How do they justify putting people of different levels of dementia into stagnant memory care?
In our pursuit to find the right care for mom, we have been offered or have had suggested to us everything from independent living to memory care. Of all of the memory care facilities I have toured, I have only seen one able bodied person and he seemed so sadly out of place. What can the company of debilitated non-responsive people offer an able bodied verbal man? What benefit is it for someone like him to be in a place where people can't even feed themselves? I don't mean to be cruel, but in looking for a right fit for my mom, I haven't seen a memory care unit I would put her in. She has dementia and hallucinations, but can carry on conversation, care for her physical needs, and likes companionship. She cares about people and life. It seems every other place has a different criteria for semi assisted, assisted living, and memory care. There seems to be a huge lack of stimulating active care for memory patients. And why do they only get a room? Many like my mom I'm sure would benefit from a little apaprtment. What am I missing in these scenarios? I see a huge gap in the types of care for people with different levels of dementia. One place didn't have an AL apartment available, but said they could put mom in memory care for a while until AL had an opening. How is that thinking of her needs as a patient? Isn't the transition hard enough without making the wrong move just to then move again? I just can't see her living with no conversation, no activity past coloring, and with patients who can't even hold a pencil. I think she would get worse quick! What's out there for people in early to moderate dementia that still have abilities?
I also toured a few facilities. One had a bunch of poor souls sitting at the tables in bibs drooling all over themselves, needing to be fed. I would guess all of them were in late stage 6 or early stage 7 Alzheimer's. At that time, my mom was in mid stage 5. There is a huge difference in capabilities between these stages. I wound up not picking this particular facility because of the difference. I found a facility with a variety of levels of dementia that suited both of better.
Within one and a half years, my mother has gone from mid stage 5 to beginning stage 7. She went from walking with a cane to walking with a walker to walking with the walker with my arms under her armpits. She went from feeding herself to having food cut up to needing to be fed after she tries the first few bites and then forgets. She went from being independent in toilet hygiene to needing complete assistance (for cleanliness and to prevent more bladder infections). Previously she could stay awake most of the day and now is sleeping most of the day. She never had hallucinations, delusions or obsessions but now she has all three. She is unable to do anything for herself in the course of 1-1/2 years. She now lives with us because the rent kept going up and her Social Security didn't. Also she kept falling (not being watched?) and urinating in peoples rooms (not being taken to the bathroom often enough-she can't sit down and get up by herself).
My husband and I went from being a middle aged couple to the "parents" of a 140 lb. "newborn" with a bad attitude. Most days it's overwhelming.
Of the $1800./mo. she gets from SS and a tiny pension, $400./mo. is spent on a night caregiver to give us 4 nights a week sleep. (We live in Tijuana, Mexico, so it's cheaper), over $100./mo. on diapers, bed pads, sanitary pads, wipes. Then, special soaps, personal supplies, doctor and medication copays and special foods and powders that thicken liquids because she's loosing the ability to swallow. I've needed to purchase onesies so she'll keep her diapers on, bibs so she doesn't stain her clothing, new clothing (I have no idea what kind of contraption the memory care facility used to wash the clothes but most of them are in shreds). After all this, there's darn little money left.
We were hoping to have a caregiver for a few days in the daytime during the week so we can go out together but we'll have to check the budget.
This is an expensive and physically and emotionally draining disease with nothing to show for all the money and hard work. They don't get better, they just get worse and then die a horrible death. I hope and pray that I die well before this disease would overtake me and ruin my family.
I did it, because she was diagnosed with cancer and I knew things would get worse and they have. Now that she is declining mentally and physically, I know I did the right thing.
Things to consider - Pick the place you think mom would like, not your favorite. Do they have activities mom would like (beauty shop, gardening etc). Where my mom attends, even though she is in memory care, they take her over to the assisted living side to participate in activities. I am very grateful for that. She has gone on field trips, bowling the movies.
You can only do the best that you can and when you have done all that you could, there really isn't much more you can do. Mom is about 50 miles away, sometimes the farther from the city, the prices are more reasonable.
Like any business (and these really are just businesses) each will have its own business model, standards, rules, regulations, etc. All you can really do is shop around and find the one that best meets your mom's needs AND satisfies you as well.
When we started, we went to one that was just about to open, and if I recall correctly it was strictly Memory Care (it could have been AL as well). It was the more expensive one, but the good point was that this would be mom's home to the end (the place we chose did say if she regresses enough and needs specialized nursing care, IV feeding or what not, she would need a nursing home). The down side was the rooms were semi-private (no doors between bedrooms and a shared bath) and the ones facing the front of the building looked out over the parking lot and a 4 lane busy roadway! Mom was too "with it" and would be very resistant to sharing a room. Again, I cannot recall, but they may have had private rooms, however those would be even more expensive (the semi was quoted at 8k at the time).
