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Mom is 64, had a stroke last year, and is now wheelchair bound. She lost use of her left side (arm/hand has lost all movement; leg has a small amount of movement - enough to do 'some' pivoting and very very limited standing - maybe 2 minutes at a time [supervised]).



Her short term memory has been impacted very slightly. Otherwise, she can feed herself (can't cut food though). She can communicate just fine, her speech and vision are great and she has use of her right side. She has urinary incontinence now though.



So, she needs help with: meal prep, transportation to appointments, changing of pads and dressing/bathing. As of now she is transferring in and out of bed on her own but should be supervised doing that IMO. Same with toileting.



I want to get her out of the nursing home she's in. I am just beginning to figure out the differences between NHs, ALFs and board and care homes. I would like to know - how do I make the decision as to what kind of home is best for her? I am really not sure yet based on what I've read which type of facility would be the one to provide the best care for my mom. I do believe that right now she is open to either another NH or ALF but would prefer an ALF because she has also seen one before and is aware of how they 'look more home like than where she currently is'.



I do like the residential feel of ALFs as well but at the same time, right now I am leaning towards thinking that if she's already in a NH, it's because her level of care mandates it - meaning, she NEEDS to go into another NH. I will keep an open mind for now meaning I am going to start visiting other NHs and ALFs (possibly board and care homes as well), but I have been hearing that many of these facilities are so happy to take your money that they might overpromise a bit. So I'd love opinions on what others would focus on doing if they were me.

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Sounds like Mom is in need of more frequent attention than an ALF would be able to give her . I don’t have experience with board homes , however it sounds like she is right on the edge of needing an SNF anyway . I would suggest finding another SNF . Maybe another poster can tell you more about board home . ALF do tend to keep existing residents who may be needing more help with transfers , cutting up food , etc. for a while before going to SNF , especially if the family hires a private aide to come help . But they typically don’t accept people who are like your Mom is now . They aren’t staffed to give that frequent and amount of attention .
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PsalmsTestimony Jun 13, 2023
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My mom's in AL and I seriously doubt this facility could handle the level of care your mom needs.

I would visit a couple other SNFs to try to find a better one. BUT it is very possible that your mom will also hate the new one just as much if not more than her current one. Is her depression being treated? I mean, her situation IS depressing, unfortunately.

My mom has dementia and she lived with me for 7 years. So I caution against bringing her to your home. Even if you hire caregivers, YOU are still responsible for her care and have to manage the caregivers, fill in when they are sick or away, train them, monitor everything, etc. etc. It's a LOT of work even if someone else is doing some % of the hands on work.

And as already stated, you should not be spending ANY of your $ on your mom's care.

Best of luck!
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PsalmsTestimony Jun 13, 2023
Post a very traumatic situation decades ago resulting in involuntary hospital commitment, my mom has been adamant for many many many many many many years that no one would ever 'make' her see a doctor, go on certain types of meds (mainly anything related to mental health), etc. So the mental health part of things is a sensitive subject and difficult to address.

However, she is definitely now open to counseling which is huge; I just need to find her a good therapist and am still waiting on her Medicaid approval fyi. Getting her to a therapist will help some...I hope. It's depressing to be in a depressing nursing home. I imagine there aren't many better ones honestly, but I am definitely going to start visiting and researching other NHs in the area soon.
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I put my mother in a small care home. I became aware of them because my FIL was a palliative care MD before he passed (he visited patients in all manner of living situations), and he had always said that if he ever could not be cared for at home, he’d like to go to a particular one. He died at home, but I did go visit the one he liked, and I could see the appeal. It was a big house near a lake with a yard, with a few farm animals even, not at all institutional, very bright and clean, 24/7 nurse on site.

So when my mom landed in a SNF, and needed lots of help with ADLs, I toured a few nursing homes, but really gravitated toward the care homes. Probably a lot to do with her personality as well, but she just wasn’t going to fare well in any remotely institutional setting, changing RN and CNA faces, etc. The small home I found her has been as close to an ideal solution as imaginable. The same people bathe her and feed her, prepare snacks on demand, attentive and receptive to my calls. May be hard to find the right one, but within the right circumstances, a potentially ideal fit.
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Psalms, any ALF is going to come to the NH to "see" mom and evaluate her for suitability. Be aware that the "base" charge may not include extras like med management, shower assistance
. At some places, much of the help is a la carte, meaning an extra charge. It adds up fast.

