Pros and cons of home care vs memory care--and misperceptions? For educational purposes

“I was struck by comments that a PWD had to be non-ambulatory or completely unable to perform any ADL's before they were appropriate for MC, neither of which is the case”.

M1 said it’s NOT necessary to be nonambulatory or unable to do any ADLs, in other words. LOs often go to MC able to walk and even toilet themselves. I’m sorry I think you may have misunderstood.

This is an important discussion.

Specific to the PWD dementia being ambulatory, in most MCFs I toured, being able to ambulate and self-feed is a requirement for acceptance into the units. A few places considered being able to get around independently in a wheelchair; my aunt's place did. In many facilities near me, being unable to walk meant placement in a SNF which is close to twice the monthly cost for a private room if you can find one and may lack dementia trained staff and dementia informed programing.

Home care can become more expensive in certain situations. If the caregiver needs coverage to work, a MCFs could be cheaper in the long run. Once the PWD becomes a 2-person lift, you may need near to 24/7 coverage.

Costs also include wear and tear on the caregiver. A chronically painful back is a steep price to pay to keep someone "at home" in a place they don't recognize as such. My mom didn't take care of her own medical needs which resulted in cascading health issues and the loss of vision in one eye.

Home care can effectively turn the house into a "Nursing Home for One" which doesn't allow for at-home respite for the caregiver.

Until a PWD is accepted into hospice care, it can be difficult to find medical professionals who will come to the home which means getting later stage PW who aren't cooperative or potential very mobile to various medical appointments. Most MCF have an affiliated MD or NP who makes calls to the facility and can manage most care. Dad's also had a visiting podiatrist and geripsych. My aunt's had that as well as a dentist who came to the CCRC for routine dental care.

Care facilities do increase a PWD to a higher risk of infectious diseases. Outbreaks of things like COVID, influenza and norovirus are not uncommon.

One concern that I had in placing dad was the overwhelmingly feminine atmosphere of all but one MCF I toured. The reality is that women are more impacted as a group than men. They are both the majority of PWD (higher lifetime occurrence) and are the majority of at-home caregivers. I suspect the latter is impacted by the societal bias that seems to judge women more harshly around placement. The result is that there aren't a lot of men on the units and often the activities seem sort of traditionally "girlie" like crafts and "manicures". I will say dad's place did try to engage him with a putting game when they found out he golfed, and the guys seemed more engaged with that than crafts.

HB

Just a couple of thoughts. We seem to think of keeping them at home is not much more costly than if they were 30 years younger, without the disease. But when you have to replace furniture, carpeting or flooring because they pee wherever they want, those are expenses. When they flush things that require a plumber, that's an expense. When they leave the water running upstairs, and it ruins flooring and the downstairs ceiling, those are expenses. When they "fix" things that require a professional to actually fix, that's an expense. And so many other things are expenses that we don't consider.

Some Cons of placement: Short staffing is a big consideration. Even at the best places, they are not loved like you love your LO. As a caregiver you worry about the quality and quantity of care they receive. Medications become another worry for you because it's not uncommon for meds to be switched without you knowing it. Even though you have medical POA, you may or may not be consulted about certain things.

Some Pros of placement: It may save your life or keep you from becoming very I'll. Your mind and your body is built to only take so much abuse. Your LO will likely be safer in a controlled environment. Staff are able to get the rest they need because they are not responsible every minute. You can have a more normal life at home.

Thanks M1 for the thread. It gives people things to take into consideration.

For those of you having to make the decision, unless people (especially family) are telling you it's time for placement, don't worry about what others are telling you. It's your decision to make, and if you should feel guilty (common) about failure, change your thinking to look at it as being successful for doing what you did for your LO, without letting the disease take you too. It's your decision, not your neighbor's or that of your friends. Do what you think is right for both you and your LO.

@M1 I have wondered about that data as well.

Women do have longer life expectancies than men. At age 85, 1/2 of individuals are women. I heard on NPR the other day that of those who live to 85, 1/3 will develop dementia.

Men out-live their wives about 20% of the time.

This suggests that maybe a higher number of women in facilities were placed by an adult child or sibling than for men.

It would not only be interesting to look at the percentage of husbands who place vs wives who do, but also the percentage of adult daughters vs adult sons who do and whether that looks different if the parents placed is a mother or father. It would also be interesting to see if those numbers change as more men take hands on roles in caring for children compared to previous generations.

This is an interesting read-

alzheimers-facts-and-figures.pdf

HB

The decision to place in MC or not is never going to be an easy one, however, having done back-up planning for placement is something I highly recommend for all of those wishing to keep LO at home.

My father had ALZ and my mother would not hear of MC placement, even though she was his sole caregiver (rest of family lived 1 1/2 hours away). The family did step up to do doctor's appointments, grocery store runs, but the 24/7 care was hard on her.

