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Hewitt

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Winston-Salem
I'm just curious as to how others have handled home healthcare in the last stages of ALS. My sister receives Hospice care, but they only come out 3 times a week to bathe her, and her needs continue to increase, so Hospice told my brother-in-law that he must hire home healthcare providers for at least twelve hours a day (11K a month). They would actually prefer that she go to a nursing home for round-the-clock care, but in her area that would cost $20-25K a month. She is currently in a nursing home while they get home care set up, but this augurs to be ruinously expensive for a family with children at home and in college. Since ALS tends to strike when people still have considerable financial obligations, how do most people handle this sort of situation? Deplete the remaining spouse's retirement funds? Sell your house? ALS is cruel enough without leaving financial devastation in its wake.
 
I cannot speak to this for ALS, but my mother has an aide because she is in a wheelchair due to a stroke and cannot walk. (Thankfully, she recovered fully in terms of language and cognitive ability). It is nothing like 12 hours a day, more like 6, split into different times of day. My parents are paying out of pocket @ $18/hour, and luckily can afford it. My mother jokes that she is spending our inheritance and we tell her we fully support that.

Hospice telling someone they have to get 12 hours of care daily is something I have never heard of. Often, it is the family who cares for the person, whether cancer, ALS, or other illness. I would revisit with them, and in particular, the reason why they are pushing this.

If additional care assistance is needed, maybe you would be able to start with 3 hours in the morning and 3 hours in the afternoon or evening? Most services have some sort of minimum for a shift, such as 3 or 4 hours.
 
Hewitt,

First off, it's not hospice's prerogative to tell your brother how to care for his wife. They can advise, but he must do the consenting. The question is how much help he and any other family/friends who are helping out need and want, from 0 to 60. That's it.

Even if he wanted 12 hours a day, 12x18x30=$6480 by my calculator, so not sure where this 11K is from, unless hospice is trying to sell your brother into the home health side of its agency, taking the usual handsome markup.

If he needs decision support, the social worker/discharge planner at your SIL's SNF might help, and/or an independent senior care advocate.

We [my son and I] had a student for a couple of hours most days to do range of motion, massage, help with the transfer from bed to wheelchair and feed my husband so we could get a few things done at home. You will find many other models if you read the threads. Every situation is different.

Best,
Laurie
 
Before I start answering your questions, since it appears you are in North Carolina, you could try contacting the Joe Martin ALS Foundation in Charlotte. They specialize in providing volunteer home health assistance to PALS. Their phone number is (704) 332-1929. Their "How to Get Help" page is: https://joemartinalsfoundation.org/how-to-get-help

Now, for your questions:

how others have handled home healthcare in the last stages of ALS.

We scheduled shifts by family, friends, and hired care workers. As my PALS' condition progressed and her needs became more complex, we worked nurses into the rotation. In the last months she had a nurse with her 24/7 (three 8-hour shifts), twice-daily visits by home health aides, as well as scheduled visits by family and friends. I was the only one who knew every aspect of her care, so I trained everyone, worked from home a lot, and was never more than an hour away from home.

Since ALS tends to strike when people still have considerable financial obligations, how do most people handle this sort of situation? Deplete the remaining spouse's retirement funds? Sell your house?

We know some PALS who had life insurance policies, most (if not all) of which policies have provisions allowing benefits to be tapped in the event of a terminal illness.

We know some families who sold their homes in order to move closer to their extended families, making use of both the sales proceeds and the caregiving resources of their extended families.

We know one couple who sold their home and used the money to build a new house and hire care workers in Costa Rica. (Very adventurous!)

Most people have managed to stay in their homes and use their monthly income (every penny of it) to pay for care, which is what we did.

One thing we learned is it is much, much less expensive to find and pay your own care workers (by placing a want-ad on indeed.com) than it is to hire an agency. If you cover 8 hours a day with family and hire three licensed practical nurses (LPNs) to cover the remaining 16 hours, it will cost only a fourth of the $20-25K a month for a nursing home, and your PALS will receive much better care. (accd'g to nursegroups.com, "starting salaries for LPNs in North Carolina vary from $20,000 to $28,000"). For the cost of your nursing home, you could hire 10-12 full-time home nurses--far more than you need.

