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My mother, who has brain injury induced dementia, had an episode of agitation today, she said she wanted to leave the nursing home. She was able to go out the front doors & head towards the locked gates before aides were alerted, able to redirect her & bring her back inside. Aides were assigned to keep a close eye on her the rest of her day was uneventful. Trying to leave the facility is not normal behavior for her, she has been experiencing sporadic episodes of agitation with quick returns to baseline; attributed to dehydration.


I was notified of this incident & it was requested that family come in over the next few days to provide 4 to 5 hours of daily coverage for my mother because the facility did not have the staff to watch her that closely. I said I would need to discuss this with mysiblings. In a subsequent call I was informed that if we could not come in that we would have to cover the $30 per hour bill for her to have an escort. I suggested some testing as bladder infections and dehydration change her behavior & I reiterated my belief that she was experiencing mini seizures which began after her brain surgery & have been controlled by meds. I suggested a CAT scan to see if there were brain changes & to reevaluate her seizure meds.


The social worker called me back to say the urine tests were negative & the doctors felt this was a next level in dementia not seizures or a stroke. I was then asked if I would be open to moving my mother to the memory care unit which is a closed unit & does not have access to outside doors without staff assistance. I said I was amenable if that was the level of care she now needed, but since this was one incident that we should have further testing before such a move. I was told that they were trying to ready a bed for Monday but would need family to come in to care for her over the weekend or to pay the fee for them to bring in extra help. They wanted a committment as to time and days we coud cover right then. I said I could not commit right then for myself or my siblings as we needed to see who could do what. I also explained in detail that the dynamics between my mother and us were testy and our presence for 5 hours would only serve to agitate her more as that is not the normal way we visit with her. I stated I was planning to visit Sunday and could bring a Scrabble game to make the visit last longer, but that once the game was over my mother would be expecting and encouraging me to leave, that is her normal way when any of us visit; we would be hard pressed to stretch a visit out for 5 hours & have it be pleasant, which would defeat the whole purpose.


I offered to take my mother to a hotel for the weekend as my home is not conducive for her wheelchair or walker.


I am concerned about liability if we were to assume care for our mom inside the facility; we are not trained staff, we do not know the policies, procedures or schedules of the building. Should an emergency occur we would be at a disadvantage & in the way of other residents & staff. I also think family being at the facility for that length of time could be an issue for personnel with the potential for misunderstanding.


Should we step in to provide coverage? Not even sure it is feasable yet on such short notice and it would not be for the length of time they want.


Should we be charged for the extra help hired to provide supervision or would this be covered under insurance since the doctor is saying it is needed?



Should I remove my mother from the facility until they have a space in memory care?



If I remove my mother for a few days, do I withhold payment from the facility for those days since I would be using those funds to provide shelter during that time period?



Should my mom go straight to memory care as a result of this incident or should I request more indepth testing and other interventions before she is locked away downstairs? She is very social & enjoys her friends & activities on the main floor. Thank you!!!

Mommycare, it’s been a while...how is your Mom doing now? Did the further testing reveal anything? We all learn from each other, so feel free to come back with any updates when you can.
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Thank you!
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My mother had horrific anxiety attacks both before and after her cognitive abilities and language skills deteriorated significantly when she was about 93, about 8 years after a left temporal hemorrhagic stroke.

Someone from the family, a sister or more typically my husband or I would stay with her, sometimes for two or three hours but when these events occurred, she needed medication and we knew that. Even the smallest dose of Xanax would cause her to sleep for several hours more than typical for her, which I hated, but after seeing her suffer through the relentless anxiety, I went with the meds.

When requested, we hired her regular caregivers to stay with her.

Her residential care preceded the availability of assisted living care or memory care, which would have been appropriate for her had she lived a little longer, and I would have preferred MC.

I am presently caring for an LO in a locked unit which is not “locked away downstairs”. The MC residents attend many of the social events with the AL residents, and lots of scheduled structured activity occurs within the unit itself.

I find that if I focus as much as possible on keeping my LO “safest and most comfortable” at the given moment when these very intense decisions pop up, it helps me focus on getting to the best of all the not entirely satisfactory options available for her.

You are doing a great job with considering ALL your mom’s options, so doing this may help you to winnow the choices down.
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mommycare Jan 4, 2020
Thank you!
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So the unine test was negative...did they do any bloodwork for dehydration? If not I would ask for that. (Moms NH has a process for administering fluids thru a small tummy line without going to the hospital which came in handy.). But in the meantime I would suggest family covers a few hours which will help you see what’s going on, and have the facility arrange for the $30 coverage for the balance. That’s certainly the easiest. You don’t have to keep her engaged the entire time...just eyes on her is all they want. Sit outside her room, or away from her in the family room and talk to somebody else, while keeping watch.
If it’s determined she not dehydrated, and after the weekend she still has issues, then I agree that memory care is the place. Safety for her is #1.
I would not bring her to your house. Way too confusing for her.
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mommycare Jan 5, 2020
Thank you! They have agreed to more testing!
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What would I do? Move her to memory care. She can always move out of it when she gets past this episode. She doesn't know how to keep herself safe. If you don't want to sit with your mom, then hire someone who can. It's likely that is a healthcare expense that can be billed or written off.
From my experience people always benefit from companion care AL/MC/SCF. Even when they are relatively healthy, there is never enough staff to go around.
Withholding funds seems futile.
best wishes
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mommycare Jan 4, 2020
Thank you!
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DollyMe: "There are times when family just has to step up, this is one of them."

Yes. When my mother was very agitated in the NH before a med addition kicked in, I was told that she had to have a family member or sitter there with her from 8 p.m. - 8 a.m. for three days. I wouldn't do it, so a paid sitter was hired (over $1000 for those nights, and kind of useless since my mother ordered her to sit out in the hall, which she did). My mother's trust paid, and the $200-something of my part gone from the trust to pay the sitter (trust was to be divided four ways between my brothers and myself) was well worth it so that I could have my nights in my home to sleep!
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DollyMe Jan 4, 2020
My 94 yo mother had a stroke in November, she always fought us about moving into AL. Her stroke was minor, but she started to have panic attacks, kept calling the EMT's every night as she thought that she was dying, she wasn't, vitals were fine....so we hired a night caretaker....she sat there and watched my mother sleep for a month!

We have now moved her to Florida and she is in AL, there are people there 24/7, she is good!
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To me, MC is the most viable option, she has already been determined to have dementia. As for withholding payment, that will go over like a lead balloon, and you will have to pay it regardless, I wouldn't rock the boat at this time, you do want her to be the first in line for MC, not the last on the list. You do realize that they can ask her to be removed and after she is tossed out finding a new place becomes that much more difficult and many times, more expensive.

There are times when family just has to step up, this is one of them. If family members do not want to do it, then pay the $30 an hour. As for liability, sitting there with her is not a danger to anyone. That is a real stretch.

I would suggest that you try to calm down, it is not like she will need an aide ongoing, this is just a support bridge for a few days.
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