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I’m worried about placing my loved one who needs assistance with everything. Getting to the restroom to be changed, finding teeth, washing hands, where to go to eat, etc. After 5 yrs of constant assistance at home, I’m not sure how this transition will be. It’s like you're the person's shadow when it requires this level of care. Has anyone had success if there are facilities that can do this?

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Professional staff in those facilities, do the same job you did, but in a more efficient and expedite manner. Obviously they don't spoil anyone.
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It was my experience that memory care provided the basics. About one hour of additional, daily, one on one care filled the gaps and kept an eye on things.
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Memory care facilities are skilled at providing this type of care. The staff keep the residents on a consistent schedule with simplified settings. Staff keep the neediest clients in "line-of-sight" areas of the facility when they are awake.
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Agree with OP-s. My sister was in 3 nursing homes-only in the very beginning of the first community did anyone do anything extra to help my sister-she could not find her way around, she could not use the TV or the phone, she kept losing her glasses, keys, you name it. Even after she was injured several times-falling out of bed, throwing herself on the floor-is what i was told-while knowing sis did not have the strength to do that by herself-took me 6 months of digging and searching for new placement. I could not bring her home-i knew i could not handle/cope/disrupt my own family trying to give sis 24 hour care/supervision-to get her to take meds, not try to escape, not freak out because she did not know my family anymore.

My parents have 24 hour home care due to my dad's issues. The aides do not really do 12 hours of activities or patient care. One caregiver does some extra. the other ladies only the bare bare minimum-some falling asleep in the chair-which happened a few times when i went to parents house to collect the bills- or spending nearly all day messing on their phone while they should be doing laundry, clean the bathroom, change the sheets. The regular ladies do not really even try to "act" like they are working when I turn up. Complaints do occur to the agency but does not seem to change things in a lasting kind of way. I refuse to manage the caregivers or the company. We tried another agency but they were even worse. Maybe and only maybe if you hired an extra attendant just to provide companionship, washing hands, clean outfit, pair of shoes that belong to the resident etc-basically what I did when I went to visit my sister-trying to pick up the slack/neglect however you choose to view the multitude of things not done most of the time-this was pre-covid too. Community care or agency care are unlikely to meet your expectations-just my opinion based on my own experiences in both types of caregiving.
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Dementia is incurable and progressive. After patients reach the last stage, their death is close by.. They are actually dead long brfore they stop breathing. A very expensive one to one care program may probably prolong their breathing just a few more weeks. Is it worth it?
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CaregiverL Mar 2022
No not worth it. Quality of life for an elderly dementia patient sucks & for the caregiver daughter…which describes my mother &,me.
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There are three shifts in Long Term Care facilities. The morning shift usually starts at 7:00 am and ends at 3:00 pm or 4:00 pm depending upon the facility. The next shift will start at 3:00 pm and ends at 11:00 pm. The nightshift comes in around 11:00 pm and end at 7:00 pm. During each shift CNAs are assigned a number or patients. There are registered nurses and LPN's that are on the floor. So, if anything happens, they are in charge. Medication is given at the appointed time. Each resident is assisted to the restroom every two hours if they are still mobile, and briefs are check for soiling and wetting. Breakfast, lunch and dinner is served.
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Why are you going with Skilled Nursing rather than Memory Care?
Is there a medical need for SNF?
Granted in Memory Care or SNF the person is not going to get the level of care they would at home with 1 or 2 caregivers. It is just not possible.
At home you may shower or give your LO a bath daily, or every other day. In a facility that is not possible and not necessary. (check your state code as to how often it is mandated, in Illinois 2 times a week is the requirement)
At home a change of soiled briefs can be done almost immediately, in a facility that may not happen.
If a male, he may not get shaved daily.
Some states now prohibit CNA's from cutting fingernails so that will not happen often, maybe when a podiatrist comes and cuts toenails they might do fingers, or it might be done in the "salon" (again check state codes)

The transition will probably be more difficult for you than your loved one.
think to the WHY's are you deciding on placing your LO in SNF or MC.
Is it because you don't love them any more? Of course not. It is because you love them.
You want them safe.
You can no longer do the job safely, your LO needs more care than you can safely do at home.
Let the staff do their job.
Your job changes. you are no longer going to be a "hands on caregiver" you are going to Manage Care. You still need to be vigilant, you still need to be their voice.
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Nokonoko Mar 2022
I assume it has to do with price. Many cannot afford Memory Care.
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Visit the facility and talk to the head nurse. She will tell you how "medically" physically they will "manage"
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Familyfour: If you're expecting your LO to get one-on-one care in a nursing home, that typically does not happen. However, the alternate is you continuing to care for your LO at home and the exhausting measures that come with that. At some point, your health may wane if you attempt to keep this up. As five years is a long time to keep up that pace, perhaps the nursing home is the better option where this individual WILL get care.
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My mother is in a nursing facility and needs help with everything. She even needs a lift to get out of bed. I have no expectation that she gets her needs meet 100% of the time in the way she would if she had her own carer. However, I do know that she has all the medical care she needs, social interaction, and help with her ADL's.

