Assisted living vs. nursing home, any advice?

I’m in NY and don’t quite understand how Medicare is paying for your Dads assisted living. In my area the AL facilities are $4000/ mo and Medicare doesn’t pay for it at all. It would be private pay. I didn’t know Medicare had different rules by state. And there are very very limited Medicaid beds in these facilities.

LoLo1169, I read so many different descriptions of AL and MC on this site, the care must be vastly different depending on where you live. I am in S. AZ, Snowbird capital of the USA I believe. Our traffic triples this time of year. So perhaps we have some options available that other areas do not offer yet, I am sure as they prove effective and affordable options we will see that they are expanded throughout the nation. My dad lives in an Assisted Living house, 8 people max, laws regulate how many can be in a home based on certain criteria, ie # of rooms, sprinkler system, etc. I am sure this varies state to state. We currently pay 1,300.00 per month for a shared room, this includes all of his meals, snacks, med management, laundry, housekeeping, daily activities and trips to the store, they also allow him to keep his pocket pooch (6lb chihuahua) and are very helpful with the dog. He has residents that he shares this home with that are wheelchair bound, paralyzed from the chest down and all that entails, yes, this man pays more because he requires more care, however, all medical services come right to this home, the manager of the house, is a phone call away to schedule whatever is required, no limits on how often the NP will come out if she is requested to come see an ill patient. If it is beyond her skill, the doctor will come or he will be transported to hospital. I know that insurances play a part in these fine services, my dad was cancelled from his medicare alternative plan because he moved out of his covered area. What a blessing that was, it opened all of his choices for what plan and coverage he wanted, no pre-existing as he was cancelled by the insurance co. I bought the best plan offered, I figured after a year we could change but, for less than 200.00 monthly it gave him choices. Not so with the medicare advantage plans (medicare replacement is what they really are), so please look at what is available in your area and do the best you can to find a good fit for your mom where she can stay put, my dad will live in the same room he has now until he passes. Everything I have read says that it is extremely hard on dementia patients to move, sometimes causing rapid decline. Oh saying that, one of the old gents at my dads has had to have signs put up for him, Bathroom that way, D****ie room, etc. took him some time but he figured it out. He has pretty severe dementia and can not remember 1 minute ago but can navigate the house and if needed someone asks him and he receives help, so few people make it more like a family, yes with warts and all but, not remembering does have its bright side. Good luck with your decision, I know it is not an easy one and in reality, No one wants to live at any of these kinds of places. So best fit for mom and know you are doing the best you can in a hard situation. Also, ask what price they can really do, I got a discount by asking if they could take him for less money. God Bless you.

As to those saying SNF - it depends on the person's medical needs. If they are in the least self-caring and mobile, even with walkers or wheelchairs, there is no need to go to a SNF. If one has excess medical needs (for example a feeding tube) then yes, move to SNF. Having ANY level of dementia does not = SNF, only the later more extreme levels.
Our mother is beyond AL, but nowhere near needing SNF.  She gets up and washes, dresses and feeds herself in the dining area (they are given choices for the meals too.)  She requires very little assistance, but cannot be left in an open environment.  She recently moved a little in level, asking and talking about her mother as if she were still alive and asking to go back to her previous residence (one gone about 40 years, the other sold 23+ years ago) and repeats statements and questions many times, but still does NOT need SNF!

Memory Care (MC) is, as Countrymouse said, a secure (read locked) facility for those whose dementia/memory losses are beyond living alone. In the early stages, one might be able to remain in home (perhaps with some oversight) or move to an assisted living place, but as it progresses, it becomes too hard for the person to maintain any kind of independence (except in their own mind.)
As a side note, Memory Care is another flavor of assisted living. AL residents may need some help managing their meds, help with ADLs and so forth (many have walkers and wheelchairs, but are still functioning mentally.) In a Memory Care unit, there are/can be a number of residents who also have walkers and wheelchairs, but the deciding factor is the dementia. Our mom still manages to take care of the basics (wash, dress, toileting, eating) but cannot remember what she said or did two minutes ago. So AL would NOT be a good choice as she sometimes needs help finding her room or could just walk out the door (residents are NOT locked in or specifically watched in AL - they might catch someone who has dementia sneaking out, but if distracted by another, no one is there to watch them! This is one reason why they have a locked down unit for various dementia residents. There is also a little more help provided, so it does cost more.)

MC stands for Memory Care. It's a euphemism, not that that matters especially, for a secure facility staffed with people who are trained in dementia care.

What is a MC unit?

didntknow: I agree! The reason is that the Alzheimer's will progress.

