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Are you Serious?

Bill_2001
Bill_2001 Member Posts: 114
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Hi Kindred Caregivers,

I just called a local senior living facility to inquire about respite care. After all, it is a new year and it would be nice to consider taking a break from caregiving, use some vacation time from work, and actually just go somewhere to unwind.

The facility I called is close to home, and here in the midwest, the cost of living is known to be a bit lower than other areas of the nation. When I shared my desire to utilize respite services and perhaps take a break from my eight-year situation, here is what they said.

There is a 30-day minimum, and many facilities are now "following this model." I have not checked on this, so I do not know if this is true overall.

The cost would be $5,200 for what they call "rent" for those 30 days. This just pays for the shared room. Hands-on caregiving costs another $3,900 for 30 days and may be higher if my spouse needs more help. Add on $700 for one month of "medication management."

As politely as I could, I said, "Are you serious?"

If this is the norm, I probably will opt out of travel again this year, and just stay the course and keep on truckin'. The cost of respite is 3 to 4 times what I would spend on my little vacation.

Forget it!

The bright side is - now I know the value I am providing my doing this work myself.

Love you all,

Bill_2001

Comments

  • Ed1937
    Ed1937 Member Posts: 5,084
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    Bill, I don't know where you are in the midwest, but I'm from Indiana. My wife was in a nice MC, and the cost was about $5300.00 per month. This took care of everything except personal items like soap and shampoo, etc. I think maybe you should inquire at other facilities in hopes of doing much better. It's been a year and a half since she passed, so maybe it is slightly more costly now, I don't know.

  • Chammer
    Chammer Member Posts: 140
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    @Bill_2001 is your wife on hospice? Respite care is a service provided as a benefit.

  • CStrope
    CStrope Member Posts: 487
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    Bill, I don't know the exact cost, but I know respite at a facility comes with a lot of "what ifs" to think about. I have people constantly tell me I should try putting DH in respite for a while to give myself a break......they think it is just so easy.

  • Bill_2001
    Bill_2001 Member Posts: 114
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    Thank you for the suggestion. She is not on hospice at this time. Adult day care provides 3 days of care per week while I work, which is very helpful. I was hoping to (maybe) consider a trip this year, but the cost of overnight care is staggering. There may be less expensive respite available, but I wanted to share the details of this inquiry. It was very jarring. The representative I spoke to was so smug and deadpan when quoting these figures that I just had to share.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,404
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    I don’t know what respite is here ( central Illinois) now. I do know that my parents AL has switched from all inclusive to a care needed concept. Medication management appears to be included in the base cost and my parents are listed at the lowest level of care needed. The cost for a two bedroom is now $5500 a month for one person and the additional person is $867. Mom gets some sort of market adjustment to get that $867 rate due to the length of time they have resided there. New second person rate is $1600. It’s just ridiculous. They got an about $75 a month increase in social security and the rent went up $400 a month.

    I would call other places if I were you about the rates. However I am not surprised about the 30 day minimum because I’ve heard that said before.

  • ButterflyWings
    ButterflyWings Member Posts: 1,752
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    Bill - does your wife's insurance offer respite? Medicare provides 30 days a year for spouses of PWD's I think (?) I used a week in an emergency situation once. And if your LO is a veteran, they also are entitled to 30 days of respite annually if I'm not mistaken.

    Worth checking, And speaking of worth, you are so right to note the value of the service we provide at home with an expectation that it costs us nothing (not true), and shouldn't be compensated. Wouldn't it be something if spouses who choose to caregive at home could be paid just a fraction of that $5-$10k a month fee for the typically superior care we provide? We could afford to pay living wages to a person or 2 part time to give us the health breaks needed to prevent dementia taking 2 lives at once. But what would big pharma and the medical machine do without this moneymaker- the dementia cash cow industry?

    Please look into her insurance options for respite and also call your area agency on aging, or local Senior Services. There are programs in many areas that can at least allow you a week or 2 to travel as you really should do in 2024. You deserve a break!

  • Joe C.
    Joe C. Member Posts: 944
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    Bill, I live in MA and I know that all the all the MC facilities require a 30 day commitment but some skilled nursing facilities will do shorter stays, even for just a couple of days. Perhaps try a try a with different type of facility.

    Also Rhode Scholar has some respite grants to help caregivers pay for one of their programs. See link below.

    https://www.roadscholar.org/about/financial-assistance/caregiver-grants/

  • harshedbuzz
    harshedbuzz Member Posts: 4,359
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    @Bill_2001

    I am not surprised.

