Talking through rehab placement and transport

[PeterPan]

So I'm going to apologize in advice, because this is in the weeds and I'm not sure it has a great solution. Nevertheless, I need to talk it out, so here goes.

Currently Dad is in hospital in one big city and they want to move him to rehab. They're projecting 2-3 weeks of therapy to discharge and assume he'd return at that point to his assisted living in that big city.

There is some skepticism on our part as to whether this is going to work out. And there's the question of how I stay close to help with anything while he's in this rehab placement. It's 3-4 hours from me, so I can't be there. That means the rehab placement has to be reliably awesome OR

We could bring him to my big city. And there are some perks to this, because it would get him near the clinic where I'm doing my HBOT. They have not only the HBOT but other things that might reverse the inflammation from the vaccine that caused this, maybe improve his back problems, etc. 

BUT if I bring him to my big city, how in the world do I transport him? A 300 pound, 6'4" man is not a small deal. He can squish in a car normally, but right now he's walking short distances with a walker. It's like this vicious circle of not well and needing treatment but not well enough to go (easily) to the place where he could get that treatment. That leaves him only with PT offered by the rehab/nursing place, nothing else, even if the stuff at this clinic would be great and actually turn things around.

So I'm not saying not rehab. He must be in a rehab/nursing facility. But do I bring him to my big city NOW and try to transport him to this clinic and get him these extra things? He knows the writing is on the wall and that he's in trouble and that what he's being offered isn't going to work out well. He can tell. And the irony is, 6 weeks ago when I first offered to bring him here, he could still walk short distances (10-20 feet) independently, meaning it would have been easy. But then he wasn't motivated. Now he realizes he's in trouble and wants options.

What am I missing? Is this easier than I realize? 

I made some short lists of potential placements in the big city near me, and I could place him potentially within a 15 minute drive of the clinic. He can sit that long to go there, so long as I can get him in and out. If he were well enough, he could use public disability transportation. In his big city he's already set up for this. They can transport you in a wheelchair, with a walker, whatever. I assume (but can't presume) my big city also his this. But he's certainly not ready to do that quite yet. 

So are there options here or ways to approach this that I'm not thinking of? 

Also what stinks is that the social worker wants a short list tomorrow. I can visit the places in my big city to feel confident about that short list. But for a short list for his big city, I'd need to go back and work on it. Now I suspect that with the combo of google and the medicare.gov reviews that the places on my list are all fine. But still, I'd actually refine it if I were there and visiting the places. But if I want him here, in my big city, then I don't need to do that. And if I want to leave him there, I need to go there and tour some places.

Additional data. It's 177 miles from the hospital he's at to a potential placement in the big city near me. So if that's $200 + $3-$5 per mile, then that's $1-2k for the transport. Is that crazy? 

Like I said, I just need to think it through. I spent days with my dh saying not to consider bringing him here, but he was under the impression that it wouldn't be covered for him to be here. The transport might not be covered for such a distance but the placement would be, no problem. So in a dream world, I'd bring him here and give my dad access to both the PT of rehab AND the extra therapies at the clinic. Or we could place him in some random rehab in his own city and hope that he gets strong enough that he could come here and stay somewhere and go to that clinic daily more easily. But if he actually recovers with just rehab, then he won't need to do that. And if he doesn't, could he decline even farther? 

I'm really not confident of how this is going, nor is he frankly. These are student doctors and just nothing is being done. PT is basically saying if you tried harder it would go away, and nothing acknowledges what is going on. And the trajectory of this makes no sense. These student doctors glibly say he'll get back to where he was and the PT doesn't seem to think so. He had been walking independently in January and the hosptial PT just says walking with a walker. If he continues to need support, he can't go back to his assisted living anyway. The whole thing is just numbing.

So I guess first steps. How would I get him into the clinic if I brought him here? Right now he's in significant pain with a pinched nerve. So everything is tight and sore. He can sit for maybe 45-60 minutes and sit to eat. He can walk short distances with a walker.

What am I missing? See anything here? It's very hard to look at the man who was spritely just a few months ago and not be able to fix it. Sometimes he has this look of just wanting to get up and run, because he ought to be able to at least get up and walk. He wasn't decrepit. He was quite active until the vaccine.

