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Going to appointments with a walker


PeterPan
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So this is the continuing saga of my dad, rehab, assisted living, the curse of the covid vaccine, etc. He's doing well in rehab and making progress. He can sit up (mostly) straight in his wheelchair and can walk 300+ feet with the most stable kind of walker (not rollator) with supervision. He is NOT allowed to walk with his walker without a worker and presumably that's what they're working toward.

So problem one I'm working through is how to make sure the inhome follow up therapy is better and actually keeps him from declining again. I'm looking into assisted living options that are part of the chain he's currently in for rehab (which is technically a long term care building/rehab, ie. nursing home) because that would keep the really good therapy the same. This company has their own therapy and it seriously kicks butt. 

The 2nd problem is understanding how he would get from this AL to the VA hospital with a walker. He can use the disability transportation service, the but place I found that is really nice is *1 mile* outside their service area. I kid you not. And what does that look like even then? Does one use their *wheelchair* for transportation and their walker only for short distances? 

The whole idea has been to promote independence, but it just seems so contradictory. This is very uncharted waters. Maybe the social worker can put it into plain english? Honestly, these people lie. They all lie. The doctors said he would get back to "how he was" and he's not going to. He WAS WALKING. Not with a walker. Walking. And he'll never be that again, and I don't know how that looks for being independent and using services and going places. I get it for nursing home, declining. But I don't know what a long time of this as a life means, kwim? 

And I'm worried that I'll pick a wrong placement because I'm not seeing where this is going. But if I send him back to where he was, the inhome won't be as good. (no therapy gym, less service) I want him in a placement that at least has a small therapy gym in the building so he can get effect inhome care that maintains his ability to do what he can. But if he's on a walker, CAN he go to the VA hospital? He'd use his chair? What a stinking lot of walking tha would be. With a walker on a bus and up and moving all day, that doesn't seem practical. The bus can accommodate anything, but I'm saying the logic of what is practical is what I'm missing. And the whole point of being there was to keep him independent and using the services he's used to. If he can't mentally keep up or can't physically go, that's over. But I always viewed that as a transition to nursing/ltc. He would need that if we stopped therapy now, but hopefully if we continue a few more weeks that won't be the case. And I don't think the rest of him is declining to the point where death is immenent or giving up is appropriate. His family is very long lived and his brain still has a lot of spunk.

Sigh. See anything there?

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These things are so region specific, I don't have anything practical to offer except to say that my grandmother used a walker (not rolling) for many years. The tricky part was finding an assisted living facility who would take her because she needed someone to hold her belt to stabilize her. We did find one, but she only got an hour of physical therapy per week, however, a CNA did the recommended exercises with her every day. If your dad can get to the place he does not have to walk with someone, then you will have more options available.

Sadly, our disability bus does not offer any assistance. There is a driver, and he operates the lift. Many folks on walkers keep a wheelchair, and use that instead of their walkers. So they roll onto the lift, the driver secures the wheelchair, and brings them on board.

Is there a county, center for aging who could help you figure all this out? Some counties have social workers who specialize in geriatrics and they know everything about every local facility. Maybe the rehab he is in now has someone really knowledgeable. I would definitely just tell even his physical therapist what is weighing on you because he/she might know someone who can help or even has that info due to years of working with patients.

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What about a power chair or mobility scooter for long distances? I've seen a lot of people use them when they are at the grocery store or clinic, but then switch back to a cane/walker when they get home. It might work out for him as long as he ends up somewhere he could ride it right into his room/apartment. Our county has both buses that are accessible as well as the county agency on aging van that takes people to stores and appointments. The bus driver can't help people on or off, they just operate the lift and hold bags while people get settled, but the agency for aging van does have people who will help more.

On another note, I don't the specifics of your dad's situation, but my ninety-something grandmother went from being able to walk/function independently to being bed ridden after a back injury. She went to an in-patient rehab that sounds a lot like your dad's and they got her to a stronger/more functional level than she was before her injury. It took awhile and the real results didn't happen until later on in the process, but your dad may end up at a better level than it seems at the moment.

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17 minutes ago, Faith-manor said:

Many folks on walkers keep a wheelchair, and use that instead of their walkers. So they roll onto the lift, the driver secures the wheelchair, and brings them on board.

I think that's it. I couldn't fathom how it could be safe to go on an all day adventure with just him and a walker. When he goes to the VA, he goes for a long day, sorta like women window shop, hahaha. He talks with people, goes to the canteen, hangs. 

I wrote the new place I'm looking at to see what they say. Sometimes places will say they'll run you, but they only mean their regular bus. To make his appointments and be independent, he really needs a transportation plan. But let's see what they say. This place is $1k less a month while being more spacious and more updated. So there's room there to use private transportation and still be fine. He's just a very frugal man so paying $3.50 for the public disability bus (perk of a big city!!) is great to him. But this place is safer and a better placement for him now on every level. It would have been overkill before and basically it's essential. Now that I've seen it, I couldn't possibly send him back. And it's basic stuff, like this is a new building and the shower has a proper bench. It has more space for wheelchair movement around the apartment. It has a wall kitchen area instead of an intrusive penninsula like his current apartment. And it's a studio, so no pesky doors constantly banging his hands. When you're a big man, your wheelchair is big and your hands bang, sigh. And it has skylights so it's not dismal. Can you imagine?? All that AND less money AND skylights!!!

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2 minutes ago, eagleynne said:

county agency on aging van

Ok, let me contact the county the new place is in. It's literally right across the line. So the big city has sprawled beyond it's original county and the city bus is limited to the county. But you're right the new county might have some brilliant options.

3 minutes ago, eagleynne said:

What about a power chair or mobility scooter for long distances?