I moved Dad to Al so he would have help while he would regain strength, and I could bring him home. I feel now I should have paid to keep him at the skilled nursing facility so they could have monitored him more closely and helped with his needs. The facility had a full time nurse, and I expected they saw, had things reported to her from the aids while helping toilet or bathe. But they didn't . Just handed out meds to the aids, and said nothing. Even though I saw Dad every day, He wore baggy comfort clothes and I didn't realize he was losing so much weight, or that he had a huge pressure sore on his lower back. By the time I realized he was struggling, more lethargic.. and got him to the hospital, it was too late. He had a UTI and went septic.

It wasn’t a UTI. The Neuro psych finally officially diagnosed her with Alzheimer’s. She is still saying she is sick all the time. I am wondering if she needs to be in a nursing home because she requires constant medical attention. Though they can NEVER find anything physically wrong with her.

It’s been tough because she has become really nasty and paranoid. She insists she only has a Mild Cognitive Impairment. Implies that we are trying to screw her over. It’s frustrating. The health aspect is especially frustrating because she is never actually sick. We are afraid that the one time we ignore her complaints she will actually have something wrong! So that means frequent weekly doctor visits. 

It may be time to consider a specialized memory care setting. They may have a stronger ability to manage some of her dementia related behaviors. Hang in there.

"Assisted Living" means exactly that--assisted living, so the pt has to be pretty competent to handle the basics of life. Your mom sounds like a MC unit would be better for her, if she doesn't get out of bed to eat or socialize.

However, a good pysch eval and perhaps a change in antidepressants (Zoloft is known for causing stomach upset) may do as much 'change' as is currently needed.

Are you positive she is actually vomiting? My mother is also a hypochondriac, and often says she's been 'vomiting for days'--yet there is never any evidence that she is, or has been. I was at her home 3+ weeks ago, she was sitting in her armchair swathed in blankets and holding a basin she'd gotten from the hospital. Said she'd been vomiting nonstop for days. I took the basin and saw that it was actually DUSTY in the bottom. Asked her calmly if this was what she's been throwing up in and yes, she "filled it" several times. She's very slow, can barely walk, and if she had had bouts of explosive vomiting--there would have been evidence. (sigh) It's so hard to know what is REALLY wrong with her, as opposed to what she thinks is going to get the most attention.

Be gentle with mom, sounds like her panic attacks are real, and they are horrible. I get them and I am miserable if they don't get treated. You can get the psych dr to deal with those. Maybe once she isn't "scared" all the time, she'll come to a place where she can function within the milieu of the ALF. You want her to have the most independence while she can still 'enjoy it'.

I wish you luck.

The original question was AL vs Nursing home. I would not recommend a nursing home for this person's mother, but perhaps she needs to be in a MC unit. Certainly getting expert medical advice would be the best course of action, and depending on the results, THEN make a decision about how best to take care of her needs. A change in medication and/or hiring someone to work with her one on one may make a difference. If not, consider a MC place, but do your homework before deciding on a place!

Although I certainly do not know everything, in my experience, AL is for people who have physical needs, help with ADLs like help taking showers, dressing, etc but still have all mental faculties. Milder dementia with ADL needs can also fall under AL. Nursing homes are for people who really need a lot of help, including medical needs. Memory Care, also a form of AL, will provide help with dementia AND if needed the ADLs (same as AL), but is a locked down unit because some residents could just wander off.

In LoLo1169's case, I really do not think her mom needs a nursing home and would likely be miserable there! I can agree with the AL stance in that they are not there to provide 24/7 care. Strict AL is what it is, assisted living. MC is also this, but more and perhaps is more likely where mom needs to be. They DO provide more hands on care than just AL. My brother could not get the concept of these differences through his head when we were looking for a place. Our mother is ambulatory and can perform her ADLs, but cannot remember what she said or did two minutes ago. She needed MC. During our walk-through with mom (who by the way was adamant she did not need help!), he was still pushing for AL but the staff members said no, and more than likely would have refused to take her into AL. BTW, this facility has IL, AL AND MC, so one can, if there is availability, move from one level to the next without leaving the facility.)

One place we had looked into during a search for a safe place told us it was MC to the end, including hospice, nursing care, etc, but was about $1,000 more per month. My take was that amount per month, given that she does not need extra care (current place includes 1 hour/day in the cost and she does not even use that) could build up over time and provide extra care much later when she does need it. The current place she is in will not provide skilled nursing care, but if/when we need that we can either consider hiring outside help or transition her to a nursing home.

