Have you moved a LO into memory care when they were sick?

*Ollie*

We have found a memory care facility we like and have had plans for them to come out for an assessment of my mom to determine if the fit was good on both ends.

My mom's health is declining.   We've started palliative care and will help my mom as much as she lets us.

We were already overwhelmed but now with the additional care she requires (small meals every 2 hours, help with all ADLs,  incontinence, etc) we are very overwhelmed.  My husband and I both work and have other responsibilities as most of us do.   

She has some help a few days a week, which is great.   

My question is, has anyone moved their LO into a facility when the person's health was declining?  If so, what were your circumstances and how did the move go?

 If my mom is at the end of her life, we'd like her stay with us and we will deal with the level of care needed.   Do we wait to see if she stabilizes and then move her?  Or move her regardless because the facility has trained staff?

Anyone have a crystal ball?  

Dawn MB

Hi Ollie.   I just posted a question to the group about having to move my mother into a nursing home.   Visiting is such a horrific deal, so I am waiting for some advice from here as well.   But I can tell you that moving someone when they are failing is probably not a bad idea.  She sounds like she needs help more, more than what you are able to give.   But I would discuss with the palliative team to see what their thoughts are.  I say this because you are questioning her end-of-life.  I know for my mother-in-law, she went from palliative care right to hospice.  The folks, along with her Dr. were tremendous at helping us make that decision.  

I'm not sure if that helped, but all the best to you and your mother.

harshedbuzz

*Ollie* wrote:

We have found a memory care facility we like and have had plans for them to come out for an assessment of my mom to determine if the fit was good on both ends.

In your shoes, I would have a Plan B facility in case your mom no longer meets their criteria. Some of the very appealing MCFs cherry-pick their residents. Some have minimum requirements for self-feeding and ambulation for admission. Her feeding schedule may be enough to have this facility decline to offer her a place. I would tour a few SNFs just in case you can't make the MCF work out. 

My mom's health is declining.   We've started palliative care and will help my mom as much as she lets us.

We were already overwhelmed but now with the additional care she requires (small meals every 2 hours, help with all ADLs,  incontinence, etc) we are very overwhelmed.  My husband and I both work and have other responsibilities as most of us do.   

She has some help a few days a week, which is great. 

There is a big disconnect between your mom's needs now and care "a few times a week". How long can you sustain filling that gap which will only widen as she progresses and could potentially need 24/7 care? Even if you could afford and find additional caregivers for daily shifts, you'd be managing their scheduling and covering call-outs on the fly.

My question is, has anyone moved their LO into a facility when the person's health was declining?  If so, what were your circumstances and how did the move go?

Dad's health was pretty bad when we placed him. His geripsych, neurologist and most family members saw him as a stage 5/6-- dad was very verbal. His conversations were all conflated craziness to those who knew better, but they gave a false sense that wasn't so far along. DH and I suspected he was further along. He could still walk around, he used the toilet sometimes, he was self-feeding and chatty. He had a fairly short period of adjustment-- a couple weeks where he was really nasty with us-- but by 4 weeks he was thinking of the MCF as "home". Dad was not cooperative with my mom as caregiver, so he got much better care with professionals whose care he accepted. Until the last week of his life, he looked better with them than he did in the last 4 months at home. 

 If my mom is at the end of her life, we'd like her stay with us and we will deal with the level of care needed.   

There is the rub. You can't know how long you would need to provide this level of care.

There is no crystal ball, especially if there are no other health conditions that could presumably end her life before dementia does. Some PWD can linger in the sub-stages of stage 7 for a couple of years. This isn't like planning for care for CHF or after surgery. 

Seven Stages of Dementia | Symptoms, Progression & Durations (dementiacarecentral.com)

Do we wait to see if she stabilizes and then move her?  Or move her regardless because the facility has trained staff?

The losses related to a UTI are generally as recouped as they will be in a couple weeks if that's what you mean by "stabilized". It's very possible that what you are seeing is her "new normal" from which she will continue to decline. 

Anyone have a crystal ball?  

I wish. I can certainly appreciate the desire to let her age-in-place if her passing will be imminent. My mom felt the same way; she'd cared for dad at home for years and I feel she wanted some sort of recognition for having "kept him home". But she was too stressed and frail caring for someone who wouldn't cooperate and was threatening murder-suicide, so placement was necessary. And then he went and died only 10 weeks later which makes her feel like she could have "stuck it out". She couldn't have; his care very nearly killed her.

