Alzheimers and Dementia Care - what did your family do?

[Anonymous]

At what point do you need to switch from home care with a caregiver (round teh clock caregivers) to a memory care place? We are going to start home care after a hospital stay but I have a feeling this won't last long due to sundowning, excessive irritability at night, etc. Hired an agency, but think it might even become hard to retain agency care if mom is too hard to handle at night.

Anyone go through this and have some advice?

[Anonymous]

Been there and we delayed Memory Care too long to the point nursing home was the only option. For memory care they need to be fully ambulatory usually. The easiest time to make the transition is after a hospital stay-you discuss concerns with medical team. Then it becomes the doctor's idea and not that you are the evil person doing it.

Keep in mind they often try to find the right med mix so the person is compliant. There are fun activities at memory care and good staff at the right place. Visit some to see.

You may want to hire a case manager to help with transition and help you negotiate with the place is parent is too difficult.

[Anonymous]

Anonymous wrote:Been there and we delayed Memory Care too long to the point nursing home was the only option. For memory care they need to be fully ambulatory usually. The easiest time to make the transition is after a hospital stay-you discuss concerns with medical team. Then it becomes the doctor's idea and not that you are the evil person doing it.

Keep in mind they often try to find the right med mix so the person is compliant. There are fun activities at memory care and good staff at the right place. Visit some to see.

You may want to hire a case manager to help with transition and help you negotiate with the place is parent is too difficult.

Plus, you can couch as, ‘It is only temporary, until you fully recover and we can set up help at home.” Then, keep delaying.

[Anonymous]

My grandfather wanted to check himself into a nursing home.

So he did just that, he was there about two years.

He has cancer too, so that was the reason of his passing

But the around the clock help, plus food, socializing
Helped ALOT

[Anonymous]

My dad was diagnosed at a relatively early stage but lost his license automatically with the diagnosis so we had to act. First hired drivers, then found a continuing care retirement community and persuaded him to move. By the time that happened, he was already declining more; he loved the place but within a year we had to hire aides to help him find his way from the restaurants back to his apartment, and eventually help him shower and dress etc. We were trying to figure out when/how to move to memory care (same facility) when he had a medical issue that resulted in a 6week hospitalization & significant loss of physical/mental capabilities. So from there he moved to the memory care unit and eventually to the skilled nursing floor.

Fwiw I strongly strongly advise finding a place that has both memory care and skilled nursing -- even if you don't make the move yet. It's so hard to think/research/evaluate places when you're in a crisis. And so much easier if you find one place that can handle the whole progression of the disease.

[Anonymous]

Any tips on how your family managed to continue on at home? Dad is part of the equation and wants to continue at home with mom there. He needs some physical help but is still cognitively in relatively good shape, but unable to care for mom.

[Anonymous]

Anonymous wrote:My dad was diagnosed at a relatively early stage but lost his license automatically with the diagnosis so we had to act. First hired drivers, then found a continuing care retirement community and persuaded him to move. By the time that happened, he was already declining more; he loved the place but within a year we had to hire aides to help him find his way from the restaurants back to his apartment, and eventually help him shower and dress etc. We were trying to figure out when/how to move to memory care (same facility) when he had a medical issue that resulted in a 6week hospitalization & significant loss of physical/mental capabilities. So from there he moved to the memory care unit and eventually to the skilled nursing floor.

Fwiw I strongly strongly advise finding a place that has both memory care and skilled nursing -- even if you don't make the move yet. It's so hard to think/research/evaluate places when you're in a crisis. And so much easier if you find one place that can handle the whole progression of the disease.

+1 For MIL, it also meant a lot of the same faces when she moved to skilled nursing, her memory care aides came to visit and the staff had access to all her medical records and her food likes/dislikes. it made the transition so much easier for her, not just for us.

[Anonymous]

Anonymous wrote:My dad was diagnosed at a relatively early stage but lost his license automatically with the diagnosis so we had to act. First hired drivers, then found a continuing care retirement community and persuaded him to move. By the time that happened, he was already declining more; he loved the place but within a year we had to hire aides to help him find his way from the restaurants back to his apartment, and eventually help him shower and dress etc. We were trying to figure out when/how to move to memory care (same facility) when he had a medical issue that resulted in a 6week hospitalization & significant loss of physical/mental capabilities. So from there he moved to the memory care unit and eventually to the skilled nursing floor.

Fwiw I strongly strongly advise finding a place that has both memory care and skilled nursing -- even if you don't make the move yet. It's so hard to think/research/evaluate places when you're in a crisis. And so much easier if you find one place that can handle the whole progression of the disease.