As for finding a place where every person is strapped in a wheelchair - not every facility is the same and not every one has residents who NEED a wheelchair. If you find a place like that, more than likely these people ARE at that level or are drugged up (nursing home was like this for our dad - any problems caused, medicate to alleviate that problem) and more than likely anyone who has a LO like our mother would pass over these places, so by default they end up with only these residents (or it is just a nasty place!) A GOOD MC place has, like in our mom's case, a mix of ages and abilities. There are many like our mom who can still get around on their own, several who use walkers but still mainly take care of themselves or get some help with ADLs and one or two in wheelchairs, but no zombies!

Eventually all dementia patients will end up like that as the disease process robs their mind and by default their abilities, unless something else causes death before then. It is inevitable. When they reach that point, a nursing home may be the only good option (or hospice care in the MC facility - the cost and care should be considered before making decision to move.) What one has to do is shop around, visit places and see what the places provide for help and activities, and see the residents that are currently living there. If they are all zombies, skip that one! Mom's place has activities (not everyone participates, but they are offered and encouraged) and assessments are done on a regular basis, reporting to us what mom's current status and needs are. The residents range in age from mid 50's (very sad!) to one woman who just turned 100!!! That woman still gets around with her walker, loves jigsaw puzzles, can still use her phone to contact family, etc. So no, not every MC place is full of zombies. Those would be places you probably want to avoid. I cannot stress enough - NOT EVERY MC UNIT IS LIKE THAT!!! Every place (that includes nursing homes and regular AL) is different and one needs to check the places out - talk with staff, find out what their "plan" is, visit at random times to see what the residents and nursing staff is like.

Again, medical assessment to see if there needs to be a medication change (our mom only takes BP meds!) and/or determine if there is a medical issue that can be treated should be the first course of action. Decision to keep mom in place, hire outside assistance and/or move LO to a GOOD MC place would follow after the assessment. It could be as simple as changing the medication or treating some real underlying condition, but if this woman already has dementia, the OP should be looking into MC for future placement. Plain old AL does NOT provide this kind of care.

Lolo1169, I have my dad in an ALF that is a small in home (8 people max) that is an age in place, right through hospice. I signed him up for in home health care, doctors, labs, xrays, etc come right to him as needed, he is on Medicare with a supplemental policy so it costs him nothing extra. Maybe you have places where your mom is that do it all until the end, worth checking out. I also chose a place that was owned by younger couple because my dad thinks he's 18, always has. So he gets to hang out and live with his "peers". LOL

When I was looking for a place for him, many people told me he needs memory care because of the dementia, well, I looked into them and was aghast, every single person is strapped in a wheelchair, fall liability you know, they looked like the wheeled dead.
I know some people are so far gone as to need being behind locked doors and not allowed to ever walk on their own. My granny was gone like that, yet they did not lock her up and isolate her, she wheeled throughout the facility, and this was before all the alarms to notify staff someone has gone awol. The staff ratio in these places is higher as they will not let the seniors do anything for themselves, even if they can take care of bathing, dressing etc, they won't let them.  If your mom is having a hard time adjusting to AL, this kind of place could potentially push her over a cliff.

Sounds like the place she is in forgot what business they are in, yikes, it's called Assisted living for a reason, they charge enough to have a doctor on staff for petes sake, maybe you can find a home that understands they are not just warehousing human bodies, these are actual human beings. I pray you find a place that will help your mom feel safe and loved so she can spend her final days without being so terrified that she vomits.

God Bless You and help you find that place. I pray that you take care of you during this difficult journey. 🤗

~

As my Mom became more comfortable at the ALF the frequency of complaints reduced. it can be hard to deal with because you have to evaluate/intuit whether it is something that can be fixed or whether it is mostly anxiety or too much time to focus on a nonspecific symptom. Frequently, distraction - getting her out to eat or shop is the best medicine I've found. If she gets genuinely tired - then she gets good sleep and -in general - her life improves. The first 3 months were the worst - then gradually it has improved over the 2 years she's been there. I have also switched to the medical provider who comes on site and have engaged with the visiting nurse care on site. The ALF itself does not do much "care". There are times families hire a one on one caregiver if care needs are higher.

As Alzheimers progresses, perhaps she should be in an SNH. The disease does not improve.

I was able to keep my mother at home until the end and I agree that a visit with a geriatric psychiatrist might be useful - especially if this professional has experience with dementia patients. Not all dementia patients get hypochondria, or indeed any particular obsession. Each case needs to be treated individually. It sounds like your mother is undergoing some kind of discomfort. It might be physical but equally it might be her reaction to what is happening to her mind.

My MIL is in a SNF that has a Memory Care unit which she was moved into last year as her dementia progessed to the point where she needs that extra monitoring. Many elder care facilities offer AL and Memory Care in the same facilty which is great since the change is at most, to a different floor or different building.