[PeterPan]

I can call the other big city places tomorrow. Some of them might not even have openings. It seems like that is the constant knock, that the best places are hard to get into. There were one or two in his big city that were quite impressive for their therapy focus. There were four that had 5 star staffing levels and another four that had 3 star (average) staffing levels. In my big city I found six that had 3-5 star staffing levels.

I was deferring to staffing levels in making my list, since he's a 2 person assist to go use the bathroom. If they have below average staffing, the might have to wait a long time to get help. I discovered this by calling places on the weekend. One actually fessed up and said with weekend staff being low he would end up waiting and to be careful.

So again, just talking out loud here, I think if I could get him into a really good rehab placement that is in his big city and satisfactory, that might make it easier to give him some options. The clinic in my big city isn't about the pinched nerve. It's about the overall inflammation, structural damage, etc. But the irony is, you get in HBOT and all those tight muscles loosen up. Makes you wonder what would happen.

[Terabith]

I'm not sure that a rehab place's schedule of doing PT and such is going to be consistent enough to allow for stuff like HBOT?  

[PeterPan]

1 minute ago, Terabith said:

I'm not sure that a rehab place's schedule of doing PT and such is going to be consistent enough to allow for stuff like HBOT?  

Yeah, I wondered that. This clinic has hours from 7:30 am to 9:30pm, so I figured we could squeeze it in. But yeah it's an issue. They're supposed to do PT on him daily, so surely they'd get into a routine. If they did it in the afternoon and we did his clinic stuff in the morning, it could work. Or it could feel crazy, lol.

[Storygirl]

I'm not really sure how realistic it will be to add on outside therapy to his rehab. Could he complete his stay in rehab (in whichever city) and then stay with you for a couple of weeks before returning to his assisted living and do the additional therapy? Instead of piggybacking, doing one after the other?

[prairiewindmomma]

I’d be more inclined to believe the PT that he will be walker bound from now on.

 

I also think it is time to seriously consider moving him closer to you. The odds of him needing more care in the coming years are high. (I mean, short of him dying suddenly, it’s inevitable.) 

I would plan for him to be in a facility by your town with the thought that you are going to be cycling him in and out of there over time over the next decade or two. If we are talking nerves, disks, and low muscle tone, I wouldn’t expect to see much of a bump from HBOT in those areas—maybe some clearer thinking—but HBOT is not going to give him a new spine or a 6pack, iykwim.

[matrips]

You mentioned before that money wasn’t a concern and you wanted him in the best place. (If I’m remembering right).  If so, I would have him transported to your city, as close to you as possible so you can visit him in rehab more frequently and keep an eye on progress and his treatment by the staff.  And hire a local wheelchair transport to appointments within your city.  My mom stopped being able to ride in my car, so we just the wheelchair transport.  There are the official big name ones, and then there are the local guys who turn a minivan into a wheelchair transport.

[Storygirl]

I agree with @prairiewindmomma that he's very likely to need increasing amounts of attentive care from you from this period forward, and that moving him closer to you permanently is a worthwhile discussion to have.

[Terabith]

What is the reasoning behind where he is currently?  I think him being closer to you would be a good thing, but a lot of times there are other factors that should be considered.

[PeterPan]

52 minutes ago, prairiewindmomma said:

I’d be more inclined to believe the PT that he will be walker bound from now on.

Yeah, this hospital is like the set of Good Doctor. Every doctor coming in is a student under the age of 25. Seriously. So there's just not this length of experience. So the doctor will say glibly this or that and the 45 yo PT is like nope, walker for good, safer, more realistic. And that sucks. It doesn't suck because it's safe and was his progression anyway. He had been falling over the last year when tired, so she's right a walker is safer. 

But if that's where it's going to pan out, how do I transport him? I guess strong walker with walker is easily transportable. It would mean he could get in a vehicle. I guess in reality that would be ok.

So yes, you're right, believe the person in the room with the most experience. It makes sense when you say it that way, lol.

58 minutes ago, Storygirl said:

I'm not really sure how realistic it will be to add on outside therapy to his rehab. Could he complete his stay in rehab (in whichever city) and then stay with you for a couple of weeks before returning to his assisted living and do the additional therapy? Instead of piggybacking, doing one after the other?

