Pros and cons of home care vs memory care--and misperceptions? For educational purposes
This came up on another thread so I thought I'd start it off. I was struck by comments that a PWD had to be nonambulatory or completely unable to perform any ADL's before they were appropriate for MC, neither of which is the case. As someone who had to place my partner under some duress and for whom the adjustment has been very difficult, I also feel defensive about it, and sense some anti-placement stigma still. So I'm just jumping in here to see what happens:
Pro's of home care: 1) Personal advocacy: no one loves her like i do; 2) Companionship even if limited; 3) Familiar environment; 4) Less costly financially
Cons of home care: 1) Increasingly hard on caregiver; 2) Limited company and activities for both PWD and caregiver; 3) Inability to simplify/control environment;
Pro's of MC: 1) Controlled environment specifically geared for dementia; 2) Trained staff who work limited hours and do not have to physically manage solo; 3) Activities modified for dementia; 4) Increased socialization; 5) ability for spouse or family to not provide hands-on care and just have family role
Con's of MC: 1) Financial cost puts out of reach for many; 2) Loss of companionship/consortium; 3) Requires persistent communication to function effectively; 4) Limited ability to accommodate introverts in group settings (this has been my personally biggest revelation)
What else would you add? We always come down to the fact that there's no right or wrong answer, but we all struggle with the decisions we are faced with about how to care for our loved ones.
Comments
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Pros of residential living: Free of daily care giving tasks. Can visit as a wife or husband again, not a personal aide or nurse. Give up the exhausting tasks of care.
Cons of residential living: Lack of knowledge and control regarding the details and timeliness of loved one’s care, ie, how long left in bed or sat in wet or dirty brief, amount of food intake, and what was the time spent loved one engaged in activity, conversations or interactions. Take on concerns regarding quality of care.
*Loved one lacking short term and working memory cannot self report and are oh, so, vulnerable.
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I wasn't aware either that the person had to be so far progressed to qualify for a memory care facility. No wonder caregivers are exhausted when the time comes. I think caring for someone with dementia gets so involving that maybe the severity sneaks up on the caregiver. Knowing where to make that decision is tough. Thanks for those pros and cons. Something to consider. Nothing's perfect in this situation. I am just beginning this journey with my husband (85) with Alzheimer. I'm 68.
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“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.
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This has been the toughest thing for me to handle in my own mind. My DH is completely ambulatory, and can even run/walk a mile on the treadmill at age 85. He can feed himself and (most days) warm food up in the microwave. But he has begun to have rages where he screams and throws things. I have become afraid of what may happen next. I am most definitely considering placement very seriously. We are on a short waiting list at the moment, but I have to believe that both of us will be safer when others can watch him. I just woke up to find a pill missing from his pillbox (there was a reasonable explanation, FWIW) but it scared me half to death. I had no idea he'd just suddenly decide to take pill(s) on his own while I was sleeping. Its nerve-wracking.
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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
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the gender differences and the infectious disease issues are both points well taken HB. Yes, I agree it's a very important discussion. I wonder if there is any data about women being placed more often than men based on the gender of the spouse? We have some amazing at-home male caregivers represented on the forum, but the hands-on caregiving falls so heavily to female family members....would be interesting to know more about this. I certainly agree that a lot of the MC activities are oriented to predominantly female participants.
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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.
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I would like to add to this.
I hope nobody here, and I don't think there is anyone here, that would be self-righteous enough to look down on placement. I placed my DW because I had no other choice. I have been her sole caregiver for 6-8 years down this ugly road. No help to speak of from family. My friends helped more than any family member has but you can't burden friends with your life. My wife was no longer safe there. If something happened to me or if I didn't wake up some morning my DW would not be able to survive, clean herself and would die a horrible tragic death wallowing in her own filth until she died all alone because it would be weeks or months before someone checked on us. Think about that reality for a minute!
I also was dying and my mind and body couldn't do it any longer do it by myself. Cudos and respect to those that carry their loved ones to the end but sometimes it's not possible.
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@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
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My LO was in memory care approx. three months after stroke/craniotomy/stroke rehab. There were only 3 men, including my LO in his unit out of about 30 residents, the rest women. I recognized one of the women there as a local politician. Her DH visited everyday around lunchtime which is when I would be there. It was so upsetting for me to see how distraught she would get after her husband left. Another male resident who was non-verbal and confined to a wheelchair had to be moved to a nursing home by his wife because he needed a hoyer lift and MC facility did not provide that.