That's a good point. He's a little iffy on a scooter and has to be supervised or he can bang into people have have logistics problems. But you're right, that would be a MUCH better option for distance trips and easier to just load up and go. Might give him a lot of options. I've had him on a scooter for a couple Disney trips. Really, our paranoia aside, he can do it. Or he could. He has to be able to sit for that but they're getting him stronger. He might like it way better than a chair. Not to say anything about needing a chair, but he really really wants to not need a chair. And a scooter could be that middle point. It could be a goal with rehab to say get him strong enough that he can have a scooter instead of a wheelchair for distance trips. And when I go next week, I could ask the therapists whether that's *realistic*. You need a lot of strength to sit up for a scooter. He had actually gotten to weak to use one, but they're getting him back. And I like that it would I' be self reinforcing, where he's having to stay strong to use it. I will talk with them and ask if it's within reach.

7 minutes ago, eagleynne said:

On another note, I don't the specifics of your dad's situation, but my ninety-something grandmother went from being able to walk/function independently to being bed ridden after a back injury. She went to an in-patient rehab that sounds a lot like your dad's and they got her to a stronger/more functional level than she was before her injury. It took awhile and the real results didn't happen until later on in the process, but your dad may end up at a better level than it seems at the moment.

You're making me feel better! And if you are the one who posted this before, yes I've been thinking about this CONSTANTLY, lol. It can be done, it can be done, positive thinking, lol. His therapists are very upbeat. I think he was getting discouraged, because it's not a fun situation to be in. 

Well good, I think I'm getting a list here of questions I can ask the therapists when I go next week and I can see about options in what would be his new county. 

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I personally would try to step back a little and first ask some underlying issue questions such as

1. Why does he need the walker/ wheelchair?

(brain, spinal cord, strength, balance, peripheral numbness ...?) what’s actually going on? What if anything can be done about it and what is best life solution for dealing with it? For example: One friend of mine with walking trouble due to a brain tumor was told to switch to walking sticks / trekking poles because underlying trouble was balance due to the tumor, and the poles would help restore her balance with less life difficulty .  Another friend has an amputated leg which is obviously very different and I know that’s not your father’s situation, but just as an example. My father otoh is paraplegic and while for some time he had enough control of one leg to manage with a brace on the other and crutches (after a lot of rehab and he was younger and stronger when it happened and not overweight) he is now completely wheelchair dependent with two types (small light one, and heavy motorized one) for different circumstances. 
 

2. What would make your father’s life the best for him relatively short term?  Maybe a motorized wheelchair (or scooter?) would allow him to have more social time sooner than later?  If you were to consider that he might be dead this coming winter, what would be best for his next 6 months for his enjoyment of and quality of life? 

 

Beyond that I suggest talking with whatever social workers, patient advocates, area council on aging offices, local to him social services not in the hospitals for second opinions, etc, you can find to potentially help.   Keep asking. VA for example might be able to get him without it being “out of area”.  Or meet the vehicle at its end point and take him from there.  Surely it can’t be that the only option is being dropped off alone a mile from where he needs to be. 

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15 minutes ago, PeterPan said:

I think that's it. I couldn't fathom how it could be safe to go on an all day adventure with just him and a walker. When he goes to the VA, he goes for a long day, sorta like women window shop, hahaha. He talks with people, goes to the canteen, hangs. 

I wrote the new place I'm looking at to see what they say. Sometimes places will say they'll run you, but they only mean their regular bus. To make his appointments and be independent, he really needs a transportation plan. But let's see what they say. This place is $1k less a month while being more spacious and more updated. So there's room there to use private transportation and still be fine. He's just a very frugal man so paying $3.50 for the public disability bus (perk of a big city!!) is great to him. But this place is safer and a better placement for him now on every level.
 

yes Now is what has to be dealt with - not what used to be

Quote

It would have been overkill before and basically it's essential. Now that I've seen it, I couldn't possibly send him back. And it's basic stuff, like this is a new building and the shower has a proper bench. It has more space for wheelchair movement around the apartment. It has a wall kitchen area instead of an intrusive penninsula like his current apartment. And it's a studio, so no pesky doors constantly banging his hands. When you're a big man, your wheelchair is big and your hands bang, sigh. And it has skylights so it's not dismal. Can you imagine?? All that AND less money AND skylights!!!


It sounds good. 
 

Look into electric wheelchair too .   Or scooter.  He even might be able to actually go a mile on his own if necessary if he could use an electric wheelchair or electric scooter. 
 

in a city near us there’s an AL place where people seem to go to and from using the bike lanes with their electric wheelchairchairs and scooters

 

Im sure it add hugely to sense of independence!

Edited by Pen
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Honestly, him being independent will probably depend on his motivation and having someone advocate for him. You are far away.  Here is my experience with my father. When he was living with me, I could keep on top of him.  I had him back to 1/2 normal. He was making progress.  I could not handle having him live with us 24/7.  I knew when he moved to his own rental house, just a couple miles away that he would regress.  Because I was not there saying, "Dad, you need to walk.  Get up and let us walk down the sidewalk."  Several times a day.  If I didn't do that, it wouldn't happen.  He never got independent because his motivation wasn't there and no one was there to MAKE him. So if your dad is that way, you may just have to give up wanting him independent. My dad was in his 60's when that happened.

Now my husband's grandmother . In her 90's, she broke her hip. She lived alone.  6 months later, we went to a wedding.  She kept forgetting her walker.  I could barely keep up with her.  All motivation.  Had a lady at our church, who broke her kneecap in her 90's.  She was back to crawling on the floor with the 3yo just a few months later. She also took no pain meds..  Just amazing.

But, you can do all the advocating you want. If your dad does not have the same motivation, it just will not matter. Just get used to it. It is the way it is.

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7 minutes ago, Pen said:

yes Now is what has to be dealt with - not what used to be

What I'm also starting to see is care errors because he's trying to live between two systems and worlds. Like he's in his rehab, talking with their doctor on that doctor's rounds and then calling the VA. So the VA change something (fine) and then doesn't realize he's not at his apartment and sends a new med there instead of rehab. And these VA docs are sometimes foreigners and I think he's just having communication challgnes. But it's the system he knows.

