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My mother has severe arthritis in her hip and is no longer able to transfer from bed to wheelchair. Because of advanced dementia she does not qualify for physical therapy. I have to find a new home for her that will support a bedbound resident with advanced memory loss and incontinence. She does not qualify for skilled nursing or rehabilitation, so she will be living in a private pay assisted living residence. Insurance does not cover her situation. Does anyone have experience with this type of situation and what are some of the things I should look for in finding a new home specifically for a bedbound resident and what expectations should I have for her ongoing care?

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These needs sound too much for a typical al. Would an snf be willing to take her private pay?
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None that I know of. This isn't really a person who can be in assisted livings that I am familiar with as they require full care. Assisted living is not staffed for full care, and especially not staffed for memory care. Some may qualify her with full time, private pay help, but with that amount of help she could remain at home, I would think. Your Mom, sadly, may only qualify for nursing home care, or for memory care that can accept this level for care. There are no skilled nursing needs, so no SNF, and there is no likelihood of rehab and recovery that I can see.
Do feel free to call facilities in your area, however, because there is a good deal of variety out there.
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Why wouldn't she be a candidate for long term care (LTC)? Have you had a discussion with her physician? My MIL is in a very nice facility. She started in AL because of memory issues, then began falling. She refused PT in spite of great efforts by family and admins even though she was very capable of doing it. She then refused to get out of bed. She lost her muscle strength and because she was 180 lbs, was a 2-person lift. She was transferred to LTC and has a wheel chair. I would say her memory loss and dementia is mild/moderate but because she can no longer get herself out of bed and has no independent mobility, she requires LTC. Medicaid covers LTC in every state. Your mom can go in on private pay and then when she runs out of funds, apply for Medicaid. Make sure whatever facility you consider accepts Medicaid (and you need to ask because many do not).

Here is an informative article from this forum:

https://www.agingcare.com/articles/medicaid-and-long-term-care-133719.htm
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Maddie, you are going to have to contact local facilities. There is such a wide range of services offered in assisted living that you just have to interview them.

When my dad was in skilled nursing, he had a neighbor that was bedridden from a fall that broke her neck, she moved to the AL wing and paid 3k for the room and 4k for the care provided, which was the highest level of care. She was completely bedridden and could not do anything for herself.

I think continuing care facilities offer different services then a free standing AL.

Best of luck finding the best facility for her needs.
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Here in NY she would not qualify for Assisted Living, because residents must be able to get to the dining room for mealtime. Bedbound patients need a skilled nursing facility which is either private pay or Medicaid.
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Would Memory Care fit?

Here Memory Care units are often smaller & take folk with various needs - from fully mobile to bedbound. But places vary a lot.

I visited a MC that had a few bedbound residents. Some chose to stay in their rooms but some in 'princess chairs' (recliners on wheels) were moved around & included in activities if they wished / seemed to enjoy it.

My LO spent some respite time in AL with independently mobile folk but was assessed as assist x 1 to get to the dining room & many other tasks, so next stay a higher care section was suggested.

Finding the right 'label' to box people into.. makes me sad 😥. Care should fit around the person ❤️🤗
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I agree with others, her needs sound entirely too much for assisted living - typically there is a line for assisted living where on one side they are still ok to stay and you may need to either ramp up (read: PAY) for additional services provided by the facility OR pay for private services yourself from an aide (or aides) that come in and assist your loved one. But once that line is crossed, they are usually beyond the ability for assisted living facility to care for them even with the additional services (private or facility provided) and you are into the realm of SNF or LTC.

Bedbound is usually a HUGE factor in where this line is drawn, extensive medical need is another, and severe memory impairment is another. Those may actually be kind of the three big checkboxes. And it seems your mother certainly checks at least two of those boxes for sure and while you only mention severe arthritis, are there other medical needs that would contribute to her need as well?

I'm not so sure I would settle for AL without further investigation. You say skilled nursing facility is not an option - but I'm curious who told you that. And was it a single location or a doctor? She has needs that sound too advanced for an AL at this point.
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MaddieMae, it seems that you have at least two concerns, the level of care that your mother requires, and her ability to finance her care needs.