Understand I brought LO home after neurosurgeon suggested that there may be improvement after his brain has time to heal. Unfortunately that was not the case. His last MRI about a year ago indicated that he had front temporal lobe damage. I've kept him home because he is still manageable. Once he was prescribed proper medication, he ceased being violent/aggressive, which was my main concern. Even though he is my ex we have been a part of each others lives for over 25 years. I will keep him home until I can't.
Placement is a very difficult thing to do and I hope to be as courageous as those here that have had no other choice, and if that day comes, I will come here for encouragement. xo
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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.
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Pros of Home Care: Initially can be less costly than MC. Outsiders/distant family/distant friends(anyone who does not have “boots on the ground” with you) often verbally supportive of your decision. Complete oversight of PWD.
Cons of Home Care: Potentially isolating lifestyle for both the caregiver and PWD as friends and family visit less the more the PWD declines. Physically taxing on mind and body of caregiver. Potential for a mishap because of exhaustion(e.g. closing your eyes just for a minute and waking to smoke coming from the kitchen).
Pros of MC: Potentially safer environment for PWD(little chance of drinking cleaning fluid, starting a fire in the kitchen because of an unattended oven/stovetop) because there is a lack of caregiver exhaustion. Someone will be looking out for the PWD if some unforeseen illness/accident should befall the caregiver.
Cons of MC: The overall cost of a facility. The judgement friends/family/anyone without boots on the ground may pass upon caregiver for “abandoning” their “duty”. Acknowledgement/grief of the end of the old lifestyle/relationship.
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Trigger warning: Caregiver Death
Here's an example of the danger of attempting to care for a PWD who is violent.
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I agree there has to be an emergency care plan for PWD. My mom (caregiver) fell & broke her femur several years ago. My stepdad (PWD) luckily could still call 911 at the time. He did forget to bring her cell phone to the hospital & didn’t know the numbers for her 3 adult daughters. Nowadays if my mom has a health emergency, he will need MC, even though the entire family (aside from me) thinks he can have someone check on him 3-4 times daily and stay unaccompanied overnight. I would definitely plan for an emergency & assume PWD is lower functioning than you think, sadly.
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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.
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As I prepare to place my DH in MC, here are my thoughts on the above mentioned pros and cons. I think replying with my feelings on these is as much therapeutic for me as informational for others!
Pro's of home care: 1) Personal advocacy: no one loves her like i do; I used to think this, but I have come to realize this is no longer my spouse, and my feelings for him are not the same as they were before FTD 2) Companionship even if limited; People no longer come around to visit, I believe he’ll have more companionship in a facility. 3) Familiar environment; Sometimes I feel the familiar environment is tough, because part of him still feels like he should function like he always did.4) Less costly financially This is probably the main roadblock of placing DH in a facility
Cons of home care: 1) Increasingly hard on caregiver; 1000% 2) Limited company and activities for both PWD and caregiver; 1000% 3) Inability to simplify/control environment; 1000%
Pro's of MC: 1) Controlled environment specifically geared for dementia; 2) Trained staff who work limited hours and do not have to physically manage solo; 3) Activities modified for dementia; 4) Increased socialization; 5) ability for spouse or family to not provide hands-on care and just have family role
Con's of MC: 1) Financial cost puts out of reach for many; This is the biggest issue for me. 2) Loss of companionship/consortium; with DH in a facility, I can get back to activities I enjoyed doing with my friends, so this is not a con for me. 3) Requires persistent communication to function effectively; I have chosen a facility close to home, so this won’t be a problem. 4) Limited ability to accommodate introverts in group settings (this has been my personally biggest revelation) at this point he’s not interacting with anyone at home, so whatever he does in the MC will be just fine
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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.
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I toured a dozen places ahead of dad's placement. CCRCs, stand-alone MCFs, and MCF/SNFs. Only two would accept someone who was used to being in a wheelchair and could assist in transfers to and from and get around using their feet or wheeling.
YMMV.
I'd do my homework now if you feel strongly that you'd prefer a MCF to a SNF. The opportunity to make that choice can disappear in a heartbeat if there's bad fall or stroke.
HB
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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.