Mom's disability income, even if approved, won't go beyond age 65, correct?

Start by figuring out mom's guaranteed financial resources. Make sure ANY facility you talk to will accept Medicaid when it's needed.

Is mom private pay at her current NH? If so, perhaps your first step should be finding her a new one that offers better care.

Please do NOT use your own financial resources. You need to save for YOUR retirement!
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PsalmsTestimony Jun 13, 2023
Mom is not private pay. She is currently under a 'charity program' locally that pays for her bed. That program has a limited number of beds (of course) at a limited number of facilities. Getting in contact with the person that runs the program is and has been extremely challenging, however, at this point I still have the names of the other facilities that are part of said program, so I think that I will contact those 2 other nursing homes that I know are part of the program and ask if I can put her on the waiting list there, or something. I'll visit in person and do this actually.

Her SSDI converts to retirement income at age 65. She turns 65 in November. I was under the understanding that SSDI is typically a higher payout than retirement income though (someone can correct me if I am wrong). I guess it now raises the question to me if she should continue with the pending SSDI application or try to 'pause' it and instead apply for her retirement income instead? Either way, the income is going to go to whatever facility she is in so that's that.

ALFs are sounding more and more expensive the more I learn about them. My mom would like additional information on all of these options. I was going to print them out and share with her but I also don't want to get her hopes up of going into say, an ALF. At the same time, I do want her to be informed of all of the potential options for herself.
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She would be level IV care in any ALF that would take her. That would make her care very expensive indeed.

I would, were I you, go to visit at least two (if available) ALF facilities in yours area, and as many B&C facilities as you can find and discuss her needs and their staffing and abilities to fulfill her needs. You mention considering this, and it is likely a good idea. And you care correct about the tendencies to overpromise.
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PsalmsTestimony Jun 13, 2023
I will indeed start this process of visiting multiple ALFs and B&Cs.

I hope I can find ways to speak to some of the families of the residents as I believe that could give me the best insight regarding if the facilities are meeting standards for residents' care.
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Last year I was at the place you are now. I took on the responsibility of caring for mom after a sibling bailed on the commitment. It has been an eye opening experience. Pray. We were blessed to find a board and care that would accept mom. The dementia started 4 years ago and mom can be a challenge to deal with.
I have seen Nursing homes, Assisted Living facilities with 3 levels of care and several Board and Care Homes. For us it is a matter of economics. It is a harsh reality, but a reality nonetheless. We live in Southern California where the cost of living is high. I visited several Assisted Living’s and as someone else posted, they have pretty grounds, games, activities, fun things to do…. At a premium. There is a ‘Base’ price with several room options. The caveat is that the facility determines what level of care, and needs the ‘guest’ will require. Every ‘service’ is a la carte.
So, by the time you add things up, the cost was far more than our budget allowed.
My aunt was in a Convalescent Home/Skilled Nursing Facility. That was definitely an institutional setting (at least where her room was). She suffered from strokes as well and needed more care. Mom stated more than once that she would ‘never go ton one of those’. My step father at 82 had dementia which was aggressive and mom tried Board and care for him but he wouldn’t have any of that so mom cared for him at home where he passed with a year. So fortunately or unfortunately I have had the experience of seeing several types of facilities as well as mom bouncing from her home (which I wish she would have stayed at with a live-in) to my brothers (small cottage on his property) to the board and care where she is now. For me it was nothing short of a miracle that (for all of us) she was accepted into this home. She went straight there from the hospital after contracting a UTI and falling. The administrator went to the hospital to interview mom and the rest is history. It’s a balancing act. Between her SSI and VA (spouse of Veteran) assistance her living expense is covered. I get any and all items she needs, take her to all appointments and see her several times a week. My blessing is that she now lives a mile away and I work from home. You may want to do what I did and investigate all the possibilities. Pray. Things change. As I monitor moms dementia I have to consider what the next move may be. Her biggest challenge is her weight and declining mobility. Once she needs a lift, that (for her) means a private room and yes, the fee goes up. I hope you find your answer. You must consider your mental and physical health as well. Most of us are adaptable, mom adapted, I/we did. I pray for you and your mom
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Psalmstestimony,

Look at the other residents every place you visit. That will help you see what care levels are already residing there.

