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He needs PT to stay strong enough to stay home. Dad is 80 years old w/spinal stenosis, diabetes, chronic pain and severe mobility problems. 3 months ago he had neuro surgery and is recovering (earlier this year, he lost complete use of his hands and became incontinent). He had serious surgery, did 3 weeks in-hospital intense PT and has had 5-6 weeks of PT since he got home in late August. He has made so much progress! But now, he decided to focus on one aspect of the PT he hates - won't talk to the therapists about his concerns - and decided that "its not doing any good." I could honor his decision - except Mom (70 w/no health issues) is taking care of him and, quite frankly, it's killing her (not being dramatic - literally). His response to my concerns about how his decision affects his family is "Oh well, that's okay. I won't go downhill, not me." We have already done 5 months of the hospital, nursing home cycle earlier this year. I can't help but to feel that I am left to wait until he gets so weak that Mom can no longer take care of him at home (she is refusing home health services) and/or he ends up in hospital. He says that PT isn't that important and I am blowing it out of proportion. Am I?

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As LME said a couple years ago, there are implications for Medicare. After 21 days, Medicare will pay a portion of nursing home room and board up to 100 days, so this has implications for anyone who is private pay. (My mother gave up after a short time, but I didn't have the heart to tell her she essentially threw $16K out the window!)
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Hi Dawners! Whew you have a lot there. Don't give up, because while Mom & Dad maybe in denial, it will catch up to them. 1st he needs to be sure to have ONE PCP, whether doc is a VA doc or a private doc doesn't matter. If he has dementia, it's really very very important that someone give the doctor ALL the facts. (I had to do this with mom, she kept forgetting to tell the doctor all her health issues). See if he will give you a Medical power of Attorney or Directive of Physicians. This will help you to discuss his health issues to the doctor. Or if not, most doctors have email, before his next visit send the doctor a note explaining that Dad refuses to do anymore PT. Then it's up to the doctor to explain to his patient (your dad) what could happen. Possible that he could do PT at home. Or find out if there is really something else going on that may be keeping him from the PT. Good luck.
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ah...so sad. take care scottdenny!
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Friendlybedguy is right my mom was independent to and she got a bladder infection and the doctor gave her Cipro which blew her kidneys out and led to her death and she was in pretty good health.My Thanksgiving was the worst I ever had without her.Take care of your father and Mother you do only get 1.
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Lots of great comments. Went thru this with my father- at home until he got a bad infection. Survived that but they had to rebuild his strength. After some therapy he said "I am 93, I don't have to do this"- never walked again or returned home. What are your father's mobility issues? My two main points are to supplement therapy with whatever assistive devices may be helpful to keep him independent. More importantly is to understand the risk of injury to your mother as she helps him. When a caregiver is injured it is often "game over" for both- don't sacrifice your mother's health. Let me know if I can offer suggestions to help- I see many innovative products at national tradeshows that most people know nothing about.
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hi Dawners thanks for the update...and please keep us informed! My thoughts...life is a process...there are sooooo many zigzags before we reach our end. The nice thing is that you are trying to adapt...and that is probably the most important thing I heard. Take care of yourself first...the rest will happen as it is going to happen...of course...that's up to your dad. take care!
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Dawners, I would certainly appreciate your keeping up on my father's progress; although he's insistent he won't leave his home, one never knows what may happen in the future, and the VA may be coming to his rescue.
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Sunnygirl1 - I know VA isn't on topic - but you are probably right, problem for us is that the nearest long term VA facility is over an hour away from their current home and my sister and 5 hours from me. It's not practical. There are guidelines and criteria for VA to pay...not an expert though. Thanks so much for being an open ear for me! I will follow you and GardenArtist so that maybe I can be of help to you sometime.
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GardenArtist - THANK YOU!!!!
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REF. to the VA. I'm not that familiar with their long term care services, but we have a family friend who stays at their long term facility. I think it's located in the VA hospital in Durham, NC. And it's free.
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Dawners, you have a tough situation ahead of you. You know what will happen but your father's position prevents you from acting to provide protection.

I'm hoping that your father will recognize that his lack of cooperation isn't helping him, but that's probably not going to happen for some times, if it does happen at all.

