without this valuable knowledge .
posted by AlexiaSky at 2:01 AM on April 25, 2019 [8 favorites]

Please also consider your mother’s welfare in your decisions. Is she healthy enough to contribute to his care if he’s at home? Unless you can set up 24 hrs of third party care at home she would have to shoulder some of that. Is she in good enough health to do that? And is she able to cope emotionally? Even if carers can cover the more physically challenging aspects of caring it is extremely difficult to look after somebody with advancing dementia. Clearly it is right to think about what your father wants and needs. But please also consider your mother’s ability to provide care long term; even if she is willing she may not be able to do as much as she wants to do for him.
posted by koahiatamadl at 2:59 AM on April 25, 2019 [13 favorites]

The hospital discharge planner or care coordinator will say he can only safely go home with 24hr care, else a nursing home.

Beyond personnel, he would likely also require equipment at home, ranging from the cheap shower seat to, depending on what his physical therapy evaluation says, a proper lift device and hospital bed.

Seconding the above psychosocial aspects - it sucks. Dementia sucks and is itself a terminal illness. There are ways to manage it at home but there comes a point when it becomes all- consuming for the family to do so. I haven't yet met a family that did and wasn't psychologically stressed. Best wishes.
posted by cobaltnine at 4:35 AM on April 25, 2019 [4 favorites]

In his condition (can't get out of bed, Parkinsons/dementia) he's going to need round-the-clock skilled care, and not merely the standard help-you-to-the-bathroom home care.

The Parkinsons/dementia is a game changer, because it will probably get worse. It would probably be best for everyone involved (including your father) that you fins a good facility that can care for him now and be able to transition him into a memory-care unit if/when the time comes for that. It's best that you find a good place now, rather than wait until you're in a panic and need to get him into a place at the last minute.

I'm sorry you have to deal with this. There's no fun in any of it, and can be very overwhelming. My mother had dementia, and we waited until there was an emergency that forced us to get her into a place immediately. Trust me, you don't want to be in that situation.
posted by Thorzdad at 5:25 AM on April 25, 2019 [6 favorites]

As dementia progresses you often find it harder and harder to adapt to change. So you may want to consider if it will be harder on your father to transition to a nursing home later when he will be even more confused and less adaptable.

Your mother's well being is paramount here. What would make her quality of life and happiness greater? Recently a friend of mine lost his home and independence because his wife was placed in a nursing home and the family assets were enough that he had to sell their home to cover an unavoidable portion of the nursing home costs. Your mother needs to be sure that placing him in a nursing home will not render her homeless, but she also needs to be sure that bringing him home will not require her to do caregiving that is beyond her reasonable sustained capacity.

Where I live there are waiting lists for nursing homes, and the best way to jump to the head of the queue is to get admitted to a hospital and be unable to go home. At that point the hospital will be doing everything it can to get the healthy patient discharged. I have heard of situations where the family took the patient home again, were unable to cope and... despite bed sores and mental breakdowns there was no way to get the patient back into an institution. If the nursing home situation in your area is at all like this, then taking him home and deciding it was a bad idea may lead to being trapped with months to wait before he can get a placement unless something happens that requires him to be readmitted again.

I am sorry that the two scenarios I just set out are nightmare fuel. I only want to make sure that you have a chance to consider the worst case scenarios and look into what a nursing home placement would entail for your mother financially, as compared to what bringing him back home might entail. And it all depends on how expensive and how easy to get into nursing homes are, and how much financial burden is borne by the family.
posted by Jane the Brown at 5:40 AM on April 25, 2019 [3 favorites]

The home health services that his insurance will cover would be nowhere near enough -- 1-2 visits per week from nurses and physical therapists, plus 1-2 brief visits per week from bathing aides . You would have to privately hire caregivers (or use family members) to cover the rest of the time. In most of the US, rates are $20-$25 per hour.
posted by shiny blue object at 5:47 AM on April 25, 2019 [2 favorites]

Just FYI most insurances require hospitalization prior to transfer nursing home care, so if you go home now it may be difficult to get into nursing home later
posted by genmonster at 6:50 AM on April 25, 2019 [3 favorites]

Make sure you and your mom talk in depth to a social worker, both at the hospital and at any facility you are considering. "Nursing home" is a generic term to most people not familiar with these facilities, but there are many categories offering much different care. Your father's diagnosis and abilities, as well as any rehab potential, will dictate which category of facility would even accept him unless you are totally self-pay. It will also dictate how long he can stay. Medicare has very specific guidelines and payment schedules, and you need a professional to help you plan.

Direct discharge from a hospital to a facility is generally preferable, as your taking him home might prevent Medicare even paying for a later stay in a facility unless there is another hospitalization.

Please educate yourself and don't be pressured by the hospital before you and your mother decide. Best wishes to you and your family.
posted by citygirl at 7:50 AM on April 25, 2019 [2 favorites]

We just went through this as my dad succumbed to late stage Parkinson's this past February. Echoing those that say your mom's well being needs to be considered also. Is she likely to hurt herself trying to help him if he falls?