The new AL is telling me that what they like to see, what works best, is he makes their doctor his primary and then hits the VA only twice a year to keep benefits. That's the jist. It would prevent errors and improve continuity, but it's a shift. He's used to just asking the VA and showing up at the VA for everything. I mean, he's on their super deluxe keep you fixed up plan. They even do his dental and eye glasses. 

So I hate to change what he's used to, but I think the way he's trying to do it may be fighting the system and may make for errors that could be dangerous. He'd be safer with continuity of care, which means changing like they're saying to this in house doctor. 

The new apartment would be AMAZING btw. I'm totally blown away. I hate to do so much change on him. It's stressing me out and I'm not 70 with a list of disabilities! But it would be so much safer for where he is now and how he functions now. I can't conceivably turn it down. It would actually be neglect to send him back to where he was because they don't have a set up that is quite safe enough for him. (less maneuverable, no seat in the shower, etc.)

12 minutes ago, Pen said:

in a city near us there’s an AL place where people seem to go to and from using the bike lanes with their electric wheelchairchairs and scooters

Oh that is a riot! Let me see if where he's at there are park trails nearby. You never know. It's the most swank part of the big city, which may be why the buses, ahem, don't feel the need to cross the county line and run there. 

13 minutes ago, Pen said:

Im sure it add hugely to sense of independence!

You're making a good point here too. As long as their staff doctor is GOOD, then he's still independent in his medical care. 

 

14 minutes ago, TexasProud said:

If your dad does not have the same motivation, it just will not matter.

I think his cognitive and memory are enough affected by years of medications that he does not have the ability to follow through on good intentions. So with him, it's better to pay to make happen what needs to happen or do it ourselves. He might want to, but he struggles to make it happen. He does better with support, so then he's only as good as the caregivers. 

That's why I started looking into this change, to get better therapy that I could make sure keeps coming to keep him going. But it will be what it is. If he declines again, I guess I need to picture what that looks like. And that's part of the problem. They're saying the contract is 6 or 12 months unless they can't care for him. So obviously if he needs nursing/ltc or rehab again, he can leave. But is it ethical to keep him there (in a different state) if he's needing more care but not nursing/ltc? What if that changes and I want him out and I can't get out of the contract because they say they could meet his needs? Like if they ramp up their care, the could be quite assisted and still living there. So then am I trapping my dad and not able to bring him to me? And if he's not going to the VA regularly but is doing his primary care through the AL, then why am I leaving him there? 

I'm just talking out loud.

It seems like a gradual decline is something I would see and we would simply give that 6 month notice or whatever the contract says it is. And precipitous decline they let you out for. So maybe that's the real solution, I'm there and gradual decline you see and make a plan.

I don't think there's a reason to think this is not workable for at least a year. There's zero reason to think this. (famous last words)

What I was actually trying to do, beside the better therapy and continuity of care, was get him a fuzz closer to his sisters so we could connect them. They haven't seen him. They would LOVE his new apartment and be totally jealous, haha. Not really, as they like their country life and freedom. But I think they'd be proud of the new place.

Thanks ladies. This is just stressful, that's all. It's details I don't know and don't see about where it's going. And while it sounds nice to ask my dad, he's clinical on every parameter and will just get stressed out. This is why they had him choose a POA and this is why I'm it, because sometimes you do hard things. And moving, choosing which state, choosing what is most important, that's really hard stuff. And we're not going to cave in to anxiety here. He flipped out the last time we moved him. At least now he can't disappear. It's just going to happen and they'll transport him and that's that. That's why I can't take him back to his old place and then change. Has to be all smooth, all figured out, all done. 

On the plus side, the sales lady for this new AL is some kind of peace speaking wizard. She really seems to think it's all going to work out and be great. :smile:

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Did I mention this new AL has *2* activities coordinators? For real! So they have more ability to make this happen so long as he feels well enough to participate. Basically he can say what he likes (Wii daily, he's huge on Wii bowling) and they'll do it. But it's just this change to make it happen and then making sure everything is in order and that everything will work out and that I understand it well enough to explain it to him and keep him calm.

The person from the AL wrote me back, and she did say that a lot of my questions get sorted out once they get the medical from the rehab. They need to see that data and then I think their AL people can give me the straight scoop. So that will be next week, after the holiday.

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26 minutes ago, PeterPan said:

What I'm also starting to see is care errors because he's trying to live between two systems and worlds. Like he's in his rehab, talking with their doctor on that doctor's rounds and then calling the VA. So the VA change something (fine) and then doesn't realize he's not at his apartment and sends a new med there instead of rehab. And these VA docs are sometimes foreigners and I think he's just having communication challgnes. But it's the system he knows.

The new AL is telling me that what they like to see, what works best, is he makes their doctor his primary and then hits the VA only twice a year to keep benefits. That's the jist. It would prevent errors and improve continuity, but it's a shift. He's used to just asking the VA and showing up at the VA for everything. I mean, he's on their super deluxe keep you fixed up plan. They even do his dental and eye glasses. 

So I hate to change what he's used to, but I think the way he's trying to do it may be fighting the system and may make for errors that could be dangerous. He'd be safer with continuity of care, which means changing like they're saying to this in house doctor. 

The new apartment would be AMAZING btw. I'm totally blown away. I hate to do so much change on him. It's stressing me out and I'm not 70 with a list of disabilities! But it would be so much safer for where he is now and how he functions now. I can't conceivably turn it down. It would actually be neglect to send him back to where he was because they don't have a set up that is quite safe enough for him. (less maneuverable, no seat in the shower, etc.)

Oh that is a riot! Let me see if where he's at there are park trails nearby. You never know. It's the most swank part of the big city, which may be why the buses, ahem, don't feel the need to cross the county line and run there. 

You're making a good point here too. As long as their staff doctor is GOOD, then he's still independent in his medical care. 

 

I think his cognitive and memory are enough affected by years of medications that he does not have the ability to follow through on good intentions. So with him, it's better to pay to make happen what needs to happen or do it ourselves. He might want to, but he struggles to make it happen. He does better with support, so then he's only as good as the caregivers. 