    When I looked for what was initially to be respite (but became placement by the time I talked mom into the need to place for her safety-- almost 7 years ago and pre-COVID (which changed everything)--

    Respite in an AL or MCF had an almost universal 30-day minimum. There was one place where you could negotiate a 2-3 week stay during slow periods. My Plan B was a SNF where dad had stayed before that agreed to accept him on-the-fly assuming there was room at an out-of-pocket $500/night until I was able to get through the process of admission to my preferred MCF.

    When I was touring MCFs for respite/placement there were still a few that had an all-inclusive fee structure. Some of the pricing tiers were absolutely insane-- number of medications administered as if it's more difficult to give a person 3 pills instead of 2, escort to dining room/activities and my favorite "2-person lift". The last is kind of a trick question, for the safety of all involved-- everybody should be a 2-person lift.

    Pre-COVID, COL seemed to have a significant bearing in pricing. There was a member here whose DH was in the same brand of corporate MCF as dad. I live in a part of the state where the COL is considerably higher than she does, and the monthly fee reflected that-- we paid about $7200/month where she was paying $5500. My aunt who was living in a very nice place just outside of Boston was paying over $10K/month in a MC unit.

    That said, many people left this kind of work because they can do as well or better elsewhere and that has meant facilities are paying higher salaries to attract and retain staff. I have a friend whose church is sponsoring a family of refugees from Afghanistan. Dad, mom and son all work at a large CCRC. Dad has been promoted out of dishwashing to various assignments-- cooking, driving and even running errands-- and makes $20/hr. Mom, who is still learning English and is illiterate in her own languages which limits what she can do, works in housekeeping and makes $15/hr. The 16-year-old son has an after-school position where he runs food to the dining room and residents' rooms and makes that same as mom. Not only that, the facility runs a bus to the high school to collect the kids who do this to avoid them having to find their own transportation. My cousin's daughter had this as her after-school job 6 years ago at the same facility and made minimum wage and had to make her own way there.

    When my friend cared for her mom, she hired mom's regular aides for weekends with a nurse friend of ours picking up a few shifts to help pay for her kid's tuition. My neighbor did this for his wife with MS when he needed to travel for work. He tended to find people word-of-mouth or via care.com which was less expensive because he only paid for shorter periods.

    I'm told that respite can be part of hospice care. I'm not sure how that works or if it applies to your situation.

    I hope you can find a way to make this work for you.

    HB

  • Mimi50
    Mimi50 Member Posts: 139
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  • Mimi50
    Mimi50 Member Posts: 139
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    Those that you are caring for. Are further along in stages than my husband is. The only way any respite care would be possible. Is with the Veterans Administration for my husband. I am sure it is not easy to get either. The other option would be to have friends. Of my husband’s stay with him. Or our 26 year old son. Neither of those are what I would want to do.

  • Beachfan
    Beachfan Member Posts: 790
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    Hi Bill,

    I live in NE PA, at the “ base of the Pocono’s”. Before DH was placed in Nov, 2021, I had inquired about respite care. At the time, there was a minimum stay of 10 days (maybe 2 weeks). The fee was a daily pro-rated amount, based on the all inclusive monthly rate. (About $200. to $250./ day, all inclusive.) Since I was on the fence about permanent placement at the time, I was looking at a 30 day respite, so I could have a better grip on what to expect for DH and for me. There were some medical requirements (TB test, COVID test, Dr. recommendation for a locked facility). This was a stand alone MCF (only served Alz./dementia patients). During the time DH resided there, several residents came and went, on respite, while family members tended to other activities. I would keep researching; don’t give up. You deserve some respite yourself.

  • Kibbee
    Kibbee Member Posts: 229
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    I have also been thinking about a respite stay for DH. First, to have a break longer than a weekend so I can visit distant friends & family I have not seen in a few years. Secondly, to see how he fares in facility based care. And thirdly, to see how I fare when I am being something other than a 24 / 7 caregiver. I’d like to think I’d do fine, hit the ground running and go, go, go if I had a chance. But who knows, maybe I’d feel a bit adrift without my caregiving gig.

    In my thus far limited search for respite I found one place that would do a two week stay, but most require 30 days. Prices ranged from $150 per day, to $225 per day. Yes, the cost is high but it is a lot less than paying for an in-home caregiver if a break longer than a weekend is needed.

