Hospice care question.

If he wants her to remain at home hire a CNA for the daytime.

CNA's do end of life care all of the time.

The RN will come to the house. Take vitals. The RN will ask Mom questions.
The medical staff pulls Mom's electronic records and the Doctor back at the hospice will make the final decision about entry into hospice.

You can call hospice directly to do an assessment. You don't need a referral.
Hospice will pull your parent's records from the PCP to evaluate.

The decision may not be up to you or rather your Dad. Hospice will come to their home to do an assessment. It will mainly focus on mom as to her abilities and what she is doing every day to maintain her best health status. But they will also evaluate the overall home situation. ((A good hospice agency will be realistic with families on this. But there will always be those who aren’t as the capitation rate that Medicare pays hospice is pretty good.))

So the assessment will be looking at her ADL abilities, how her medications are done and if she seems lucid and cognitive of where she is, what the day is, etc. type of details. However in addition to all this, they will look at the condition of the home (that it’s condition is sanitary and safe) and who the individual(s) will be as the person required to be there all non hospice time as her caregiver as per In Home Hospice regulations. Hospice is a Medicare Part A benefit and a requirement under Medicare is there needs to be an adult caregiver present for all times other than when the hospice staffers come to see your mom at home. The same requirement is there for those who are in PACE too as it is primarily paid by Medicare.

Should your Dad appear not to be able to physically do what’s necessary for him to be her caregiver for all the rest of the time when hospice is not there, the agency can put in their report something like “for the safety and security of the patient, we are recommending placement in a nursing facility. As such we are unable to meet the clients needs”. If during the assessment, there are questions regarding your parents fire escape plan, that is a red flag that they have serious concerns about him all by himself being the only go-to caregiver for her. If she will be needing a Hoyer lift and he can’t physically do what needed to assist her to get her in & out, that’s another red flag. Ditto for him being able to bathe & Hygiene her if she is bedfast. Hospice tend to want at least 2 persons involved with caregiving and on a schedule. They want the caregivers to be able to have their own time and be able to get their rest. If the person is way younger (like in their 40’s / 50’s but terminal cancer) and can do their medications, hospice can be ok with a caregiver that is not FT & always there. But your mom sounds like needing always 24/7 oversight.

Now if the goal really is she is best off in a facility, then your expressing your own concerns about dads limitations to be solo caregiver and that he’s recovering from pneumonia and that you cannot yourself be an in their home caregiver…. Well this could work in your favor to get mom into a facility….. that In Home Hospice really isn’t feasible option if it’s just Dad. But if you do want to try In Home for a while, I’d really suggest that they plan on hiring a caregiver to come in 3-4 days a week for the minimum 4-5 hr block that most healthcare companies require. And you have this info lined up and drop into place once hospice starts.

If your mom is completely bedfast, realistically in my experience, it takes a team to provide the bathing, dressing, hygiene, almost inevitable wound care, and companionship she needs. My mom was on hospice and 100% bedfast 18 l…o..n…g months (fell forward pulling her wheelchair to go to activities at her NH), the bathing was a 2 - 3 person team in a shower room with mom in a geribathe chair. It was pretty amazeballs to watch them, there was no way that I solo on my own could ever bathe her to the degree that they did.

Bed bound patients need 24/7 care. Long term care is your best bet to give your dad some much needed rest and your mom the care she needs. Start looking tomorrow. Hospice can still work with LTC.

First you do NOT have to get a hospice referral from your mothers PC. You just pick up the phone and call the hospice agency of your choice and ask them to come out and do an assessment.
From the sounds of it your mother would most certainly qualify for their services. Though keep in mind that to start a nurse will come out only once a week to check your mothers vitals and aides will come about twice a week to bathe her. Other than that the rest of your mothers care will be on you, your father or any hired aides you may need.
Of course hospice will supply any and all needed equipment, supplies and medications all covered under your mothers Medicare, but 99% of her care will still fall on you and your father.
I think that now you must do what is best for all involved, which may include having your mother placed in a nursing facility where you all can get back to just being her loving family members instead of her overwhelmed and burned out caregivers.

