Best home/other care for seriously ill dementia patient, NE Queens, NY
March 30, 2024 2:48 PM Subscribe
I hope this question is specific enough. (& not too personal/specific.) My father lives in Bayside, Queens. He’s 90, & has dementia. 3 weeks ago he had surgery, then two weeks in hospital (one in ICU), then to a rehab that ranked well but is actively shit (forgot to give him his anti-psychotic seroquel the first night, were dismissive about his fall risk, lies about everything), so we’re considering taking him home for care. (My stepmother was caring for him at home before the surgery, we all just want him comfortable & happy, however it goes.)
He has some money, good medical insurance, crappy long-term care insurance (I submitted a claim in February, even before this latest crisis was told it would likely be approved based on his age & dementia, just pending hiring an aide), and no Medicaid. We’re looking at 24-hour care for the short term, and then if he gets better maybe less? Or if he continues to need round the clock care, maybe a memory care facility, if they’ll take him. I think we want to avoid nursing homes, and nobody’s ready to talk about hospice yet. Anybody have good contacts for home care in the area? Insurance knowledge? Advice? (Also I happened to talk to an assisted-living navigator, she says she gets paid by the facility, but I have a feeling they raise their fees to us to cover her commission. Yes?)
He has some money, good medical insurance, crappy long-term care insurance (I submitted a claim in February, even before this latest crisis was told it would likely be approved based on his age & dementia, just pending hiring an aide), and no Medicaid. We’re looking at 24-hour care for the short term, and then if he gets better maybe less? Or if he continues to need round the clock care, maybe a memory care facility, if they’ll take him. I think we want to avoid nursing homes, and nobody’s ready to talk about hospice yet. Anybody have good contacts for home care in the area? Insurance knowledge? Advice? (Also I happened to talk to an assisted-living navigator, she says she gets paid by the facility, but I have a feeling they raise their fees to us to cover her commission. Yes?)
No they do not raise their fees to cover comission. It's the same price per month if you call the facility directly as it if a navigator helps you find one. Assisted living with memory care is a common profile these days, your navigator should be able to help you find solid options.
posted by DarlingBri at 3:14 PM on March 30 [2 favorites]
posted by DarlingBri at 3:14 PM on March 30 [2 favorites]
Response by poster: Thanks. I thought they might raise their fees because I’d called one that said it was $10k/mo, that the navigator quoted as $11k/mo. She may have just been talking off the cuff, but it raised a flag for me.
posted by anshuman at 3:38 PM on March 30
posted by anshuman at 3:38 PM on March 30
Which hospital? Call the hospital for "navigator" services. At Northwell LIJ, it's a senior navigator; at NewYork-Presbyterian, it's a patient navigator. An in-home hospital bed is durable medical equipment under Medicare Part B, and a navigator, or his primary care doctor's office, should be able to coordinate this item (the prescription for it, & the medical-supply house contact for rental and delivery). Navigators through the healthcare/hospital system are also resources for all home-care support services.
posted by Iris Gambol at 3:42 PM on March 30 [1 favorite]
posted by Iris Gambol at 3:42 PM on March 30 [1 favorite]
Response by poster: Thanks. He’s left the hospital (lij), so i dont think they’ll help. (I called them the other day about something relating to his rehab care, and they said as much.) We can ask his doc, or the rehab (highland gardens).
posted by anshuman at 3:45 PM on March 30
posted by anshuman at 3:45 PM on March 30
An airflow mattress will reduce bedsores.
If you're not Christian or are an atheist/agnostic make it clear to the care team that they must respect this.
My father’s primary caregiver was a religious bigot who didn't and I was prevented from being with him in his last hours.
posted by brujita at 3:50 PM on March 30 [2 favorites]
If you're not Christian or are an atheist/agnostic make it clear to the care team that they must respect this.
