Assisted living wants us to move our sister to memory care or hire a 24-hour sitter. I’m very distressed about this. Any thoughts?

We moved my mom from AL to Memory care, it was emotionally difficult, but a good move for all. Better staff to resident ratio. The care she receives is wonderful. Fortunately, we were able to get her assistance from the V A, it helps to offset a small bit of the cost.

I can’t thank you all enough for sharing your experiences with me. Your insight has helped a lot.
My sister is the oldest of 8 children and we all want only the very best for her. It has been heartbreaking and such a roller coaster ride. I have wondered so often in the past 2 months if I made the right decision, agreeing to move her to AL. I often “feel” that I failed her. It has been even more heartbreaking because our family has been divided into 2 camps. But, unfortunately, the camp that wanted her to “stay home” hasn’t been able to visit her much in the past year or provide much of her care. They can’t accept that the move to AL couldn’t be avoided by finding someone we could trust to live with her.
Each day has been an emotional challenge. Yesterday, I took her on our first “outing” together to see our brother. Went great until I took her back to AL - when she became quite angry. Tonight, she was cheerful and called to say that she had been chit-chatting with one of the AL residents in their room. Oh my- my first thought was, “They can’t move her to MC - she is showing signs of being able to make friends in AL! She just needs more time to adjust.”
But your input helped me return to reality that, based on ALL her behaviors, she needs more care and safety than AL can provide.
Thank you. I am praying that she doesn’t freak out when moved and that she can actually thrive in MC as one of you experienced with your loved one. And that both I and my family members can accept seeing her in the MC environment.

Anastasia, on the cost of dementia villages, dementia friendly communities, whatever they get called...

It's one of the factors you need to be very disciplined about when you're doing your research. And not just because of the price itself, but because some organisations are more helpfully honest and straightforward than others about what costs a person is *likely* to incur.

It's not all gloom. I've just been looking at a place in Central Florida whose website was a very pleasant surprise. I went to FAQ thinking "I bet they pretend that nobody ever asks about money, the rat-bags..." but no, I had to take it straight back - $$$ was the first subject they dealt with, and in plain English.

But the other thing you need to be just as careful about is whether you're looking at a dementia village, in the vocation's meaning of the term; or a dementia village, in a marketing professional's use of the term. It never takes very long for marketing departments to latch on to exciting key words and there is nothing to stop them abusing them, sadly.

Residents who become confused and wander can create a very dangerous situation.... options to consider.... definitely consult with her doctor and discover any medical/medication options; does her current facility have "Wander Guard" or similar?- it is a transmitter on the resident and it triggers an alarm at facility exit doors if they get close or pass through; perhaps there might be a smaller "board and care home" that would better meet her needs.... ??

I’m an independent caregiver (CNA) I specialize in Dementia. If you’re in the Henderson, NV area I could possibly help out.

if you hired 24/7 sitters what would they do if your sister, started to wander? My girlfriend's husband started hitting and pushing her. He wanted out and she couldn't stop him. When the cops came he ran to them to help him get away from her. He had to go into a lockdown facility. It was a beautiful place, with flowers, sidewalks, doors unlocked during the day. Also, it had double fencing with the top of the fence curved inward so no one could escape. They took very good care of him there.

I just went though a very closely resembling thing with my Mother. She was wandering, trying to get out and wanting to go home. To me it was a relief when the ALF insisted on moving her to MC. I was so afraid of her wandering off. She had managed to get out a couple times and they caught her. The change for her since going to MC has been the best thing that could happen to her. I didn't tell her it is MC, just that they needed the room she was in for someone else. Her personality has completely changed. She gets so much more attention and they keep her busy with activities so the wandering has stopped. She was fixated on finding my younger sister and thought she was just a small child before the move. Now she hardly mentions her and when she does it is about her as the adult she now is. We still deal with the wanting to go home but are able to just change the subject or redirect and off we go. My visits to her are actually enjoyable now. My Mom has dementia but is very with it and would probably be upset if she knew this was MC and locked but that just hasn't been an issue, she is way to busy.
I was worried about how she would relate to the other people on the MC unit, but that just hasn't been an issue either. Most everyone there is close to her same functioning level and those that are worse she just mother hens.

We went through this with my MIL,, and the sitters are expensive indeed, and mostly sat away from her and played on their phones.. No way to catch her if she fell, called other staff is she wandered. She was so much more protected at the MC

Many elders with dementia want to "go home." However, the progression of the illness does not make it possible. I'm sorry that you're so distraught and will ask God to lift your burden.

Your sister needs more care and will need even more in future, When people have dementia or other conditions that prevent them from making good decisions for themselves, you have to make those decisions for them, "Needs" (safety) have to come before "wants" Once you accept that this is the best for her, even if you feel she may not like it, it will be easier for you to do what is right for her. As with a child, the person responsible for them considers what is best, before what they want.