You've done all you can; know that you've tried.
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Thanks Sunnygirl1 - you are right. Unfortunately, I already know all about the AL, rehabs, and NH's in their area since we spent a good deal of 2015 in hospital, NH, rehab. Although you are never ready - I guess you could say I am as ready as I can be. BTW...another "shake my head" moment was he told my mom that if he ever has to go into a nursing home again he will go to a VA facility. The nearest one is about an hour away from their home! Well that's considerate of his wife and daughters (sarcasm)! He doesn't get that the VA contracts with community providers and that the criteria for the VA to pay is strict and facilities use Medicare first (when the beneficiary is 65 +). He seems to think the VA is some magical, closed universe with unicorns and fairy dust that will make everything better. Yes, they can do good work, but my experience has been you never get the same doctor for any continuity of care and they just give him stuff (diabetic shoes, diabetic socks, adult diapers, compression socks, countless blood sugar meters, blood pressure cuffs, therapy bands - all of which he doesn't use). But, of course, that won't happen, according to him "he isn't going to get weak, he is not afraid of falling and he can make his own decisions." Alrighty then.....(sarcasm).
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Sorry Dawners, that's too bad. But, you really have done all that you can do. Your parents don't seem to be incompetent enough to force a guardianship so you could have say so over his medical care. But, even if you did...you can't force someone to do PT. It's his decision and he and your mom will have to live with it. I'd probably look around and see what is available, just so you'll be ready when the time comes, whether it's AL, rehab or NH.
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Greetings! Update on my dad...
Today mom and dad had an appointment with the doctor who is the director of the PT program he was in at Ohio State University.
1. According to mom, he said (quietly) in the waiting room that he was only going to tell the doctor about how he didn't like the treadmill part of PT. Mom suspected he wasn't planning to tell the doctor that he doesn't intend to continue--and she was right.
2. So the appointment was mostly about him becoming able to cath himself (he still has urinary incontinence that gets worse and then better - urologist thinks it will get better as the cervical spine heals and recovers). Dad doesn't think he will ever be able to cath himself even though the OTs and doctor assure him he can and tell him that he will be more independent.
3. Because dad didn't cop to his decision to quit therapy and diverted her question about why he hasn't been in 2 weeks by saying they are in the middle of a bathroom remodel and it was too much for mom to drive him to PT 3x a week. THERE WAS NO DISCUSSION OF HIS DISCONTINUING PT! The doctor doesn't know he is quitting. Mom didn't say anything (she never does - this is her survival technique).
3. On the way home, dad said he was going to get PT at the VA. Along with that he wants to go to the VA to have someone look at his hip, get MRI's, x-rays, etc.
This is significant because when he fell apart last January, I spent a great deal of time, blood, sweat and tears untangling his health care (he was going to VA for some things and going to private doctors for others and not telling the doctors full information about what was going on. He literally had 2 doctors lists with 2 different med lists and instructions about what to tell which doctor and what not to tell another doctor. So, when he fell apart - of course, the health care team had to be narrowed and they had to know what was going on - and no one really knew! Anyhoo, long story short - I sidelined the VA in order to advocate and get care for him in the private hospital system he was in. There is no VA hospital in our area - only outpatient center.
CONCLUSIONS: Both of them are in denial. She is in denial because she has to be to live with what is going on everyday. I told her that he will spend the rest of his days seeking this doctor and that doctor and he is using VA because we (meaning me) won't really know what he doing and not doing. I told her that's fine and dandy until it all hits the fan again and we are left to figure out what he was doing.
Regarding the PT - It is like when I say "I will start my diet on Monday" and Monday never comes. I told her that he is probably just saying that to "benefit" her, me and my sister. As of now...he hasn't even called to get an appointment for a PCP or geriatric assessment (this assessment has a waiting list of up to 3 months) in order to get going.
BOTTOM LINE: I know and have known I can do nothing in this situation, except be there for mom when she melts down. I must work through my disappointment in my dad's behaviors and realize he is a "do as I say - not as I do" kinda guy. I promised my mom that I will be kind and loving the next time I see him and I will move heaven and earth to support her - but I will refuse to discuss anything medical or health related with him. Also, I told her that when he declines (because he will sit in a chair all winter), becomes ill or falls - I am not going to stand on my head to advocate for him. She is okay with this.
Sorry for the eternal post....I have no one else to talk to about this. Sister is an "ostrich" and rarely talks with me about dad, hubby is kind and listens the best he can.
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hi dawners...please keep us updated on his results! thanks
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I just wanted to respond to some of the new answers I have gotten to my question. Flstfrider, Dad has been taking Celexa since May. We are not sure it has helped much...he takes so many meds that it is hard to tell what is helping and what isn't. I definitely wanted to acknowledge your answer because mental health is so very important for all of us and oftentimes (especially in seniors) goes unrecognized and untreated. Yes, I am a healthcare POA (second to Mom) and on most of the HIPAA authorizations for the various doctors - because your sentiment echoes others - nothing to do now - but try to be ready for the inevitable. Right now, I have shut my trap and taking a "wait and see." To other posters who advocate to let him rest and take care of basic comfort needs - I do so wish I could do that. My nature is to be respectful of his decision and let him live his life as he sees fit. However, that's not our reality. I have a healthy mom who is busting her tail to take care of him. He has always been a needy man (she enabled it) and because he is so dominant in the household - his conditions and mood takes over. Dad's pattern does not involve proactively taking care of himself. Example, he doesn't and hasnt' managed his diabetes over the years (didn't even try), he would never take his medications correctly (when he was perfectly able to do so), he would never take a walk or even acknowledge the benefits of moving when he was in his 60's and 70's and still could. He constantly complains about his health, muddies the waters by not telling the truth to doctors along with many other behaviors. As his daughter, he instilled in me a "take care of your business - so others don't have to." mantra for life. Over the years, he has been very harsh and critical of others for behaving exactly has he is now! I know he sounds like a MONSTER - but he's not - he is actually a generous and funny man who provided for his family and has managed his finances well.
So, alas..I will wait to see how the appointment goes on November 5th with the PT program director. If he decides he isn't going to continue to do what he can to stay strong enough for mom to take care of him (i.e., transferring and being able to ambulate), then I will have no choice but wait in the wings and see what happens. I could go on and on.. Again, I APPRECIATE every post and comment - I feel cared for and thank you for that.
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i thinks it's really sad to make seniors, esp older sic ones do all this stuff they don't want to do anymore. if he's tired...let him rest...let him sleep, it's okay. can't live forever. just keep him clean, fed and comfortable...that's what i do for my parents.
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Haven't had a chance to read the posts subsequent to my last one, so hopefully I'm not suggesting something that someone else has. But I've been thinking about a PT regimen vs. PT naturally. Maybe something that's more akin to what he used to do before all the medical issues arose, such as limited walking or strolling along the street, short walks in a park...just natural, enjoyable exercise vs. planned PT.