A social worker, either associated with the hospital or hospice, can help you navigate those these issues. Hospice doesn't always mean the end is imminent. They can do visits once a week or so (either at your home or a nursing home), and determine care from there.

Hugs to you, and send me a PM if you need some commiseration.
posted by weathergal at 8:29 AM on April 25, 2019 [2 favorites]

Assess your Mom's health and strength. He can still feed himself, but he need lifting in and out of bed and a bedpan. It's a huge amount of work. He would need daily visits if not more. See if your doctor can find a referral to another social worker with trading in terminology (health of the old) and get a 2nd opinion. Also see what you can find out about nursing homes; they vary a lot in quality. If nothing else, your Mom almost certainly needs a week or 2 of rest. I suspect nursing home is most likely in his case. Not a health care professional, just have been through this with several family members.
posted by theora55 at 9:00 AM on April 25, 2019 [2 favorites]

We just went through this with my grandfather-in-law. He had anemia and then a stroke which required transfer to another hospital, then a month of rehab -- basically a temporary nursing home. We spent that month getting familiar with assisted living facilities and pitching them to grandma, who moved in with him since she has mobility issues of her own. The rehab period was a blessing, because he was comfortable, improving, and it gave the rest of the family time to make decisions.

Generally, Medicare only covers "skilled" nursing or short-term rehab, not custodial care (bathing, dressing, etc). I'd imagine with only a scraped elbow there isn't going to be rehab. So you may be paying out of pocket, unless you have a gold-plated insurance plan, or your parents qualify for Medicaid which generally requires they deplete their savings. I don't know NY state specifics, so grab the policy and read the details. The bill for these places can easily reach $10K/month.

If you decide on a nursing home/assisted living, some recommendations: Choose one close to you and your mother. Don't sign the page which puts you on the hook for your parents' bills. Ask about "memory care" if applicable. Ask if they're Medicare and Medicaid certified. Ask a lot of questions!

And remember, he's not a prisoner, he can go back home. Some homes have 30-days or more "respite stays" that might apply while you figure out a longer-term solution.

If your insurance covers even a short duration of nursing/rehab care I'd go for it. Your mom likely needs the break. Sorry, it's a lousy decision and you'll always be second-guessing, but you just do the best you can.
posted by RobotVoodooPower at 9:17 AM on April 25, 2019

My grandparents both had Parkinson's - and my grandfather had mild dementia toward the end as well - and I watched one of my great grandmothers disappear into Alzheimer's. Yes, the falls are a danger to your father. The care burden placed on your mother is arguably even greater. This was basically the reason we moved my grandfather from their assisted living apartment to the nursing home portion of their residence - because of my grandmother, and because the care he required would have been too much for her.

It sounds like your father's situation is not "visits from a home health aide", it'd be 24/7 care. Your mother will likely find it hard to be the one to make a decision here. Can you make a decision that is the compassionate one for her?
posted by olinerd at 10:09 AM on April 25, 2019 [3 favorites]

My mom used a wheelchair the last two decades of her life, going from a folding chair used outside the house to full-time driving a motorized chair. At first, my stepfather could get her in and out of the chair. By the time he couldn't they were in independent living in a retirement home (that had assisted living and personal care options, but not full nursing), and she was able to contract with the home to have nurses get her out of bed, showered and dressed, then back into bed at night. She argued her doctor into having a catheter implanted so that she wouldn't need to be lifted onto a toilet to pee. She had a very fixed schedule, even managing to have a bowel movement (TMI! TMI!) at the same time every day. Something to consider: If your dad needs to pee off schedule, how will he get to the toilet without someone to lift him? If the nurse can't come that day, how good is the backup plan?

Mom had two lifts, one fully mechanical, one electrical, that everyone used to move her in and out of the chair, or off the floor if she fell. With the mechanical lift, Mom would be draped forward over the body of the lift, bottom up in the air (and naked, because she was going into the shower or onto the toilet). How would your father feel about that? Would it even make his confusion worse?

If your father falls again, how long until someone could pick him up?

Lifts are bulky, heavy, expensive, and have no resale market. They are wider than wheelchairs. Could a lift fit through all the house doors? Through every room?

Even using the lift was a carefully choreographed dance of lift facing the chair at this angle, straps not too high or low, straps not too short or long, push down SLOWLY but with enough force.

I think you are right and a nursing home is the most workable long-term solution, but in-home care can give you the breathing room to find a good nursing home. And if it has independent living facilities, even better. My grandfather moved from independent living to the hospital to the nursing home at the same facility, and my grandmother could visit him every day.

This sucks and it's hard. Nursing is hard. It's a lot for your mother and you to do. Good luck!
posted by JawnBigboote at 10:11 AM on April 26, 2019

Thanks, everyone. We've decided to go with the nursing home option.
posted by alex1965 at 3:55 PM on April 26, 2019 [1 favorite]

I think that was very wise, alex1965.
posted by Jane the Brown at 7:41 AM on April 30, 2019

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