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I am choosing a facility for my mom this week. My mother will be living in a two-bedroom apartment with my sister, who has some health issues (severe pain issues with her deformed feet, obese, on SSDI) but is cognitively ok, though needs support also. Choosing between two places.


The one that feels the most like home is an AL facility, with memory care in a different building on the campus. But, there is an "in-between" wing in the AL building, a secure wing where people who need a bit more oversight can go before full-blown MC (locked doors, etc.). So there are mild to moderate cases of dementia living there. There are no real memory activities integrated into the assisted living programs, and while they would be familiar with and manage early dementia issues, there is no specialized program of any kind.


The second place has an integrated MC day program that my mother would be able to participate in during the week. It's called Varitas. They work on memory and have targeted activites in their day program that would be no additional cost. This place feels more institutional, though nice. It is a 10-story building with elevators and smaller rooms.


I do not want mom to feel socially ostracized. Since the first, more homey place has a "step-up" wing for early dementia, I think there will be many people there "like my mom" who have confusion but no inappropriate behaviors. Mom is social and chatty, and often you could talk with her a long time before noticing something was "off". She is not violent, and does not wander.


She has normal pressure hydrocephalus, a condition that does not progress in the same manner as other dementias, but I am not clear what exactly that means, and the doctor will not clarify. Doctors have become experts in being vague, "no way to know." I am assuming she will get worse, but I don't know how long that will take.


I suspect that in reality, my 85-year-old, doesn't-walk-well mom would spend most all of her time in her room anyway. I hope she will go down for meals if taken by my sister or an aide.


I wonder if the memory care program matters at all, and perhaps I should just put her in the place that feels better. It would be a nicer place for my sister as well. But, there would be more SUPPORT for sister with the Varitas program, and perhaps that is all that really matters.


I don't want to have a Pollyanna picture of the MC program, though it sounds good. A worry is that mom might not be far enough along with her dementia to feel comfortable around the more advanced residents, and would refuse to go anyway.


Has anyone had experience with such programs? Are they a positive? Or might mom and sister be better off in the homier place where mom can participate as she is able, and then transition into their separate MC facility when it's needed? Worried the targeted program might sound better than it actually is, and that both sister and mom would be happier in the less-institutional place. Quit trying to fix it, and just let them live life. Again--less support for sister in the homier place.


Anyone have experiences to share? Thanks!

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Go with the option where you think they'll be happier and is less institutional. At some point you will need to make new decisions but I'd give it a try.
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WearyJanie Jan 2023
Thanks! That is the big thing--there will be new decisions necessary along the way. I'm trying to plan to far in advance.
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"Normal pressure hydrocephalus (NPH) is an abnormal buildup of cerebrospinal fluid (CSF) in the brain's ventricles (cavities). It occurs if the normal flow of CSF throughout the brain and spinal cord is blocked in some way. This causes the ventricles to enlarge, putting pressure on the brain."

I would read up on your Moms problem then make a decision. Does she have a shunt to help drain off the liquid. This really isn't a Dementia but has the signs of one. A lady in our congregation suffered from this. She ended up in LTC.

I asked that Mom not be kept in her room. So she was pretty much in the common area where she got stimulation just by being with other people. She also walked around the facility.
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WearyJanie Jan 2023
JoAnn, Yes--she does have a shunt. It helped for awhile, but now she seems to be backsliding again. My father died a year ago, and he refused to have the "horrible surgery" when mom was initially diagnosed. He also refused the spinal tap that's necessary for diagnosis--it is known to be very painful.

By the way, there was a discussion here about that a little while ago; a woman asked if it was worth it to pursue the NPH diagnosis, since the spinal tap was so painful, and most here said not to do it. For the record, it didn't seem to be a problem at all for my mom. I was prepared for the worst, but she came out of the procedure with not a word about it being painful.

Anyway, the doctor said the shunt would only be effective for about 6 months, (!) and my dad felt it was not worth the surgery. A few months after his death, we had it done anyway, and while it helped for awhile, she is indeed beginning to slide again now about 7 months later.

I have read and read and read about NPH. Many articles say to expect a good outcome, especially if treated early. Our doctor did not have the rosy outlook that many articles I read have. He said only a 50/50 chance we would see any gains at all, and that they probably wouldn't last. But, he will not give a prognosis, just the 6-month comment. He said that no, there will be no replacement of the shunt at that time, and the shunt will never be removed. So right this minute I am not happy we even did the surgery, to be honest.

This move is a first step--get mom and sister out of the unwieldy house, with care support. Then I will get engaged in pursuing other things that might help. There are some doctors who think NPH is actually a variation of Wernicke's Encephalopathy, normally associated with alcoholism. They feel that other things, like high stress and faulty nutrition, can cause the same problem as WE, and that correcting those things can slow or stop its progression. I am hopeful we might see some gains in an environment where stress is lower, food is better, and there are happy things to balance the day. But we will take it one day at the time. If we do see gains, I will post!
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I agree that there is no "fix it" in dementia and its worsening norm. There are no memory games that can prevent it or improve it. But overall, a lessening of generalized anxiety seems to help people; any anxiety can worsen symtoms. I love the places now having the "in between care" with locked premises to prevent wandering, but otherwise --other than a bit bumped up staffing--much like ALF for people who are more able. Memory care often has so much less to offer in home like facilities, often shared rooms, and while a good bump up in staffing, most residents are quite impaired. For my own brother, his place had such a unit, which his ex partner needed and my brother did not. It worked very well for residents. We did not choose the more "hotel room" like facility we toured, tho the food there was better, almost gourmet. It wasn't as comfy and homelike as my brother's facility. I would say you have to make the choices best you can because what is stellar in one place may be lacking in another, but they have other better things. Just do the best you can and good luck.
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WearyJanie Jan 2023
Thank you for your reply. I am feeling that both could be good choices, just different. I spent the day yesterday carefully working through what I thought was best for my sister--I think she is so focused on what's best for mom that she has put her own needs and wants aside. She is important too! That's why I am leaning toward the place with the MC program--I feel my sister will have more structured support.
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The activities in a memory care are not something that are supposed to improve function, they are things that people with dementia are capable of and may find enjoyment from with their more limited memory and attention span. I'd go with the AL if they feel she meets their criteria, the in between wing if not.
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