I like the logic of this. The issue would be that a rehab like this is being paid for by insurance and has limits. So he would be discharged and need a place to stay. 

I'm looking into whether he could get one or other of the therapies the clinic here was suggesting they'd do on him so that he could get them in his big city.

56 minutes ago, prairiewindmomma said:

I also think it is time to seriously consider moving him closer to you. The odds of him needing more care in the coming years are high. (I mean, short of him dying suddenly, it’s inevitable.) 

Yes, this is the real problem. His place where he has been is barely safe for him. It's not safe now. To return there at all he would need a placement closer to staff so they'd assist him sooner and have to be walking with his walker again. My dh was against me bringing him here permanently but I'm not sure why. Honestly dh didn't go on the last trip. The tragectory isn't so good. And that's a whole other thing, where I would want him if I were bringing him here. The problem is the complexity of his care. It's mind boggling to think about. He has a great set up in his big city, with all VA care centralized, meaning he goes to one place and gets EVERYTHING. When you literally have every system in your body affected, you can't beat that. It's the reason I left him there, as illogical as it seems. 

But I think you're right those are two separate questions. One, where would I put him for this rehab stage, and two where would I want him if I were bringing him here permanently. 

So I'm just thinking out loud here. My thing I've said since I place him in AL was that I would bring him here if he were permanently in a nursing care facility, because he would no longer be able to enjoy the city he was used to (hospital care, transportation, assisted living, proximity to his siblings). This episode has pushed the envelope, but really the entire team seems confident after good rehab he can return to AL. What I want to do his change his apartment (since they're half empty anyway) to a 1st floor unit that would be easier for him to get assistance, easier to walk to the dining hall and lounge, etc. And maybe near the elevator to go up to the 2nd floor lounge where they play wii.

If I bring him here, I have to take him all around the state for his care. Mental health is 2 hours one direction, MRIs for cancer are two hours another direction. Literally. If I leave him in his state, he goes to one hospital 15 minutes away and gets it ALL. For real. Even doing it privately is a pain in the butt, because this is the system he's used to. So as long as he needs to interact with that, he needs to be there.

1 hour ago, prairiewindmomma said:

If we are talking nerves, disks, and low muscle tone, I wouldn’t expect to see much of a bump from HBOT in those areas—maybe some clearer thinking—but HBOT is not going to give him a new spine or a 6pack, iykwim.

Yes, that's the problem. There's a lot that just has to come with time/therapy/work. And the clinic here had kind of made it sound like the IV ozone therapy was actually a simpler treatment given his condition. I was looking at some studies, and IV ozone actually has a really good track record at taking down inflammation. It might be kind of just enough without being so much. As in it might be done just a bit and not interfere with his rehab, vs. HBOT which is this huge commitment. I agree with Story that it's too much to do both. He would have to do rehab THEN the HBOT if he wants HBOT. He would need rehab to be strong enough to navigate into HBOT, given that he's a two person assist. 

If rehab gets him well enough to use the disability transportion he had previously used (which works with wheelchair, walker, anything), then he can go to HBOT himself. I can ask the clinic. If it would only take 1-3 visits to get enough of the IV ozone to make a difference (which I think is the case that it's a brief thing, not tons of sessions), then I might be able to make that happen and leave him at a rehab i his city and have my conscience clear.

1 hour ago, prairiewindmomma said:

I would plan for him to be in a facility by your town with the thought that you are going to be cycling him in and out of there over time over the next decade or two.

If he's well enough to go back into AL, he needs to be in his town. His care needs would be untenable in our state and frankly when I'm with him a lot my whole being tanks. It's very stressful. It's a situation I can't make better. And where he lives tends to get a lot of vets, which means he has something in common with people. That makes his quality of life good. 

And the doctors, the PT, everyone is swearing they can rehab him enough to return to AL. 

1 hour ago, Storygirl said:

he's very likely to need increasing amounts of attentive care from you

This puts it into words very well. It's honestly not clear. I'm worried but the doctors and hospital PT were adamant this would turn around.  I think it will be very obvious whether it's turning around, because they were talking 3 weeks. So it's a decision I could reassess after a few weeks of rehab in his city.