    I also found the logistics of setting up a respite stay to be a bit daunting. The paperwork, the need for another visit to his PCP for medical clearance, chest x-ray, meds set up, etc, then physically getting him to the facility. We have a wheelchair van but I find it a bit stressful to load him in and out, secure his wheelchair, plus worrying if the old beast will start (the van that is!) And if the facility doesn’t have a lift for him to use then I’d have to load ours up and haul it there and back as well. Still, the idea of a significant caregiving break is attractive.

  • wizmo
    wizmo Member Posts: 96
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    In my search, a minority of facilities even offered respite as an option and I was looking mainly at stand-alone MCF. Most had 30 day minimum so PWD had a chance to acclimate and staff had a chance to learn how to deal with new person. A couple had 1 week minimum. Some pitched this to move in on trial basis with less commitment on both sides, or a way to get quick temporary placement while looking for longer term option. Some had a community fee (500 for month, or equivalent of 1 day for week stay) on top of daily rate but were all inclusive for respite, even if they had some tiered pricing model for long term residents. Cost ranged from around 225 to 300/day.

  • ghphotog
    ghphotog Member Posts: 667
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    edited January 4

    Edit: sorry for the edit. Have you tried a residential facility? Some can be a lot less expensive and still provide the same level of care. I'm visiting one such place this afternoon. It's 4000.00 max with only 1000.00 down. I didn't ask but their website mentions respite care so maybe a place like that could give you a few weeks without breaking the bank. Just a though.

    The owner is ceritifed in Alzhiemer's care and is actually a member of local Alzhiemer's support groups through the Alz Assoc.


    Bill, I'm in the processes of touring different MCs but they all are going to be between 6000.00 + for the level of care my wife needs. I found a very good place and 5800.00 will give me the maximum care for ADLs, incontinence, meds, two doctors on site. I also think 30 days would be the minium you would probably have to pay the monthly rent charge plus a 2500.00 move in fee.

    A lot of money for a 30 day break for sure but could be worth it just to regroup and re-evaluate and about the time she starts to get adjusted and settled you would pull her out and that could also be a difficult adjustment for her.

    I hope you can find a way to get a break without breaking the bank.

  • Whyzit2
    Whyzit2 Member Posts: 55
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    Another consideration is the health insurance your DW has. It has to be one that the center accepts even though respite is a temporary stay.

  • Marta
    Marta Member Posts: 694
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    Health insurance doesn’t pay for respite care.

    Longterm care insurance MAY pay for respite care in the home or in a facility.

    Medicare will pay for respite care for individuals who are on Hospice.

  • ThisLife
    ThisLife Member Posts: 254
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    I'm in FL. When I used respite, most require 30 days, but a few offered two weeks. There were some that offered three tiers and some all-inclusive. A couple were willing to negotiate on the length of time and fee. I ran into the ones with the usury price and snooty attitude. For placement I was able to negotiate a modest reduction in price. What I did find is the ones with openings were willing to take a little less or accept two weeks rather than 30 days.

  • ButterflyWings
    ButterflyWings Member Posts: 1,752
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    edited January 4

    Thanks Marta. This explains my experience then. DH has been on hospice 2+ years and both my respite experiences (7 days and 10 days respectively) were fully covered. By his Medicare insurance and his VA health benefits. Note, I had to combine them because ONLY 5 days/a month is allowed by either. And max of 30 days/annually for each of those resources.

    So I've just discovered one more benefit of accepting hospice support if your LO qualifies upon evaluation. I have a hard time leaving him, and the respite experiences weren't perfect but he survived and so did I. We'd have been up a creek without the option both times, and I found it easier to leave him the 2nd time even though it was not the same facility. The other benefit is both our Area Agency on Aging social worker and our hospice team worked out all the logistics, reviewed options with me, and took care of all the prep required to admit him. They visited him as usual during his stays, and of course paid the bill once he was back home. I should probably use the full 30 days/a year as I reflect on this. It really is a huge blessing.

  • Bill_2001
    Bill_2001 Member Posts: 114
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    Hi Everyone,

    Thank you so much for your help and ideas. I have decided - for now - to forget respite care. I would certainly use it if I need to recover from a health issue of my own, but the cost and logistics of it seem way over the top just to "take a break."

    To clarify - neither my wife nor I are veterans. So there goes that option.

    Health insurance and Medicare do not cover respite or memory care in any capacity. They get out of covering for it by labeling it "custodial care." To them, it is not a health problem if someone needs 24/7 help with activities of daily living (ADLs). Ironically, my wife's illness is the most detrimental situation either of us have ever been in. Alas, it is not what they consider a health condition. Sigh.

