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.
I am checking out VA spouse benefits now on deceased husbands. Some itmes there is help there depending on some details etc. they require. I have just learned some states will not offer VA helps if you are receiving MedicAID. There are so many details to learn it can be confusing. I am 87 and trying to learn about all these possibilities myself. I presently live alone in an apartment but realize I may have to make some major changes in the near future.
Fwiw one thing I’ve found is that families tend to make the mistake of letting their wallet or purse be the determining factor in the decision making on where their parent goes. I can understand why as the costs are significant….. but you do not, DO NOT, want to go through the whole moving and adjusting process to Assisted Living or Memory Care only to have 6-8-10 weeks later get a letter from the place that “we so love your mom/dad but cannot meet the level of care that your family member needs and this is your 30 Day Notice to move”. That is serious panic moment. & once that type of letter goes out, your folks are toast on ever getting into another AL or MC anywhere else. Having a needs assessment done helps avoids having that type of issue from happening.
Please realize There are NO SAFEGUARDS for secure transfer if they are in AL like there is for those in a NH. NH as they are skilled nursing care facilities are under Medicare regulations which require a resident to be transferred to a “like” facility. AL and most MC are not skilled nursing and so not under Medicare purview so they can discharge a resident to a shelter or congregate housing if need be.
If a AL makes a determination that a resident needs a higher level of care, they are not about to ever walk that back….. they will add on a La carte services till you finally get your elder moved out. Like add on medication management at $250 a week type of cost. Add on a daily dedicated aide for 3 hrs. That 4K AL bill morphs up to $5700.
really get a needs assessment done, it just cuts down on surprises.
You could also use a service like care.com, etc. These services were able to get me appointments to tour the facilities where they never returned a direct call from me.
For instance, some of the facilities in my state allow CBD. Others do not. This extends to the hospitals too. Where at one facility, my Mom was ALF, at another facility, she was Memory Care. One facility had a few locations where each location had something that was unique to it. For instance, one location had a rehab center which took in residents from all locations. Another location had more floors of independent living and no memory care whereas another location had assisted living and memory care. This way, they could cater to all levels of care and still keep you "in the system".
Other factors to consider is where is the person going to go if there is an emergency? Are you happy with using that hospital or doctor group? Can you use your own doctor, PT, additional caregivers or do you have to use their network. Can you get drugs and then deliver to them or will they only accept drugs that they pick up or are directly delivered to them? If you cannot take them to a doctor's appointment, do they have the facilities to take them? What kind of activities do they have? How are the meals? If a resident's health declines, can they stay there or must they move out to another place? And the biggie, cost; private pay vs medicaid vs ? Shared rooms or private rooms? Shared bathrooms or rooms with private bathrooms?
As you start doing the inquiries, you will start to see the similarities and differences. Another resource would be the Office of Aging in either your county or state. There is an section within that office that deals with Long Term Care facilities, funded by federal grants. Ours has people that visit the facilities and will actually write up notes on the facilities and the notes are accessible to the counselors who answer the calls to the agency.
Its a whole wide world out there and way, way, way too many options.
To my mind, your mother would do well in an adult family home or boarding care home -- they are usually small and homey, she would have her own room, and some shared living space, meals would be provided and they would be able to provide the needed help with activities of daily living. Depends on whether you can find one nearby that takes Medicaid. You probably want to go to medical appointments with her anyway.
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.
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
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.
One of your replies refers to needing to rely on Medicaid. In that case, you might not have your choice of desirable facilities.
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.
Good luck
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.
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!
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.
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.
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.
. 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!
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.