Have you been able to research the rules and regs for such placements in your area?

If so, have you determined that she “She does not qualify for skilled nursing….” based on information you’ve been given at individual facilities?

In my area, your mother would not qualify for assisted living because of the degree and severity of her physical and cognitive limitations.

Is your mother’s care completely dependent upon HER financial resources ALONE? If you are attempting to “shield” or “shelter” financial resources- a house or other property, or any other assets, you may have to consider some liquidation of assets. In any situation HER assets, NOT YOURS, should be used for her care.

Hoping you are soon seeing progress in your search.
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Does your state have licensed board and care homes? In CA, they are called RCFEs (residential care facilities for elders). The same licensing oversight as Assisted living and memory care. 4-8 residents live together, meals are prepared, medications administered, and care needs are met. She might be able to go there, but definitely would need hospice to oversee her care, and you may also be asked to pay for a private duty aide was well, as much of her care will need 2 people.
Long term care is the appropriate setting - medical oversight, nurse on duty, and trained aides, in a place with the necessary equipment. Not saying it will be wonderful.
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I have spoken with her doctors and she does not qualify for SNF as she is not a medical problem--just a mobility problem. Because of her dementia, she is not considered a good candidate for PT, so no rehab. She is private pay, not Medicaid, so she does not qualify for SNF or rehab through Medicaid. I have found several care homes here that will take her. My question is more about what kind of care have family members seen/experienced for a LO who is bed-bound. The bed-bound are prone to bedsores, circulation challenges (blood clotting in the legs), incontinence challenged, etc. I am concerned about her social and psychological well being and boredom. Does anyone have anything they've learned that they wished they knew beforehand? Is there anything I should look out for--any flag situations that the inexperienced may not recognize? I am an EMT, a very experienced caregiver for adls and memory care, but not for the bed-bound. Thanks
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BlueEyedGirl94 May 2022
I think MaddieMae the issue is going to be finding an Assisted Living facility that is willing to take on the liability of a resident that is fully bedbound. I would assume that because they are not structured to be skilled nursing level care, they are not going to be able to provide the type of care that she needs - even if it is just mobility. I'm still kind of shocked that the doctors are saying she doesn't qualify because she is just mobility. If she can't transfer herself at all - she is fully dependent on others.

Just a quick Google search - "The BEST candidates for Assisted Living communities are INDEPENDENT individuals who can handle the bulk of their day to day activities without requiring a lot of assistance". Conversely "the best candidate for Skilled Nursing Facilities are those who require constant supervision and care 24/7." (Seniorguidance.org)

While SNF generally do include some medical component - BEDBOUND is also an overarching component.

So, if you are able to find an AL that will take her -you are likely going to have to take the highest level of add-ons AND possibly have a 24/7 private caregiver (or 3 shifts of 8 hours or something along those lines) to ensure that she gets the actual interventions that she needs.

ALs offer help with ADLs, so the incontinence could potentially be addressed. But my concern would be that she isn't going to get constant attention and since she isn't able to transfer herself she will be 100% dependent on their routine or schedule. So it will be truly up to you to find an AL that fits her needs and supplement strongly with additional private aides. Because I would assume that you would need to depend largely on the assistance of private aides to help her more frequently than the AL staff through out the day depending on her needs.
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My mother's memory care had several bed-bound residents. They handled people all the way through end-of-life, and that's what you need to look for. She requires too much care for Assisted Living.

Mom's place had one man in particular who had a raised, reclining wheelchair that looked almost like an ambulance gurney that could be raised at the head and knees. (Kind of like this, but the legs could be straighter than this one -- https://www.spinlife.com/Karman-Healthcare-Lightweight-Tilt-in-Space-VIP-515-Recliner-and-Tilt/spec.cfm?productID=95424&adv=googlepla&utm_medium=CSE&utm_source=googlepla&utm_term=&utm_campaign=610148043&gclid=CjwKCAjwp7eUBhBeEiwAZbHwkecIrZLwUiZXtdPKnv6HNX5lKq9tZgYeyR0XvaF9PTU8YjA4VaUtPRoCiwUQAvD_BwE )

The caregivers had him out in the common room all the time, and I assume they used a Hoyer lift to transfer him from chair to bed.
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Memory Care Assisted Living is the place for your mom; particularly look into Morningstar AL if there is one near you. They do have many levels of care they offer residents, including those who are bedbound & even residents who require pureed food diets, which is not the norm for ALs in general. Due to advanced dementia being a condition your mother suffers from, Memory Care AL is the place for her, not regular Assisted Living. MC also accepts residents with more challenges than most.