The more I thought about it, the more I realized there's a place in his city that is stronger (to all appearances) at rehab than ANY of the options I found in my city. That would be a reason to keep him there. I need to research the place more and call them for availability. If that place, which is only rehab, has an opening, I think I will keep him there and just try to make the IV ozone available to him for a couple sessions and punt on the HBOT question. I think as you say that the PT is more important and has to come before the HBOT. The IV ozone to bring down the inflammation is probably easy to make happen. That would be the easiest solution all around.

1 hour ago, matrips said:

 And hire a local wheelchair transport to appointments within your city.

You know I need to look into this. His city has disability transport that he uses. (He likes to be independent and he can call, schedule, boom.) He's saying he doesn't want to be back in a wheelchair, and right now he has declined enough that he would be difficult to transport with a wheelchair. He had become so weak in his core that he was slumped to the side. They've been working on having him sit in a chair 30-45 minutes a day. He seems to be sitting upright in the chair *less* as time goes, instead of more. He's literally in bed most of the day now. So it's really no longer a thing to say he could just jump into his wheelchair and go. The transport to get him to my city would be on a stretcher, which would be very uncomfortable and stressful. 

And even to say wheelchair transport, I've pushed my ds at around 75 pounds in a stroller and that was a huff. A 300 pound man in a wheelchair would be astonishing. I doubt I could move him. I couldn't get him in the door or keep him safe. That's what I'm doubting is my own ability to do any of the things I wish I could do. If he had taken us up when we mentioned it 6 weeks ago, we could have. At that time, he could use transport in a wheelchair. Now he's just in bed. They have to get him back going to where he's even well enough to do transport.

I'll keep thinking about what y'all have said. I need to balance my idealism (what I wish I could make happen) with reality. And it's hard to see reality. I think that's an important point about whether he needs increasing care. I told my dh that if he's placed in his city I would go once a week to ensure everything is on track. They're only talking three weeks (haha, famous last words). I imagine this is more like 6-8 weeks or even longer, but insurance starts with agreeing to the 2-3 weeks and then they continue paying if there's progress.

But continuing to need assistance, well if he's able to safely bathroom (even if with a walker) and able to enjoy where he has been living and able to self advocate and able to enjoy proximity to the VA hospital, I want to leave him there. That's his world and that makes for the  best life. If those factors erode (needing more care than his place can provide, not able to go out, not able to participate in activities), then all reason for being there ends. Then he needs more care, a nursing placement, and I bring him here.

So I think we've established that he's not currently strong enough for me to get him to HBOT as is. If he does rehab in his city, I could possibly get him to an IV ozone therapy treatment there. I found a place and it's not necessary to bring him here just for that. Or bring him here on the thought that we do both, first rehab and then the rest.

Maybe what I'll do is plow both directions and see what opens up. 

1 hour ago, matrips said:

My mom stopped being able to ride in my car, so we just the wheelchair transport.  

When you do this, how much do they do? Like would they wheel him out and in buildings? Or it's curb to curb? What you're saying makes sense though, that I'm not limited to public transportation, that he could do private. 

I think I just need to talk with the clinic, talk with the places in both cities, see what opens up and makes sense.

1 hour ago, Terabith said:

but a lot of times there are other factors that should be considered.

Bingo. He sees a variety of medical disciplines, and in his state the VA does those all in one hospital. In my state you have them spread over 5 hospitals. I can't handle that. If he's in a nursing home and not coming out, bringing him here is ok. If he's in rehab briefly here and then goes back to his state to continue his care, that's ok. But bringing him here permanently when he needs all these things (dental, psychiatry, cancer, etc.) is just too much. Can't do that.

[Terabith]

Yeah, those are excellent reasons to leave him in the town he's in.  I wouldn't mess with that.  

[prairiewindmomma]

I am going to ask bluntly, if you are talking cancer, what’s your timeline on that? Normally one doesn’t pause to go to rehab if you are mid-treatment. I said normally—are you at the point of looking at just quality of life decision making?

I totally understand how one stop shopping at the VA is helpful. I would just keep in mind that when you are talking about being bedbound, some of those decisions might be re-evaluated.

If he needs to be cross-state for your mental health, be at peace, but I would find a communication work around...like hiring a nurse to work as an advocate/case manager. You are going to be needing more eyes on him as things move forward.