Depending on the complexity of the care needs, you might be able to find unlicensed care workers who will work for even less money, but you will need to be prepared to work with an unreliable labor pool, as many unlicensed care workers have been known to abandon PALS without notice, especially if the patient's needs are complex. In the final stages, many PALS want to hire nurses, respiratory therapists, or nursing students if they can.


My sister receives Hospice care, but they only come out 3 times a week to bathe her, and her needs continue to increase, so Hospice told my brother-in-law that he must hire home healthcare providers for at least twelve hours a day (11K a month). They would actually prefer that she go to a nursing home for round-the-clock care.

If what you're saying is accurate, it sounds like the hospice is short-changing your PALS. Please see my previous post about the care that a hospice is supposed to be providing: https://www.alsforums.com/forum/general-discussion-about-als-mnd/37355-myths-about-hospice-care.html

When our hospice tried to short-change my PALS on the care she received, we alerted our state government, which ordered the hospice to provide 16-hours per day of nursing shift care plus twice-daily visits by home health aides. Other PALS have received similar orders. See attached. I do not know what the procedure is in North Carolina to challenge the level of care a hospice is providing a PALS, but you might want to look into it. If the hospice wants your PALS in a nursing home, it sounds like they think she needs nursing shift care, in which case it is their job to provide that care at home. (The federal government’s December 16, 1983 Hospice final rule states that ‘‘hospices are required to provide virtually all the care that is needed by terminally ill patients.’’ (48 FR 56010)) Thus, for severely disabled hospice patients who require continuous in-home nursing care as a medical necessity, providing “virtually all” of that medically necessary care is a federal mandate. If your PALS' hospice doesn't have the resources available to provide all of the required care, they should not have accepted the patient.

Our new non-profit organization, the ALS Action Foundation, is in the process of researching the laws of all 50 states, as well as promoting the development of medical clinical standards for home health care for PALS, to create the resources that will provide a more complete answer to questions like yours. Unfortunately, we are just starting this work, and there are PALS who need the answers now. If you want to send me a private message, I can try to find an attorney in your region who may be willing to volunteer some research time, but finding free legal help isn't easy, so I can't make any promises. You may have to get on the phone with your elected representatives like I did and be prepared to fight for your PALS' rights.
 

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I wondered about that cost ($30/hr), because I had 24 care for my mother for $18/hr, so the price quoted by Hospice and the agencies they recommended (not affiliated with Hospice) seemed high. As for the demand that he get 12 hrs of in-home care or full-time nursing facility care, that stemmed from their assessment that he could no longer care appropriately for her at home, which made her an "at risk patient". My family is actually going to have to pay for this care, and the whole situation makes me heartsick, but I am glad that my sister will finally be getting the care she deserves.
 
Thanks so much - you have given me much to think about, and I really appreciate it. I do live in NC, but my sister is in MA, and the Hospice there has chosen to work with me because they have a very difficult relationship with my brother-in-law. It has been hard to try to make arrangements for her care at such a distance, but my brother-in-law is also running interference at every juncture, so it has been a mess. I believe the stick they are wielding is that they have reported my BIL to Social Services for inadequate caregiving, and they will not allow my sister to return home without the recommended level of care in place. I don't see how any family could really provide 24 hr care without professional help for a totally bedridden, quadriplegic, uncommunicative person with a feeding tube, but my BIL has been convinced he could do it all and was reluctant to hire additional help, despite our pleas that he do so. Hospice previously said that they would try to line up some volunteers to help with minor chores, but they never found any candidates, so my BIL has been soldiering on as best he can (which is sometimes inadequate). There has never been any suggestion that Hospice would do more than send aides out 3x a week (with one nursing assessment per week), and they told me that one reason why they were removing my sister to a nursing home was because they were having to send aides out twice a day to check on her and could no longer do that. I have heard others say that some Hospice groups actually provide a greater range of services, and I don't know if that is an option where they live, but it is clearly something we should look into. Thanks again--
 
You've identified a much bigger problem than helping hands. If the hospice is communicating with you instead of your BIL, and reporting him for neglect, and making decisions about your sister's care setting, you really need to have a senior/disability services person involved in your sister's residential jurisdiction. When the end of her life or some other decision point comes, this remote control/proxy situation could be a real problem, possibly even if you are in MA.

Just for the record, you can and will find people here who have provided the care that you describe, for the kind of PALS situation that you describe, until the end. "Professional help" may or may not add value depending on the context. Regardless, you want to do right by your sister, and fix any gaps that exist.
 
they have reported my BIL to Social Services for inadequate caregiving, and they will not allow my sister to return home without the recommended level of care in place.

