Financial assistance for in-home care. Any advice?

I would not bring this woman home, especially with a feeding tube, Not sure if an aide would be able to help with a feeding tube or willing to do it. Aides have no medical training. If I am right that means at least hiring an LPN. Both working means they have to set up care in their home. Aides have lives outside of caregiving so may have an emergency. Who is going to fill in. Hopefully the agency has last minute replacements.

By 20days do you mean the first 20 that Medicare pays for? If so, she could be kept longer than that if felt she needs more therapy. Medicare pays 50% for 80 to 100 days.

If it were me, I would ask for a 24/7 evaluation. If found she needs 24/7 care I may place her in skilled nursing where her therapy may continue and she may improve. I really don't see where 2 people holding down jobs can care for someone with these health problems. They will not have a life and getting outside help may not be that easy. SWs will try to get family to take responsibility for the woman's care and say there is help but that isn't always the case.

Hi
My understanding is that Medicare will only pay for home care if there is a skill involved-skilled nursing , PT, OT Speech etc.
When the skilled care is no longer needed, Medicare stops paying.

I replied to one answer but wanted to apply to your post directly to you. It sounds like this person is going to need a lot of care. My fear for the couple is that even though they work from home the level of care may be too great. Being a caregiver of someone that needs that level of care is always a lot more than anyone can estimate. If the person qualifies for Medicaid program to cover long-term care, my advice is to find the absolute best nursing home they can and just make sure they visit very frequently and be very active in the care that person gets. What this will allow them to do is still care for them but also have periods of time for themselves so that they aren’t pulling their hair out or at each other’s throat‘s because they’re so exhausted from the constant care that’s needed. This is especially true for someone who has dementia. Dementia is a horrible thing to watch it gets very frustrating to deal with. As much as I hated putting my mom into a home it just was not possible for my sister and myself to give her the level of care that she needed Plus take care of ourselves and me take care of my family. I know nursing homes have a very bad reputation because so many of them out there are so horrible. But not all of them are and your friends can go to medicare.gov to see which homes in their area have five star ratings and then call those to see if they have any Medicaid beds available.

Degarthy, I had a similar experience after my father nearly died, was in 2 acute care hospitals, 2 extended care hospitals and rehab, over a period of 7 months.   When he came home, he was still in need of a feeding tube b/c he was unable to swallow safely.

W/o knowing anything about the couple's home area or availability of home care agencies, or discharge recommendations, I would think that everything could be arranged prior to discharge to home.  That's what worked for us.  

I researched and contacted various home care agencies and chose one affiliated with the hospital at which the second extended care hospital was housed.   I really lucked out; they were top notch, professional, knowledgeable and very helpful.

Before his release, one of the nurses at rehab taught me how to manage the feeding tube.  At home, Dad had feeding every 4 hours, a more extensive one in the evening, and then a smaller one before overnight sleep.   It was exhausting, but the assistance before rehab discharge and during home care was so good that we managed.

The speech therapist, somewhat at my prodding when she was ready to opine that Dad would remain on a feeding tube for the rest of his life, "re-examined" the situation, started Dad on a series of guttural sounds to strengthen his swallowing capability.  He came home in February, was decannulated in June, and said he wanted to celebrate with a Big Mac!

It CAN be done at home, w/o assistance but your friends would have to really alternate thier home work session.    You could also ask a home speech therapist to recommend someone to assist you.   I was so tired once that I overslept and missed the first feeding.

I would recommend your share with your friends what I did:

1.   Research extensively and find the best home care agency with a top notch speech therapist.  Ours was affiliated with St. Joseph   Hospital, but they also were in an area with top notch medical care.   Jurisdiction might be an issue; fortunately we were in the service area. 

2.   They shouldn't be shy when asking about experience, especially whether or not the speech therapist is experienced with individuals on feeding tubes, speech exercises, and with efforts to recover speech.  (Given the stroke, that might be a serious issue, so it's important to know what the speech therapists' background is.)

3.   Get professional instructions on all aspects of care before their mother comes home.   This could include respite care.   It was exhausting for me; it might not be as bad if they alternate feeding episodes and get rest in-between.

The RN in our team was outstanding; she even stayed with Dad while I dashed out to do grocery shopping.

4.  Clear out a closet or space  for storage of the food cans.   Dad and I were both surprised when the delivery man rolled in 24 cases of Nestle's ProBalance.  I had to quickly clear out a whole closet for storage.

5.   As part of the discharge planning, ask for a hospital bed.  It's a lot easier for everyone.   The various feeding equipment was put next to the bed and Dad didn't have to move around, and could nap at leisure.  This was especially important at night .

6.    Also clear an area when the mother will be sleeping to provide easy access for you and any visitors.   If there's space near a bathroom, that would be good, as the feeding tube had to be flushed before and after.  

7.   Do a lot of advance grocery shopping or household chores prior to mother's discharge, as they may be just too exhausted to get out once it starts.

8.     Do ask about relief after home therapy ends.   You'll need it.   The home care agency may have staff to do that, or may be able to locate some.

9.     If their mother was a Veteran or if her husband was, there may be additional services.   You'd probably be served best by contacting a local or State VA facility for more information.  

10.    Continued separately; out of characters.

Is there a living will for her? In my parents living will they chose to not have a feeding tube and to die a natural death. From your explanation of her health her mind must be pretty much gone. I would think it would be better for her to die her natural death than the alternative. If no living will the closet family member could make the decision not to allow the feeding tube.

degarthy: It is not advisable for this individual to be sent home due to the many health issues, particularly the feeding tube. It must be stated that it would be an unsafe discharge to home.

11.  Dad's church members contacted a local unit, which arranged for visitors from that group, as well as taking him to church.   That's when I had a few free hours and got some shopping as well as rest.