I went through this with my mother - also very intelligent but with early vascular dementia and paranoia. What she wanted was not what was best for her, She was moved from a 2 bedroom apartment to a small room where there was adequate staff and care for her need, and then again a year ago to an NH where there is more care. There is no question in my kind that these moves were needed for her welfare. Initially she didn't like it but she adjusted.

Note -it was not easy for me either nor is it for any of us going through these transitions. I hated packing up my mother's beautiful 2 bedroom apartment knowing that that was the end of that lifestyle for her. But, at the same time, I knew it was necessary. It is just the way it goes for many as they decline. The most fortunate ones, like my grandfather, go to bed at age 82 after a day working outdoors with his son, and never wake up.

We just went through this with our Mom. We only had 1 day to move her from assisted living as she had been found wandering also. Her dementia is not severe at this point, and we were afraid she would freak out. But we sat down with her and explained that we were moving her to a new place where she would get more care and attention. Amazingly she said "that takes a load off my mind, that will be wonderful." And she has thrived and greatly improved in that environment and we feel less anxious about her well-being and the fact she is now in a safe place.

No matter where you put your sister she isn’t going to be happy with it since it is not her “home” and even if it were, it may not be the “home” she was remembering. The important thing is by moving her to the memory care unit is that she will be safe and not be able to wander off. So many dementia patients die because they wander off and aren’t found until it is too late. I care for my father and have put locks on all of the yard gates so he can’t get out but I still worry that he will. Now that winter is coming doorknob covers will be put on so he can’t get out or a lock placed where he can’t see it. These are the things a memory care unit take care of so your sister remains safe.

I couldn't possibly out it any better than AnnReid and others below but just wanted to add; First remember she isn't necessarily responding the way you think, I mean her mind isn't working the same so she may not be any less happy in MC than you think she is in AL. Wanting to "go home" isn't always back to the house and living situation she came from. Also given that she just moved to AL 2 months ago this might be a better time to move her to MC or wherever she will go, it seems to me it will be much easier on her to make one adjustment, get to know one place/room rather than 2. Last but not least, I think as much as their brains are failing them they also protect them, once dementia and Alzheimer patients get to a certain point, when their short term memory and recognition starts sliding significantly they can't hold on to the same feelings as we are used to. She may not remember being upset with you over it or remember being in AL once moved to MC, she may remember "home" but that might be her childhood home even and any sense of when she was moved to where she is now or what she "lost" moving there just isn't as constantly haunting her as it feels to you. Likely if it was necessary to move her to AL and the experts feel it's really necessary she be in MC she isn't remembering all of this or thinking about it being the end of her life in the way we automatically assume, her brain just isn't the same brain you grew up with and in many ways that's a good thing because she isn't as aware, suffering or embarrassed the way the person you grew up with would be and she isn't remembering this as part of her life. Not sure I'm explaining that well but basically her "broken brain" is also protecting her from being as aware of herself.

I had to make this decision twice for my mother and grandmother. When I made this decision for my mother my grandmother was the one who told me. My mother was to much for me to take care of so it was okay. She also told me if she got to that point she will okay going into a extended care facility like my mother. Of course she does not remember telling me that and ask to go home. It is best for her
my grandmother got out her bed and was walking in the hallway at midnight. They was able to get her back to her room.

As she declines she will need more help. She will need more supervision.
The saying that she "wants to go home" is common and often does not mean "home" it means she wants to go to a time when she was well and felt safe.
I think with a Memory Care Unit she will feel more insulated. She will not have a huge building to wander, to get lost in, she will see the same people every day. She will get to know the halls and the people and this will begin to feel comforting and she will get to know the people that are in that unit and the people will get to know her and her "quirks".
What may seem like confinement to you may not to her. As difficult as it is to accept this will continue to decline and she will need the more insulated life in Memory Care, with people that are used to working with "broken brains"
Keep in mind that when you see a small room that is all you see, what she will see and get to know will be "her" space and she will get to know and be able to remember all of it, where the bathroom is, where the light switch is, where her dresser is.....Large spaces get confusing it takes a lot of time to commit things to memory when your memory is not working.

Clearly, her level of health has declined. As a result, she needs to be moved to a higher level of care. It is in her best interests to do this.

Your sister is probably too much care for AL. It's a difficult decision, but it sounds like the right one. Are there other MC facilities where you live? -- You could move her to a different facility.

People with advanced dementia - those who are wandering and having other safety issues - should be living somewhere that can keep them safe. Specialized communities are being designed and built for people with dementia where they can live safely and with dignity. Look up "dementia village".