That's why I started looking into this change, to get better therapy that I could make sure keeps coming to keep him going. But it will be what it is. If he declines again, I guess I need to picture what that looks like. And that's part of the problem. They're saying the contract is 6 or 12 months unless they can't care for him. So obviously if he needs nursing/ltc or rehab again, he can leave. But is it ethical to keep him there (in a different state) if he's needing more care but not nursing/ltc? What if that changes and I want him out and I can't get out of the contract because they say they could meet his needs? Like if they ramp up their care, the could be quite assisted and still living there. So then am I trapping my dad and not able to bring him to me? And if he's not going to the VA regularly but is doing his primary care through the AL, then why am I leaving him there? 

I'm just talking out loud.

It seems like a gradual decline is something I would see and we would simply give that 6 month notice or whatever the contract says it is. And precipitous decline they let you out for. So maybe that's the real solution, I'm there and gradual decline you see and make a plan.

I don't think there's a reason to think this is not workable for at least a year. There's zero reason to think this. (famous last words)

What I was actually trying to do, beside the better therapy and continuity of care, was get him a fuzz closer to his sisters so we could connect them. They haven't seen him. They would LOVE his new apartment and be totally jealous, haha. Not really, as they like their country life and freedom. But I think they'd be proud of the new place.

Thanks ladies. This is just stressful, that's all. It's details I don't know and don't see about where it's going. And while it sounds nice to ask my dad, he's clinical on every parameter and will just get stressed out. This is why they had him choose a POA and this is why I'm it, because sometimes you do hard things. And moving, choosing which state, choosing what is most important, that's really hard stuff. And we're not going to cave in to anxiety here. He flipped out the last time we moved him. At least now he can't disappear. It's just going to happen and they'll transport him and that's that. That's why I can't take him back to his old place and then change. Has to be all smooth, all figured out, all done. 

On the plus side, the sales lady for this new AL is some kind of peace speaking wizard. She really seems to think it's all going to work out and be great. :smile:


check carefully on the doctor there   

If good / medically excellent, it would be super convenient 

but I think they are often Not good (though often have nice bedside manner) ... not that I had a lot of experience, but my son’s father had to be at more than one AL and staff doctors were not good for him 

 

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1 minute ago, Pen said:


check carefully on the doctor there   

If good / medically excellent, it would be super convenient 

but I think they are often Not good (though often have nice bedside manner) ... not that I had a lot of experience, but my son’s father had to be at more than one AL and staff doctors were not good for him 

 

I will check and see what I find. They gave me the name.

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8 minutes ago, Pen said:


check carefully on the doctor there   

If good / medically excellent, it would be super convenient 

but I think they are often Not good (though often have nice bedside manner) ... not that I had a lot of experience, but my son’s father had to be at more than one AL and staff doctors were not good for him 

 

So the AL that he has been at did indeed bring in a nurse practitioner (not MD) and the whole thing was kind of flighty. Like they'd swoop in, not build relationship, quickly make a proclamation, and go out the door. It did not build confidence that the scrip or care was good and my dad's care is *complex*. 

This doctor they're using has an MBA and MD and is part of a geriatrics clinic run by the hospital in that north part of town (the swanky part).   And they seem to be saying a lot of good things, lie that they do a 2 hour intake if you go to their clinic, blah blah. That seems more relationship oriented. It might be we'd get out of it what we put into it. 

So I think the AL is right that they need to get his medical, review, and then I need to talk with the social worker about it and sort out what it means. I think *relationship* is what he needs to make it work, not just fly by night in/out. They also said there's a nurse practitioner, and I wouldn't be shocked if care gets deferred. I'm also not clear whether a geriatrics doc should be handling psychiatry. His team at the VA is very complete and integrated. So he calls with a side effect and they're considering everything, not just that he's old. He needs actual medical care, not just a hand to die peacefully. But I don't know the field. Just saying, see what is happening so far, I think the geriatrics will have limits.

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The questions I would want answered, based on what I know of your situation are:

1. How quickly is the tumor on/near the spine growing? I think that is going to be the driver of how long he is walking. As you have described it before, it's inoperable, and it's already impactful.  If they've typed it and it's a slow-grower, then I think you have flexibility. But if it's questionable as to how things are going to play out---then I really think starting to investigate powered chairs now is the way to go. You want him to have the core strength and balance now to do his transfers in the shower and to navigate around the apartment, but he's likely going to need a scooter or power chair for any kind of distance or longer in time length trip. Edited to clarify: he will likely have a walker AND a wheeled chair and a powered chair be switching between things as he needs to.

2. How are they going to handle the mental health aspect of things? That is the advantage of the VA system. They have seen it all. Dementia just by itself can get ugly, so maybe the new set up is good to roll with it all, but having had a relative thrown out of a facility, it's something I want to know up front, especially when you know there are already issues.

3. What are his therapy goals currently?

4. Can you do a safety plan exam of his living set up and adjustments when he is released from rehab? One of the things we did with dd as her situation changed was have an OT come out (paid for by insurance) to assess what we needed to do as she was going blind and as she became wheelchair bound. It was crazy little stuff I never would have thought of (getting a colored placemat so she could see where to put her plate) but so helpful. We have done the same with dementia family members also, to give them some anchors to work with.

Edited by prairiewindmomma
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11 minutes ago, prairiewindmomma said:

he will likely have a walker AND a wheeled chair and a powered chair be switching between things as he needs to.

This makes the sense of the new place an advantage. It has a more open floor layout.

12 minutes ago, prairiewindmomma said:

How are they going to handle the mental health aspect of things?

Yup I'm realizing this is going to be the number one question. The MRIs for his spine are every 3-6 months, not a problem. I think it's considered very slow. I found the word for the condition in the MRI report, and I was suprised because googlefu says there are treatments and the VA is saying this one doesn't. So I just took it that it's particular. But I don't think it's cancerous or spreading. It's more like unfortunate and increasing his discomfort. 