[PeterPan]

14 minutes ago, prairiewindmomma said:

I totally understand how one stop shopping at the VA is helpful. I would just keep in mind that when you are talking about being bedbound, some of those decisions might be re-evaluated.

That's the thing. The doctors swear the rehab will reverse this. The PT says it should improve to walker. The youthful doctors were more glib, saying he should be how he was before, lol. Good luck.

So yes, bedbound and not really dying is a mess. If they can get him unbedbound, then being in his own city is still good.

14 minutes ago, prairiewindmomma said:

if you are talking cancer, what’s your timeline on that?

Oh he's had all kinds of cancer. I think most are in remission now, but now he has the lesion on his spine, which is progressive and considered the cause of his walking problems. But that isn't what got worse. It's a pinched nerve elevating his pain to the point where he can't stand it (stand, haha). 

So they do MRIs to track things and regular visits and whatnot, but I think the cancers are all under control right now. I agree dying and rehab don't make sense together, lol. 

If you see him, his body is just worn out. He's kind of 15-20 years older than his age. He has been that way for some time. He's par for the course at the VA and they have an entire wing of men like him. No joke. You walk the halls and that's what they say the whole way "fall risk" on every door. So he's normal there and gets treated very well. Even the janitors are respectful. For real. He'd never get treated so well in the outside world, because there he just looks sort of scraggly and odd. 

But I get what you're saying. And it's weird, because the doctors are like 20 days of rehab and the PT is like yeah whatever the doctors say and the social worker goes along. And I'm the one saying hello, is this actually reality?? And that's the crystal ball i don't have, the reality check, lol. But at least on the cancer, it's in line. The lesion is monitored with MRIs every so often. It's half the joy of retirement, going to the hosptial so much, lol. 

14 minutes ago, prairiewindmomma said:

You are going to be needing more eyes on him as things move forward

I'm going to start by being there. His *mind* is sound, which they know full well, so he can advocate too, sometimes rather forcefully, lol. He's the one who showed up and told them they had to check him in and make something happen, lol. 

You know, I think that's the line that's tricky to walk, where you're making sure things are happening while not doing anything for him that he can do for himself. The social worker expects me to pick the place. They let him say rehab vs. therapy coming to AL. So they clearly know how that falls. And the social worker hasn't said it's bad to leave him in his city. She was willing to go either way. She agrees there's that tension of having me close vs. having access to systematic care he's used to. 

Edited May 17, 2021 by PeterPan

[prairiewindmomma]

We did rehab while dd was terminal. It was quality of life for her. It’s just that if he is bedbound and looking at a 3-6 month window, then you look at decisions differently. Yes, rehab, but then dental doesn’t matter as much, iykwim.

[Pen]

I haven’t read everything. I got to VA and assuming he’s a veteran thought I would comment that a friend of mine’s husband had to have a leg partly amputated and VA transported him from hospital to Rehab in two different cities. While he is in rehab she’s been working on their house - ramps installed etc. the VA will transport him home after rehab. The leg amputation was related to war so maybe that’s different.  But anyway VA has transported him hundreds of miles now from one step to the next

 

My father / whose problems are not VA type things - has generally had transport in some sort of van set up for big electric wheelchairs.  But if there’s someone strong to help, a regular sedan car can be used and a folding non electric wheelchair put in trunk.  That might be easier yet if

just needing Walker not wheelchair.   The strong person able to move him is key 

for someone 300 pounds, idk, my father is under 200 pounds so a strong assistant can help shift him in and out of car.   I think they learn methods to help with the transfers

Edited May 17, 2021 by Pen

[PeterPan]

42 minutes ago, Pen said:

But anyway VA has transported him hundreds of miles now from one step to the next

Oh that's interesting. Yes, this is considered a service related disability and a VA placement, meaning they will transport. So you may be right that they'd make it happen. That opens doors up.

I did a little more checking, and the place in his city that is haunting me (that may not have openings, sigh) is connected to a hosptial. He would have no issues of safety or needing me constantly if he's there. So we just have to see what opens up. If he could get in there, I'd go the simplest way and do that. I think it's a thing I need to talk through with the social worker. And I can visit all the places on my short list tomorrow, which might make me more confident too.