We ended up doing an emergency MC placement after he suffered a heart episode which hospitalized him for 10 days. He went downhill in his abilities, and there was no way for him to return home. I spent the better part of 48 hours trying to find a place for him. That is not the situation you want to find yourself in. Plan ahead, get on wait lists. Even if they call with a room, you don't have to accept and can still be on the list.

I realize that MC may be out of financial reach for many. You need to get legal advice on eligibility for Medicaid and then add that pay option to the criteria for facility placement.

Our journey on the dementia road was very easy compared to what most of you caregivers experience.

Please have a plan in place for a move...even if you never have to use it, it will give you some peace of mind should an emergency arise for either your LO or you.

Trigger warning: Caregiver Death

Here's an example of the danger of attempting to care for a PWD who is violent.

Thank you for pointing out to me the household costs of keeping DH home. I am in the process of getting him placed, and the constant guilt I'm feeling is overwhelming. Yes, my floor in my kitchen needs to be replaced because of the constant peeing getting under the laminate flooring and ruining it. The bathroom has several issues going on due to flushing of items down the toilet that shouldn't have been, feces and urine in too many places that shouldn't have been, and quick fix adaptations made to the shower/tub that need to be replaced with more appropriate updates. Then we move to the things that will need to be replaced in the bedroom! Bed, nightstand (again....pee), and some other things.

Thank you M1 for this discussion. Am I understanding correctly that MC Facilities won't take a patient once they are not ambulatory? My plans were to keep my DH at home until he could no longer get up on his own (I have major back issues from a failed back surgery) or he became unmanageable due to behavior issues.

Please enlighten me. Thanks.

I think this varies among facilities. My mother's MC accepts wheelchair bound residents but will add fees to their "all-inclusive" monthly charge if the resident needs a 2-person assist to get up or if she requires hand-feeding. They will not keep someone who is bedbound unless he or she is actively dying and family can provide 24 hour assistance. It's a staffing issue.

I am very close to placement in MC for my wife and I have come to realize that SOMETIMES it is more caring to move someone to MC. Our marriage was not great, so I was concerned about making this decision for selfish reasons, but she is upset with me thinking I am having an affair, and she is aware that she has memory problems, so she is OK with moving to a "rehab for memory". I think and hope that it can be a positive experience for both her and I. She gets the good feeling of thinking she can get better, and I get to have activities with my grandkids again. Even thinking it could be a positive thing it is still hard because it is such a change after 49 years of marriage. I truly respect those that keep their spouses at home and those that move them to memory care. There are so many reasons for each. It is such a hard decision.

My dh was placed in MC days after his 60th birthday. He was still fully ambulatory and independent in self care (not bill paying, food prep, etc., but feeding, toileting and such). I placed him for a variety of reasons but:

cons of home care: loss of privacy, strangers trying to "fix" household habits and move items, living with signs throughout the home (feeling like living in an institution), cost, the constant time drain of trying to arrange staffing, still serving as backup caregiver even when paying for staff, loss of income (I was also just turning 60 and working)

cons of placement: social judgement, expense, loss of a degree of companionship

pros of placement: less worry (I was concerned dh would get arrested or in a fight on his walks while I was at work), social outlets, activities, having someone else responsible for staffing

Pros of MC:

Safety: (actually for both the PWD and caregiver), DW wandered, tried to eat or drink non-eatable items and I was exhausted trying to monitor her 24/7. I am a recovering alcoholic with 40+ years of sobriety but I know I was on very, very thin ice with my sobriety when DW was home due to the stress, loneliness, isolation and exhaustion of being a 24/7 caregiver. If I had picked up a drink it would have been a disaster for both of us.

Decreased conflict with LO: It was a constant struggle to get DW to bath, clip nails, take medication, etc. and I was always the bad guy for managing these personal needs.

Socialization and activities: I could take care of DW’s personal needs but I could not also be an activities director or provide much socialization even though I tried to fulfill these needs.

Cons of MC:

COST!

Loss of companionship.

Note: At my DW’s MCF I have seen multiple people admitted that are in wheelchairs and some that I doubt could assist with transfers. I know they use hoyer lifts for some residents.

I sm overwhelmed by this thread...in a good way.

The costs, in addition to the financial ones listed (I think of the cost to replace my furniture as one) are enormous. How do you affix a cost to spending 3 hours in the middle of the night trying to figure out a fiblet surrounding the fact that no, his Cpap is not a trumpet, and valves are not missing. Or convincing him that he does not need to take his Crayolas to school?

Words are escaping me, but this is a very important post that I need to tag for future reference. If I could get past the actual how to get him there, he would be in MC now.

Thank you all. What a resource this is.

Kathy