In my situation, my mom, 92, w dementia and chronic kidney disease, has been on hospice since May.

Her daily schedule is as follows:

Caregiver (that I hired from Care.com) wakes her around 9:30 am.
Caregiver walks w her with a walker to bathroom.
If she is too weak, a wheelchair is used.
After the bathroom, she is brought back to her bed.
Caregiver brings her breakfast in bed.
Sometimes she watches TV, sometimes she’s not in the mood.
Then she sleeps until about 5:30 pm.
Then she has dinner in bed.
Afterwards, she is taken to the bathroom once more.
Then back in bed for the night.

This has been her routine for many weeks now.

My mom uses Depends, but sometimes she says she doesn’t need to go to the bathroom. She might just be exhausted.

She is awake roughly 4 hours a day. Her only movement is walking to and from the bathroom twice a day. So mostly she is bedbound.

Hospice has supplied a wheelchair, a bed, depends, chux (disposable waterproof bed pads), a device to rinse the mouth to be able to brush teeth in bed, a rolling bed tray, two visits a week from the hospice nurse who is also the case manager, all meds, transition kit, a visit from clergy if needed, visits from social worker if needed (for any family members), plus after hours calls to the hospice nurse on duty.

The after hours nurse has come out to the house a few times to check on my mom at night. It is a relief to know that I can call anytime.

Since we have 24\7 private caregivers, I don’t know how my mom’s particular hospice provides hands-on care and bathing, etc. The caregivers give my mom her meds mixed in with applesauce or pudding and they take care of all laundry and meal prep and light housekeeping. During downtime, they keep an eye on my mom with a baby monitor from another room.

Hoping this gives you one example of how our family does it.

I understand completely when you say it is an emotional time. Please feel free to make use of the social worker or clergy from the hospice, if you think that may help you or your dad.

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When my dad chose home hospice he immediately received a hospital bed with a pressure relieving mattress, along with nearly endless medical and home health supplies. All Depends, bed pads, bedside commode, meds, etc came quickly. This would be a huge help to you and won’t need asking for, it is standard. There will be regular nurse visits, an aide for bathing, and chaplain visits if wanted. I relied on our hospice nurse for much needed advice at many different hours. I think you’ll find it a relief and wish you much rest and peace during such a hard time

You could get by with y1 CNA for 12 hour shift if you or Dad checks her diapers, Depends, or chux every 2 hours overnight. You don't want her lying in urine for 12 hours.

If your mother is bedbound she needs to be repositioned every 2 hours to prevent bedsores. Mom's CNA's were really skilled at this and did a good job. All of them had done prior nursing home work.

It would be tough for your Dad to do.

Mom also needs to be checked every 2 hours to make sure she is not lying in urine. We used chux, not depends or diapers and the chux worked well and also helped prevent bedsores.

Late stage is all about skin care.

We had 2 caregivers on 12 hour shifts. I'd recommend CNA's (not unskilled workers.) We had some unskilled, I think they are called home aids. Make sure to specify for CNA's.

Hospice does not provide care. They will provide supplies and we had an RN that stopped by once a week from hospice. They would also send a hospice CNA by once or twice a week to do a bedbath but we declined that since we had the private duty CNA's.

Our CNA's really did a good job and took a load off.

I had accounts with 3 agencies but found the locally owned agencies easier to deal with than the national franchises.

It sounds like your mother is still walking? The CNA's can walk with her which will increase the safety. They can do laundry. They can prepare meals.

You need 3 caregivers at 8 hours each shift. Good luck.

Hospice care has been very helpful for my mom and our family, but it is far from being 24/7 (or even many hours per day) care. It can be especially difficult to find appropriate care when the main danger for the "patient" (your mom, in your situation) is that she is falling down. Even with someone around a lot of the time, it can be hard to prevent all falls. I suggest that you start by thinking hard about whether your dad is likely to recover sufficiently to go back to being the primary caregiver. At his age and with his illness, that might be unrealistic to expect.