My father’s primary caregiver was a religious bigot who didn't and I was prevented from being with him in his last hours.
posted by brujita at 3:50 PM on March 30 [2 favorites]
There's a thing called "eldercare advisor" that is fee based; we used one when dealing with our own situation. It felt a bit expensive in the moment but ended up saving us literally tens of thousands of dollars over the last two years of our loved one's life. For us the key was this person was intensely local and knew every single facility in the area, how to access care, how to get the state to pay for some of it, etc. (Unfortunately this was not in your area.)
posted by BlahLaLa at 3:57 PM on March 30 [1 favorite]
posted by BlahLaLa at 3:57 PM on March 30 [1 favorite]
Response by poster: That lij navigator service looks good. Apologies for not checking it before responding. I’ll call them Monday.
Dad is an atheist, actually. I’m sorry you had that experience, will keep it in mind.
Do I request the airflow mattress referral when i request the bed?
Thanks all, this is sudden and confusing, and of course comes with all the emotions at the same time. Plus I live in NC and my family is fractured and crazy.
posted by anshuman at 3:57 PM on March 30
Dad is an atheist, actually. I’m sorry you had that experience, will keep it in mind.
Do I request the airflow mattress referral when i request the bed?
Thanks all, this is sudden and confusing, and of course comes with all the emotions at the same time. Plus I live in NC and my family is fractured and crazy.
posted by anshuman at 3:57 PM on March 30
I just went through this with my father. Something I did not understand early on is that hospice care can be called even if death isn’t imminent. The main driver of hospice, aside from a diagnosis that is terminal, is the decision to provide palliative (or “comfort”) care only.
I’m sharing this only because you say that you want to keep him “comfortable and happy,” and indeed that is what hospice did for my father. They provided the bed, the chair, the nurse visits, and some therapies (music therapy, personal care), all covered by Medicare. These services supplemented the care he was getting at the skilled nursing facility (and thank god, because that care was barely adequate at best.) We withdrew my dad from hospice at one point for a treatment, and then re-enrolled him about a week later. No one batted an eye.
It might be worth a call to talk through what is available. I’m sorry I don’t have a Queens rec for you, but the rehab facility might.
Good luck and take care of yourself, too. It’s hard as hell.
posted by minervous at 4:00 PM on March 30 [9 favorites]
I’m sharing this only because you say that you want to keep him “comfortable and happy,” and indeed that is what hospice did for my father. They provided the bed, the chair, the nurse visits, and some therapies (music therapy, personal care), all covered by Medicare. These services supplemented the care he was getting at the skilled nursing facility (and thank god, because that care was barely adequate at best.) We withdrew my dad from hospice at one point for a treatment, and then re-enrolled him about a week later. No one batted an eye.
It might be worth a call to talk through what is available. I’m sorry I don’t have a Queens rec for you, but the rehab facility might.
Good luck and take care of yourself, too. It’s hard as hell.
posted by minervous at 4:00 PM on March 30 [9 favorites]
Response by poster: When we asked about getting an outside aide at the rehab, the social worker there said it couldnt be paid by medicare, that it would be double dipping. Is it different for hospice? Also we’ve been told along the way that palliative is different from hospice. (Also also im not sure anyone wants to hear that word yet.) Thanks though, I’ll research that also - & try to get family to talk to the providers about it.
posted by anshuman at 4:29 PM on March 30
posted by anshuman at 4:29 PM on March 30
Response by poster: Eg this pamphlet says hospice is only covered for terminal illnesses, & (if im reading it right) that once you choose hospice you’re giving up other care benefits. He’s not officially terminal, & I’m not sure family is ready to give up other resources. (Im actually pretty sure theyre not.)
posted by anshuman at 4:33 PM on March 30
posted by anshuman at 4:33 PM on March 30
I'm really sorry Northwell wasn't helpful when you called them about the rehab facility. Now that your family is considering in-home care, Northwell offers coordination for the full spectrum of home services.
Advocating for a different rehab facility may be the best course at the moment. Your father's post-operative needs define insurance-covered options right now — achieving 24-hr in-home paid care usually involves some out-of-pocket expense. When a geriatric, post-op patient is coming out of the hospital requiring round-the-clock professional care, insurance generally considers a rehab facility the best setting (medically, and financially). When the patient leaves the rehab facility for home, insurance usually covers scheduled visits from a variety of professionals (as the patient's personal support network, their family, is expected to manage most non-skilled tasks). And a dementia diagnosis is a crucial factor in evaluating care need. Has anyone in your family spoken directly with the "good medical insurance" company, for details re: covered services in different settings?