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When the caregiver is still of working age and has to quit their job to care for a LO at home, a big expense is the loss of wages and corresponding social security accrual. I became DH's fulltime caregiver when I was 56 and won't qualify for full social security until age 67. Multiplying what I earned annually times 11 years, I estimate that I have lost nearly $500,000 in wages, not factoring in inflation. Even if I were able to work full time now that he is in AL, I have been out of the job market for too many years and am qualified for only part-time, entry-level positions. I have no idea how much my social security benefits will suffer. I will not get DH's pension because he was already retired when we met and had not elected the spousal benefit. Being a retired federal employee under the old system, he is not eligible for social security, so there will be no spousal benefit based on his wages for me.
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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.
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M1 - thank you for this very insightful information. It is great to see pros and cons organized this way, and posts from others on this thread are very helpful as well.
The biggest con (pun intended?) is money, money, money. My last name is not Rockefeller; I am still very mystified how ordinary folks take on a $5k-10k per month expense like it is no big deal. Also, Medicaid only pays for skilled nursing in my state, not strictly memory care. And then, only once we have spent down our funds.
As a result of the ridiculous cost, along with the government hoops one must leap through to obtain help, I have chosen to ignore the existence of memory care facilities until I am absolutely painted into a corner.
Bill_2001
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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
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First I just want to note that the MCF I chose for my DW was a bit more expensive than others but they assured me that DW could stay to the end. They now use a hoyer lift and hand feed her at no additional charge.
Now on to the real subject. As for home care I have noted here many times that my DW was often agitated and confused at home. I felt the house was a trigger for her, she thought she should be be doing her usual activities of hobbies and housework there but could no longer understand what those things were. She was notably more relaxed and calm at her MCF from the beginning. I realize this is going to differ widely for each PWD, but those thinking about placement should consider if this might be the case for their LO.
Some may remember that I was the guy who developed a serious (and potentially deadly) skin disease due to the stress of caregiving. A case study in caregiver burnout.
Finally I suggest one looks at placement as though they were the one with dementia. I know my DW would have provided excellent cared for me until the end. But when I would have gotten to the point she was when I placed her I know I would want her to place me. For her benefit as well as seeing to it that I had good 24/7 care. In her state now she is completely unaware of the passage of time, or of where she is, of who I or anyone else is. In her current state having her home would be entirely for me (and I suppose our finances) and certainly at a detriment to both of us IMHO.
We are fortunate to have the financial resources to pay for my DW's care and I'm sorry the many for whom money is a major consideration. For what it's worth, those resources were meant to pay for an eventful retirement for us both, not for an MCF, and a lonely Stage 8 (sorry if that sounds insensitive).
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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.
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The cost is overwhelming. I M in the same place. I’m 67, DH is 80. Any facility is out of our range and that’s a hard core fact.
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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
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The costs are enormous. I am in Washington State and many of the MC facilities require 2 years of privet pay and then will except Medicaid and I have been told that if needed they will except it sooner. I have been told by a lawyer that there are protections provided in the law so the spouse is not destitute. Still that is a lot of money but it seems more manageable then over $100,000 dollars a year for who knows how long. I know every state is different but he said the laws have change because a lot of people were getting divorced to save some assets. I don't know if all this is right but it may be worth looking into. Even if you can afford MC it is still a very personal decision.
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The cost of MC is staggering and scary - I'm also in Washington State, outside of Seattle, and the amount that a "community spouse" is allowed to keep from being impoverished is frighteningly small given our high cost of living here. If our spouses had cancer or another "illness", there would be no requirement to pay down all our assets in order for them to get care/coverage from Medicare. For some reason, those who are diagnosed with dementia are placed in this strange place where there is no financial support for them or their families until this paydown happens. For years, I have seen glossy, fancy looking MC facilities springing up in the suburb where I live. A little research showed me that many are owned by private equity firms who make huge profits. The system is not working for us - but it is working for those looking to profit at our expense. Sorry to rant here - but changes in this system need to happen!
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Linda, one thing in your post bears correcting and shows why this discussion is so important: the spend down is not for Medicare coverage, but Medicaid, and would in fact also apply for other illnesses for which custodial care might be needed. Medicare simply does not cover long-term care for any illness. Dementia is not singled out in this way, it is just the most common. But the same spend down rules would apply for stroke, MS, ALS, muscular dystrophy, cerebral palsy-a myriad of other conditions.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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