Respite Care(8)
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Your hospice will make the arrangements and coordinate everything. The caregiver can't do this, it is a contract between the hospice and the facility. Yes, it is a maximum of 5 days but that can include a weekend. You can also usually pay privately for any extra days beyond the 5. Transportation is included if the patient cannot go in a car. Most hospices work with several facilities, they won't be able to tell you which one until shortly before, you can give them a preference but it's not guaranteed. However, COVID restrictions have made it harder where I live, respites are still happening but there has been less choice of facility. Talk to your own hospice soon about this, even if the respite is aways off --- they can give you the information particular to your area. I've heard rumors that some hospices are no longer doing respite, but I have no personal knowledge of that.0
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Fortunately my Hospice is still offering Respite Care... As far as Covid, I'm thinking its safer now than its ever been now that precautions are mostly accepted by everyone...Even the screening into doctor's offices & medical facilities is very cautious...Yes there is always a chance but I feel to a lessor degree than previously.....0
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The Hospice social worker is the one who arranged these for us. You can suggest your first & second choice places, but there is no guarantee. We often were sent to their own care facility, which was very nice & private.
For those not on Hospice, being sent to an inpatient rehab facility after a hospital stay provides an affordable respite. The Medicare co-pay for us was just $25. daily (up to 20 days). Length of stay is "outcome based," meaning they have to be judged to be benefitting from the care. So you wont know. Ours usually lasted the full 20 days, after which the copay increased 1000%.
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I understand that nursing home care after hospitalization would be different. Respite is to give caregiver the much needed relief of time off...I just couldn't find the specific rules, or guidelines, on line....Its like the 'best kept secret' ....So its 5 days including weekends with transportation to & from home....0
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Chappy, respites paid by Medicare are a benefit only available to those on Hospice. 5 days is the maximum, but it will depend on bed availability. And yes, transportation to & from is provided. As for how often, I think this varies by provider, but in our experience, it was offered once every other month. I'm supposing the pandemic has made it a little more difficult to arrange these. If you have any further questions, I would talk to your hospice social worker.
Inpatient rehab isn't considered a respite, but can be used as one. I know of no other way to arrange one that Medicare will pay for (if not in hospice care).
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Trying to do the right thing leads people to take drastic measures...Why should 'Respite' only be available through Hospice? - What if someone was caring for a loved one, or a person on their own, with no Hospice & they were at the end of their rope, or needed a procedure at a hospital or clinic? which could eat up a couple of days....Would you go for the procedure & leave the loved one at home in bed for 24/48 hrs??? with nobody there? Is that why there is so much ambiguity in the Respite search, on line for rules, guidelines & qualification? Or is this addressed in the Medicare reference guide? (which I have to obtain a copy) Its like the Respice opportunity is out there, but hidden in a grayed out area. I did speak to the Hospice social worker & she wasn't all that helpful & referred to to some one to follow up.6 days ago & I've yet to hear........I called the office of the ageing, same run around...The Respite thing should not be such a mystery...The only thing I know for certain its 5 Days! End Rant.........0
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The hospice social worker is the one to arrange your respite, I'm not sure why she referred you to someone else. Maybe she thought you had more general questions. Call her back and give her the dates you need. Ask which facilities they usually use and decide which one you would prefer (this isn't guaranteed but they will try.) And ask her how confident she is that they will be able to arrange that respite. Here, we have always managed to find a respite bed but not always in a facility of the family's choice. This shouldn't be too complicated or surprising for the social worker, respite is a frequently used hospice benefit.0
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I will forever praise the Hospices I dealt with, they were great and did so much.
That said, I do have a “but”. Respite was the one thing with hospice that never worked, IME. It was something they all talked about, but in fact it was on a “space available” basis, at a very few facilities, and there was never space available when I asked. They said the demand outstripped the supply, which I don’t doubt.
Of course, all hospices/locations are different, that’s just IME. If a caregiver needs to be away, for health/hospital reasons or just needs a break, that means finding another caregiver, and that can be prohibitively expensive. Yes, it stinks. Another reason why being a caregiver is hard.
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MVChappy, don't give up!
You mentioned Council on Aging (and there might be an Agency on Aging too). I called every number I could find in the resources available for seniors, and it led me to our senior services office for our community. They sent a caseworker out to assess DH, and we qualified for a whole series of services including 1)some weekly hours of in home care (can be paid to a family member, including spouse, during covid), 2) help with some safety repairs, 3) respite!