12.   Again, if she was religious, or if the family has friends and relatives still alive, ask them to send cards, lots of cards!    I think one of the hazards of recovering from traumatic events is the sense of isolation.   Connecting with family and friends can help mitigate that.

13.   If any neighbors have pets, ask them to visit (Covid factored in); the pets offer great therapy.

14.   If she's able to get outside, even for drives, plan for short excursions.   We stayed at my sister's house (she had died shortly before Dad became seriously ill) as the house was more spacious, stores closer, and as I learned, we had access to top notch home care b/c of the agency's affiliation with the hospital.


BTW, Dad was released from rehab in February, home care began in a day or so, and he was decannulated in June, after the speech therapist had concluded he could eat again, which he had been under her supervision, b/f she d'c'ed her visits.

There's no question this would be a challenging period in the lives of your friends and their mother, but it can be done. And I would think the bonding and new dimensions in their relationship could be beneficial.

Please share this with them, and tell them that (a) I don't for a minute regret taking on this originally daunting challenge, and (b) I felt it was the best thing to do for each of us especially as our mother had died the year before, and my sister 6 weeks before Dad became so ill.  The bonding was so helpful for both of us.

My husband was recently discharged from an acute care facility after a serious stroke. I received 90 minutes (maybe two hours) of family training. There was a hospital bed provided and a wheelchair and commode, along with everyone's best wishes. The main thing I learned is that your friends shouldn't assume anything: they need to be sure that orders have been put through from her current facility and/or primary care doctor. Of course the level and amount of care depend on her insurance, and dealing with health insurers, Medicare, Medicaid, whatever, can be a nightmare. I assumed that for Chris, since he has Medicaid through the state of New Jersey, everything would just be forthcoming and that the rehab would handle it all. Not so!

Your friends will need to be serious advocates for their mom, on the phone and asking questions and generally being a pain until they get answers. Friends have told me that I'm too polite, and it's true. I'm fortunate that I have a good friend (a former boss) who is a PhD nurse/educator who knows what to do and how, and what questions to ask. An advocate is always a good idea.

So far I've paid out of pocket for some PT and OT help since Medicaid takes so long. I've also been able to obtain some help through Virtua Health System here in NJ, but again it took someone who knows someone to get the ball rolling. Medicaid will eventually kick in with what I understand is pretty extensive care - although I understand that it isn't open-ended: sooner or later we'll have to figure out how to extend it.

If your friends are going to be arranging all this they'll need to be able to speak to the insurance companies, Medicare, whoever, which may take some paperwork. HIPAA laws require their names to be on file, otherwise they will only speak to the patient which isn't always possible.

I guess the bottom line is: don't assume anything about her case or her care. Be sure you know just what kind of insurance she has and what it includes (or doesn't). Write everything down and ask questions. Be respectful but if you feel you're not getting the information you need, keep asking questions until you do. And don't be afraid to keep going up the chain of command until you're dealing with someone who can help you. My friend said she'll go as far as the CEO of the rehab where Chris was, and if she can't get satisfaction there, she'll go to the state Board of Health to let them know that we were left woefully unprepared for the type of home care I was expected to provide.

There are several questions that your friends need to ask and answer before real in-depth advice can be given...

1) As a married couple, are both parties in agreement that they want to fight for their loved one's recovery even with the toll it will take on their marriage and self-care?

2) What assets and funds does the mother have to setup and coordinate care in the home? If not known, start to identify them now.

3) Is a DPOA and Medical POA setup?

4) If they choose to fight and put in the work, do they have FMLA paperwork on file with their employers to take off as needed for unforseen situations such as a caregiver call-off?

Each state has their own State-issued fingerprint clearance process and registries for offenders such as nurse imposters and APS investigations.

For example, If you ever need to hire a caregiver in AZ outside of an agency, please do the following to minimize the chances of an abuser entering your home:

1) Require an AZ DPS Fingerprint Clearance Card. If the person doesn't have one, I recommend that you offer to reimburse them to obtain one (about $67). After the person gets their clearance card number, ask for it, and go to the following DPS website to check their legal name, expiration date, and status: https://psp.azdps.gov/services/fccFormTriage

2) Check to see if the person's name is on the AZ Adult Protective Service registry for any reason:
https://hsapps.azdhs.gov/ls/sod/SearchAPS.aspx?type=APS

3) Check to see if the person's name is on the AZ 'nurse imposter' list: https://www.azbn.gov/discipline-and-complaints/imposters

3) Make a copy of their ID 

4) Require a CPR/First Aid certification card

5) Call references that were provided and verify names and relationship

6) Get at least two Emergency contacts and verify them

7) Setup security cameras throughout the house, with the exception of places where privacy is expected such as the bathroom. Cameras usually scare off many folks that are up to no good.

If you choose to trust an agency, please insist that all caregivers assigned to your home have an AZ DPS Fingerprint Clearance Card. The agency will tell you that those cards are not required and how they do an "extensive check" but insist anyways. Doing all of this is not going to stop 100% of the abusers, but you will ensure you have done your part to keep your household safer. 

For those that think a nursing home can provide an abuse-free environment, think again. Placing a loved one in a nursing home is definitely not going to help avoid abusers - it actually increases the chances because of the many shift changes and high employee turnover. 

According to the World Health Organization, rates of abuse of older people are high in institutions such as nursing homes and long-term care facilities, with 2 in 3 staff reporting that they have committed abuse in the past year. Source: https://www.who.int/news-room/fact-sheets/detail/abuse-of-older-people

Your friends appear to care about their mother, and most likely will do all they can to protect their vulnerable loved one.

I would not try to bring this woman home if I wanted to keep my job. It will be endless interruptions working from home while caregiving.