14 minutes ago, prairiewindmomma said:

Can you do a safety plan exam of his living set up and adjustments when he is released from rehab?

That's an advantage of this transfer. It's all their people, all in place, and they even have a memory care wing at this new AL. Oh, I'm just realizing that's why they have a psych that comes to the facility, isn't it? The sales lady called it a psychologist who could handle meds, but that's a psychiatrist. And since they have a memory unit, they end up needing that care? When I chose his previous AL I speciically went no memory wing because I wanted to keep him closer to people he functioned like. But now, having that wing may be a perk on multiple levels if it brings psychiatric care options that are regularly at the building. He just needs relationship. 

16 minutes ago, prairiewindmomma said:

What are his therapy goals currently?

Goals and funding intertwine. It's a VA placement so the VA looks at the numbers and says how much more they'll pay for. And when our goals go beyond theirs, we keep paying. And the new AL is on board with him staying in rehab till he has hit his goals. 

So far *he* has a goal of being able to do transfers to a vehicle. He wants to see his sister. And like everyone has said, each equipment and skill has levels of support. So hitting that car transfer goal would mean a lot of other goals got hit. He's down to 260 (woo-woo!) but I cannot possibly guide that safely. So he has to be very strong by their standards to be there, strong enough that I'm not going to see my father fall. I don't want to see that, kwim? But that would be his dream. And considering he was still walking in January, it could be within reach. He's standing independently with a person at the side for 90 seconds. He's now sitting up almost straight in his wheelchair. He can transfer from bed to chair without supervision. (scared me, but he's considered safe) I think the therapy is working and he's getting stronger. If he gets good enough to go to activities, it will be self reinforcing.

So yes, I'd like to see him able to do a car transfer because it gives him the option to see relatives, go to appointments or care he wants, etc. He does not have a goal of walking without a walker and the therapists have not considered it a safe goal. They'd rather have him zippy on a walker and safe.

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1 hour ago, PeterPan said:

So the AL that he has been at did indeed bring in a nurse practitioner (not MD) and the whole thing was kind of flighty. Like they'd swoop in, not build relationship, quickly make a proclamation, and go out the door. It did not build confidence that the scrip or care was good and my dad's care is *complex*. 

This doctor they're using has an MBA and MD and is part of a geriatrics clinic run by the hospital in that north part of town (the swanky part).   And they seem to be saying a lot of good things, lie that they do a 2 hour intake if you go to their clinic, blah blah. That seems more relationship oriented. It might be we'd get out of it what we put into it. 

So I think the AL is right that they need to get his medical, review, and then I need to talk with the social worker about it and sort out what it means. I think *relationship* is what he needs to make it work, not just fly by night in/out. They also said there's a nurse practitioner, and I wouldn't be shocked if care gets deferred. I'm also not clear whether a geriatrics doc should be handling psychiatry. His team at the VA is very complete and integrated. So he calls with a side effect and they're considering everything, not just that he's old. He needs actual medical care, not just a hand to die peacefully. But I don't know the field. Just saying, see what is happening so far, I think the geriatrics will have limits.


One problem we encountered was overmedicating - which caused yet more problems in a downward spiral 

 

from what you have written VA sounds better to stick with even if transportation is complicated.  Maybe it would even take buying a used wheelchair van and hiring someone to drive him when needed (I presume he’s past being able to drive himself even with hand controls etc... if not, if he could drive if he had a van set up right, that could also be possible)

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55 minutes ago, PeterPan said:

This makes the sense of the new place an advantage. It has a more open floor layout.

Yup I'm realizing this is going to be the number one question. The MRIs for his spine are every 3-6 months, not a problem. I think it's considered very slow. I found the word for the condition in the MRI report, and I was suprised because googlefu says there are treatments and the VA is saying this one doesn't. So I just took it that it's particular. But I don't think it's cancerous or spreading. It's more like unfortunate and increasing his discomfort. 

That's an advantage of this transfer. It's all their people, all in place, and they even have a memory care wing at this new AL. Oh, I'm just realizing that's why they have a psych that comes to the facility, isn't it? The sales lady called it a psychologist who could handle meds, but that's a psychiatrist. And since they have a memory unit, they end up needing that care? When I chose his previous AL I speciically went no memory wing because I wanted to keep him closer to people he functioned like. But now, having that wing may be a perk on multiple levels if it brings psychiatric care options that are regularly at the building. He just needs relationship. 

Goals and funding intertwine. It's a VA placement so the VA looks at the numbers and says how much more they'll pay for. And when our goals go beyond theirs, we keep paying. And the new AL is on board with him staying in rehab till he has hit his goals. 

So far *he* has a goal of being able to do transfers to a vehicle. He wants to see his sister. And like everyone has said, each equipment and skill has levels of support. So hitting that car transfer goal would mean a lot of other goals got hit. He's down to 260 (woo-woo!) but I cannot possibly guide that safely. So he has to be very strong by their standards to be there, strong enough that I'm not going to see my father fall. I don't want to see that, kwim? But that would be his dream. And considering he was still walking in January, it could be within reach. He's standing independently with a person at the side for 90 seconds. He's now sitting up almost straight in his wheelchair. He can transfer from bed to chair without supervision.

 

that’s excellent!!!

 

if he can do that he may well be able to reach car transfer, and working toward a goal, weight loss should be good too! 

55 minutes ago, PeterPan said:

 

(scared me, but he's considered safe) I think the therapy is working and he's getting stronger. If he gets good enough to go to activities, it will be self reinforcing.

So yes, I'd like to see him able to do a car transfer because it gives him the option to see relatives, go to appointments or care he wants, etc. He does not have a goal of walking without a walker and the therapists have not considered it a safe goal. They'd rather have him zippy on a walker and safe.