These require you to at least apply to Medicaid, but if not eligible then the local organization funds all this. He has only Medicare currently, and I could barely pay all our bills and expenses plus supporting his adult special needs child by myself after DH's sudden retirement when diagnosed 2.5 years ago. This program has been a lifesaver for the last year, even though I haven't used the respite option due to covid (until we are both vaccinated, I'm too scared to have him stay somewhere for a few days). I probably will have a hard time with respite the first time anyway, because he is an exit seeker and not too fond of strangers. But, if needed, what a blessing just to know it is available!
They just did his annual reassessment and due to AD progression we are now getting 30 hrs/weekly of in home caregiving support. Almost double the initial hours. Every city and community should provide this kind of help for families to care for elders at home if possible. Those who want that, anyway, which we do. Check your options again. Good luck!
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You know the real rub here is...This country helps the whole world and can't help it self...There are millions & millions of us and not a clear directive...I think most hard working retired Americans who after all the years of employment, owning a house, & building a nest egg, all of a sudden it counts against you with regards to Medicaid...Again I'm thinking most don't want the free meals, transportation, food stamps, along with the laundry list of entitlements...Again I think most of us want the professional help when we can no longer rise to the challenge...Just today was the first morning DW could not stand long enough for me to pull down her diaper to change her..I have her propped up in the bathroom, with her holding on to the window sill for dear life & me with one hand trying to wash her She almost fell & what if she breaks her hip...then what ???...her toe nails are beyond belief, The Hospice social worker said the nurse can cut her nails, then when I kindly asked the nurse she said Hospice does not do nails & she would need to see a podiatrist . I know of no podiatrist who does house calls, & I can't get DW down a flight of steps into a car...She has been months, & months beyond a sponge bath...She needs a shower, Hospice does not do showers. her hair is so tangled that it cannot be combed, & they told me to buy hair untangler .....I asked if it were possible to have her brought to a facility to get all her human dignity needs met....NO... I am a man that can mix cement, fix a lawn mower, & shingle a roof, I can't work a washing machine, iron a shirt, or boil water, but I'm suppose to be a care giver....I'm better now that 5 years ago, but it still is no consolation for the lack of support from the system that I paid into all my life....There are a lot of organizations, that represent seniors, you call, they listen, they refer you to someone else & that's where it ends...I think I need more than 5 days of Respite care, and from what I'm reading that too is a 'pie in the sky'......0
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About the toenails/foot care, and bathing....call your local Alzheimer’s Association and ask them for groups or agencies who will come to your home and do this. They may also help you learn how to move her more easily. These aides do exist; there’s a name for them, something like like home health care aides.
Yes, they do charge, but you do not need them every day. The cost is relatively small compared to the 24/7 respite “babysitting” care costs. The cost every once in a while could be well worth it.
I’ve also struggled with the respite care problem. There are no easy or inexpensive solutions, IME, outside helpful family (also rare at that level). There *should* be, but.
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MVChappy wrote:You know the real rub here is...This country helps the whole world and can't help it self...There are millions & millions of us and not a clear directive...I think most hard working retired Americans who after all the years of employment, owning a house, & building a nest egg, all of a sudden it counts against you with regards to Medicaid...Again I'm thinking most don't want the free meals, transportation, food stamps, along with the laundry list of entitlements...Again I think most of us want the professional help when we can no longer rise to the challenge...Just today was the first morning DW could not stand long enough for me to pull down her diaper to change her..I have her propped up in the bathroom, with her holding on to the window sill for dear life & me with one hand trying to wash her She almost fell & what if she breaks her hip...then what ???...her toe nails are beyond belief, The Hospice social worker said the nurse can cut her nails, then when I kindly asked the nurse she said Hospice does not do nails & she would need to see a podiatrist . I know of no podiatrist who does house calls, & I can't get DW down a flight of steps into a car...She has been months, & months beyond a sponge bath...She needs a shower, Hospice does not do showers. her hair is so tangled that it cannot be combed, & they told me to buy hair untangler .....I asked if it were possible to have her brought to a facility to get all her human dignity needs met....NO... I am a man that can mix cement, fix a lawn mower, & shingle a roof, I can't work a washing machine, iron a shirt, or boil water, but I'm suppose to be a care giver....I'm better now that 5 years ago, but it still is no consolation for the lack of support from the system that I paid into all my life....There are a lot of organizations, that represent seniors, you call, they listen, they refer you to someone else & that's where it ends...I think I need more than 5 days of Respite care, and from what I'm reading that too is a 'pie in the sky'......
