Palliative care vs. hospice info? Or nursing home?

Fardwarks

Would anyone have any recommendations/links to good info on the differences between palliative & hospice care, or perhaps benefits vs. nursing home/skilled nursing facilities?

  Long story for some background, and I just realized I originally posted this in the partner/spouse forum instead of here while I was in a rush.  My mom (diagnosed with Alzheimer's in early 2022, although I think she displayed some early signs of dementia that I noticed in 2017) was moved by my dad to an assisted living facility on 6/20. 

Prior to the move, she needed assistance with bathing & dressing, and was experiencing intermittent incontinence (mainly at night).  She also had a wandering episode and regular sleep disruptions and some hallucinations.  Dad (in his early 80s) was struggling to handle it. She was otherwise relatively coherent and fairly mobile (somewhat limited because of arthritis in knees), would talk on the phone, feed herself, take her medications when prompted, get back and forth to the bathroom during the day, etc.  He had tried home care nurses a few times to help with monitoring her so he could feel safe going out to run errands, but mom had a meltdown about that.  Dad is completely non-confrontational and decided not to try it again.  Perhaps if he'd lied about it or handled it another way, it might have worked out, but who knows.

After the move she was upset for a few days, but according to dad, then seemed to settle in a bit and was eating and drinking, talking with other residents & staff, etc.  Then she completely stopped.  She began refusing to take medications, not getting out of bed, fighting staff on getting a bath and getting dressed, and began refusing most food/drink.  She stopped talking and responding to most people, except my dad, to whom she is particularly hostile (verbally).  Clearly, this is way beyond what AL can handle and was a huge decline in a very short period of time.  She was hospitalized twice in the span of three weeks (blood work normal, no sign of UTI) and kept overnight for IV fluids, but then released back to AL.  I traveled to see my parents on 7/20 (I live several states away), and was floored by the decline.  She was effectively unresponsive to me or anyone else at the AL facility, except a staff member that she screamed at when they tried to get her up to get a bath.  She was supposed to have a doctor's appointment with her primary care physician on 7/21 about 45 minutes away.  My dad was going to drive her there, but I drove them instead.  She had to be carried out by AL staff and placed in the car, where she pretty much slept the entire time.  When we got to the doctor's office, the staff sent us to the ER (not surprisingly, based on her condition and unresponsiveness).  She was admitted to ER with tests for everything (x-rays, CT scan, blood work, urine, heart, etc.).  Everything was normal test wise with no sign of stroke, infection, UTI, but she fought everyone on everything (screaming, slapping at people) and she was admitted to observation unit overnight for psychiatric/behavioral evaluation.  A case manager at the hospital who works with dementia patients and works on referrals for nursing facilities spoke to us on 7/22 and saw some of her behaviors (screaming, aggression, hostility toward dad anytime he was in the room) and told my dad that no SNF would admit her in her current state, and that medications may have to be administered to calm her down before that was even a possibility.  We received a book with a list of facilities in their state, and dad began choosing some options in the interim.  We spoke with a doctor who came in to see her for about 5 minutes on 7/22 who was supposed to conduct the behavioral/psychiatric evaluation, but she was unresponsive again so he couldn't see/do much other than recommend a few medications to try to deal with the agitation/aggression.  He felt like she might be in the end stages of dementia, and the case manager came back in to speak about that and mentioned palliative care at that point might be an option instead of SNF.  I'm unsure on the differences between that and hospice.  But of course, nobody was available to talk with us about it at that time since this was in the evening on 7/22.  She was moved out of observation to a regular room in the evening on 7/22, but just before that happened (around 5:00 PM), she suddenly began talking to me when my dad stepped out of the room.  I asked her a few simple questions and she responded, we watched TV for a little while, she laughed about some things I told her about her cats, etc.  The nurse came in and she took meds (in applesauce) and ate a few bites of dinner.  Then she asked to speak to dad and wasn't hostile and then talked to my husband for a few minutes.  The whole episode lasted maybe 45 minutes.  Then she seemed tired and they moved her shortly thereafter to another room in the evening on 7/22. I flew back home on 7/23, so I only got to see her in the morning.  She was mostly unresponsive again, except to fuss at dad, and only accepted half of her meds in applesauce. I know that's a lot of info, but if she really has moved into the end stage of dementia (which seems really fast over a 4-week period, but I clearly know very little), what are the best options?  We want to try to do the best thing, or the least worst thing, but we couldn't get much info about the options yet.  I pretty much got a crash course in this over the span of 3 days, and I don't live close by.  Dad is competent at this time and he is her decision-maker, although we're definitely working together as much as we can. So if anyone has great links or info about advantages/disadvantages of SNF vs. palliative care or something else, that would be great. Because I don't think she can go back to AL for any extended period of time  unless they find some magic medication in the next day or so, because she clearly needs a lot of help right now.

Olly_Bake

I am team regular home health, palliative care, and hospice care. Bad experiences with the care dad received while in nursing homes to recommend that option but have read on this and other forums where many had good experiences.

I’m afraid your dad at 80 may not be able to handle his DW and preserve whatever portion he has of his health. Not the way you speak of mom now. Most hospice companies offer hospice and palliative care. The way palliative was described to me by a hospice company is that you and your LO are still willing to fight (intensive treatment but at home) and with hospice care only, you're still willing to fight but not so much (no intensive treatment at home). So if meds can't take care of the issue, you're willing to let nature take it's course. You're willing to forgo emergency room visits, specialist, etc.