 One thing to be aware of - falls can happen easily in circumstances like these

 

my father has had falls from wheelchair tipping from tilted ground, from a wheelchair van operator bringing up ramp too quickly so that it acted like a catapult, various falls over years since the paraplegia... 

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How’s his balance?

 

The catch is discerning how much backsliding is lack of use and how much is medical impairment? If there is a neuromuscular component sometimes you won’t see a regain and it very (very) difficult on adults for people push “try harder.” Just something to be mindful of. 
 

If balance is a significant issue, a walker is dangerous. They can fall backwards and sideways. 


Yes, we kept a fold up wheelchair and a Drive Nitro Rollator. It has better balance, wide & big wheels, and a comfortable seat. 
 

Have you ever seen a transfer board? This would help you. IF the VA wold pay for a power chair, I’d be all over that. However, it’s difficult to get approved unless he meets specific criteria.  Did you know you can get drive behind controls? He’d sit and you would drive. Never have insurance cover a cheap wheelchair because insurance will often only pay for one every five years and the if he ever needs a power chair you do NOT want to cash flow that bad boy!

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1 hour ago, BlsdMama said:

The catch is discerning how much backsliding is lack of use and how much is medical impairment? If there is a neuromuscular component sometimes you won’t see a regain and it very (very) difficult on adults for people push “try harder.”

You're probably right that it's a combo. The lesion, the fractures, etc. are a downward slope, then with the vaccine, being cooped up (thanks covid), etc. he had less use. So not to be too oblivious but it sounds like you're saying where he ends up in a month is where he would have ended up anyway. The rehab will get him back to where he would have ended up anyway, that he was declining. And you're right. I hadn't parsed through it that way in my pea brain.

I need to think through what that means. That means there is no winning, only keeping the decline slow and not letting it snowball. 

And then what it means to decline.

My entire being is stressed thinking about it.

But thanks, because that actually made sense finally. He was declining anyway, he would have declined anyway, and I can stop being angry about the vaccine. 

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Well I wrote the new county he'd be in if we make this move. Turns out their aging board, because it's a more posh county, will line you up with volunteers if you request. I had wanted that for him ages ago, just someone to do a puzzle with him once a week or talk about the news! He can do a 100 piece puzzle if you do it with him and he enjoys conversation about topics. 

So who knows, maybe this new county will bring new opportunities. And there's not really anything to worry about till next week when they finish the file review. They'll probably have thoughts and that county agency will hopefully write me back with thoughts, all after the holiday.

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42 minutes ago, PeterPan said:

You're probably right that it's a combo. The lesion, the fractures, etc. are a downward slope, then with the vaccine, being cooped up (thanks covid), etc. he had less use. So not to be too oblivious but it sounds like you're saying where he ends up in a month is where he would have ended up anyway. The rehab will get him back to where he would have ended up anyway, that he was declining. And you're right. I hadn't parsed through it that way in my pea brain.

I need to think through what that means. That means there is no winning, only keeping the decline slow and not letting it snowball. 

And then what it means to decline.

My entire being is stressed thinking about it.

But thanks, because that actually made sense finally. He was declining anyway, he would have declined anyway, and I can stop being angry about the vaccine. 

I am sorry.  Parenting our parents just sucks.  You are thinking correctly.  All you can do!

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2 hours ago, PeterPan said:

You're probably right that it's a combo. The lesion, the fractures, etc. are a downward slope, then with the vaccine, being cooped up (thanks covid), etc. he had less use. So not to be too oblivious but it sounds like you're saying where he ends up in a month is where he would have ended up anyway. The rehab will get him back to where he would have ended up anyway, that he was declining. And you're right. I hadn't parsed through it that way in my pea brain.

I need to think through what that means. That means there is no winning, only keeping the decline slow and not letting it snowball. 

And then what it means to decline.

My entire being is stressed thinking about it.

But thanks, because that actually made sense finally. He was declining anyway, he would have declined anyway, and I can stop being angry about the vaccine. 

 

2 hours ago, PeterPan said:

Well I wrote the new county he'd be in if we make this move. Turns out their aging board, because it's a more posh county, will line you up with volunteers if you request. I had wanted that for him ages ago, just someone to do a puzzle with him once a week or talk about the news! He can do a 100 piece puzzle if you do it with him and he enjoys conversation about topics. 

So who knows, maybe this new county will bring new opportunities. And there's not really anything to worry about till next week when they finish the file review. They'll probably have thoughts and that county agency will hopefully write me back with thoughts, all after the holiday.


Iirc we both had fathers heading into vaccination at around same time, and both knew there was a big risk with it, but also potentially a very big upside in improving short term life quality when long term life length and quantity was uncertain in any case.  
 

I would think about all the positive things he was hoping getting the vaccine would allow and try to figure out how he can do them soon. 

Even if in a wheelchair.  
People can still get enjoyment out of life from a wheelchair. 

For example, if visiting his sister is important what could accomplish doing that? Could she come to him? Would there be some organization that might help older veterans to accomplish something like that ? Perhaps private pilots who could help if it is plane distance, or people with wheelchair vans ? 
 

certainly if he enjoys conversations or doing a puzzle with someone,  try to find how that can happen for him  and as frequently as possible 

maybe he’d like being in a bingo group, or playing board games ... or trying a musical instrument ... or a therapy dog visit 

obviously this isn’t going to be a time for rock climbing, but I think iirc that socializing that had been shut down due to Covid was what vaccine was supposed to allow him to do? If So aim for that, (or whatever it was supposed to help him be able to do)  and ASAP, not something that waits till he can do x, but as much as possible now worked out based on what he can already do. He can still aim for another visit later when he can do x. But imo try not to let absence of current x ability get in the way of as much social contact or life enjoyment as he can manage

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44 minutes ago, Pen said:

Iirc we both had fathers heading into vaccination at around same time, and both knew there was a big risk with it, but also potentially a very big upside in improving short term life quality when long term life length and quantity was uncertain

Yes and fwiw if you're in these settings and vaccinated it goes a lot better. You get put in green zones, no quarantine, blah blah. 