The things you are mentioning that this country does for other places and Meals on Wheels, etc., none of them have anything to do with what you are asking for.
I'm no health care person but I have always known my entire life (and I'm almost 60) that there is no "insurance" to cover home care or even nursing care unless it's for an acute problem and even then it's time-limited.
You are asking for "more than" 5 days respite - then you will need to look into placement and all her needs like bathing, foot care, dental care, can be taken care of in a nursing home or memory care environment. But you will have to pay unless you qualify for Medicaid. Again, this is something I (not ever being involved in a medical job ever, quite the opposite) have always known. This country expects people to insure themselves or save to cover long term care. That isn't ever going to change.
If your hospice isn't moving fast enough, interview other hospices. Change if you need to. But it really sounds like you're at the end of your rope and perhaps placement would really be what's needed here. Have you investigated a permanent placement? Because no matter what, you will never get services to come to your home to do daily care the way you seem to be asking for unless you are paying for those services.0 -
MVChappy wrote:I don't know what "drastic measures" you speak of here, but in answer to what people do who don't have hospice and need to have a procedure - then they pay for respite care at a NH.Trying to do the right thing leads people to take drastic measures...Why should 'Respite' only be available through Hospice? - What if someone was caring for a loved one, or a person on their own, with no Hospice & they were at the end of their rope, or needed a procedure at a hospital or clinic? which could eat up a couple of days....Would you go for the procedure & leave the loved one at home in bed for 24/48 hrs??? with nobody there? Is that why there is so much ambiguity in the Respite search, on line for rules, guidelines & qualification? Or is this addressed in the Medicare reference guide? (which I have to obtain a copy) Its like the Respice opportunity is out there, but hidden in a grayed out area. I did speak to the Hospice social worker & she wasn't all that helpful & referred to to some one to follow up.6 days ago & I've yet to hear........I called the office of the ageing, same run around...The Respite thing should not be such a mystery...The only thing I know for certain its 5 Days! End Rant.........
If you are due respite care and you've requested it through your hospice and they haven't responded, you need a new hospice.
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The hospice we are using has a team of people to help, including a CNA. CNAs are trained at bathing and nails etc... IME, CNAs cannot clip toenails with clippers or scissors but they can file them. I think the hospice company you have is lacking.0
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With my reference of this country & its benevolence to the people & asylum seekers that infiltrate our borders, has all to do with my point...In case your unaware the US Tax payer supports the food, housing ,& Healthcare for those who come to this great land of ours. I am an average middle class blue collar worker, that supports myself & DW on Social Security...Unless your Social Security is double or triple of what mine is then perhaps that explains how you can constantly dip into your pocket & pay for services not covered...I can assure you 'self pay' facilities are a very small percentage in the big picture...Wouldn't you think that long term health care would be an obvious Federally assisted affordable program, for the average middle class person.? - No my previously statement was completely on target...0
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Instead of going through someone else to set up a respite for you that would be paid for by Medicare, is private pay completely out of the picture? I plan to use respite this spring (so I can take a much needed break) and it will be private pay. The facility has already sent me the admission paper work to fill out. When I get closer to admitting, they will send a nurse to the house to assess; then they will send additional paperwork to Mom's PCP for orders to admit for respite along with orders for medications and other medical needs; a negative COVID test and voila!
Contact your local facilities to see what their respite requirements/rules are. In my area I have four options for respite stays ~ each facility I contacted was different. All required a two week minimum stay ~ you can take your loved one out sooner, but you will pay the full two weeks. Perhaps the PCP can possibly even sign orders for podiatry cares as part of the plan of care while she is in respite?
I worked in the office at our local Hospice and the SWs always did all the paperwork and legwork to get a patient admitted to respite. I am not sure why your hospice is different unless it is a for-profit hospice?
Just one other thought. Sometimes after admitting a LW to respite, families discover the loved one thrives in a facility and the family member(s) got a much needed reprieve from caregiver duties, thus turning a respite stay into a long term stay. That is what I hope for in my situation when facilities open back up to family visits. But if not, I'll keep scheduling future respites for my own health.
Sorry if I missed something in all the threads about private pay being off the table. And Good Luck with the path you chose.