Being the primary caregiver at home is too much strain on your stepmother, especially if she's near her husband's age. If he's a veteran, Long Island State Veterans Home's Skilled Nursing Facility, on the Stony Brook University campus ((631) 444-VETS), is well-regarded but small (350-bed with waiting list, but it's been a while since I checked).
posted by Iris Gambol at 4:52 PM on March 30 [1 favorite]
Advocating for a different rehab facility may be the best course at the moment. Your father's post-operative needs define insurance-covered options right now — achieving 24-hr in-home paid care usually involves some out-of-pocket expense. When a geriatric, post-op patient is coming out of the hospital requiring round-the-clock professional care, insurance generally considers a rehab facility the best setting (medically, and financially). When the patient leaves the rehab facility for home, insurance usually covers scheduled visits from a variety of professionals (as the patient's personal support network, their family, is expected to manage most non-skilled tasks). And a dementia diagnosis is a crucial factor in evaluating care need. Has anyone in your family spoken directly with the "good medical insurance" company, for details re: covered services in different settings?
Being the primary caregiver at home is too much strain on your stepmother, especially if she's near her husband's age. If he's a veteran, Long Island State Veterans Home's Skilled Nursing Facility, on the Stony Brook University campus ((631) 444-VETS), is well-regarded but small (350-bed with waiting list, but it's been a while since I checked).
posted by Iris Gambol at 4:52 PM on March 30 [1 favorite]
I'm not sure who to ask about the mattress: Daddy was put in an airflow at the hospital,he was then transferred to a nursing home and given a regular hospital bed, when my uncle told me that he was being brought back home and put into hospice I told E to make sure that Daddy was given an airflow. Jewish family services in LA was in charge of this and my mother handled the arrangements.
posted by brujita at 5:03 PM on March 30
posted by brujita at 5:03 PM on March 30
I *think* an airflow mattress can be low-tech (specialty gel or foam) or high-tech (powered, alternating-pressure devices); here's the National Library of Medicine's primer on these mattresses and a medical supplier's page with quick considerations & comparison for the powered type of mattress & pads. The dr's prescription for the bed would specify this type of anti-pressure-sore mattress, so you'd talk with the doctor/someone in their office/the coordinator or navigator before the script went to the supplier.
posted by Iris Gambol at 5:48 PM on March 30
posted by Iris Gambol at 5:48 PM on March 30
We found that accessing hospice benefits within Medicare made so many things easier and cheaper.
The basic assumption is that the goal is make your father's days as comfortable as possible and not do anything uncomfortable for the purpose of prolonging his life. (So if he gets pneumonia and antibiotics would make cure it and make him feel better then he can get the antibiotics. But if he falls and break a hip, they are going to make him comfortable, and not put him through major surgery plus and extended rehab.) Furthermore, if you want him to get more active care, you can just opt out of all of the hospice services and then see if he still qualifies to go back on it after the urgent problem is addressed.
You know better than I do the quality of life he can look forward to after he recovers from this hospitalization but my experience has been that at this age patient never recover all the way back to the where they were just before the hospitalization event.
The benefits of qualifying for hospice is that if you father is at home (or an assisted living place that doesn't supply nursing care) he will have a nurse visiting at least once a week. he can get all of the assistive devices that medicare pays for asap, all of his meds are free, an aide will come in twice a week to help with things like bathing and more. And if he doesn't die, then as long as the doctors are willing to say that he might die soon, they can keep extending the hospice care for as long as needed.
posted by metahawk at 6:31 PM on March 30 [1 favorite]
The basic assumption is that the goal is make your father's days as comfortable as possible and not do anything uncomfortable for the purpose of prolonging his life. (So if he gets pneumonia and antibiotics would make cure it and make him feel better then he can get the antibiotics. But if he falls and break a hip, they are going to make him comfortable, and not put him through major surgery plus and extended rehab.) Furthermore, if you want him to get more active care, you can just opt out of all of the hospice services and then see if he still qualifies to go back on it after the urgent problem is addressed.
You know better than I do the quality of life he can look forward to after he recovers from this hospitalization but my experience has been that at this age patient never recover all the way back to the where they were just before the hospitalization event.