45 minutes ago, Pen said:

for someone 300 pounds, idk, my father is under 200 pounds so a strong assistant can help shift him in and out of car.   I think they learn methods to help with the transfers

Yeah, he's a big man. Even my grand intentions of trying to help him get some alternative therapies that would help are probably just unrealistic until he has had enough PT to move himself. 

[TechWife]

It sounds like rehab at the very good place in his  if city is how you are leaning. I think that’s a good idea. However, it should be the hospital social worker calling to ask if they have placement available - that’s their job and you have so much on your plate, let them do it. The rehab place will have questions and they probably have an intake questionnaire for them that the social worker already has. 
 

Hopefully everyone is right and he will be able to discharge to AL. 

That takes care of a plan of action to try for tomorrow. 
 

Thinking toward the future - there is a lot to think through- it is overwhelming, so give yourself permission to feel overwhelmed sometimes. It’s totally normal reaction.

In mind, having done this before - him staying where he is for rehab and getting discharged to his same AL buys you some time, but it’s time you need to use wisely. 
 

It really sounds like it’s time to think through what the next 10-15 years might look like. I remember my parents were healthily for the most part as they were going into their eighties, but once they were in their eighties, their health declined fairly quickly in many different ways that we just weren’t expecting - my father lost his vision and then developed dementia. My mom has smaller things going on  but they added up over time and treatment  had to be balanced carefully. All of this is just my long winded way of saying no one can really predict what is coming down the road. You want your dad to be in the best place he can be as he ages and part of what makes something the best place for him is supportive  family. Your support is limited by the realities of your life - kids, husband, job - and the sheer logistics of care - not just travel time, but time spent with paperwork, coordinating care needs, shopping, etc. 
So, first thing to do after you get your dad in rehab is to have a talk with your husband  - first to find out why he didn’t want your dad local to you. He may have excellent reasons for this being the case. Also to talk about how hard these recent weeks have been emotionally and logistically. You might need to consider finding an assisted living closer to you. I know that will be a big change for him, but it also is a change for you and you all need to weigh things carefully. 

Since he has Medicare, it isn’t 100% necessary for him to get his care through the VA. Does your city have all of the specialists he needs? If so, then he can likely get the care he needs there with Medicare paying for it. There are some things that Medicare won’t pay for that the VA does (at least they did for my dad) that you could stack appointments on one day for - namely hearing aids and glasses or he could just pay for them out of pocket locally. Adding a Medicare supplement for copays and deductibles is something you could talk to him about in the future. 
 

Is your father in the same state you are in? If not, and if he gets to the point that he needs nursing home care, you need to know that it will be  difficult to get a placement in a nursing home in your state. It is a sticking point, and usually due to the way the nursing homes are funded as they get partial funding through the state and then they have different rules about how to establish state residency. 
 

So, to summarize, because I’m really long winded;

- tomorrow have the social worker call about placement in the rehab that you think will be best for him. 
-until you learn differently, expect him to discharge to his AL

- have a chat with your dh about possibly bringing him to live closer to your family. If that is something you conclude is possible, start scouting out AL facilities in your area, when you find some that might work, talk to your dad about bringing him closer and see it he will visit one or two of them with you. 

- If he agrees and likes one of the choices, make a moving plan. Part of this will entail getting him a primary doctor and then getting him established with new specialists, but the primary doctor can help with that, too. We can talk more about it if you get to this point with him. 

- setting him up on an AL closer to you and on your state will reduce pressure on everyone, I think. It will also put all of you in a better position to manage further changes in his health as they arise. 

I hope some of these ideas  help. 

 

[Carol in Cal.]

The VA has (usually, and ‘depending on type of military service/experience’) much better coverage of long term care in facilities than Medicare does.  And having everything close together is immensely valuable.

Plus the VA has some in house facilities that have an absolutely awesome reputation.  For instance, there is a VA nursing home in Sonoma County here in California that is EVERYBODY’s dream that has ever visited.  I keep hearing about this place like it’s Shangri La (have never seen it, personally), from multiple people who don’t know each other, and so if someone could get in there, that would be fantastic, but other places are more meh.  So it’s important to know the specific reputation of the specific VA facilities you’re considering.

 

Edited May 17, 2021 by Carol in Cal.

