So, if you all remember, dad was in the hospital and acute rehab for 5 weeks. They said he should go on hospice, but frankly I resisted because I KNEW he had the wrong meds... but then he seemed to decline for a few days, sleeping and couldn't be woken and did make some weird word choices when he did speak (called his walker a "dog"), so I consented to hospice thinking that his temporary improvement the week before was just a fluke. Now he has been in his memory care with the RIGHT medicines (had to really push hospice to put him on them as they weren't familiar with them)... and he is making total sense... He's slow talking and quiet but his sentences are complete and he's using some fairly sophisticated words. He's remembering things that surprise me as well. I guess his hematoma just took longer to heal than the hospital rehab gave him... he is 93 afterall so things should take longer.
Anyway, since the hospital and rehab and inpatient hospice (6 weeks total) barely got him out of bed he's very weak and a fall risk. He's in memory care and trying to exercise in his bed and wheelchair. He asked me to bring in his portable bike so he could pedal. He can't walk far but he really wants to work towards walking.
However, hospice tells me they don't do PT (Medicare says PT can be done to maintain health even in hospice). Hospice provided the hospital bed, oxygen (I returned the one we had at home). wheelchair and comode, and pad and alarm for the bed. I feel like it's going to be a pain to cancel hospice or to find a hospice that will give him some PT.... it's what he wants and for him it's a quality of life thing. Even though I doubt he'll ever really walk reliably, he wants to try to build himself up again...
So if I cancell hospice I have to find a place for all this medical equipment, They provide a nurse 1x a week (maybe every 2 weeks) and a CNA for showers 2x a week. But before, when he wasn't on hospice we got a CNA/Personal Care Assistant from the VA for showers and walking 4 x a week (dad was walking 1/4 mile before his TBI) so actually, I feel like he' is getting less than he did before. Yes,, they pay for diapers but me paying out of pocket for PT is going to cost a bunch more than diapers.
Maybe I can find another hospice with PT? Has anyone accomplished that? I'm not sure the VA will provide the shower help and the PT while he's on hospice (even though he's only on hospice for dementia and not for the TBI or his heart issues). I'm working that angle.
I'm trying to figure out who to appeal to at this hospice next as well. Yes, they provide some medication but so did dad's Medicare part D and the VA... he seldom had to pay much for his meds. So I feel like he got more before... and here Hospice is getting $150/day for his care.
Dad has Medicare, a Medicare supplement plan (not an advantage plan) and it's fairly rich...he's had to pay nothing much.. AND VA health care AND Medicare Part D with Humana. I know that people rave about all the free help and support hospice gives but maybe, for my dad, he has more insurance than the average?
I don't expect this to be curative or even extend his life by much... he has a lot of health issues... but it's something he wants to do. (if it was me, there is no way I would want to work as hard as he does.. I hate exercise!)
Today, however, dad is back to being very low energy, soft spoken and not clear in conversations. And his arms are very shaky again. He is once again completely different and looks like he's dying.
Every day seems different with him... but at least he got his wish to try.
I think in the long run it will be very difficult to both keep hospice and their extra care and to get PT. But more than that I think it is important that you are clear in your own mind as to why Hospice is on board. Generally it is to enhance his end of life experience, for comfort care and pain relief, and etc. Not as a "cureative" move, which to my mind seems to be what you are hoping for.
Speak honestly with hospice about your deep feelings that he just "may have" a way forward to be what he was before the bleed. That he seems ready to/anxious to move forward. It may, given your own, and more importantly his feelings, be time to give up hospice and work toward recovery if that is what he wants, what you want. Ask Hospice if they can be called back, and PT cancelled, if this cannot work.
That's about all I am thinking on this. Not certain what to advise you. I shudder to think you would feel you gave up, you doomed someone who has such a will be get better, to recover, to stay with us. I am a huge fan of Hospice. I am a huge fan of letting go and having comfort care. But the KEY is really what the patient wants, how the patient feels.
Do ask hospice if they know of ANY hospice that will allow PT to be a part of the program, even if only from the standpoint of patient comfort, ease and well being.