46 minutes ago, Pen said:

socializing that had been shut down due to Covid was what vaccine was supposed to allow him to do?

So the sad thing is that AL enrollments are down, meaning he has less choices for company. Rehab is always up, haha, but people have a choice on when to go into AL and have been waiting. I think they'll bounce back later, as people feel more confident the lockdowns won't occur again. So like his building where he has been living technically can hold 79 but has around 50 some apartments. They are half empty. So that's really not a lot of people to find companionship. This new place will be a bit bigger, 50% bigger, and they have two activities directors instead of one. You're right that it could help. And his being vaccinated makes it easier to feel safe. I think it's going to get to residents are not being told to mask. He has not been asked to mask in the hospital or rehab. Hopefully the new AL will be the same way, with only workers possibly masking.

He said he might get wild and go wheel around in his wheelchair tomorrow. He's not allowed to walk without help, though he could ask. He just gets tired. But that tells me he's feeling just enough better that he's getting stir crazy and wants out of his room, which is a good sign.

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5 hours ago, PeterPan said:

You're probably right that it's a combo. The lesion, the fractures, etc. are a downward slope, then with the vaccine, being cooped up (thanks covid), etc. he had less use. So not to be too oblivious but it sounds like you're saying where he ends up in a month is where he would have ended up anyway. The rehab will get him back to where he would have ended up anyway, that he was declining. And you're right. I hadn't parsed through it that way in my pea brain.

I need to think through what that means. That means there is no winning, only keeping the decline slow and not letting it snowball. 

And then what it means to decline.

My entire being is stressed thinking about it.

But thanks, because that actually made sense finally. He was declining anyway, he would have declined anyway, and I can stop being angry about the vaccine. 

I really think that this is the wisest way to look at the situation. People decline with age, for one reason or another. Some factors can be improved, but the reality is that we all will decline eventually (except for those that pass away suddenly). Anger is an expected reaction, but it's not great to stay in that place. With multiple health issues, it really is entirely possible that it's just coincidental that he took the vaccine around the time that he had issues; he may have had the issues, even if he hadn't had the shot, because elderly people do decline. Who knows, for sure?  I like Pen's perspective of thinking of all of the ways that having the vaccine will now improve his quality of life, going forward.

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2 hours ago, PeterPan said:

Yes and fwiw if you're in these settings and vaccinated it goes a lot better. You get put in green zones, no quarantine, blah blah. 

So the sad thing is that AL enrollments are down, meaning he has less choices for company. Rehab is always up, haha, but people have a choice on when to go into AL and have been waiting. I think they'll bounce back later, as people feel more confident the lockdowns won't occur again. So like his building where he has been living technically can hold 79 but has around 50 some apartments. They are half empty. So that's really not a lot of people to find companionship. This new place will be a bit bigger, 50% bigger, and they have two activities directors instead of one. You're right that it could help. And his being vaccinated makes it easier to feel safe. I think it's going to get to residents are not being told to mask. He has not been asked to mask in the hospital or rehab. Hopefully the new AL will be the same way, with only workers possibly masking.

He said he might get wild and go wheel around in his wheelchair tomorrow. He's not allowed to walk without help, though he could ask. He just gets tired. But that tells me he's feeling just enough better that he's getting stir crazy and wants out of his room, which is a good sign.


That is a good sign.

 

Idk how his upper body strength is for wheelchair, but looking into either an electric one or a lightweight model (I think they call them “sport” models sometimes) - or both - that’s easier to self power could be huge for him getting rapidly more mobile in terms of being able to go around and be social with whomever he can be social with.   They tend to be  very expensive, but can hugely enhance quality of life imo based on my father’s situation and also now the friend’s family dealing with someone with an amputation. 
 

Even as a person who is tending to feel negative about the vaccine, that’s mainly due to longer term concerns (or about children / younger people regardless of time frame) , and I think (especially for older and high risk people) this early period after getting it is when there should be (if all is at it has seemed) some robust immune system response and much less danger of a personal severe case— and that this time should not be in a sense “wasted.”  So getting whatever social benefits can be gotten from it should be a major consideration.  While working on getting stronger, transferring skills, walking, or other exercises and therapy are done hoping for long term improvement, I think if possible in between therapies and exercise a good wheelchair that could allow cruising around to visit people seems like it would be a current major life enhancement. And IME positive social connection could itself increase immune system function, increase optimism and drive to do the therapies etc.   KWIM? 
 

my father was super sick after vaccine and we were worried he was going to die without getting even the short term benefits. But since pulling through he’s Afaik getting in his electric wheelchair and going to a patio deck area where he lives every day, having social time with whoever is there, often having grandkids visit ... also getting natural sunshine which I am sure is healthy and uplifting, and  he seems hugely happier when I’ve spoken with him recently than when he was essentially a prisoner in his room...   I would hope your father can get some of that same sort of thing 

Edited by Pen
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Declining is hard but I will say that when some degree of acceptance is reached, there can be joy in t the new normal. 
 

That sounds super weird. But I’ve found the constant striving is on the o opposite end of spectrum from peace. Some days the decline is overwhelming and it’s when I’m looking forward and wanting things to be different. When I look at my day and say, “This is where I am TODAY and that I’m alright,” I find I’m more present and joyful in what is. 
 

Worry can eat you alive and destroy your “todays “ until there are none left. Sending you a million hugs. 

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Also possibly life enhancing, does your father have NLS talking books access if he enjoys any sort of books or magazines that it has? That could allow less draining reading if he gets tired or back pain just trying to hold a book for a long time and having more to talk about during conversation time.   

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47 minutes ago, BlsdMama said:

Declining is hard but I will say that when some degree of acceptance is reached, there can be joy in t the new normal. 
 

That sounds super weird. But I’ve found the constant striving is on the o opposite end of spectrum from peace. Some days the decline is overwhelming and it’s when I’m looking forward and wanting things to be different. When I look at my day and say, “This is where I am TODAY and that I’m alright,” I find I’m more present and joyful in what is. 
 

