I just got a call from Kaiser saying that he was denied the rehab because they think his needs are more custodial, and that he would not benefit from rehab, but we can appeal. Does anyone have any key phrases that we can use in the appeal?
He was walking up a steep hill with his walker twice a week about three weeks ago, begging my mom to take him more. Now he’s afraid to stand up, but apparently they’ve deemed him hopeless, because a PT has tried to work with him twice to no avail, thinks he can’t take instruction. I saw him the last time she was there, he did understand instruction, started to try, then gave up. It seems that it’s pretty quick to deem him hopeless.
I would first request another PT opinion. Personality of therapist can play a big role. If he is anxious I would suggest a tiny amount of a sedative but unfortunately that is a fall risk.
Memory care won’t usually provide PT but the primary care doctor can order it, for home or for memory care. Same issue though, if he doesn’t improve they cut it off.
Ironically hospice cuts you off if you DO improve!
As I said, we ultimately preferred outpatient PT a few times/week at home or facility versus rehab. Maybe he could do a short term stay at an assisted living or memory care. (And by the way I think 90% of the residents at my mother’s very classy assisted living have dementia!)
You need someone who can work with him and help him feel safe so he will try.Distraction or humor might help. It is absurd that they are deeming him unable to benefit.
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Oh, my gosh, that drove us nuts when my dad was in hospice. It was a constant balancing act. I’m glad we kept pushing when he didn’t get the services we thought he should. They would have given up on him. I wish I could post photos of what he looked like in December 2019 and now. Even Dad says, “Wow, looking at that photo, I can see why you thought I was about to kick the bucket!” He’s not back to his old self, but he is doing pretty well.
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One other thing: all those enemas can leave you feeling pretty weak. I wonder if that is a factor with his fears.
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Good information here. My dad was angry and swearing at the PT, maybe someone different would be helpful. Also he was on OxyContin yesterday, not sure if that helps or hurts when you have dementia.
Oh gee oxycontin could make the situation a lot worse I would think. That could be part of the appeal perhaps.
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OxyContin is constipating as are all opioids so just FYI. I agree a different PT might get a better response. My Mil would completely ignore one of her caregivers and stay in bed. A different one would say, suit yourself and stay in bed but I’m going to make myself a cup of coffee. Mil would then get up.
Her ventricular problem was diagnosed with a head CT scan. No treatment was done and after awhile she stopped mentioning it.
Sympathies to all you caregivers. This month I’m turning the age my dad was when he had a heart attack two days after snorkeling in the carribean and died. It was a shock but maybe the best way to go.
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@busdriver11 I have not been on for a few days but wanted to tell you I really feel for you. I dealt with myriad issues for both parents for the last 5 years before they both died and it is so stressful on you.
My best advice is to somehow wrap your head around the fact that everything has changed and will keep changing. In hindsight, I think I was making decisions unconsciously thinking the parent would “go back to normal” once I figured out a solution. Sadly, with the elderly, that doesn’t usually happen. Evaluate things with the mindset that he is only doing to get worse in some fashion: dementia, continence, walking, etc.
I found that good memory care can be very helpful for a parent with cognitive limitations, as difficult as it is to move someone there. I resisted for a long time because I saw my parents as more “capable” than the other residents. But the truth is that they needed experienced staff to help them live a fuller life and their days were better when they moved to MC from AL.
That said, it is still difficult to do, particularly if his wife is still pretty healthy.
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I felt the same way. It wasn’t until my mom’s neurologist showed me her cognitive test results that we realized how compromised she really was. When we did move her to memory care, I also felt like she was so much more with it/younger/healthier than other residents but again, not really the case. She needed to be there and her days were much fuller than when she was home.
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Great information, all! My mother is still trying to talk about him coming home from the hospital, and repeating the same things over and over. It’s exhausting, I’m losing patience, and she definitely had done level of dementia. God give me strength not to snap at her, and not tell her to suck it up and stop whining! I’m hoping this is just temporary and she will have some lucid thoughts. He’s 92 years old, this was going to happen sooner or later, it’s been happening for awhile!
I need to keep my compassion.
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Have compassion for yourself too!
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It’s such a hard time! Whoever posted that we, kids, expect them to go back to normal, and yet they won’t, that is difficult to take in, and yet mostly true. My MIL had badly broken an ankle and did poorly thereafter, five years later she broke her hip and after rehab, she was stronger and walking better and transferring better than she had since before the ankle. As soon as rehab stopped, she regressed. Without those daily forced exercises, no one else was doing anything to keep her level of strength and balance.