At the second place, not only was it older (not bad, but definitely had seen some years), but the MC section was on the second floor, which would bring up concerns about getting outside once in a while and evacuation (many people we saw in the place had wheelchairs and walkers). It seemed to be on the dark and somewhat dreary side. I was not overly impressed. Another place nearby we did not even consider because it was one of those places that want 100k or more up front and that money does NOT go to offset the monthly fee (since we did not explore this place, and I know places mom had checked out before had this requirement, one has to wonder what do they DO with that money???)
The final place, which is where mom is now, was previously an old person's home, set up with endowments, etc, to provide a place for the elderly. They are non-profit (my brother checked out one in NC where he lives, saying it is only 3k what are these placing charging so much for? In checking it out I found that it was for profit, so the bottom line is $ for investors, which means less goes towards residents AND that 3k was ONLY for the room. All other charges were ala carte - meals, cleaning, personal care, laundry, etc. Online sites for families of residents AND employees were mostly negative!) They decided to tear down the place we ended up with and start over rather than renovate, and opened just in time! They set it up with IL, AL and MC and you could transition as needed when space was available.
Mom was already past the first two (younger brother kept insisting that she would prefer AL rather than be in with a bunch of old farts, but did not understand the difference - no, AL will have MORE in general, as they are older people who have physical needs, such as walkers, wheelchairs, whereas MC is for memory impaired, although some of them also have walkers and wheelchairs - dementia is not age specific - there is a woman in her early 50's there now as well as one who will be 100 soon.) Despite younger brother's insistence, the staff who walked us (mom included) around said no, she needs MC. She ended up being the first (and for a while the only) person in the MC unit. What they did was bring her upstairs (with oversight) to have meals with the AL group and to join in some activities with them. Even after a few more moved in, they did the same (I arrived once and they were upstairs having coffee and snacks in a lovely kitchenette area, big windows letting in lots of light!)
I would think if your mom can handle AL and you like that one place where you will have to start in MC and move, they could do the same with her - just like being on a different floor of a hotel. If she is going daily to a different area for activities, etc, the room move may not be a big issue - it is not like moving from your home to this place, so it would not be as traumatizing. It certainly would not hurt to ask them what they plan to do with her until a space opens up. If she is still functional and non-wandering, it could work. Otherwise you will just have to keep searching until you find the best fit.
The biggest problem in placing people is that everyone IS at a different level at the time they move in AND will be moving through the other levels as time passes, with NO time table to gauge the changes. Not only are people at different levels, but it impacts everyone in their own unique way AND transitions at different times. Our mom can seem okay, until you spend more than a few minutes with her. She still cares for herself and has no walker, but clearly could and cannot do things like financials, cooking, etc., and was a danger to herself (injury just before her move could have ended up killing her, yet she did not get it looked at or let one of us know.) She moved there in January and since has often asked when she can go home to her condo, can she get a ride home, etc. Recently when she called she asked for a ride home because she said was at a hospital she used to use and wasn't sick or anything. Yesterday's visit told me she is moving down a notch because instead of asking about her condo (last residence) and going home to it, she asked for a ride to Nana's, which was her mother (gone almost 40 years ago) and before I left she asked if I had a key to her previous home, which was almost 25 years ago. Her final statement about this was that she would go stay in that place, if she had a key. No mention of the condo, which was her home for the last 23 years!
So, even if you found a place with "higher functioning" dementia residents, there is no guarantee it will remain like that for long. It changes from day to day sometimes. One of the first women who moved in after mom seemed to be about the same level, but yesterday she was really out of it (they said she could not sleep the night before), and the last time we tried to "chat" during a previous visit, I have no idea what she was saying. Another women who came in later than mom and this woman will be 100 in December, yet she seems much more "with it" that the others!!
Rather than focus on who resides there and their lack of abilities, you might want to see how the staff interacts with ALL residents in all care levels. It is more the care they receive than who they reside with, because that can change overnight, whereas the care should be consistent. Mom interacts a bit more with the staff than she does with other residents, from what I have seen. Again, if you did like that place that doesn't have an AL apartment available yet, ASK what they will do with your mom during the day. If their answer is good and you move mom there, CHECK IN often and see for yourself what they are doing for her. At the various times I pop in, sometimes there are several playing card games, one or two might be doing jigsaw puzzles, they play movies, have magazines, books and newspapers for reading - every resident is going to have different interests as well. Our mom is not into many "group" activities (she does play UNO with them) and did not really have much interest in hobbies before the move, so....
