I volunteered for a local hospice and signed my mother on for a few months. It became more work and stress for a variety of reasons, and no longer fit her situation.
I actually switched her to another hospice organization that has regular home care, a palliative “bridge to hospice” and a hospice, with a lot of flexibility between the levels. We formally now have her at the palliative level with PT, which also allows some treatments for various problems that come up. My mother doesn’t even need pain relief but they still call it “palliative.” In this organization it just means she is in the medium level of services.
I had a tantrum this morning. I find that if I vent about my difficult mother (long story, but this week has been especially bad with paranoia and anger, which she promptly forgets), everyone tells me to take a break. The implication seemes to be that I am doing too much. These comments come from an AL facility that doesn’t really do anything no matter how hard I try, and from a brother who does even less.
My mother was having a hospital bed replaced because the one she had, had a piece of metal on the end, shin level, that was wounding her fairly severely. Four wounds in a week. Two of them really bad bleeders (Coumadin). I figured out what was wounding her and went to find a replacement bed. For three days I got angry calls from my mother- 12 in one day- about how I needed to stay out of her business, she didn’t want a new bed, she didn’t tell me what furniture to have etc. etc. and when I visited I got the same thing even when I tried to explain about the piece of metal and the injuries. She has no memory of the injuries or the problem with the bed. I got frustrated and made the mistake of sharing. (Normally I don’t give long explanations but it was necessary because she needed to try to avoid the piece of metal while I worked on replacement.)
Anyway, this morning I called the AL and said that due to all the advice they and others had given me, I was going to take a day off and wanted them to handle the bed delivery. They could explain it to my mother, meet the bed delivery guy, get the flatbed for him, and get an aide to put the mattress on and make the bed- all things I did with the delivery of the original bed.
I have really made it clear that I would not have to do so much if others, mostly the AL, could do more. But if I have to do what I have to do, I don’t want any more patronizing conversations about taking a break.
No patronizing here, @compmom . You are in there navigating solo and many of us get how it can wear you out. I had a cheerful, cooperative father in generally high quality skilled nursing memory care snd still there were days…
Also have empathy with the sibling situation. Zilch participation and equal appreciation. I owned the decision to do what felt right.Sometimes it involved setting limits. Hang in there. Hope the AL rises up to do what is needed.
When we made the decision to put mom in hospice, she was having a PT come to the house to work with her. I was told that she needed to be discharged from PT to be admitted to hospice. I did in fact reject the first for profit hospice organization I talked to. They may have been fine but I didn’t get a good feel of the organization. Mom is not with a non profit and I’m thrilled. One of the big differences I see, is the volunteers. People volunteer for non profits. But I agree, organization quality varies by much more than profit status.
Thus far I have spoken with one non-profit hospice and was not impressed with what was offered but then again this is all new to me, so I figured perhaps I was being unreasonable. I was surprised at the lack of physical therapy offered and how few home health aide hours were offered. I was told by the social worker for the hospital mom was in not to expect too many home health aide hours from hospice and that the most she has seen given is 4 or so hours a day for five days with nothing on weekends and that was only in exceptional cases. Again, having no point of reference, I have no idea is this is typical or not.
I am like a fish out of water with all of this and it is so overwhelming.
My MIL is 94 and fading fast. All five of her kids made it out to Denver this past weekend to see her. Her youngest child was also installed as the pastor of a church - I feel for that daughter!! She lives around the corner from MIL’s facility and the rest of the kids are spread out across the country. DH has always been very close to MIL, so this is tough on him. I wish he could fly out again, but we’re self-employed and don’t get paid for time off.
@PurplePlum Hospice does not provide round the clock care. Most programs provide 2 -3 HHA/week for 2 -4 hour stretches. . 4 hrs/5 days week would actually be a lot. RNs usually come 1 - 2/week, SWK 1/week, pastoral care can come 1/week, and volunteers can be scheduled to do respite care in 4 hour blocks. Then there is on call staff for emergencies.
In my family, for two experiences, our loved one died at home with multiple family members and friends taking shifts for months on end. For another, she was in an assisted living facility but we private paid for caregivers in addition to hospice. Family took shifts when death was imminent but there weren’t enough of us to get by without private duty care.
@momofsenior1 that sounds like what we saw with MIL. Hospice does not replace the 24 hour maintenance care of a nursing home or hospital or family, they “only” provide a small amount of household help and nursing visits, plus a number to call and family counseling to help the family understand and accept what is happening. Often you end up paying for the nursing/assisted living expenses, and Medicare pays for the hospice visits.
Meanwhile, my mom continues to slowly improve. We are still not sure what level of independence she will attain, and are still battling with the rehab facility, and especially the PT director, to keep the services available to her. No one but her daughters expected her to come this far, and we’re not giving up unless she gives up, which she is increasingly unwilling to do. And she could fall off that cliff today or next week, or she could recover to where she was a year ago, or something else.
IME, for a non profit, volunteers don’t replace the RN or CNA or provide hands-on. Respite is spending time with the patient, a visit/companionship, running an errand or a ride to a doctor appt. They might help a patient with something like laundry, but aren’t HHA. It can also be respite for the family member to get something done.
And patients do get 24 hour care in the facility, the hospice itself. But unlike SNF, it’s much more about end of life. It’s important to see what your choices offer. This definitely varies.
My understanding is that Medicare provides in-home “hospice” services at no charge, meaning the 2-3 times/week visits from aides and nurses, but a residential hospice situation is paid for by the patient/family, even though some of the services provided there may be covered by Medicare.