[PeterPan]

7 hours ago, TechWife said:

Is your father in the same state you are in? If not, and if he gets to the point that he needs nursing home care, you need to know that it will be  difficult to get a placement in a nursing home in your state. It is a sticking point, and usually due to the way the nursing homes are funded as they get partial funding through the state and then they have different rules about how to establish state residency. 

I had not heard of this, but that's definitely an issue. 

Thanks for the lists. I'll work on it.

7 hours ago, Carol in Cal. said:

So it’s important to know the specific reputation of the specific VA facilities you’re considering.

Yes, the VA has been VERY generous with him in ways that would not happen with private pay, Medicare, etc. The VA in his state (which is not mine) contracts with facilities. So those ltc facilities have overall ratings and then sub ratings on the medicare.gov site. I'm probably going to have to go back and visit them. She had given me a couple names. I made a list that is nicer places (more stars, more staffing) but it's just hard to find openings. So I don't know.

7 hours ago, TechWife said:

it is overwhelming, so give yourself permission to feel overwhelmed sometimes. It’s totally normal reaction.

Yes

7 hours ago, TechWife said:

Does your city have all of the specialists he needs? If so, then he can likely get the care he needs there with Medicare paying for it. There are some things that Medicare won’t pay for that the VA does (at least they did for my dad) that you could stack appointments on one day for - namely hearing aids and glasses or he could just pay for them out of pocket locally. Adding a Medicare supplement for copays and deductibles is something you could talk to him about in the future. 

That would be such a huge transition. He's a senior (not given to change) and a person (not given to change). And he's very used to this system. But you're right that's what it would look like if I brought him here.

We live and die by our choices. I can't make everything better. It's a lot to think about. I mean, really basic stuff like what does that mean if he's walking with a walker and trying to go to the VA for services. So I need to think.

[PeterPan]

Small update! Talked with the clinic in my big city, and they said don't bring him here, keep him there with his best continuity of care. So I gave the social worker my new short list and ... She found a placement!!! 

So my dad is getting moved, hopefully even today, into a lovely place in his city. It's a VA placement, so they handle everything, zero worries for me ($, transportation, etc.). 

I'm greatly relieved. I wish he had made a move on wanting the alternative options earlier, when I could have helped him. I had to realize he's declined enough that I can't reasonably make those things happen right now. He has to have care even be well enough to reach out and take advantage of those opportunities. And that was the clinic's point, that he can do those things later but right now he has to get enough care to be able to.

So it's all good. I'm ecstatic he has a safe, congenial, clean, cordial placement. One place I had called would have put him in a room with a ltc individual who would sleep all day. That's not good for his mental health. I like this placement much better, so we'll just hope for the best! And it's not a problem for me to go visit. 

Meanwhile, I'm going to call his AL and work on some changes. I want them to move his apartment to a location where it's easier to get service and easier for him to have proximity to activities. He's gone, so the transition is minimal. We'll just move it all and it will be set up when he gets back. If the PT and all these people are right, he should be back. I think that will make it safer if he's closer to the nurse's station, closer to the lounge where they do activities, etc.

[PeterPan]

13 hours ago, Carol in Cal. said:

The VA has (usually, and ‘depending on type of military service/experience’) much better coverage of long term care in facilities than Medicare does.  And having everything close together is immensely valuable.

Yeah, I didn't ask, but when my mind cleared with the HBOT, that's what I realized. This place is a VA placement, so it will probably be more generous for the length of stay. It's the right move, a good move. The social worker says it's a wonderful place.

[PeterPan]

Total side note, but I think @Storygirl had talked about removing a loved one from mailing lists. I went through and did a scad this weekend. It took about 2 hours but I did them all by emailing through the websites for each place. I'm making a list so I don't rewrite and bug them, haha. I'm surprised how congenial they've all been, replying back, thanking him for past donations (which is why he was on the lists), etc.

So there you go. Emailing, the new vogue way to get it done. I just hit copy/paste and into their forms and it was a snap.

[TechWife]

4 hours ago, PeterPan said:

Small update! Talked with the clinic in my big city, and they said don't bring him here, keep him there with his best continuity of care. So I gave the social worker my new short list and ... She found a placement!!! 

