Does anyone else have LO in a nursing home who cannot live alone due to dementia and severe diabetes but is still very mobile and outgoing?

My Papa lived alone and was failing physically. We were there twice a day to make sure he took his meds and ate, but it wasn’t enough. Found out later, he only ate one meal a day. So after one of his hospitalizations he failed the hospital’s PT test to live alone, and they sent him to rehab.

Best decision ever! Like a new man, he got a spring back in his step, his walking looked better than it had in years (with a walker). He certainly didn’t look like someone who needed to be in a nursing facility.

It was the structure and stability that he needed. They made sure he ate 3 times a day. His meds were on time, every time. They didn’t let him languish in his chair, he got physical therapy. He even got better meds, since there were lots of eyes on him there.

So the setting is very important. Like your Mother, Papa was the fittest resident there. But they discharged him home and he was back six months later the same weak dehydrated little man. The structure and stability matters a lot.

In general, Medicaid does not require her home to be sold for her to apply and receive benefits. However they will expect reimbursement from the sale of her home after she passes, whenever that may be. If you are pretty sure her care will cost more than the value of her home in a short time you may as well sell it now, especially if you are paying the bills with your own money. You won't be reimbursed for any of that.

It is confusing when they don't seem "that bad" but remember how quickly she could take a turn without the care she's getting now. How long until she faces a diabetic disaster again? It sounds like she's doing great where she is now, I'd take that as evidence she's in the right place. She's already there and doing well I would consider that a way better option than quitting your job and moving into her place.

I wonder if what you are seeing is mom’s dementia progressing. Many with dementia are very active. People can live a long time with diabetes managed well and plenty of exercise. While she may look out of place in the NH, that must be where she needs to be or Medicaid wouldn’t accept her. And can you imagine trying to keep up with her trying to dash down the street or in the grocery?
So, reading between the lines, your mom is already on Medicaid, her home as an exempt asset is sitting empty and you are trying to keep it up?
Unless you have some reason to believe you will own it one day, you might be better served to sell it now, use her money until it is gone and then put her back on Medicaid. Then you won’t have to spend your money (and time) keeping it up.

Perhaps you could find a bed and board home or an ALF that would be less expensive than the NH and her money would last longer? You could have a needs assessment done now that she is better to see if that is even feasible.

And yes, I think all the time how sharp my DH aunt is at 95 with long term dementia. But she has NO children or anyone else stepping up to take care of her. Even though I have taken care of her a long time, I am no longer able to do so. and she was easy in comparison to many.
I accept that she is where she needs to be.
You have to make peace with that. I really wasn’t able to until aunt had a flood in her home that required her to be moved out while repairs were made. Once the cycle was broken, I was able to see that I was done. She has accepted it totally and like your mom seems much better than before. Of course, she could wake up in a different world tomorrow but I accept that as well.
Even if you have a lady bird deed or a life estate warranty deed, trust, whatever, it is a long haul to keep the home going with taxes, insurance, lawn maintenance yada, yada, yada and Medicaid laws are subject to change.
Give us some feedback and you will get better answers.

Different point of view - an elder who is 'sometimes coherent and very mobile' is much safer in a nursing home. Doors with alarms, 24 hour staff, and access to skilled nursing care around the clock help keep her safe and healthy.
In less secure settings, this combination of abilities creates enormous burdens for caregivers. Lack of safety awareness means that your mom might decide that she wants to go for a walk....during the night.
Dementia always progresses, and her diabetes suggests vascular dementia. This has a less predictable pattern progression.
You've already discovered that relying on care at home is not enough for her, given her situation.
You are doing the best thing for her, visiting her in a great facility that cares for her. Try to let go of whatever guilt may be pushing you to think about taking her out of the place that is now 'home' for her.

Is Mom complaining that she doesn’t like it or doesn’t belong? My mother is also a diabetic with dementia among other problems but very steady on her feet and capable of being mobile when she wants to so I’m coming from some understanding, though no two situations or patient's are the same. She obviously isn’t able to manage her blood sugar properly on her own reliably which is a big factor in her mental health as well as her physical health and I wonder if part of the reason she is motoring all over the place and often coherent when you visit is that they are managing her glucose levels well. Has she always been this way or was it more hit and miss prior to her hospital stay? Has she shown improvement over her state prior to the low blood sugar? Managing blood sugar even for mild elderly dementia patient who was managing for years can be very confusing and frustrating. We have a method that’s working for my mom now but it entails my brother or I telling her when to test and when to give her Lantis/take her pills as well as oversee each process, it’s already a struggle at times and when we run out of ways to do this she won’t be able to stay at home anymore even with my brother living there. It sounds like you have reached that point. Quitting your job and moving in with her simply to keep her home is not likely to keep her home for the rest of her life, her dementia as well as other issues are going to get worse and probably beyond what you are able to manage. It will also change your relationship even more than it has been and not necessarily for the better. At the moment you are taking care of her and I know there is still plenty to do, she is safe, happy (I think), mothering around and well cared for and you are safe, independent, living life with your mother instead of for your mother. All as it should be.