I was just pointing out that there is a wide range of hospice-related services, with a wide range of costs and extent of services. The concept holds across the board, but the word “hospice” isn’t enough to specify the care requested or provided.
Under the hospice benefit scenario, my understanding is that short stints in a hospice inpatient facility are covered under hospice, but that is for when the symptoms, etc. are at a level such that it can not be managed at home, and these inpatient stays are for short periods of time only and under exceptional circumstances. That is my understanding from all of the research that I have done thus far–though obviously I have no real experience with this. Maybe some one else can chime in?
I think what I need to wrap my mind around is the level of “symptom management” a hospice patient receives. The one non-profit hospice nurse with whom I spoke told me that they do not do “aggressive symptom management” (however it chooses to define this phrase). This to me is so nebulous that I am uncomfortable with it not being specifically delineated. It gives the hospice lots of room to decide what it thinks is “aggressive”. I think this is my biggest concern because based on mom’s situation, her symptoms take a lot of work to manage (she has two very serious illnesses).
Of course they do pain mgt, etc. The short stay scenario is more that this is end of life. Ime (and that’s at one top notch facility, ) no one is left to suffer.
And Medicare, Medicaid and most private insurance will pay.
The distinction in the residential is usually the EOL being imminent. Hospice in-patient is not SNF. Some patients improve with the constant care and do go home. That’s a medical determination.
Medicare paid for my moms hospice in a memory care facility, for 18 months. Yes, supposed to be short term, but it is also end of life care and with dementia, there isn’t any getting better. There are good days and bad days and there is always something! Fall, choke, stopped eating for a day. If the mem care people document then the Medicare RN evaluator can make a case to be kept in hospice caret. I think moms was non profit. The mem care place liked having them because they had to work less. Hospice would shower Mom once a week so mem care only had to do once also. I wanted it because the mem care could call hospice for a fall instead of hauling Mom to the hospital where she could not tell why she was there. Maybe different states have different rules, but for sure Medicare will pay for in assisted living hospice.
I agree with the above, for the two people who were on hospice for any length of time, it was shower helper, RN, chaplain, no home health care assistance other than the shower aides. Both people paid for the the monthly bill to their care home, but the hospice additional care was “free” to them, though EOBS showed about $6k monthly billed to Medicare. Our area hospice, there is only one, does offer a few days respite in each 90 day period, but you would pay, I think, $200+/day if you move into the limited hospice beds at hospice house.
Our local hospice provided an aide one hour a day, five days a week, nurse twice a week, social worker, chaplain and volunteer. As my mother improved we did not want morphine due to fall risk, and there were some treatments (for falls, for instance) that we wanted.
As I wrote before, we have done really well with a mid-level, between home care and hospice called “bridge to hospice” or “Palliative care” in this organization, that provides PT and nurse visits and is flexible on medical decisions.
But if my mother again worsens, she can easily move back to hospice with the current nurse just flipping the switch.
For my father (congestive heart failure, liver failure, kidney failure), hospice provided skilled nursing visits 2x/wk and an aid 3x/wk for a shower. The nurse gave the family members advice on how to take care of Dad. It really was us doing it, supplemented by paid caretakers for overnights so my sister (who was staying there) could get some sleep. But they provided all medical supplies, bandages, pain meds, etc. And a nurse was on call 24/7.
Where they (well, the nurse actually) really stepped up was on the last day of my father’s life, when he became agitated and delusional. The hospice nurse literally put her life on hold to be with us from morning until late afternoon, calming him with medication and calming US with her calm, educational presence. She only left when we felt we were ready to handle it, and she assured us that she was only a phone call away. She was a godsend.
A little warning about CCRCs. My mom is in a non-profit CCRC that has a long history and is pretty well-funded. They had quite a few vacancies a few years ago, hired some new staff, and now have a waiting list. All good, right?
Well, when my mom was in the rehab wing after her hospitalization, the care team decided pretty early in the game that she wasn’t improving fast enough, and were ready to kick her out to the Nursing Home wing, which would have freed up her very desirable apartment to a new resident who would have paid a big lump sum to move in.
Now maybe they sincerely believed that she had improved as much as she was going to, and that her best option for her own good was to live out the rest of her life in a single nursing home room. Or maybe the bureaucrat social worker and PT director were just checking boxes and not checking in with the patient (actually, I know that part to be true.)
But the situation today is that she is off the oxygen, walking up and down the halls, improving with physical therapy, and getting pretty close to the capabilities she’ll need to be independent.
One of my sisters has now made the decision that she will never pay a big up-front fee to a CCRC, because once you’ve paid in they may not have the right incentives. She may be right about that. All of us have observed that if seniors (or really any patients that are too weak to advocate for themselves) don’t have strong family support they can fall between the cracks.
In the meantime we have successfully challenged the first attempt to bump her out of the Medicare Part A rehab program (for now), and are keeping watch on her progress and treatment, and everyone knows we have her back.
I’m glad your mom is improving @MomofJandL, Perhaps that is a good argument for the 'buy" CCRC model my parents were in. By buying the condo, as opposed to the up-front fee, they were guaranteed they could return to their home. In fact, independent living with part time help was encouraged vs assisted living. The disadvantage was that it took me a year to sell the condo. Meanwhile I had to pay the monthly CCRC fees on an empty condo. After selling, I made the calculations and decided it was worth it.
Just got back from a day long visit @oldmom4896. She is not even eating and drinking. I don’t expect her to last another week. She was a trooper and sat up much of the day. Now back in bed but so restless. It is heartbreaking.