The benefits of qualifying for hospice is that if you father is at home (or an assisted living place that doesn't supply nursing care) he will have a nurse visiting at least once a week. he can get all of the assistive devices that medicare pays for asap, all of his meds are free, an aide will come in twice a week to help with things like bathing and more. And if he doesn't die, then as long as the doctors are willing to say that he might die soon, they can keep extending the hospice care for as long as needed.
posted by metahawk at 6:31 PM on March 30 [1 favorite]
I assume your dad was pretty fit for his age before the surgery? Otherwise they wouldn’t have done it, is that right?
Surgery and general anesthesia can both cause delirium (on top of dementia). So can being in hospital (Google “hospital based delirium”). The best thing for it is to be in a familiar routine, at home, to have appropriate exposure to daylight, and to move physically as soon as possible. Delirium can take time to resolve - sometimes months - and the baseline may not be the same, but it can definitely improve.
posted by cotton dress sock at 7:20 PM on March 30
Surgery and general anesthesia can both cause delirium (on top of dementia). So can being in hospital (Google “hospital based delirium”). The best thing for it is to be in a familiar routine, at home, to have appropriate exposure to daylight, and to move physically as soon as possible. Delirium can take time to resolve - sometimes months - and the baseline may not be the same, but it can definitely improve.
posted by cotton dress sock at 7:20 PM on March 30
In California (and I think many other states) there is an option known as a Board and Care Home. If you've had kids and you are familiar with the difference between a large day care center and home based center, there is a similar difference between assisted living centers and board and care facilities. Both are licensed similarly by the state, neither one offers actual nursing care. But a board and care home usually offers a much more intimate experience - six resident and one or two staff people on duty at all times. The building is usually a regular home that has been converted to this purpose. The one where my mother lived had a total of four workers plus the owner splitting all of the shifts so they knew each resident and their personalities and preferences very well. While they don't have all the amenities, we moved my mother there when her large assisted living place was unable to provide the level of day to day care that she needed - no actual nursing but a fair amount of assistance and supervision that increased over time. My mother lived there for five years and as she gradually declined, the staff was able to provide her with the increasing support seamlessly and then, eventually, we were able to use hospice to provide extra nursing support at the end so she never needed to go into an actual nursing home.
The reason I'm going into this is that we also saw people, maybe like your father, who needed 24/7 support but did not need actual nursing care, who came, stayed for weeks or a few months and then returned to their own home.
Since there is no nursing care and no fancy amenities, plus the caregivers are dividing their time between multiple people, not just one, the cost is much more reasonable than either a nursing home or 24/7 in home care.
We found ours through some like your assisted living navigator. It was great because she already knew which places had openings (with only six beds most of them are full at any given time) and then I could do our due diligence and the two that seemed most reasonable when we visited.
posted by metahawk at 12:01 AM on March 31 [1 favorite]
The reason I'm going into this is that we also saw people, maybe like your father, who needed 24/7 support but did not need actual nursing care, who came, stayed for weeks or a few months and then returned to their own home.
Since there is no nursing care and no fancy amenities, plus the caregivers are dividing their time between multiple people, not just one, the cost is much more reasonable than either a nursing home or 24/7 in home care.
We found ours through some like your assisted living navigator. It was great because she already knew which places had openings (with only six beds most of them are full at any given time) and then I could do our due diligence and the two that seemed most reasonable when we visited.
posted by metahawk at 12:01 AM on March 31 [1 favorite]
Also we’ve been told along the way that palliative is different from hospice. (Also also im not sure anyone wants to hear that word yet.)
There's a ton of confusion around these terms that arises I think mostly from the fact that, as you allude, most people think of hospice as a type of care (comfort at the end of life) but in practice in the US it's really a type of insurance benefit. In most but not all cases (the VA is a prominent example where patients can "have it all," so to speak), electing for hospice services means you have access to a suite of really excellent services (home nursing, a specialized hotline, hospice social work, specialized inpatient facilities if necessary, etc) but lose access to specific types of medical care that are not comfort-oriented (e.g., chemotherapy for cancer, most surgeries). Because hospice in the US is at its core an insurance benefit, typically only patients with a life expectancy of six months or less are eligible for it—recognizing that these predictions are hard to make and often wrong, so patients can end up on hospice for quite a bit longer than six months.