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MVChappy wrote:With my reference of this country & its benevolence to the people & asylum seekers that infiltrate our borders, has all to do with my point...In case your unaware the US Tax payer supports the food, housing ,& Healthcare for those who come to this great land of ours. I am an average middle class blue collar worker, that supports myself & DW on Social Security...Unless your Social Security is double or triple of what mine is then perhaps that explains how you can constantly dip into your pocket & pay for services not covered...I can assure you 'self pay' facilities are a very small percentage in the big picture...Wouldn't you think that long term health care would be an obvious Federally assisted affordable program, for the average middle class person.? - No my previously statement was completely on target...
This country never has done that. And that isn't going to change in your or my lifetime. Refugees and their aid have nothing to do with what your situation is.
If you want socialized medicine, you should have applied for citizenship north of here years ago, it's there in abundance. Since you are living here, you have to work within the system that has existed since both you and I were born.
The bottom line is that if she is on hospice now, your situation will end sooner than later. If you're unhappy with your hospice's responsiveness to you, call other hospice agencies. You can continue being unhappy with your hospice and limping along with their lack of help or you can engage another agency and be able to enjoy the last months of your LO's life.
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Just not getting what all the confusion is on this topic,....OK, Lets look at it as a conventional heart attack case....Person suffers a heart attack, goes to the hospital gets a stent, or pacemaker, or anything else to correct the heart attack...Their in the hospital for a week or so, then gets transferred to rehab for a few weeks until they are ready to come home....Sounds about right ???Medicare & your supplement picks up the bill....There isn't too much ambiguity.....Now flip the illness to ALZ/Dem...all of a sudden we enter into the dark bliss of confusion, helplessness, coverages, & the lack of, with the system stepping back from any care & responsibility, leaving it mainly to families as caregivers...My point is not of Socialized Medical Care, The point is there is no provision in our care health system to facilitate care for ALZ/Dem patients. Just look at all of these posts on this forum....Its Caregivers ! looking for HELP....Caregivers to turn to other Caregivers for advise, how to cope, Why??? - because there is no system to turn to so were all here feeding off each other....I really appreciate all the feedback on suggestions & idea's but getting someone to do something is another story...This week I had my usual parade of Head nurse, secondary nurse, home aid, social worker, & DW finger & toe nails still have not been addressed, the bottle of hair detangler which they advised me to get, is still on the counter unopened.....You know what I think?? - I think all of these Hospice visits are to document & substantiate their efforts to receive funding.....after all, why would you show up & go through the routine of blood pressure test & listing to your heart & lungs, only to say all is OK & leave....I'm certain I'm not alone in my experiences & observations........0
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Bring a new hospice in to take over.0
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Chappy, you are right. Medicare etc. does handle heart attacks, cancer, other illnesses—but not much for Alzheimer’s and next to nothing for caregivers. That’s the system we have to deal with. It’s not right, but it’s the way it is and it won’t change soon enough to help any of us.
We can rant, and try to change it, if we have the energy for both, but it won’t change soon. Meanwhile we have to deal with it the way it is. If I were you, I’d be looking for a new hospice, or having serious conversations with yours about why/when they’re going to do or use the things you mention.
Or ask them who else you should get to do it if they are not.
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Ah.....Status quo, going with being complacent in carrying the bolder is not the solution or answer...Why should Alz/Dem be any different that any other illness? because its not treatable? , non the less the patient requires constant medical attention...and the more we do ourselves, the more the medical society will step back....Now several posts back I mentioned 'Drastic Measures'. I give myself a good 8 on a scale of 1-10...Then there are those rare occasions where suicide crosses my mind, but not where I would be a threat to myself, & those occasions are usually triggered by other life's issues that contribute to one's fragile state....The only ace in the hole is at that time of extreme desperation, the solution is to take DW, or call ambulance and have them admitted to the ER...then the patient would be released most likely 24 hrs later in which you take the position that you can no longer care for the person....The hospital will have no problem transferring the patient to a nursing home...This course of action is far more better than taking physical actions against the patient, which I have not been at that point, but darn* close...I've been the 100% caregiver for over 5 years with no relief...Granted the first four years were rather uneventful, this year of Covid was a game changer....Its a real shame that in this day in age in the USA that there is no provision for Alz/Dem....I still can't wrap my arms around that but its what it is.....0
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I would hope that if your drastic measure is that, that you would be proactively contacting suicide prevention lines or discussing this with your care provider (your doctor, not the hospice) for options. Antidepressants work. You can call the Alzheimer's Association hotline too.