Where are her friends now? If she has always made friends easily and enjoyed those relationships again she is probably in the right place, unless her friends visited all the time when she was home (meaning they still could visit at NH) having peers around all the time is probably much better for her than being sheltered at home. The fact that she’s so mobile and fairly coherent means you could probably take her out for lunch or to visit friends, maybe there are younger friends who you would trust to take her out to lunch or something too. This is something you would want to talk over with the staff and her doctors but while some residents need to be “locked in” and not able to go out on their own not all are at the point where it’s better if they don’t go out supervised either, it doesn’t sound like your moms at that point. The other advantage with not taking her home now of course is that she has the ability and time to get comfortable and feel at home where she is before she gets to the point where she can no longer go out and can’t remember why she is where she is.

None of this is easy but I think you are following the best track for you and your mom so focus on the positives here rather than considering huge changes, especially changes made out of misplaced guilt. Guilt is never a good reason to upheave your life. It sounds to me as though you are and have been doing everything you can to provide the best for your mom.

Stay strong

I agree with Clairesmum in that if she is not safe at home, she is better in a facility where there are more "eyes".

I do need some more information though... I am correct in thinking that by the term nursing home you mean she is in a long term care (LTC) facility for custodial care? She might find more active colleagues in an AL but if you find one that is a fit for her, see if:
** they have a specialized memory care (MC) unit
** they will guarantee her a Medicaid bed when she runs out of private funds (get that one in writing although be aware that should the facility be sold that agreement blows up in the wind)
** if they have an attached LTC unit if case she should ever need that level of care.

Another question - there anyone living in her home now? If no one is living there, the home is her asset, can be sold and the proceeds used for payment of her new living quarters at the LTC or AL, just like they would be if she had decided to move to a retirement community in FL. Once those proceeds are gone she would be eligible for Medicaid but in NJ you can apply before the house is sold so that you are on their radar even though she will not get funds until she reaches the NJ Medicaid threshold of $2000. Medicaid in NJ also has a load of other benefits including some in home care although not sure if your Mom is beyond that stage and you always have to worry about the caregiver getting to the house in snow storms or just dealing with their own personal family emergencies.
In the facility I worked at we had a very active and mobile patient who was an accountant. We brought him accounting paper and he happily sat at a desk for several hours a day.. "calculating". Under close supervision we also let him "help" the staff wheel wheelchair residents to activities (that was a real help incidentally!). Sometime he would stay and participate and other times he excused himself to get back to "work". It was great having a staff that was really into their residents individual "quirks".

Good Luck!!

I would leave her where she is getting the care she needs. Being more mobile than the other residents doesn't make going home a thing for her, since she is unable to follow her medication regimen.

I feel like the fact that she's doing well there is a *good* thing! It means the setting is working for her. Don't second guess yourself, you made a decision that has her safe and thriving.

My 92 yo mother sounds like the Queen of England (she is English) and is very stubborn and willing to express her opinions. She has dementia and is in a home but insists she can take care of herself. When in her home with caregivers coming in, she nearly electrocuted herself, would not change her clothes, would not let the caregivers clean, and kicked them out regularly. I am also struggling as she still sounds coherent and sounds the same but I have to remember that she has dementia, I have better judgement, and we are doing the right thing for her. You do what you think is best as she has dementia and her judgement is flawed. You also need to take care of yourself in order to be there for your mom, there are limits to what we family caregivers can do.

Since mom is mobile but not competent to handle her medical needs, she needs help. She doesn't need somebody to help her with mobility but with medications - and probably to keep her safe since she has dementia.

It appears that your mom needs to be in a skilled nursing facility - since a nurse will need to give her medications and monitor her blood sugar. Find one nearby that will allow private pay (until her funds run out) and will help her to apply and use Medicaid if needed. Since she is mobile, consider places with nice courtyards she can walk around in and activities for those who can move. Talk to the activities director about what "active" events are on their calendar regularly.