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My dad was surprised when we went to a basketball game last month how much strength he’d lost. He really thought he was doing a good job of exercising but now he knows he needs to do more. He’s pretty motivated. He gets two free season tickets to all the UT games due to his involvement with the sports program. He really wants to start attending games regularly.
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My mother had cancer (breast) during the pandemic, all the treatments and surgeries, and then fell during an exercise class. That fall wasn’t the worst but she cut her head and needed stitches so took her to the hospital. They admitted her for observation but she fell while using the bathroom (with 2 nurses standing next to her) and broke her hip!
She’s lost about 2 inches and can’t do the physical things she could. She still expects to regain it all but will not. She had a walker but she bends over too much, so got a stand up one, used it once, and now wanted trek poles to go around the neighborhood. She got those with a Christmas exchange gift, so has had them about a week. Then it snowed so she’s used them once, but does seem to like them.
It’s really been hard to watch the loss of physical ability. We don’t want her driving (but she does), so that means someone has to take her everywhere since she still has a lot of medical appointments, grocery shopping, endless trips to ACE hardware for her to buy stuff for the yard and garden.
It seems like these changes have taken place overnight but it has really been 2 years. She still has gorgeous roses blooming every summer.
A few years ago when my dad was in the hospital he needed PT to get home. He had been very active before the hospitalization but lost a lot of strength during his stay. Fortunately the head of the PT department was the person who initially took care of him and I was there to watch her. She had straps around his upper chest to stabilize him, had a very specific way of blocking his feet to prevent him sliding while standing to get out of bed etc. He felt very safe with her.
The nursing staff was NOT adequately trained in my opinion to walk him in the halls.
A big thing was he wore his shoes (not socks) to walk in to give him much more stability. I guess socks were hospital protocol so I had to argue with staff later on but just asked them to call PT head if they were worried and if they’d like to be sued if he slipped in the socks.
.At home he had home health PT but honestly felt awful (came home with pneumonia and sleep deprived) and refused to get out of bed. If you cancel too much they cancel home health so we were at wits end. But lo and behold the head PT person from home health appeared for an appointment (that my dad again wanted canceled but we didn’t). He trotted back to my dad’s bed and told my dad it was fine to stay in bed! Then showed him exercises he could do right there in bed to build strength until he felt better. And from then on my dad was sold–stayed in bed but did the exercises religiously until he felt stronger. We did find my dad responded very well to young men who were cheerful but adamant in what he needed to do.
I am always amazed at how FAST you can get out of shape but equally how much strength can be attained in an equally short time. One thing he always did was practice standing from a desk chair to strengthen his legs (and arms). Huge gains and very practical exercise.
Walkers–It’s very easy to slouch and use a walker incorrectly. A walker is not to be leaned on as you might a cane-it’s only to hold onto as you push it forward. Ideally you walk within the first third of the frame itself standing straight-- otherwise you are bent over with it ahead of you (and if it slips, so do you). They come in different widths and need to be adjusted for height–huge difference. And forget the tennis balls and sliders–buy some back wheels so it goes easily over all surfaces.
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We are struggling to persuade my father that using his o2 machine will not make him dependant on it. He’s convinced that without it he can manage well enough, and if he uses it all day then he’ll always need it. Meanwhile, we are trying to persuade my mother that Dad is not the reasonable, logical, completely sensible man she has been married to for 65 years-- she is reluctant to “go behind his back” and talk to the doctors herself. None of us can be at the appointments because, covid. His idea of how he is doing is pretty divorced from the reality, even with a oximeter.
@greenbutton — it’s so hard to convince people to use O2. Can you tell your folks that we are ALL addicted to and dependent on O2 and if our bodies don’t get enough of it, they will take if from wherever they can, like our brain or any other body parts.
I’ve been on supplemental O2 for flying and altitudes since 2008 and for sleep & exercise since2016. I use it so I will keep as many brain cells as I can. Tell dad you want him to have as many brain cells as possible too.
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My father has been on and off O2 for about a year and a half now. But the amount he needs varies. My understanding is that the body will need extra O2 to help when it is fighting an infection, etc. Once that battle is won, it may not need O2 any more.
See if your parents will put you on speaker phone when they see their doctors.
My sister does that with my mom (she knows a lot more about medical issues that I do) and it’s been very successful
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Oh, I wish we could be on speaker, I think that is a great idea. But it is a non starter with them right now. He is firm in his belief that he isn’t all that bad , she doesn’t want to take the reins (and I am not blaming her at all). We have succeeded in getting her to not drive anywhere new, so are scrambling to arrange us driving them. I just don’t recognize the man who raised me, and I’m at peace with that – but wow it is hard to manage. As you all already know.
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