If I wanted to provide the same level of support I would need to move, invest in a significant amount of medical equipment, quit my job which would significantly impact my financial future, not provide my own kids with the support they need, give up vacations and destroy my relationship with my husband. If I wanted to provide a level of support where her needs were met 100% of the time in a timely manner, I would need to add the loss of my sanity to that list.

Even if providing care at home, many people don't get all of their needs met as it is so difficult to deliver that level of care! In reality, this expectation is unrealistic and results in extreme stress, guilt, and anger.

I am grateful that my mother is in a facility as it allows me to live my life while ensuring she is safe and cared for. Every person I have met is very kind and my mother seems happy. It is outrageously expensive and I know that it isn't the same level of care she had when my Dad was providing 24-hour care, but I also know it is the only option if I want a life.
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BurntCaregiver Mar 2022
You make excellent points, Mountaingyrl. It's not realistic for most people to quit their jobs to become round-the-clock caregivers to an elderly person. Most people cannot quit their jobs when they have a baby to stay at home and care for it.
I've been hired onto care assignments where an elder's family was keeping them at home when they would have been far better off in a nursing home.
I distinctly remember one case I has for a woman who was 93 years old. She lived alone in the first-floor apartment of her house and her son lived has the second-floor apartment.
I was hired for two hours in the mornings and one hour in the evenings five days a week. Her son worked all day and was never there when I was. I'd get there, she would still be bed and everything would be soaked through with urine. I'd get her up, washed, dressed, and fed. Then it was to the chair in the living room to watch tv. There was a small cooler left next to her chair with drinks and food for her to have during the day.
I'd come back in the evening for my one hour and she would still be sitting exactly where I left her. Only now her diaper would be loaded. There would also be a covered plate on the kitchen table with supper that her DIL would leave every day. I'd clean her up and bring her the plate. What a life. She would have been better off in a nursing home.
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They set them up around the nurse's station with the tv on.
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@Nokonoko

You ask how we change the system of care. Here's how. Nursing homes and care facilities are allowed to charge whatever they want. The sky's the limit with these places.
If they are forced to treat their help better, they will. If they are forced to clean up their acts and business practices, they will.
If Medicaid refuses to pay unless they meet the standards they could set for them, they would meet those standards.
All nursing homes, MC, assisted living, hospitals, clinics, and homecare agencies should be non-profits. No shareholders they have to make and keep rich and no out-of-control salaries that have to be paid. Watch how fast patient and resident care improves.
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PeggySue2020 Mar 2022
You’re never going to get the government to pay more than what it is, tho. As it is, there’s near unlimited money and priorities toward the latest new so-called curative treatments, operations, all designed to get the elder to live to the point where a nh becomes their eventual option. Hard choices must be made and in this case I say less medical heroics.
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I'm going to tell you plainly and honestly here. There is no nursing home the world over where your grandmother or any other resident is going to have a CNA keeping a constant eye on her. That is not how life and care work in a nursing home. No one is going to be her "shadow" there next to her every second of the day to serve her every need and anticipate possible future needs and take care of them in advance.
She will get this from you. She will not get this in a nursing home.
After your grandmother is placed the facility will probably ask you not to visit for a couple of weeks. This is so grandmother can get acclimated to her new surroundings. Do what they say.
Also be prepared that things will be different. You will likely see her at times wearing another resident's clothes. This happens often in nursing homes and MC. It doesn't mean she isn't getting care. Teeth and eyeglasses go missing all the time too. Other residents take them. The patient themselves lose them too.
Nobody is going to style her hair, or put on make-up, or paint her nails. Don't be alarmed.
Here's what to look for when you visit. If she appears clean and her hair and clothes are then she's being decently cared for. Take her into the bathroom to use the toilet and have a look at her bottom and surrounding areas. If you don't see any rashes, redness, or skin blanching then she is being changed and toileted regularly and they're keeping up on her hygiene.
This is what to look for when a person with dementia gets placed.
She will not have her own private aide who works only for her. If you want that, keep her home and hire private-pay caregivers 24 hours a day. Look for what I told you after she's there and that's how to tell if she's getting good care in a facility.
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poodledoodle Mar 2022
Thanks for the warnings!!