Compared to the other residents, the husband is articulate, can dress himself, move without assistance, and hold a limited conversation as long as you don't mind hearing him repeat himself over and over. He is physically healthy with no debilitating illnesses. He chooses not to participate in the daily activities and just joins the other residents for meals. 2-3 other residents who still can converse sit with him at meal-time and are his new friends. Otherwise, he goes back to his apartment to watch TV and read the newspaper or the magazine that I bring him once a week. He doesn't seem frustrated. He never was a game player or an artist and chooses not to participate in those types of activities. If there is a good piano player entertaining them, he might attend since his younger brother was a professional jazz pianist. It would be better for him if he did some of other activities of course, but he has the freedom to decide. He doesn't like being reminded to shower or change his clothes but never smells, so he washes himself someway.
This facility seems to do an excellent job of monitoring the residents and responding to their needs. There are assisted living openings on the other two floors, but we made his memory care apartment look just like his townhouse bedroom and television room. He thinks of himself as one who needs very little looking after, unaware of how much care he is receiving--the right meds at the right time, meal reminders if he is late, monthly check-ups, etc. As long as he is happy and I see him being monitored and looked after, I am satisfied with this placement. He and one or two others are the exceptions in terms of conversing. At meal time, only he and his meal companions are talking to each other. The rest of the dining room is silent, but no one needs feeding at this time. I never realized that aspect of memory care until I had a meal with him there. Your mom may be similar in abilities, but it is only a matter of time, usually, that the memory care area would be the best fit. It's usually a locked facility so residents cannot wander away and get into trouble. There are "wanderers" on the floor, but also locks on the apartment doors, so one can isolate themselves from other residents just walking in. It doesn't happen, usually, but the option for greater security is there. You might ask the ones recommending memory care why that level instead of assisted living. They are the ones that have dealt with this before and can see the signs. If they know she will be needing memory care soon, why not get her there now and avoid doing two moves?
Instead of sinking to their capability.... they rise to their capability! Interestingly, many seniors without memory issues help out with those who have challenges. I often mistake an attendee for a volunteer!
If ur LO lives in a facility that doesn't maximize her present abilities, consider adding a local ADC to their schedule. It will provide a lot of stimulation, new faces, etc. Most have a "pick-up service". In addition, getting out of the facility and going somewhere everyday adds variety to the monotony of many MCUs. If ur LO is a veteran or spouse of a veteran and requires 24 hr supervision, the VA may cover the cost.
I had the same issues looking at memory cares.. there was one I really liked but did not move them there because of the state of the other residents were so far advanced.. couldn't interact, mostly in wheel chairs and very advanced stage dementia. I went to an "art" class at one of the facilities that I was considering.. and was horrified to see that none of the residents were capable of participating.. at all. They were all so out of it.
The memory cares attached to assisted livings.. I did not care for as all the ones I looked at seem to be an afterthought and their main focus was on the assisted living side. Of course some were much worse then others.
I looked for a long time and finally found a facility that was very unique and had recently just opened.. and their focus is entirely on memory care. There are a few residents that were far along and unresponsive.. but there were about 1/3 of the residents who were closer to my parent's abilities. They are actually making friends there and they try to keep the residents together who have similar abilities... as far as who sits with who a meals.
I know its very frustrating since its hard enough having to move them to a facility.. much less under those conditions. Keep looking around.. the facility I chose was farther from my house and not as convenient for me but I think they are a million times better off there.
Also, she started wandering. That's another reason that a secure MC is required.
I have visited one secure Memory Care that was VERY upscale. They had residents from many levels of progression. I saw a group of ladies playing cards and you wouldn't know anything was different about them. But, there were other residents who were in the end stage and wheelchair bound.
You have to look around, but, at some point, the well functioning dementia patient is not going to be that way. That changes daily and a place that has well functioning residents today, may have many who are not that way months later.
In my state, there are state regulations about the residents activities and schedules.
When my LO went to MC, she seemed to relax. She seemed much more comfortable than she had been in regular AL. The staff understood her needs and she seemed more comfortable with the other residents who were more progressed than her. She was fortunate that her first roommate was higher functioning than she was. They became best friends fast. She has now outlived 3 roommates.
Your mom's needs need to be looked at by someone who is not trying to "sell" you an apartment or services.