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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!)

Mary,

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.
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Update: dad convinced the hospice nurse yesterday that he wanted to exercise and OT did an evaluation and said he could follow directions and that PT would be good for him. So hospice approved 3 sessions of OT and 3 sessions of PT with the option to continue if he actually can do it.

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.
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BarbBrooklyn May 20, 2021
Mary, I am so sorry that you are going through this roller coaster of of emotions and conditions. ((((Hugs)))))
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Congratulations on getting your dad back on his meds. It sounds like you know how to get DME equipment at home from his doctor or rehab. I think I would get him readmitted to rehab if at all possible.

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.
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So what I found out is that there are no local hospices which will do PT (although in the next state over where it is more common). Hospice sent an OT to do an evaluation and they said that yes, dad could benefit from PT. However the hospice here only has OT. So, I have 2 choices... drop hospice and go through a bunch of hassle for something that may not last long (he may not even be able to do PT very seriously)... or just pay out of pocket. I'm going to pay out of pocket and just see if he is serious and ABLE to do what he says he wants to do. If he continues to do better then hospice may drop him until he is declining again.
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MJ1929 May 20, 2021
Why not look up a few senior exercise videos on YouTube and do them with him before shelling out money?
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If he's in memory care, but not hospice, what's the classification, really?   I can understand that he's in a memory care facility and classified as being in hospice, but somehow I get the impression that's not the case.     And has he been re-evaluated for transfer out of hospice?    If he's able to exercise, I wonder if hospice is really appropriate for him at this time.

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?
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marydys May 18, 2021
Yes he is in a memory care facility but on hospice. I am not set up for him to be at home on hospice as my home can't accomodate a wheelchair.

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.
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I feel like you aren't understanding the purpose of hospice. As Alva said, it's end-of-life care not intended to help someone get better. It's intended to focus on quality of life over quantity of life.

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.
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marydys May 18, 2021
He asked me to bring him his pedal bike (chair) and I delivered it today. I was amazed he even remembered we had bought one for him before the accident but, again, his dementia is much improved.
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I am not aware of any hospice agencies that offer PT for their patients, as their main goal is to keep someone comfortable until they die. Now that doesn't mean that you can't do some daily exercises with your dad to try and regain his strength, while he's in the bed. By all means do that if it will make him feel better.
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.
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marydys May 18, 2021
I agree that he might not be able to do the exercises... he can barely walk right now and is very wobbly. What I'm worried about though is that now that he is feeling better he may try and do things that aren't safe. As it is, he's trying to exercise himself in bed with leg lifts and cycling in the air. My dad thinks he's like an old car and that with enough patience and can-do attitude he can get himself going again. He's remarkable really.
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I think there is a basic misunderstanding here. Hospice is "end of life care" and PT is a part of "treatment and improvement in getting better". If you see what I mean? They are contradictory and I think that you won't find a hospice that includes PT (but I could be wrong, if, as you say, you put it as a quality of life thing; that the patients wants to do it, is asking to do it, and wants to move around). Since he is actually asking for PT things you can put it that this is to improve his outlook, his general circulation to prevent sores, his equilibrium.
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.
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marydys May 18, 2021
I really don't care either way whether he stays on hospice or not... he is the one wanting to get better and I'm just trying to support him in what he wants. And yes, I do sort of feel I doomed him to hospice but I did it after 5 weeks of being discussed with medical personnel. And only after dad had tried but started slipping back again. This recent rally seems to be sticking but I know it could go the other way very quickly.

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.
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I don't have experience with hospice and PT issues but when my MIL began falling (in her early 80s) because she had back pain from a broken back and subsequent surgery, then a pain pill addiction, she didn't do much exercise so she was very weak. Once in LTC she was approved for PT but then once they see that she either doesn't participate or plateaus, they won't pay for it no matter what. It's amazing that your dad still has that drive to improve. I'm wondering if PT is uncommon while in hospice and so they don't think they'll get reimbursed for it? Or his doctor hasn't ordered it because he/she thinks it's not going to help him?

"(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.
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marydys May 19, 2021
Dad has plenty of money to pay for PT so I may just arrange for it. I suspect he won't be able to do much or to improve much at all. I'm just trying to get it ordered because I do think it will be covered... and again, it may be only a few sessions because he may not be able to do anything.

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.
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