Poodle
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I have said before on this forum and I will reiterate: memory care facilities and nursing homes are there to make money. A carer can be assigned to look after 10-12 patients a day, so there is no way your loved one can get 1-on-1 care. You’d need to hire outside help for that. The total cost for paying MC/NH and private carers will be extremely high. When you run out of money, your loved one has to leave the facility. Back to square one without money. Yes, you can get on Medicaid but how many facilities accept Medicaid, are up to date on their cleanliness, or have bed availability?

I care for my husband at home because of the reasons above. Cheaper with 1-on-1 care. 1-on-1 is not the same as 24-hr care because there are times when your loved ones don’t need help (sleeping, e.g.). I am tired but it is comforting to know he is well-cared for.
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If you are worried about one-to-one care then best quit your job and become a full time caregiver. You will not get the level of care you are expected anywhere, even in higher end private facilities trust me I know we looked into that option for my sister. Upscale ones where the cost is upwards of 20k, our family still would have had to pay privately for a one-to-one.

It was cheaper to keep sis home and just hire a private aides.
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Memory care PLUS daily visits and a camera (if allowed) . Cultivate relationship with staff and know their names and shifts. Document and photograph any problems mostly for primary cate provider to alert for any health developments. Prepare for the point of “refusing food and care”. Consider medication alternatives. Pack a “go bag” for the ER for eventual falls. Visit skilled nursing facilities in the area BEFORE your LO might need one.
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In a facility, the care to individual patients is reduced according to the number of residents. It's simple arithmetics. Someone with advance dementia would certainly benefit from a one to one caregiver, but this is impossible and unrealistic. After all, what kind of life is that of someone with an advance dementia? What would be the benefit of gaining a few months of a horrible "life"? For all practical purposes, a person with a profound dementia is already dead. It won't matter whether he/she is still breathing.
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Nokonoko Mar 2022
One-to-one care is extremely beneficial for any stage of dementia. I would even argue it is best at the early and middle stages especially if it is with a caregiver the person likes and can actively be kept engaged. In truth I personally feel the isolation, loneliness and how one handles those two determines how someone does in a SNF.

Though as you said it is unrealistic.
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My mom needed that kind of care. She was independent in walking but advanced dementia (can't dress herself, needs directions to find the bathroom, no sense of time, can talk but not coherently express any needs. If a memory care unit has 15 people they have 2 staff on and a med tech if you are lucky. My mom's unit was an upscale boutique facility with 9 residents (15 max) and she had 9 falls, bathroom accidents daily, wasn't given fluids (because she couldn't ask), and she was anxious and afraid all the time because no one was there to help her navigate her time and space. It is IMPOSSIBLE no matter what any facility tells you to have 2 workers on for 15 + memory care residents who all have varying needs for care, meds, food, activities, etc. I had cameras in my moms room (approved) and what I saw was absolutely horrific. My moms loneliness and isolation was painful as were many's during covid. She had times that she fell and hours went by before someone checked on her. I believe that anyone with a loved one in memory no matter what the facility is telling you, they can't provide adequate care and you should have a camera. Your loved one needs an advocate when they have dementia and you cannot rely on the facility to know what is going on with them accurately. It is sad, but it is the reality of the system that is broken and needs more regulation.
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Nokonoko Mar 2022
How do you suppose they change this system? Give family caregivers a 6 figure salary to care for a LO? Pay all staff six figures so more people are willing to do the job?

The system is the way it is because we do not have the means to meet the demand, and it is not like caregiving is a job people line up to do.
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My mom is aware but forgetful. She doesn’t do self care (showering, brushing teeth). After finding out that the extra money I was paying for her to have more assistance (showering, escorting to meals, lotions applied for her skin) AND she was refusing those services, I got her a daily carer that I hired privately. She bonded with the 5 day a week lady and puts up with the 2 day a week lady. Both are wonderfully kind to mom. I have them work 2-6 p.m. so she can get exercise walks, go to events, get showers, watch tv and escorted to dinner. Breakfast and lunch I have delivered to her apartment. Mom can get around, loves her bed so the afternoon caregiving works the best for her. At this point, I am paying about the same amount monthly that I would pay if she was in memory care. If she ends up in memory care (due to falling risk mostly-where she is checked hourly), I will still have the caregiver come in-maybe not daily but at least 3 days a week. The personal care has helped mom so much and she cannot refuse because I am the hirer. I was terribly disappointed to find that even though I was paying for additional care through the facility, the facility did not inform me when mom refused care EVEN though I had documented doctor notes that she is unable to make decisions. I felt robbed! I was in contact with the facility often and no one told me of mom refusing and mom sure didn’t tell me. That is the crazy thing about dementia-at some level they know how to be sneaky. ;) I am glad you asked this question because I am learning from the answers. Thank you.
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Countrymouse Mar 2022
[At some level they know whether they want to shower or not, too.]