Wow. How stressful. It sounds like the hospice, not the BIL, may be the party guilty of inadequate caregiving. I'm not a Massachusetts lawyer, but you might want to find one and show them the below rules and get their advice.

The Massachusetts State Hospice Manual (http://www.mass.gov/eohhs/docs/masshealth/regs-provider/regs-hospice.pdf), section 437.422(B) states that the patient's hospice plan of care "must include all services necessary for the palliation and management of the terminal illness and related conditions, including the coordination of all in-home supports." Section 437.421(D) provides that "A hospice may arrange for the provision of certain services on a contract basis, including highly specialized nursing services that are provided so infrequently that the provision of such services by direct hospice employees would be impractical and prohibitively expensive." Thus, it would appear no hospice in MA should ever be short-changing any patient of necessary care.

Of course, the hospice wants to be paid. Section 437.424(A)(2) states that "The continuous home care rate is paid when a member receives hospice services consisting predominantly of nursing care on a continuous basis at home or in a nursing facility. Home health aide or homemaker services or both may also be provided on a continuous basis. Continuous home care is only furnished during brief periods of crisis as described in 42 CFR 418.204(a) and only as necessary to maintain the member at home. A minimum of eight hours must be provided in a 24-hour period to qualify for the continuous home care rate."

The hospice may be concerned they won't get paid if the continuous care is provided for more than a few days. However, 42 CFR 418.204(a) defines "period of crisis" as "a period in which the individual requires continuous care to achieve palliation and management of acute medical symptoms." As you can see, this rule is broadly worded to ensure that a hospice will be able to provide continuous care whenever it is necessary.

In the case of my PALS, the state regulators adopted the finding of a neutral physician expert that stated the following: "According to Newman and colleagues 'Continuous care most commonly is provided for two to three days; however, it can remain for a longer period of time if the acute medical crisis continues and the goal is for the patient to remain at home.' The authors note that intensive home hospice services can be necessary to meet the goals of the patient."

I'm very concerned about a hospice that withholds necessary care and then blames the family for not providing enough. What a horrible situation. You might try calling another hospice and getting their assessment. It's possible your sister's hospice just doesn't know how to properly handle a patient like her.

In any event, I agree with Laurie: what you're doing can't be done effectively from another location from your sister, and your BIL seems to be losing the battle with the hospice. Someone competent needs to be dealing with this at ground zero until it gets fixed.
 
I obviously don't know all the details of what is going on between your BIL and the hospice or the " inadequate care" of your sister but it sounds like your BIL is doing the best he can to keep your sister at home and care for her. In his defense, it sounds like this hospice is also at fault for her inadequate care by not providing at least more of the care she needs. Reporting your BIL to social services and removing her from their home sounds pretty extreme. Telling him he must provide 12 hours or more of hired help 7 days a week sounds pretty extreme. I wonder how many members of this forum have even half that amount?
We live in Massachusetts also and I have found that the majority of the professionals from our VNA that have come into our home have had more of an attitude of being our supervisors, wanting to take control of our decisions, rather than one of helping . I have found most of them unknowlegable regarding ALS and limited in their skill set. We all want the best care for our PALS but I'm not not sure it is possible whether it's at home, in a nursing home, or a hospital. How many hours of help do you and your BIL think is needed to improve her care at home and would that be financially possible?
 
[/QUOTE] you really need to have a senior/disability services person involved in your sister's residential jurisdiction.[/QUOTE]
Do you know what sort of agency typically deals with senior/disability services? Elder/Senior Services or Social Services? I tried searching the state and locality website, but it wasn't clear, so I may have to make some calls.

[/QUOTE]When the end of her life or some other decision point comes, this remote control/proxy situation could be a real problem, possibly even if you are in MA. [/QUOTE] Actually, her husband is her health care proxy and health care power of attorney, so I doubt I will be consulted for end-of-life issues. I think they just find it easier to work with me right now, and I was identified as someone who would pay for her care, so they have turned to me as an interested party until the situation is stabilized.
 