So my dad is getting moved, hopefully even today, into a lovely place in his city. It's a VA placement, so they handle everything, zero worries for me ($, transportation, etc.). 

I'm greatly relieved. I wish he had made a move on wanting the alternative options earlier, when I could have helped him. I had to realize he's declined enough that I can't reasonably make those things happen right now. He has to have care even be well enough to reach out and take advantage of those opportunities. And that was the clinic's point, that he can do those things later but right now he has to get enough care to be able to.

So it's all good. I'm ecstatic he has a safe, congenial, clean, cordial placement. One place I had called would have put him in a room with a ltc individual who would sleep all day. That's not good for his mental health. I like this placement much better, so we'll just hope for the best! And it's not a problem for me to go visit. 

Meanwhile, I'm going to call his AL and work on some changes. I want them to move his apartment to a location where it's easier to get service and easier for him to have proximity to activities. He's gone, so the transition is minimal. We'll just move it all and it will be set up when he gets back. If the PT and all these people are right, he should be back. I think that will make it safer if he's closer to the nurse's station, closer to the lounge where they do activities, etc.

This is all fantastic news! I am so glad and I know you will rest easier tonight! 

[TechWife]

4 hours ago, PeterPan said:

Total side note, but I think @Storygirl had talked about removing a loved one from mailing lists. I went through and did a scad this weekend. It took about 2 hours but I did them all by emailing through the websites for each place. I'm making a list so I don't rewrite and bug them, haha. I'm surprised how congenial they've all been, replying back, thanking him for past donations (which is why he was on the lists), etc.

So there you go. Emailing, the new vogue way to get it done. I just hit copy/paste and into their forms and it was a snap.

This is how to do it for unsolicited junk mail - 

https://www.consumer.ftc.gov/articles/0262-stopping-unsolicited-mail-phone-calls-and-email

[PeterPan]

53 minutes ago, TechWife said:

This is how to do it for unsolicited junk mail - 

https://www.consumer.ftc.gov/articles/0262-stopping-unsolicited-mail-phone-calls-and-email

I'm planning on doing this with him next time I see him. Unfortunately, the bulk of his mail is (embarrassingly) money asks. You give to one or three and they sell your name till you're throwing away piles. They even send coins and $1 bills and small checks encouraging the elderly to read their large print, sob story money asks! So I made $10 in my efforts, haha. Scratch that, it was $7.75. Still, not too shabby, lol. 

So removing him from each charity was necessary because he had done things to get on their lists (not unsolicited). But I'm going to do the do not call registry next. I did the stop through the credit reporting that is good for 5 years. Too much hassle to make it permanent. Hopefully since he's no longer donating this will slow it down. 

[matrips]

20 hours ago, PeterPan said:

When you do this, how much do they do? Like would they wheel him out and in buildings? Or it's curb to curb? What you're saying makes sense though, that I'm not limited to public transportation, that he could do private. 

They would pick her up at her assisted living.  She would wait in her wheelchair (and later her motorized wheelchair) in the lobby for them.  They would put her in the van, in the wheelchair, strap it down etc.  Then wheel her to the doctor (sometimes to the lobby, sometimes to the office itself). But never just dropped on the curb.
 

 Depending on how long the appointment was, they would either wait or have the doctor call when she was done, and then they’d pick her up and take her back to her AL.  

Some of the smaller, private drivers went above and beyond.  One took her to our house for my kids confirmation.  We had a small step, so he took her out of the wheelchair, got her standing with a walker, out the wheelchair up the step and then got her back into in.  Believe me, it was a process!  He was young and sweet and patient. His prices were more like $25-35, depending on distance, waiting etc.  The bigger services were at least double or triple that. 

 

[matrips]

5 hours ago, PeterPan said:

Small update! Talked with the clinic in my big city, and they said don't bring him here, keep him there with his best continuity of care. So I gave the social worker my new short list and ... She found a placement!!! 

So my dad is getting moved, hopefully even today, into a lovely place in his city. It's a VA placement, so they handle everything, zero worries for me ($, transportation, etc.). 

That’s a huge update!!! It sounds perfect.  That’s amazing he could get a va placement. They were near impossible here.  And I’m glad he gets to stay near his doctors and care centers- it sounds like he has had a great setup with that.