It's a tribute to the private caregivers that both succeed in persuading your mother to co-operate with showering and personal care, and I expect it's also because they have more (i.e. enough) time and know her individual routines - the right towel in the right place, the right water temperature, the signs that she is ready to begin so that she doesn't feel rushed into it. Your mother CAN refuse, whoever is paying for the services, and if she does and they can't coax her then they mustn't try to force her.

But the facility was very naughty not to tell you that your mother was declining care. How long did they let that go on before you found out about it?
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IMO a MC is just a step up from AL. There ratio of aides to residents is only slightly better. They are changed on schedule or when they smell. Its very disciplined. Morning shift, up toileted, teeth brushed or put in, dressed and taken to the dining room. And Mom is not the only resident a particular aide has. Like said, most residents are kept in a common area where they eat and have activities. Taken outside when the weather is nice. Those who are bedridden get brought out for some social time. I had no problem in the care Mom received. She seemed as happy as she was able to be. I also had a daughter who worked Nursing facilities that told me what to expect.
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If you are expecting your LO to get one on one attention 24/7 in any managed care facility, you have unrealistic expectations, period. Keep your LO home if you want them to get 'constant assistance' and to be shadowed at all times, to your own detriment and expense, of course. That's the trade off.

My mother lived in Memory Care AL for nearly 3 years where she got an excellent level of care by truly devoted caregivers who loved her. Did they wait on her hand & foot 24/7? Of course not. Which is not to say that her needs weren't met, that she wasn't toileted when she needed to be, and that her social needs weren't seen to and exceeded, actually. They were. Her MC had no more than 23 residents at any given time, and the CG to resident ratio was 5:1, which meant the caregivers were able TO give the residents great attention. My mother was a gigantic handful, too, requiring a LOT of care which she did get. She was incontinent, wheelchair bound, fell 55x in under 3 years, needed help with ALL ADLs, etc., and she was helped with everything at all times. She fell b/c she forgot she couldn't walk, which nobody can prevent from happening; whether it's at home or in managed care.

So do your homework if you want your LO in managed care. Find a SNF or an Memory Care AL that has great reviews, a good caregiver to resident ratio, is clean and well organized, and then be your LOs advocate all the time. Be there to check up on them and to make sure the facility is giving them good care.

Best of luck!
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geddyupgo Mar 2022
Agree with everything lealonnie1 has said. There are facilities that are crap and there are facilities that do a wonderful job! They may all be strained right now due to a lack of staff (the CNAs that are changing Mom's underwear and cleaning her while they take another resident's verbal abuse are the lowest paid people in the healthcare industry) And remember, they are taking care of a lot of Moms' not just yours. Also in some states, MC's are not allowed to keep residents that requirement assistance in all ADLs or whose incontinence can't be successfully managed with incontinence practice so it will pay to know your states rulings for the various healthcare facilities in your state. When you do find one you like and have placed your LO there, make friends with the staff. I mean really show them you are interested in them as a people not just the folks who are caring for you LO. Do they have children? Ask about their kids. You want to be the person the staff is happy to see visiting, not the one that makes them go "oh no! Here comes the princess to find fault again". And no.... it is not going to be like when you have your LO at home and you are "velcroed" to them. You would need to pay extra for 1 on 1 care and even that doesn't always work as that caregiver has to go to the bathroom or take a break sometime. I swear we had one resident who looked like he was soundly sleeping but the minute that nurse got out of her chair to go to the restroom, he was up like a flash (we couldn't get him to move that well during activities) getting into trouble and falling over. He was a scamp!!
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I moved my father to a nursing home a week ago with the same concerns. His wife has been caring for him at his immediate beck and call for the last few years as well. He is mentally aware of what is happening and can communicate somewhat effectively. It has been quite an adjustment for him. He has a button on a lanyard that he pushes for assistance. They do not come immediately, although within minutes. He was able to transfer to the bathroom with a walker a couple of months ago but now he cannot make the five feet in his room by himself. So he is calling them often. I don't know how he will be cared for when he can no longer push the button, I assume he will be bedbound and diaper dependent at that point and they will attend to him on a schedule, or maybe hospice services can be brought in that involves more aide time.
My father is an ill tempered man who would not thrive in memory care, he is content to sit in front of the tv in his room and take his meals there, just as he has at home for the last several years, albeit with much better service.
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JoAnn29 Mar 2022
Hospice does not always give more aide time. It is determined by how many aides they have. In my area with home care its 3x a week maybe an hour at a time. You need to request more time if you need to run to the store or to an appt if person cannot be left alone. One OP did post her LO got 4 hrs.
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You place them in a memory care, not a nursing home (skilled nursing or assisted Living).