We live in Massachusetts also and I have found that the majority of the professionals from our VNA that have come into our home have had more of an attitude of being our supervisors, wanting to take control of our decisions, rather than one of helping . I have found most of them unknowlegable regarding ALS and limited in their skill set. We all want the best care for our PALS but I'm not not sure it is possible whether it's at home, in a nursing home, or a hospital. How many hours of help do you and your BIL think is needed to improve her care at home and would that be financially possible?

That's an interesting observation, Kate. I have only spoken to the nurses and social workers involved, and they seem reasonably knowledgeable and committed to my sister's comfort. They have also solicited my input frequently and included me in team meetings to get my feedback. I am a bit surprised at their hardball tactics now, but my sister was not being turned, bathed or changed nearly often enough, and she was beginning to experience skin breakdown and bedsores as a result, so I think they are just trying to act in her best interests. As for the number of hours of care required, I would think that 4-6 hours a day would be fine if her husband could be more vigilant about maintaining her personal hygiene and preventing bedsores during the rest of the day. For a number of reasons, a skilled nursing facility would probably be the best option right now, but her husband wants to keep her at home and is understandably reluctant to commit 20K a month for an indeterminate time when he has two college-age children and his own retirement to prepare for.
 
They have also solicited my input frequently and included me in team meetings to get my feedback. . . . I would think that 4-6 hours a day would be fine if her husband could be more vigilant about maintaining her personal hygiene and preventing bedsores during the rest of the day.

If they are listening to you, you should not underestimate the amount of outside help your sister may need. Under your formula, the husband would be providing 18-20 hours of care, without a break, 7 days per week, for an end stage PALS. Such long shifts are probably medically inappropriate for the patient. Could you imagine a hospital assigning the same, single nurse or CNA to care for your sister every day for 18-20 hour shifts, 7 days a week? Think about what you would you say to the hospital if you saw them staffing your sister's care that way, and that is what you might say to the hospice.

For a number of reasons, a skilled nursing facility would probably be the best option right now, but her husband wants to keep her at home.

The question isn't what you or the husband think is best. The question is what does your sister want? Warehousing disabled and dying people in facilities is a big problem in our society. If someone wants to be cared for at home, we must honor that choice. Not only is it usually less expensive for the PALS to receive shift care at home than to be cared for in a facility, but providing care in the home setting maximizes continuity of care, minimizes miscommunication between patient and nursing as well as among nursing staff, minimizes the development of nosocomial infection, maximizes husband-wife relationship, and optimizes psychological stability. In any event, it is 100% the patient's individual choice where they want to spend their final time in this world.

I also echo Laurie's concern about potential problems with "proxy" care workers being there at the end and not fully understanding or appreciating the PALS' wishes. In our case, when my PALS passed away peacefully in her sleep, a hospice aide was present and asked whether we should do CPR, even though she had been trained that CPR was against my PALS' wishes. I think many health professionals are simply hard-wired to take action to save lives, even in the hospice setting. However, I suspect this is a bigger risk for patients in a facility than it is for patients who are cared for at home.
 
my sister was not being turned . . . often enough, and she was beginning to experience skin breakdown and bedsores as a result.

The hospice is required to provide all necessary medical equipment, and lateral rotation mattresses are not only standard in hospitals now, but it is becoming much more common for them to be provided in the home setting, as well. My PALS, and several others we know, were provided lateral rotation mattresses by their home health or hospice agencies. Has your sister asked for one?
 
my sister was not being . . . bathed or changed nearly often enough, and she was beginning to experience skin breakdown and bedsores as a result.

That is what a hospice aide's job is! Frankly, it sounds like a crappy hospice.
 
Yes, I did presume that you, Hewitt, were not the legal representative. That is why I am concerned about you being the person contacted/on the spot vs. your BIL being physically there and the legal proxy.

In most cities, there is a senior, elder care and/or disability affairs office of some kind -- the names vary, but something apropos should be listed on the city government listing site. The county or township, whatever applies, may have one as well. Finally, the State always has an agency that at least could refer you. Not sure if you are in touch with your local MDA or ALSA or your sister's clinic, where there would typically be a social worker around somewhere.

As Kate says, it's more about quality than quantity of family care and outside help. The "wrong kind" can be worse than none, and in truth 12h daily outside help is way more than most of us have had, but if her hygiene needs are not being met, for example, in the other 12h her skin is still at risk. Your BIL/you may also want to explore other hospices or even non-"hospice" home health agencies, as well as private individuals, if this agency is not helping to an optimal extent.
 
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