The medicare guidelines for hospice do talk about PT, OT and speech therapy (swallowing therapy) so I know it's theoretically covered for the purpose of maintaining (not curing). Obviously this isn't usually done.
I really do understand the difference. It would be an easy choice if dad was in pain or really out of it.. but somehow he has rallied.
I don't have a lot of experience in this area, but I think it's time for a re-evaluation as to whether or not he actually needs to be on hospice. And if not, he should qualify for rehab.
Do you have a doctor (not on the facility staff) who could step in and intervene on your father's behalf?
The doctor is the hospice doctor who I don't think has even seen him but I agree, we may need to have him reevaluated. He is entirely different now that he is out of the hospital and on his regular meds.
My DH Aunt, 94, on Routine Home hospice for dementia for several months now.....has PT. But I had to request it several times and ended up calling the therapist that was with my mom for years directly to see if he would accept a private client. He talked to the management of the hospice and got it approved for them to provide it. It’s very light therapy but it keeps her mobile. I was like you. I thought I had made a bad deal. Aunt needed more baths. HH told me she could get more baths on hospice. I was assured PT was available on hospice. I switched and then had to push for the therapy. They are sending CNAs daily to bath her so they are truly working with me. It’s hard to know sometimes which issue to tackle and where to draw the line.
My FIL was in rehab after a fall years ago. He just sat in his chair. This was a hospital rehab. I was concerned he would be released because he wasn’t doing anything and he was far from home. The therapist told me that sometimes it’s therapy enough to be sitting up. That the progress he was showing was good for him in his condition. When aunt was first using a cane, a therapist told me that walking and then standing a minute or two to rest with the cane for balance and then continuing on was therapy. So any movement your dad will do will help. He just needs to increase it a bit each day.
As you said Medicare will pay for therapy but does the hospice choose to provide it is the question. They have a choice the way I understand it. They don’t have to provide the service but might be persuaded as in aunts case. You are not prohibited from getting him care outside of hospice as long as it isn’t for the same thing hospice is managing his care for. I would turn the bill into Medicare.
These situations are so hard. I just lost my mom. It’s heartbreaking to watch parents struggle and decline. I am so very sorry. Wishing you peace as you navigate your way through this very sad time in your lives.
"(medicare says PT can be done to maintain health even in hospice)" this doesn't necessarily mean they're going to pay for it. "can be done" yes. Can be paid for by them? I'd contact Medicare and his supplemental plan to see if they'd cover it in hospice. Then I think it has to be prescribed/ordered? Whatever happens you should not be paying for any of your dad's medical costs yourself. Even his PT should be paid by him.
Dad is not accepting of the fact that he is not going to get better... if I even hint that he may always be in a wheelchair he really gets upset.
I think at this point you must be realistic about your dads situation. At his age and being bedbound for over 5 weeks, while his mind is willing, his body may not be. There's a big difference there.
My husband who ended up with aspiration pneumonia, sepsis and septic shock, and was in the hospital for about 4 weeks, came home under hospice care completely bedridden. Now he was moving very slow before all this happened, and was a fall risk as well, so it didn't surprise me that he was now bedridden. He too thought that given the chance he would be able to walk again, but there was no way that was ever going to happen. He had the will, but his body was too far gone by that point, and he was only 70(almost 71) at the time. He remained under hospice care, completely bedridden, in our home for the last 22 months of his life.
And if you decide to cancel hospice, you won't have to worry about where to put all their equipment, as they will send folks to come pick everything up, including the hospital bed. You may want to talk to his Dr.'s to see how realistic it is at his age to regain his strength enough to walk again, before you make any hasty decisions. I wish you the very best.
Why not get Dad one of those pedal bikes to use when sitting in a chair and perhaps some two-pound weights to use with supervision? I don't see PT and hospice happening.
As mentioned by others, if you take him off hospice, all that equipment goes away. They'll pick it up and take it, so be really sure that's what you want to do before canceling hospice. I think I'd keep him on hospice, then hire a physical therapist if you really want it.