My mom's place had great systems in place. There were two levels of care -- though all were there for memory care -- and those who could dress themselves or use the bathroom on their own were supervised as needed, but those who required more help like my mom (incontinent, wheelchair-bound, mostly blind, stone deaf, crabby) were handled by a couple of caregivers in the mornings and evenings. Everyone was up, dressed and in the dining room by 7:30, then those who needed bathroom help were taken to the bathroom or changed on two-hour schedules.

Everyone spent most of the day in the common room doing activities under supervision, and those who could take themselves to and from their rooms were free to do so to take a nap or watch TV, etc. They were checked on by their assigned caregivers if they were gone for more than a half-hour or so.

I'd advise you to ask the places you're considering what a typical day is like. They should have their activities on their website, so look it up and see what they do all day. Obviously take a tour, too. Avoid places that park residents in front of the TV for hours at a time, and if possible, find ones that have multiple levels of care. You don't want someone with mild dementia being forced to hang out with those who are barely cognitive. My mom's place had a huge common room, and one side was used by those who needed the most help (lots of music therapy there and caregivers talking to them) and one was for those who could play bingo and trivia games and move around better. The TV was turned on for 30 minutes after dinner, and then the bedtime routine started. Everyone was ready for bed by 8:45.

My mom did better in the memory care than she had at home, because there were things to see and hear and do. People always talked to her when they walked by, and she didn't take a nap during the day until the last six months of her life. Before going to the MC she slept around 18 hours a day because she was bored and my dad couldn't engage with her while doing everything else he did to keep the household running.
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LittleOrchid Mar 2022
I agree with you that a person should ask about a typical day. There is no one "typical day" that is right for everyone. What you describe here would have been fine for my mother, if we could have convinced her to to into residential care. For my aunt, though, it would have been absolute torture. She liked to remain in bed, reading, until at least 10:00 in the morning and stay up until midnight. She did go into care in her final months, but she was allowed to remain in her room most of the time. The idea of going into the common room with all the noise and busy-ness was offensive to her. Granted, she did have visitors every day. Some family was there every day visiting her in her room. Once a week she would go to another room in the facility for a Bingo game, but she had spent most of her adult life as a single adult and did not require a lot of social interaction. My mother, on the other hand, had always lived among a crowd of people and liked a bit of regimentation. Arising early, spending the day doing things with others would have suited her to a T. I think it could be tricky figuring out what might be better for those whose tastes lie somewhere in between, but it would be crucial to consider this aspect of the LO's personality and how they would fit in to the social structures of a care facility.
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Generally aides get to know a resident and their needs and behaviors. They often group them together to offer them a form of socialization and during meal times. Just about everyone in a SN facility requires alot of care. The residents do form a pattern of behavior and each day is often the same. My mother is bedridden so she is almost always in her room either in bed or a recliner. Before she became worse but still could only be in a wheelchair she did the same thing which was to wheel herself to the little library the facility has. Each time I visit I generally see the same resident in the same place or area. There is also a routine that starts and ends the day. While it can be sad to witness general decline amongst those there the reality is that their world has a familiar pattern and they seem accepting of it. I would have to say there is little choice as to behaviors due to their overall mental and physical limitations. If you visit some you can always speak to a nurse who is in charge that given day and discuss your relatives daily situation. While it is difficult to often go there and witness what we do I think we have to realize that is from our perspective and the resident is in a very different mental and physical state.
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KaleyBug Mar 2022
Sadly they also decline quickly due to the lack of needs being met on a timely basis.
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In my short /new experience, they get attention for a few minutes, a few times a day; not nearly enough. A big disappointment for me; I guess I was naive. Maybe not all care homes are the same though - some perhaps have more staff or time.
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KaleyBug Mar 2022
They are all the same we had experience with the expensive ones and the middle road ones when mom was in them for impatient rehab after injuries. The most expensive had the least assistance we were surprised and paid someone to be there when we could not.
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Well I mean they do not be able to watch them 100% of the time that is impossible unless you pay for 1 to 1 out of pocket.
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