With the nursing home option, you can still bring on hospice for extra set of eyes. If you choose hospice, the hospice doctor and nurse would work with you or you and your dad to get mom’s health issues under control and make it a priority. Hospice usually will evaluate while in the hospital. 

If you choose to bring her home, they still would make those health issues a priority. If they could not get the issues under control, they would recommend an evaluation at a hospital for adult mental evaluation (can’t remember what they call the special units – dad went although I ended up taking him back off seroquel). If you do home, cameras would be your friend.

Hospice sends out aids usually three days a week and a nurse two times a week and in some cases three times. If you all find that you still can’t manage your mom at home, hospice will usually then assist you with finding nursing home placement.

Hugs to you and your family. I'm sure others are working on their responses for more input.

MN Chickadee

Welcome Fardwarks. Hospice is a great service, but it is not full time care. Nowhere close nor is palliative care which is kind of pre-hospice. If you bring her home with hospice on board then you or dad would need to be doing the hands on care. In end stages that would mean feeding, changing depends, personal care, and at the very end moving her ever few hours to avoid bedsores. Seems unlikely at his age he could do all that? Hospice will send a nurse every so often, depending on how near the end she is. Probably weekly at first, and when someone gets closer to active dying then they come daily. They usually send an aide to do bathing twice a week and sometimes other staff like a social worker or chaplain every so often. But the 24/7 care would fall on the family. Of course you could hire this help and bring in hired aides to the home but that is kind of a full time job to manage the staff in and of itself. And expensive, like $25-40 per hour depending on your area. You are right that you will have a hard time finding a facility that will take her if she is very volatile or combative.  If she stays in comatose mode and mostly non-responsive especially when your dad isn't around then perhaps you can find a facility for these final weeks or months. The term memory care can mean different things depending on your area. Some in my area can handle late stage dementia, otherwise you may need a SNF. Not everyone in the end stage requires the skilled nursing, it just depends on what her needs are. My mother died in a memory care unit. The facility staff did the round the clock changing, cleaning, turning her etc and hospice came in at the very end with their services as well. There are also inpatient hospice units in some areas. If she remains combative I would push for more of a psychiatry consult. Usually I would say ask for her to be transferred to a geriatric psych unit (or senior behavioral health unit.) There a person stays a few weeks to find the right meds to get them stable and it is staffed by doctors and nurses who specialize in dementia and once stable they move home or most often to a facility.  However if she is truly end stage that may not be the right setting; visitation is severely limited and it would not be the right place for end of life care. Can you get a psychiatrist to assess her in the hospital again and see if they can find some meds to get her calm enough for placement? She may need ongoing assessment with a psychiatrist and trial some different drugs. Given what you have described I would NOT send her home with dad unless you or another family member are going to stay with them for the long haul; it sounds completely overwhelming for someone much younger than him let alone someone in his 80s. Especially since she is most combative for him.  I would do it takes to find placement. Hospice can serve her no matter where she lives.

Hospital discharge planners are supposed to get you out. If you leave room for taking the person home they will jump on that, makes it much easier for them. If you decide you need to place mom, dad needs to tell them on no uncertain terms he cannot care  for her at home and they need to find placement. Use those words, repeat them. They will have to find a bed for her in a facility. 

Fardwarks

MN Chickadee - That's helpful info.  Dad can absolutely not handle her at home in her current condition, as he was barely managing before the move to AL.  I live 10+ hours away, as does most of my mom's family, and while dad has family in the area where they live, nobody would be capable of providing constant care for her at their home. 

I will talk to him later today, as we were told that the psychiatrist would be by to see her again and talk to dad over the weekend.  So perhaps they will be able to do more of an evaluation. She's had 2.5 doses of something that the psychiatrist who saw her briefly on Friday had already recommended. She apparently rallied a little bit late in the evening yesterday and was eating a little bit & taking some meds, and requested to speak to dad on the phone (and was apparently somewhat pleasant when talking to him). 

towhee

For an explanation of palliative care and hospice-- 

www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

As you will see from the article it is not either hospice or nursing home but hospice and nursing home. Hospice goes wherever the patient lives. There are stand alone hospice facilities but they are usually reserved for respite or for end of life care that a nursing home can not handle (at least in my area). Hospice usually requires you to agree to no more ER visits (you can always drop hospice and go anyway) and palliative care does not. Hospice may be more available in some areas than palliative care.

I am sorry this has happened. There are so many things that can push our LOs further down the dementia path, from TIAs and seizures, constipation, dehydration, infection, pain that they can only express thru sleeping to much or agitation, new medications or as needed meds given more often or meds building up in the body from dehydration, delirium, or emotional upset that they can not let go, as just a few. Your family has gotten her a good medical workup and are working together to take care of her. I think your mother before dementia would be proud.

I agree with Chickadee about hospital discharge planners. You might end up paying privately for a few days but don't let them push you out before you find a good placement. Also, make sure she has been admitted, just because she is in a regular room does not necessarily mean she has been admitted. This can affect hospital payment and rehab payment.

oehlsena

A doctor explained palliative care to us last January as "comfort care" and "pre-hospice."  Hospice is, as far as I understand, given six months to live by a doctor.

Ed1937

The six month timeline no longer holds. Some dementia patients have been in hospice for 2 years.