After working with dementia residents for 8 years, that is the next step, especially if they are confused and wondering. When the dementia is mild and can be handled, they will often be allowed in AL for a short time but dementia gets worse, not better and eventually the smaller home environment with their own living room, dining room and bedroom right together works better because they cannot find their way around on their own and they get confused more and scared.

I very much agree with getting an evaluation by a geriatric psychiatrist to see if her paranoia and agitation can be treated. If meds help, you then need a thorough needs assessment to see what level of care is best for her, going forward.

You have stated that your sister has been placed in a “reputable” facility, and you have stated several reasons why her family, as loving caregivers, felt that her placement there was necessary.
In a situation almost exactly the same as yours, a psychiatric evaluation by a well trained geriatric professional revealed symptoms of cognitive loss in our LO that we, as family, had not even considered when she was placed in the facility in which she now resides. A recommendation of a very modest dose of a calming medication proved extremely helpful to her.
Her process to the Memory Care floor was so much like your sister’s that the comparison is almost shocking, and our fears were virtually the same as your fears.
My relative had a significant fall history, was a bright, well loved and respected member of the community, began having significant issues while at home with memory loss, paranoia, wandering, severe confusion......
We actually had suggested that we would responsible for hiring a 24/7 aide to shadow her in an area of the residence that was less restricted, but after thorough consideration of all alternatives, had to agree with her truly compassionate caregivers that a “restricted”, locked floor was the best option to provide for her comfort, and most important, her safety.
As to being “very unhappy” it has been my observation that there were indications through my LO’s long life that she was not a particularly “happy” person. Family members visit her at least every other day, and her demeanor, if considered as objectively as possible, is fairly close to about what it was when she was home.
She has some very sad incidents with me, as I believe she and I share one of the last links to her earlier life. This past Saturday she was VERY angry that I refused to “take her home”, but even in her anger, she acknowledged that she wished me no harm for perpetuating her discomfort. When this happens, I have come to learn that she will have forgotten all about such incidents by the time I next visit her.
So a couple things about your observations about your sister- whether other residents communicate or not, dementia is so difficult to predict that your sister may not care at all that some or all of her fellow residents are non-verbal. My LO views the idiosyncratic behavior she sometimes sees with bemused disinterest.
Try to consider the fact that what you are thinking she will think may not be how she actually responds, especially since you can observe deterioration in her overall mental circumstances. Always bear in mind that at this point, her safety is paramount. Painful falls that were weathered in a previous stage of life may now become devastating.
If you have confidence in the staff who are responsible for her care, consider their input and work with them to support what may not be able to make her happy, but may be able to keep her at the best level of health and welfare possible for her unique circumstances.
Being “distraught” is a fact of life for loving caregivers. I wish with all my heart I could tell you something different from that, but I sometimes feel as though I wish I could give her back the mind she’s losing, and knowing that I can’t causes me Indescribable distress.
If we truly love them, we continue to make the terrible, impossible-to-make decisions, hope those decisions are the best to which we have access, and continue to love them at every moment we are with them.
Sending you positive thoughts and courage.

The Memory Care unit the ALF is proposing is part of their own facility, is it? - also run by them?

Don't feel restricted to that choice. Looking at a website called www.alzheimers.net I can see that there are many specialist dementia care providers in Virginia; and given the range of mental function that your sister retains she may do better - by which I mean be happier and better supported - in a dedicated environment.

The thing is. In a standard facility, even a good one, that offers continuing care, dementia is treated as a regrettable progression. In a specialist facility, living well with dementia is what they're *for*. There can be a completely different approach and different mindset. Your sister, being aware, might be their ideal kind of resident.

I don't want to raise false hopes and I admit I have no idea of what the state-of-the-art is like in Virginia, but I do urge you to keep looking.

Very seldom are residents of these facilities happy to be there. They all beg to “go home”. In my mother’s case, “home” was with her mother and father back in the 1920’s

I believe that, for your sister, you need to look at the big picture. She has dementia and paranoia, and unfortunately this only gets worse with time. Sadly, she will eventually come to the point that she will not know where she is st. However, if she is in the locked unit, she will be safe. These units have smaller resident populations and more staff to care for them.

Facilities do not suggest that a resident be transferred to a locked unit without good reason. My mom was angry as well when we made the decision to move her, bit like your sister, she was angry from the day she realized she was in a facility. This is difficult on everyone involved. Reassure her there is no reason for her to be embarrassed. The staff is used to dealing with these emotions and they will help her get through it.

There is another thread running on this site at present about whether or not people with elders in a Nursing Home are happy with the idea that residents often sit near the Nurses Station. My own post was that it lets the residents watch the staff, and also lets the staff keep an eye on the residents – that it was more reasonable that a 24/7 sitter. Would your sister be more tolerant of a NH like this? It is not as restrictive as Memory Care, as well as probably more affordable then either.