    Medicaid comes into play if one is impoverished and has little or no income. Children can sell Mom's house to pay for Mom's care, but what is a spouse to do? I work, so I have a decent income: Way above Medicaid's limits. But not $10k extra per month. This condition truly has people like me stuck between a rock and a hard place.

    "Get paid to take care of a family member." Do not be fooled by these promising ads - they require that your loved one is already on Medicaid (not Medicare), and that your loved one is NOT your spouse. Gotcha!!!

    I appreciate the suggestion about my wife's health insurance - to be sure the facility accepts it for your loved one's medical needs. I interpreted that suggestion as meaning that the facility would use that if your loved one had a medical episode while in their care, not to pay for the facility itself. This is a good thing to check before using a respite facility.

    Very good feedback. I appreciate and love you all.

    Bill_2001

  • Jeanne C.
    Jeanne C. Member Posts: 805
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    edited January 5

    @Bill_2001

    Medicaid comes into play if one is impoverished and has little or no income. Children can sell Mom's house to pay for Mom's care, but what is a spouse to do? I work, so I have a decent income: Way above Medicaid's limits. But not $10k extra per month. This condition truly has people like me stuck between a rock and a hard place.

    Every state is different, but look closely at the Medicaid rules in your state (if you haven't already - if you have, just ignore me). We're in Delaware. Using a CELA (and a Medicaid compliant annuity) I was able to move our assets into my name only. My husband now has no assets and only his Social Security as income. My income and our home has no impact on his eligibility. He's on Medicaid and it covers a lot (healthcare, meds, meals, a home health aide, and 2 weeks of respite per year). https://www.medicaidplanningassistance.org/state-specific-medicaid-eligibility/

  • RickM
    RickM Member Posts: 115
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    Also folks should check out this:

    My understanding is that while this is basically set up for those who qualify for Medicaid you can pay out of pocket for it. While it is still quite expensive, in my area, Seattle, it is still quite a bit less than private care. And, although it's goal is to help those caring for those at home, apparently, if you reach the point where you can no longer keep your loved one at home, it will include care at a facility.

    I found MC close to my home so I did not pursue PACE any further. But it sounds like an alternative that might be a bit more affordable if you can't or don't wan't to go the medicaid route.

  • Bill_2001
    Bill_2001 Member Posts: 114
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    Hi RickM, Thank you for the suggestion to look into PACE. I found these eligibility requirements in my state (Missouri), and I am baffled by the requirement that my wife not be enrolled in Medicare Part C or a Medicare prescription drug plan. Huh? So they expect someone with dementia to not have prescription drug coverage. Sigh - there is always a catch in Missouri unless one is flat broke.


    Enrollment in a PACE program is voluntary. To enroll, individuals must meet the following criteria:

    • You are 55 years old or older.
    • You live in the service area of a PACE organization.
    • You are certified by the state in which you live as meeting the need for the nursing home level of care.
    • You are able to live safely in the community with the help of PACE services at the time you enroll.

    The average PACE participant is 76 years old and has multiple, complex medical conditions, cognitive and/or functional impairments, and significant health and long-term care needs. Approximately 90 percent are dually eligible for Medicare and Medicaid.

    People interested in enrolling in a PACE program do not need to be enrolled in Medicare or Medicaid, and no financial criteria are considered in determining eligibility. However, individuals cannot be enrolled in a Medicare Advantage (Part C) plan, a Medicare prepayment plan, or a Medicare prescription drug plan. They cannot be enrolled in hospice services or certain other programs.

  • White Crane
    White Crane Member Posts: 850
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    Bill, I live in northwest Missouri...St. Joseph. We are right on the banks of the Missouri river. On the other side of the river is Kansas. If we lived on the Kansas side we would have much better coverage as far as Nursing Home or Memory Care. A neighbor of my sons actually moved his mother to Kansas for this very purpose.

    Brenda

  • Ed1937
    Ed1937 Member Posts: 5,084
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    edited January 6

    We looked into the PACE program in Indiana. We visited a facility (housed in a hospital) that offered day care as part of the program, but we didn't actually use the services. They had a large room for activities, and IIRC three or four roll in showers in case someone soiled their pants. Aides would handle the showering. It seemed to be a very good program, but one thing led to another, and we didn't pursue it. If it is available in your area, it might be worth looking into.

    • I don't remember the qualification Bill talked about "You are certified by the state in which you live as meeting the need for the nursing home level of care."
  • LindaLouise
    LindaLouise Member Posts: 95
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    I hadn't heard of PACE before so thanks for sharing this! I couldn't find any mention of the costs of you are going the non-Medicaid route. Looks like I might need to call to find out?

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
Read more