If you schedule a tour, it doesn't allow for you to interact with anyone but the tour guide. Go once, then go back without notice, this can make a lot of difference in what you see.

Do not buy amenities she will never use, find a facility that meets her care needs and her social level. My dad would have never used the activities and stuff, so we opted for a cheaper board and care that didn't have those built into the price, $$$$.

Listen to your gut, it is a good BS meter, this business is not so clear cut in today's climate, so diligence is what is needed to find the best fit.

Best of luck, it's hard and time consuming but soooooooo worth the effort. Getting it as close to right the 1st time makes it easier for everyone. Especially the patient.
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PsalmsTestimony Jun 17, 2023
Thank you so much. I am just seeing/reading this when I woke up this morning. It seems now that the ALF option might be ruled out due to so many of them not taking Medicaid. I honestly don’t have $5k monthly between my mom and I for an ALF. I have her on the waiting list at another SNF but perhaps I will start to put her on the waiting list at several SNFs.
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Does anyone know if board-and-care homes, also known (I think) as custodial care facilities EVER take Medicaid? I have been reading about this for my own situation and it seems that they do not. Also, it seems a bit complicated to qualify for Medicaid in an AL, even if the facility does accept medicaid, especially if you are required to begin as a 2-year self-pay or similar.

Our AL where my sister is now is Medicaid certified and supposedly they do take Medicaid, but it seems you need to meet very specific criteria in order to qualify, more than custodial care. At the same time, our ALF is clear that they are “not a nursing home” and cannot provide a NH level of care. So the “stay here for the rest of your life” advertisement they have might not be reality for most.

I may put this on a dedicated thread—this is complicated, and fraught with potential pitfalls. Probably important for us all to understand well.
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TXLori1968 Jul 2, 2023
I would appreciate a separate thread on this topic to continue. My Mom lives alone, had a stroke two years ago and has recently been diagnosed in the early Stages of Alzheimers. Unfortunately she already had short term memory loss from the stroke so the added memory loss with early AZD is making it too dangerous for her to live alone. I am her only child so it is all on me to get her into the appropriate care facility. Additionally, Mom refuses to give anyone POA for finances or medical. She "loses" belongings constantly which I later find out that she either gave away to a neighbor or threw away. However, she will also claim her sisters, she has 3, or someone else STOLE her belongings. We took her car way last year as she additionally has very limited vision due to her 1st stroke and was secretly driving the car. She sold the car using Carvana. Mom owns her home, receives monthly payments from social security and my deceased Father's pension, but overspends every month consistently. I am afraid she needs memory care instead of just AL now which is much more expensive. Her goal is to live in her home until she dies there like my Father was able to do. I am hopeful for suggestions from this group as I must take action soon.
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Psalmstestimony SNF may be the best choice. If you visit them, see if you can swing by the PT area, especially if there are several people there for therapy. You may find out all you need about the facility just from this area alone.

Good luck
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Your mother's " level of care needs assessment" will be a determining factor on what type of care facility will accept her. ALF have specific parameters that one must meet in order to be considered appropriate for ALF; " skilled care" ( NH) and other care residential facilities all have guidelines as to what patients can be appropriately cared for in the facility.
Get a case manager, usually a licensed social worker, to assist you with better understanding of facilities and, to get an appropriate current
" level of care needs assessment " done for your mother. Then you can both better proceed with considering facilities , cost, options etc. The case manager should also be knowledgeable about costs, and what the patient ability to afford is.
Sadly, it's a bit like looking at houses to buy; they always want someone " pre-qualified" for what their level of income/ affordability is, before " house hunting". In this case with aging care, the other factors are what level of care is assessed as needed to keep the patient safe. And, of course there are the many emotional factors involved with providing care for loved ones. Be sure that you are also receiving emotional support for your own self care.
You can also confer with an Elder Law Attorney for even more help navigating the options and, understanding very complex systems.
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