This is true. When our relative stopped eating, they said they'd the relative out of memory care. We had nowhere as a backup and the memory care place did not have skilled nursing care. It led to a lot of painful situations that could have been avoided.

[Anonymous]

Hi OP,

Both my parents were experiencing cognitive issues, but my dad had an Alzheimers diagnosis. At first we had some intermittent caregivers and they were in their home but we had to move them to an apartment because the house was too much. They did not understand or want to move.

Then we had round the clock in-home care but when they can't physically move the person (just to sit up, get up on toilet, help bath, etc.) and the equipment is too big or expensive to have (also my mom is OCD and refused to have the equipment in the apartment) then they need to be in a nursing home type of facility which does have that equipment. You almost have no choice. A 25 year old female caregiving simply cannot physically move a 200 pound man with alzheimers without special equipment.

As previous posters have said, the best time to transition is after a hospital stay. My parents were in a continuum of care type of place, so after the hospital my dad went to the skilled nursing floor (not necessarily memory patients), got rehabbed there a bit and then never went back to the apartment. He went into the memory care unit. He died there about a year later.

You may have to lie to your parents, you may have to manipulate them into going to a care facility, unless you have had many previous clear-eyed and direct conversations about their care. It isn't pretty and it's not fun.

[Anonymous]

Anonymous wrote:Hi OP,

Both my parents were experiencing cognitive issues, but my dad had an Alzheimers diagnosis. At first we had some intermittent caregivers and they were in their home but we had to move them to an apartment because the house was too much. They did not understand or want to move.

Then we had round the clock in-home care but when they can't physically move the person (just to sit up, get up on toilet, help bath, etc.) and the equipment is too big or expensive to have (also my mom is OCD and refused to have the equipment in the apartment) then they need to be in a nursing home type of facility which does have that equipment. You almost have no choice. A 25 year old female caregiving simply cannot physically move a 200 pound man with alzheimers without special equipment.

As previous posters have said, the best time to transition is after a hospital stay. My parents were in a continuum of care type of place, so after the hospital my dad went to the skilled nursing floor (not necessarily memory patients), got rehabbed there a bit and then never went back to the apartment. He went into the memory care unit. He died there about a year later.

You may have to lie to your parents, you may have to manipulate them into going to a care facility, unless you have had many previous clear-eyed and direct conversations about their care. It isn't pretty and it's not fun.

This, so this. it's one of those little secrets nobody tells you.If they are difficult especially you often need to tell little lies and do all sorts of manipulations to get them the proper care.

[Anonymous]

Anonymous wrote:Any tips on how your family managed to continue on at home? Dad is part of the equation and wants to continue at home with mom there. He needs some physical help but is still cognitively in relatively good shape, but unable to care for mom.

They can move in together to a facility. That is what we did with my In-Laws. Spurred by a cancer diagnosis and needed surgery, we suggested that they both move in to an independent living facility while he recovered. They never moved out. FIL died four months later and MIL (with dementia) stayed in the independent area of the facility for two years, them moved into the memory care facility.

I would suggest this route if your father cannot drive anymore and if he has a dementia diagnosis, he should not be driving anymore.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Any tips on how your family managed to continue on at home? Dad is part of the equation and wants to continue at home with mom there. He needs some physical help but is still cognitively in relatively good shape, but unable to care for mom.

Move them both to a facility where dad lives in an independent unit nearby and mom is in the nursing or memory care side. Dad can either walk over or take a golf cart over to see mom daily.

[Anonymous]

Yes I'd agree with moving them to a place with the care they will need as things progress. My grandmother first had help in her live-on-your-own apartment. They were totally fine with doing things like unplugging the stove (she was storing sweaters in there) and safety things like that. The hardest part was that she was still with it enough to be humiliated when she had to move from the more independent living to the locked ward. It was very hard on my mom. My grandmother was confused and accused everyone of stealing her stuff. But it was the right decision because was not safe in her apt anymore, even with lots and lots of help on hand.

After that experience, my mother has already picked out her long term care place and given me access to her bank accounts etc, even though she's healthy and just 70.

[Anonymous]

Is it true that there is no medicare/medicaid help for paying for memory care facilities. It's only when you qualify for the nursing home care and spend down your assets that medicaid will kick in?

[Anonymous]

Anonymous wrote:Is it true that there is no medicare/medicaid help for paying for memory care facilities. It's only when you qualify for the nursing home care and spend down your assets that medicaid will kick in?

That's my understanding. There is also a 5 year look-back, so if anything was sold or gifted in the 5 years prior to medicaid, then the government will expect you to cover that amount.