My mother's MC offered great care options for all residents, but you'd have to speak to the facility administrator directly about what services they provide before you sign on the dotted line. Remember, too, that with advanced dementia at play, there is only SO much stimulation/activity that CAN be offered to your mother in any given day! With the mobility restrictions added in, that would limit her as far as scenic drives on the mini bus too, unless she could be put into a wheelchair and loaded onto the bus that way, which would be another good question for you to pose.

Best of luck!
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Many facilities will not take a "bed bound" patient or resident. IF a current resident declines and becomes bed bound most are able to keep them but as far as a new resident coming in bed bound most will refuse.
In many areas Assisted Living and Memory Care facilities are no longer permitted to use "equipment" to transfer a patient / resident.
If a person needs to be transferred using equipment that would be a Long Term Care or Skilled Nursing facility.
I think you should double check I think that you will find that your mom would qualify for Skilled Nursing or Long Term Care. And I would fight that if it is denied.

Is mom on Hospice? If so ask the hospice Nurse and Social Worker to help find placement that would be appropriate.
If she is not on Hospice I would call, get her on Hospice then use the staff to help you find a place that would care for her.
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Rosesetta May 2022
That’s so true! The AL/memory places around me say they are only licensed for a 1 person assist. So, if my mom needed more assistance in memory care, she would have to go to a nursing home
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Maddie, the lady I referred to was moved in and out of a wheelchair and moved in bed every 2 hours.

I would be asking the facility how they ensure she is not left to get bedsores and what they do to help her have some stimulation and enrichment.

That all should be made part of her official care plan, no matter where she goes.
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I would be surprised if you can find assisted living that takes bedbound patient. AL usually means you are ok are your own with some limited assistance.

Why doesn't she qualify for NH/Memory Care if she is bedbound and can no longer able to transfer? You may need a dr to document that she needs NH for medically necessary assistance. Or are you saying she doesn't qualify for a Medicaid bed in a NH due to her assets and income? You can self pay with her money until she spends it down and if you keep facility aware of her money balances, they are usually good about helping you apply for the Medicaid bed.
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My mother is almost exclusively bedridden (has been caught walking a few times, but usually fights transferring into a wheelchair and demands to be left in bed), is incontinent and has advanced dementia. We are not in the USA and her care is private pay. She’s in a small home - about 10 residents - and her bedroom is situated such that she hears the house noise. Which is great. In her mind, she’s hearing her mother clattering dishes in the kitchen, she can smell food cooking, she hears people coming and going (she was part of a large family), she hears the great room tv, radio, and, although she refuses to socialize with other residents, she is relaxed in the busy, homey environment. Plus, I feel that the small staff means they’re quick recognize changes as the same people see her all the time. We’re happy to have found this facility.
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I live in Charlotte NC. My husband is paralyzed and has Dementia. He is in a skilled nursing facility. All his income, retirement and SS go to nursing home and Medicaid picks up the rest. I did have an eldercare attorney handle this. He is cleaned daily and fed. I feel comfortable with his care, but I do visit daily to play music and read. Good luck, it’s hard 😢
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I've never felt comfortable with the idea of people remaining in an AL facility after their needs reach that level of care, no matter what the facility claims they usually do not have the same capability to provide care that a nursing home does. No matter how much is promised or how well meaning an AL has lower staffing ratios, access to lifts and types of lifts may be limited and therefore opportunities to be part of the AL community will also be more limited, I'm doubtful there will be any totally accessible bathing, the dining room may be less able to accommodate dysphagia diets.
I get that there is a reluctance to disrupt the person needing care and move them to a different home, but once bed bound they likely will need to move to a different part of the facility anyway, and in my opinion once your word shrinks to four walls the setting hardly makes any difference. You may be counting on familiar staff, but even that isn't a guarantee because of high turnover, plus many employees of an AL work there rather than at a NH because they don't need to provide that level of care.
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I believe this is my first post on this forum, but your situation struck home with me. My husband is in a similar situation in that he does not need skilled nursing care but needs more help with ADL’s than the typical assisted living resident. We tried a 30-day respite stay in an AL facility and I had to pull him out after a visit to the ER. I learned a lot during his 2 week stay even though it did not work for us, and cwillie’s response reflects our experience. Here are some questions I would ask the facilities that have said they will take her:

How many other patients do they have with similar needs?
How close would her room be to the nursing station?
How much staff do they have for each shift?
Do they have programs such as pet therapy, etc. to keep her occupied/entertained?

I hope this helps.
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Is she not able to sit up? Just because she can’t ambulate or transfer herself does not make her bed bound. She could still sit up in a reclining wheelchair, Geri chair or recliner. She absolutely can qualify for therapy as well. I am an OT with 28 years of experience
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That sounds just like my situation except for the dementia. I am at a loss what to do it is getting harder to move her and deal with the toilet issues. Help
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I’m thinking you are having to work towards Medicaid…does she own her home? Was she in AL before these events ?

i don’t see where an AL is capable of providing that level of care. And you will want to be sure there’s enough staff.. post Covid , help is difficult to find… they just don’t pay these people enough !

At my mothers memory care , evening/ nights just two people on. Weekends .. I dreaded..as same .. my mom ended up in diapers, unable to stand to transfer, became two person assist. One day I was there, and she had diarrhea… after 35 minutes no answer , I went and found someone… yes they were busy….but just same …

AL is for where people can assist themselves and the AL fills in the blanks.
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Medicare has ratings for skilled nursing and assisted living residences, many states have records of violations by these places. Find them and check them. They tell you how they have done over time which gives you an idea of their quality. It is a good beginning. I learned them watching a hospital social worker looking for placements.
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I'm surprised that she does not qualify for skilled nursing, as she is unable to move from bed to wheel chair and is incontinent. Often special lifts are needed to transfer her in this situation. You may want to get a second opinon on that. All the best to you with your search. Try to find a place close to you so that you can oversee her care and visit often.
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Perhaps an Elder Law Attorney can assist your mom in filing a petition with Medicare or Medicaid to get her the nursing care. If you refuse to accept responsibility, then she can become a ward of the state and, I believe, will then be required to place her. Get some good advice from a pro.
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My husband is in this very same situation: Dementia, incontinent, can’t walk/stand. He also doesn’t qualify for skilled nursing. I had to place him in a group home, where they use a Hoyer lift to transfer him several times a day. It is also private pay (none of them around here take Medicare, and I make too much for him to qualify for Medicaid). Thankfully he has a pension, because just about every dime of it goes to either the facility outright ($4,400/month, which is a bargain), or to medications, wipes, diapers, lotions, etc. They tend not to pay for anything that “goes onto the body.

I’m not complaining, though. He is well-treated there, and they did not bar me from seeing him during the pandemic, unlike the first place he was in, that gave him Covid (the reason he’s now unable to walk) because they ignored the other resident who was clearly sick and let him infect the entire facility, dropped him last Christmas and tried to blame it on him, stole, etc. You have to be very on top of your loved one’s care at all of these places.
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it sounds like a memory care patient. That's about the description for the folks in memory care in my mom's assisted living facility.
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Sounds like she qualifies for memory care. Look for facilities that will take clients on Medicare and/or Medicaid.
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MaddieMae: I did see your update further down this thread. I don't have very much knowledge on the subject since my late mother didn't live long enough to even enter the assisted living facility that I had put down a large chunk of change on (since the NH wasn't letting her stay there). Fortunately, I was able to get a refund. Best of luck.
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