My friend put her dad in a MCF from the hospital and he died before dinner. Another friend's mom lingered in a SNF for over 5 years in the later stages before she finally passed. And yet another friend retired and kept her mom not only "home" she declined to move with her DH when he was transferred; her mom lived another 3 years before passing. One of my aunts spent 2 1/2 years in stage 7 while her older sister went from stage 5ish in AL to passing in 3 months hastened by a fall. You just can't know how it will play out. 

Good luck.

HB

MN Chickadee

There isn't a right or wrong answer. As the previous poster pointed out, some people go through end stages very quickly and others linger for years. There's a chance you move her to a facility and she passes two weeks later and you feel guilt for not sticking it out at home or it's possible she lives years in your home and you are left totally wrung out, marriage and social life and career affected not to mention your own health. Whatever decision you make will be the best one you can at the time with the information and resources you have. 

I think all of us who have moved our LO to a facility have done so because their health is declining. My mother stayed in stage 6 a long time, like 3 years, and was in a facility for most of it. She needed 24/7 supervision and help with every aspect of her personal care, toileting/diaper changes, some prompting with eating and drinking.  I thought given her trajectory she would also spend years in stage 7 but in the end she caught covid which caused her dementia to spiral and she sped through stage 7 in a month and passed away.  A fall, a broken bone, an infection, a stroke, and many things can also cause this kind of spiral with dementia so it's just really hard to say what may come. I was very grateful to have her in a facility already with familiar surroundings and staff. My family never could have provided the same care at home but everyone is different. In the final weeks she was bed bound and the staff were doing all kinds of care 24/7 that would have been overwhelming for me. I spent most of every day at the facility in the final days. When she was in active dying I could be there all day and night if I wanted. There was certainly no obstacles to giving her the exit we wanted for her. The chaplain at the facility visited her often which she would have wanted, hospice came in daily with their nurse and other services, the staff kept her very comfortable. Dying at home does have a more idyllic connotation but sometimes just isn't possible or the right thing for all involved. When my time comes I would not want my family to feel burdened by this, as long as I am comfortable and they are able to come to my side wherever I am that would be good enough. Some caregivers do keep their LO home and are able to provide that 24/7 care but it certainly is not for everyone. Anyway, good luck. Whatever you choose you will do your best for her and that's all our parents can expect of us. 

Jo C.

This is a question that becomes very personal and if placement is decided upon can be even facility specific.  Some Memory Care facilities will accept and keep such an admission, others will not.  Your mother sounds as though she would actually qualify for Hospice care which may well bring more services to you than Palliative Care if it is decided to keep her at home. 

As for care facilities, I will share our exprience with you.

When things got to the point that placement was an absolute necessity, I did thorough research and found a Memory Care facilty that seemed the best fit - the entire facility was dedicated to Alzheimer's patients long term care.

I was cautious to screen carefully and asked many questions prior to admission. My LO was not actively dying, but was not in the best of health; mostly bedbound with periods in a wheelchair.  I was assured by both the Administrator and DON that they could take care of my LO through the entire scope of care including end of life care and told that they would also accept Hospice.

It was a monster of a lie.  As soon as my LO could not get to the dining room for each meal, as soon as it took two aides to transfer from bed to wheelchair, we were asked to leave!  No behavior problems at all; it took us by surprise.  NOTE:  Some Memory Care facilities are llcensed as Assisted Living and are not staffed for operating at a Custodial Long Term Care level. 

We needed to change facilities quickly and we were truly fortunate in that the facility we found did indeed have a dedicated unit for Dementia Care and they took wonderful care of our LO until death even though bedbound and beyond.  We also had Hospice service.

One facility is not the same as the other. If you look into facilities, I would specifically ask the question:  What would be the reasons you would ask a family to move their Loved One.  I would ask specifically about not being able to get to the dining room; would they be willing to hand feed her every two hours (that is a hard one), do they permit a bedside commode, do they care for completely bedbound and incontinent patients 24/7 to the end of life.  Do they have an active Hospice service that serves their patients when the need arises, Then ask the same questions of more than one admin. person.  As said, we were taken by surprise by the first care facility considering what we were told.  Best to keep oneself very well informed all the way through the patient stay.

I wish you the very best in whatever decision you make; whether at home or on finding a good care facility, let us know what you decide and how things are going,

J.