In general, you can think of palliative care as care that is comfort-oriented, usually but not always delivered near the end of life or to patients with serious illness, and hospice is an insurance benefit that provides palliative care. There are other ways to receive palliative care (e.g., outpatient palliative medicine clinics), which are often focused on treating symptoms of serious illness like pain or nausea, regardless of whether the patient is still receiving care with restorative intent.
It can be very difficult to determine a plan of care when there is discordance among the goals and hopes of the parties involved as it sounds like there may be in this situation (I completely agree with other comments that "comfortable and happy" is at the core of hospice care). If your dad has a PCP, or any physician the family knows and trusts, it may be helpful to discuss this with them.
posted by telegraph at 7:21 AM on March 31 [3 favorites]
There's a ton of confusion around these terms that arises I think mostly from the fact that, as you allude, most people think of hospice as a type of care (comfort at the end of life) but in practice in the US it's really a type of insurance benefit. In most but not all cases (the VA is a prominent example where patients can "have it all," so to speak), electing for hospice services means you have access to a suite of really excellent services (home nursing, a specialized hotline, hospice social work, specialized inpatient facilities if necessary, etc) but lose access to specific types of medical care that are not comfort-oriented (e.g., chemotherapy for cancer, most surgeries). Because hospice in the US is at its core an insurance benefit, typically only patients with a life expectancy of six months or less are eligible for it—recognizing that these predictions are hard to make and often wrong, so patients can end up on hospice for quite a bit longer than six months.
In general, you can think of palliative care as care that is comfort-oriented, usually but not always delivered near the end of life or to patients with serious illness, and hospice is an insurance benefit that provides palliative care. There are other ways to receive palliative care (e.g., outpatient palliative medicine clinics), which are often focused on treating symptoms of serious illness like pain or nausea, regardless of whether the patient is still receiving care with restorative intent.
It can be very difficult to determine a plan of care when there is discordance among the goals and hopes of the parties involved as it sounds like there may be in this situation (I completely agree with other comments that "comfortable and happy" is at the core of hospice care). If your dad has a PCP, or any physician the family knows and trusts, it may be helpful to discuss this with them.
posted by telegraph at 7:21 AM on March 31 [3 favorites]
Navigating all of this is very tricky and there is a lot of confusing terminology.
* Home health care refers to skilled medical care - nursing visits, physical/occupational/speech therapies, and home health aide visits - and is covered by most insurances. These visits are generally a few times a week, last 30-60 min or so, and the goal is often to transition to the family managing care independently. This does NOT include 24/7 care or any housekeeping. The expectation is that the family is managing all ADLs in between visits - bathing, dressing, toileting, feeding, positioning, etc.
* Home care refers to NON SKILLED care - bathing, dressing, toileting, feeding, cooking, light housework, general supervision, etc. This is generally where someone will stay with the person for a few hours or up to 24/7. This is not generally covered by insurance (except Medicaid).
* Hospice takes the place of home health care and again is generally an intermittent service.
Then as far as facilities go:
* Acute rehab/inpatient rehab: he has likely missed the window for this, but this involves 3 hrs of therapy a day (15 hrs/week), physician oversight, nursing care, and aide care. Short term stay with expectation for significant improvement
* Subacute rehab/skilled nursing facility (nursing home): for people that require skilled care that would be too hard to manage at home. Generally daily therapies (1-2 hrs/day), nurses on site, occasional physician visits, aide assistance with ADLs. Often short term stays (around 4 weeks to a few months), but many have beds for long term care. It sounds like this is where he is right now.
* Assisted living: generally assistance for ADLs provided by aides, often with a nurse on site to oversee. Not generally providing skilled care, no physician on staff. This is generally a long-term arrangement, and can include memory care.