Since her real problem is Alzheimer's and not other issues, a SNF isn't likely to be the best place for her. You might move her to a SNF and find that as her dementia progresses, they would not be able to cope either, since they are really set up for medical issues rather than dementia, and you'd have to move her a third time. Our company often provides "companion care" for people in assisted living - as many posters and the company mentioned, ALs mostly do not have the personnel to give really personal and private attention. It might be a response to the disruption of the move, and ease with time, so you might be able to gradually cut back on the extra care hours and not feel like you're signing up forever to be on the hook for payments over and above the cost of the AL. However - a real memory care (either a dedicated section of a larger community or a dedicated building with only memory care), with expertise in handling late-stage Alzheimer's, is likely to be a much better option longer term for your mom vs. a regular AL that says it can handle dementia. You might want to start looking around.

My 2 cents -- check into a memory care facility. Dad had a nice private room and bath. They provided all ADLs and daily activities. He was wheel-chair bound and a 2-person assist, but many there were mobile and much more capable than he was physically. The staff-patient ratio was much better than I found in SNFs too. He was dressed and brought into the common area every morning before breakfast. They provided a host of activities for the residents and even a nice enclosed courtyard for enjoying outside time. The cost is less than SNF's too, tho I don't think Medicaid helps with these facilities where I live. I think the main focus in these places is Alzheimer's and Dementia, so they're certainly used to dealing with patients like your mother.

Always good advice on this forum. I agree with most above.
I also agree with the not moving your mom any more than necessary. Which then brings me to my next question, does the current AL have a memory unit as well? I ask only because at some point, with dementia, she will need to be moved to a memory unit. It would be nice to think she wouldn't have to be moved to a whole new environment. With that said. If the current AL does not have a memory unit, then that is something you will need to look in down the road. There is no way to know at what point she will outgrow the AL. Dementia is funny like that, no two people experience the disease in the same way.
I was able to keep my mom at home until the end. I lost her last month. I am eternally grateful that I was able to do that for her.
Good luck with your mom. Stay patient. And always go along with whatever she says and then redirect gently. Always the best course of action :)

Zoloft actually made my mom sick; she suffered nausea and seizures from it. In some individuals, it can cause their sodium levels to dip. Did the symptoms of vomiting etc start after she began taking Zoloft? It can take a few weeks for the side effect to make itself known. Also, it can take a while for someone to adjust to new surroundings. The fact that she can perform all activities of daily living means that a nursing home is a good place for her.

LoLo1169, I can relate to your situation. A Geriatric Psychiatrist is highly recommended! It was one of the best appointments I ever made for my Mom. I've gone thru what you have will all the medical issues. Every week it was a different problem. Realized it was a way of getting attention. Mom knew if she was "sick", people would respond.
I recently moved my Mom to a dementia unit within a local nursing facility. So far it's working well.
Keep us posted!

My DH is on Zoloft too - but not every medicine is a perfect fit for every patient. Call the physician as there are many on the market and it's possible she just needs a different medication.

While Zoloft works for my DH, I personally have trouble with many of the new medications so I now ask for the older ones. We don't know why but things like Z-Pac Antibiotics actually make me sicker and Codeine does nothing for me or to me.

Ask the physician and see if they will recommend and prescribe something different. Also, the Zoloft might be interfering with another medication she takes causing the hypochondria. On it's own, hypochondria isn't that terrible - but it is if she's making herself sick enough to be vomiting.

Haven't read everyone's answers but here's something I learned. There are facilities out there that have an assisted living section and a nursing home section. When the person declines to the point of needing a nursing home, they simply switch wings but are less uprooted than completely moving. If you do end up moving her, perhaps look for a facility like that so it will be the last time.

My dad was able to stay in assisted living because he had a daily sitter 7am-7pm every day. The cost was roughly equal to what a nursing home would cost, but he was more engaged with activities, meals etc. because he had a helper to encourage him. It certainly made things easier for me as well.

Have you considered hiring a private companion / caregiver for her part time to help with distracting her from the things that bother her. From your description, she is still good with her ADL's. Sometimes, in an ALF, it can get lonely, or they tend to isolate themselves. But having someone be there as a companion might get her mind off things, do things together, etc.

I’m sorry, because I know this is a serious post, but it’s amusing me that so many caregivers are chiming in on the bowel issue. OMG, if my mother tells me again, in great detail, how she evacuates her bowels I think I’ll scream!!!! (I know she will, it’s one of her favorite topics!)

Yes, please let us know. And make sure someone checks her for a UTI, which can cause psychiatric symptoms in the elderly.

LoLo, wishing the best for you and her! Please update us on how the geriatric psychiatrist appt. went.