If your hospice isn't doing its job, you need to replace them. You haven't addressed that suggestion at all in these posts. If you haven't interviewed a hospice today, then tomorrow would be a great time to do that.0 -
To be clear the 'Drastic Measure' would be the hospital/nursing care route...No threat of suicide, I'm sure we all said at one time or another 'wish I had a gun to blow my head off'. in jest...The current Hospice is that of my county & the adjoining county...I have no grand illusions that bringing anyone else will solve the problem...You can't lose sight that Hospice is Palliative care and there is a fine line of their expectations....Hospice takes the place of a service that isn't there nor exists... If I didn't have Hospice, then there would be nobody else...This is the crutch of the entire thread...The medical system does not have a program to deal with Alz/Dem...Hospice facilitates 'Respite Care' just enough for the caregiver to recharge their batteries, its far cheaper for Medicare to pay for 5 days nursing home, then going through the hospital/nursing home route with the risk of once the patient gets to the nursing home their there to stay...Non professional Caregiving for Alz/Dem is a win/win for Medicare...so why would they want to create a program, where they let destiny take its course....All makes perfect sense to me....
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Hospice is the service for the end stage of a terminal illness, dementia.
There will not be a “program” for people with this disease because they live too long=costs too much money.
A pessimist like me will say that there will never be a cure, either. Look at all the money made on pills and facilities—many a gravy train would end.
Hospice doesn’t have territories where no other hospice is allowed to work. If you live in a rural area your choices may be limited though.
Best that you get your batteries recharged so you can make it to the end.
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One brain surgery can pay for a lot of Alz/Dem care....Point is, nursing homes are getting away with murder with their fees...I mean how much does it really cost for the daily needs of a person there???0
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So you have two completely different situations here:
1. Brain surgery for a potentially curable disease like cancer, cyst, or other survivable illness (even if the person ends up not being cured or dies of complications). Does not involve custodial care.
2. Custodial care for someone who has a degenerative brain disease that cannot be treated or cured and will only get worse and need more care until they die.
You have $100,000. You cannot give to both. Where do you spend that money? On the brain surgery, of course. The bigger bang for the buck is the cure/treatment, not the custodial care.
Nursing homes are private businesses that sometimes accept government money for certain residents who qualify under Medicare (limited time frame to recover from an illness) or Medicaid (indefinite time period for people who qualify). Some are for profit, some aren't. Why would you regulate a private business in what they can charge people? Or are you wanting something like a state asylum system where people are warehoused like in the old days?
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MVChappy, just a few things:
1. Applying to Medicaid does not require you, called the 'community spouse', to be destitute. You are permitted to keep the home you own and over $100,000.
2. A Certified Elder Law Attorney (CELA) www.nelf.org can assist you with long term care planning, Medicaid qualification and application, and coping with Medicaid - this is particularly important because Area on Aging, admission departments do not deal with this - many have the situation where they really need Medicaid for long term care but make or have just a bit too much. Expect to pay a well worth it but high fee of $450/hr. 'Free" consultations will acquaint you with their services but will not give you solutions.
3. As an educational tibet for anyone reading this thread, traditional Medicare does have a 5 day respite option for those receiving hospice services. Medicare Advantage plans do not all necessarily have this benefit. Read your contract before you sign.
4. The cost of nursing homes is quite astounding, but for residents on Medicaid, the facility receives far below operating costs. The private pay resident is an important part of any facility that expects to stay in business. (county or government subsidized facilities this may not be true) Therefore, many private pays, whether for profit or non profit, will require a certain number of years of private pay before granting admission because they need to offset the red ink of the time that patient may be in LTC with them on Medicaid. I am mentioning this because it is important to have the "long view" for our LO's. Nothing is guaranteed, but if you spend your money at the AL/MC/snf level and the facility has an unwritten policy of accepting Medicaid when the $ run out after several years, you are in a better position than spending all your $ at a self standing Memory Care and then trying to get into a Medicaid bed in a nursing home with no financial history (not all,, but most facilities). The power of choice. I do not mean to imply it is impossible, just more difficult. And admission will virtually always be from a hospitalization, not from home.
-No discharge or admissions social worker will point this out.
-Knowledge is power.
-transportation, heat, electricity, food, gas,3 shifts of 24 hour staff, their health insurance, their workman's comp, their benefits, their on going dementia training, facility insurance (professional, liability, fire, water etc) unemployment taxes, continuing education, specialist contracts all do add up. It helps to know the costs involved to help be able to swallow the huge outpouring of money to a facility. Spend on compasionate quality care in clean but sshabby surroundings, not for the crystal chandeliers and flowered wallpaper.
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FTD = Frontotemporal Dementia
VD = Vascular Dementia
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