The big question for me is whether your stepmother is able to handle all of the daily care right now. If not, you would be looking for home care assistance (likely paying out of pocket) or continuing to stay in a nursing facility that can provide that. Most places will have a social worker or case manager on staff who can help you go through the options (this also includes getting equipment covered).
posted by autolykos at 10:27 AM on March 31
* Home health care refers to skilled medical care - nursing visits, physical/occupational/speech therapies, and home health aide visits - and is covered by most insurances. These visits are generally a few times a week, last 30-60 min or so, and the goal is often to transition to the family managing care independently. This does NOT include 24/7 care or any housekeeping. The expectation is that the family is managing all ADLs in between visits - bathing, dressing, toileting, feeding, positioning, etc.
* Home care refers to NON SKILLED care - bathing, dressing, toileting, feeding, cooking, light housework, general supervision, etc. This is generally where someone will stay with the person for a few hours or up to 24/7. This is not generally covered by insurance (except Medicaid).
* Hospice takes the place of home health care and again is generally an intermittent service.
Then as far as facilities go:
* Acute rehab/inpatient rehab: he has likely missed the window for this, but this involves 3 hrs of therapy a day (15 hrs/week), physician oversight, nursing care, and aide care. Short term stay with expectation for significant improvement
* Subacute rehab/skilled nursing facility (nursing home): for people that require skilled care that would be too hard to manage at home. Generally daily therapies (1-2 hrs/day), nurses on site, occasional physician visits, aide assistance with ADLs. Often short term stays (around 4 weeks to a few months), but many have beds for long term care. It sounds like this is where he is right now.
* Assisted living: generally assistance for ADLs provided by aides, often with a nurse on site to oversee. Not generally providing skilled care, no physician on staff. This is generally a long-term arrangement, and can include memory care.
The big question for me is whether your stepmother is able to handle all of the daily care right now. If not, you would be looking for home care assistance (likely paying out of pocket) or continuing to stay in a nursing facility that can provide that. Most places will have a social worker or case manager on staff who can help you go through the options (this also includes getting equipment covered).
posted by autolykos at 10:27 AM on March 31
The #1 thing your father needs is Medicaid - it will cover 100% of home care services and durable medical equipment, which Medicare and/or long term care insurance will cover a fraction of or not at all. He should be able to qualify via Medicaid spenddown. Start collecting bank statements and proof of income ASAP, hopefully your stepmother has access to all of the relevant documents.
I don't want to discount your concerns about the rehab, but unless you're acutely concerned about his safety you will likely be better off keeping him there until he has Medicaid. The rehab should have a Medicaid navigator whole sole job is to guide you through the application process. Once he has Medicaid, the social worker can order the hospital bed and set up home care services. You can certainly work on all of these things yourself, but not only will you be taking on significant costs (Medicare requires 20% copays on hospital beds, private pay aides cost a minimum of $35/hour and Medicare will only cover a few hours per week) he will qualify for more insurance covered hours if the rehab sets it up vs you setting it up. In the meantime, continue escalating your complaints within the rehab administration and/or file a complaint with the state.
If the family is interested in hospice down the line, Medicare only covers the hospice services - home care hours/room and board for nursing home hospice is either covered by Medicaid or has to be paid for out of pocket.
Assisted living is a financial nonstarter unless "some money" means $$$$ money or until he has Medicaid.
posted by fox problems at 5:49 PM on March 31
I don't want to discount your concerns about the rehab, but unless you're acutely concerned about his safety you will likely be better off keeping him there until he has Medicaid. The rehab should have a Medicaid navigator whole sole job is to guide you through the application process. Once he has Medicaid, the social worker can order the hospital bed and set up home care services. You can certainly work on all of these things yourself, but not only will you be taking on significant costs (Medicare requires 20% copays on hospital beds, private pay aides cost a minimum of $35/hour and Medicare will only cover a few hours per week) he will qualify for more insurance covered hours if the rehab sets it up vs you setting it up. In the meantime, continue escalating your complaints within the rehab administration and/or file a complaint with the state.
If the family is interested in hospice down the line, Medicare only covers the hospice services - home care hours/room and board for nursing home hospice is either covered by Medicaid or has to be paid for out of pocket.
Assisted living is a financial nonstarter unless "some money" means $$$$ money or until he has Medicaid.
posted by fox problems at 5:49 PM on March 31
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posted by anshuman at 3:12 PM on March 30