Worry can eat you alive and destroy your “todays “ until there are none left. Sending you a million hugs. 

I appreciate all the comments, but I especially appreciate this. And yes I'm worried. I'm not worried about the accuracy of my assessment anymore or the reasonableness of a new placement and whether it would meet his needs. I'm just worried about whether I'll regret it somehow, whether I'll wish I had brought him closer. I keep leaving him 3-4 hours away saying oh someday if he really needed it. It doesn't make sense on any level to bring him here. I've found the right placement. 

This is what has eaten at me for years, that I can't make his life better. With his level of disability and challenges, I can't make it better. He spends a lot of his day resting and has deep undercurrents of emotions (depression, sorry). And I can't handle it very much because it's so intense. If he were closer, it might eat me up. And his care needs to try to use private or VA services most certainly would.

So even if I regret it, this is the right placement, the one that makes sense and fits the facts. And I think a few years from now I'll be really sad about it, that I couldn't make it stop or make it better. I'm not even sure if he'll have a good life there or be lonely and feel stuck. And I will have put him there.

On the potentially positive side, I placed him in AL originally how many years ago and he did great, health improved, and he enjoyed it. So maybe this will somehow also work out well. I should just tell myself that. Instead it just feels very hard, much harder than the first time. But that's because the first time he could walk out and do other things. Now he's a little more trapped.

It's a real shame that because of his career and problems we only got to start having nice days at the end of life instead of the beginning. 

 

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9 minutes ago, Pen said:

does your father have NLS talking books access

Let me think about this. I've been slowly building him up on the Claris Companion interface for his android tablet. I need to call them because the way they have the secret out of the app it activates with his big hands, haha. But when it's working right he's learning to use youtube. He can't handle a lot and forgets day to day. But then he'll read a book and be totally lucid and conversant about it. Lately he hasn't been reading anything, which I think is the distraction of pain and the fatigue from the rehab. Sigh. 

Which is all to say I wish he could but I doubt he can independently. Having the increased services may help with that. Covid shut down a lot of the fun stuff these places do with talks, musician visits, etc.

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1 hour ago, BlsdMama said:

Worry can eat you alive and destroy your “todays “ until there are none left.

I need this on a tshirt or something, lol.

And don't worry, I'm going to go read my Bible or sleep or something and get sane again. I'm just venting my moment. But accepting it is a big piece. That's why it felt like a lie from the docs, because I thought they were saying make him like he was = carrying a 4' christmas tree up to his apartment. And they meant no more the lower pain version of the trajectory he was already on (declining walking, fatigue). He's declining and I can accept that now. 

So it's just the choice of which state, which is sort of already decided and sorted. I just hate that I may regret it or see it differently later. sigh. 

But I will get my head on straight and not stay in this place. My aunt gave me a mantra (does he love God, does God love him, then what are you worried about?) and I need to get back to saying it. It was just easier before and a little more confusing now. Or may body/mind is runnign away with me. Or both, lol.

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27 minutes ago, PeterPan said:

I appreciate all the comments, but I especially appreciate this. And yes I'm worried. I'm not worried about the accuracy of my assessment anymore or the reasonableness of a new placement and whether it would meet his needs. I'm just worried about whether I'll regret it somehow, whether I'll wish I had brought him closer. I keep leaving him 3-4 hours away saying oh someday if he really needed it. It doesn't make sense on any level to bring him here. I've found the right placement. 

This is what has eaten at me for years, that I can't make his life better. With his level of disability and challenges, I can't make it better. He spends a lot of his day resting and has deep undercurrents of emotions (depression, sorry). And I can't handle it very much because it's so intense. If he were closer, it might eat me up. And his care needs to try to use private or VA services most certainly would.

So even if I regret it, this is the right placement, the one that makes sense and fits the facts. And I think a few years from now I'll be really sad about it, that I couldn't make it stop or make it better. I'm not even sure if he'll have a good life there or be lonely and feel stuck. And I will have put him there.

On the potentially positive side, I placed him in AL originally how many years ago and he did great, health improved, and he enjoyed it. So maybe this will somehow also work out well. I should just tell myself that. Instead it just feels very hard, much harder than the first time. But that's because the first time he could walk out and do other things. Now he's a little more trapped.

It's a real shame that because of his career and problems we only got to start having nice days at the end of life instead of the beginning. 

 


All you can really do is to make what seems like the best decision amongst what options you can find available.  No matter what you do with 2020 hindsight you may later feel “oh I should have ____” but the reality is that you don’t know what problems ____ would have caused and if you had done any other option than whatever you end up with you might also be thinking “if only I had _____” 

So maybe ease up on yourself.

Do the best you can, and accept yourself for that.

And keeping your own needs and sanity is also part of that.

 If he is at all capable of helping choose, involving him in decisions process might be beneficial. For both of you. 

 

24 minutes ago, PeterPan said:

Let me think about this. I've been slowly building him up on the Claris Companion interface for his android tablet. I need to call them because the way they have the secret out of the app it activates with his big hands, haha. But when it's working right he's learning to use youtube. He can't handle a lot and forgets day to day. But then he'll read a book and be totally lucid and conversant about it. Lately he hasn't been reading anything, which I think is the distraction of pain and the fatigue from the rehab. Sigh. 
 

if you were to go for NLS try for their own player and cassettes— big and much easier to use  - a little harder since they combine multiple books on a cassette instead of sticking in a cassette and it plays much like players that he is probably familiar with since fairly early adulthood.  But even now their own players big basic stop and play button, etc is much more obvious and intuitive than figuring it out on a computer device. 
 

it is highly likely that if he ever used a cassette player or recorder in his life the digital cassette version will be fairly easy for him to grasp. 

 

24 minutes ago, PeterPan said:

Which is all to say I wish he could but I doubt he can independently. Having the increased services may help with that. Covid shut down a lot of the fun stuff these places do with talks, musician visits, etc.

 

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