I used to work out in the house, didn't really mind it when I had music on, but it was never as pleasurable as working in the garden.

So maybe you can find something your father can do that's healthy exercise but also is something he enjoys doing and used to do earlier and isn't PT per se.
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Dawners, my father has the same conditions as your father. He is 89 now, but started a pretty rapid decline about 5-6 years ago. He managed to keep up the therapy for a couple years, but "got tired". A few years ago, about a year after giving up on therapy, we almost lost him as he stopped eating and was getting increasingly confused. One thing that brought him back from the brink was an antidepressant. It perked him up enough to try home PT and helped to get some weight on. The PT didn't last but a few months though, and he started to do exactly what Dana's father did - "losing' the exercise sheets, phone numbers, etc.
I got his antidepressant upped, and he tried again, with me buying bike pedals and stretch bands, etc. They are just gathering dust.
I am wondering if an antidepressant at his age - and if he is in good shape - might help to perk him up enough to keep up with the P/T for a while longer. You might also have a geriatric specialist take a look at him and/or any other meds he is taking to see if anything could be causing pain or problems.
Everyone has made fantastic suggestions. I think you need to look into all of them. You can't force him to do anything he doesn't want to - and people always telling him what to do could be adding to his belligerence. But to protect your mother and your family, and to limit his suffering later, you need to have a plan for what will happen. He will not miraculously get better. He will likely decline.
Do you have power of attorney? At least for health decisions? You might try talking to his doctors to see if he can get any home health care that might give Mom even a little break. She may argue, but perhaps if "the doctor ordered it", both she and he might go along with it. It won't necessarily fix him, but be a distraction for both of them.
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Please be advised that for those in a skilked NH for rehab, that if there is no improvement, Medicare will only pay for 21 days. If, improved, and the person is discharged home, Medicare will pay for 2x/wk X 3 wks in-home PT/OT. If Medicare stops paying, private ins usually won't either. Who can afford $200+ for each PT session.
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Yes, they did give print out but he lost them - I think on purpose. The PTs were great. Dad is just very tired at 88. I'm glad you have had success, New2this.
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Dana, they did not give your Dad print outs that depict the exercises along with his number of reps? That is too bad. They gave them to me at the hospital where I had my PT. Can you bug them for printouts, and reps? I am sure, each case is very much individualized. My experience with PT was super. It took a neurosurgeon to fix me, a surgery that sometimes does not go as planned, without it I was facing according to my MD, loss of lower right quadrant. He plainly stated I was about to lose bladder control, need a wheel chair. I am up walking and just great, part of it due to a good neurosurgeon, part of it due to the PT people. They are all only people just like you and I. Ask questions, be honest, don't be shy!
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Can you start a "group therapy"? Would he attend with his peers? We have silver sneakers here which incorporates some of the same moves as in PT.
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Agree with Freqflyer - my Dad went through a month of home therapy after his stroke, followed by 2 months of outpatient therapy only because the girls were cute. He got stronger than before the stroke, but he doesn't remember that and refused to do it with us after a couple of weeks on our own. He can't remember the exercises to do them on his own. He has gone downhill since. He's 88.
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I am so BLESSED by everyone's response! Even those who, at first read, I don't agree with - but I am soooo open to listen to all the views because I love my parents. Thanks everyone and all. I will keep you updated on the next step....they have an appointment with the physical therapy director next week. He is in a top notch program at THE Ohio State University, so I am hoping for good, balanced information which will bring him back around. I really, really, really could respect his decisions (I get it, I really do) - but I fighting for mom. Ultimately, though I know it's their life...they are a unit...but I will have my life in the meantime! I am so grateful for ALL of you.
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Yes, PT pushes to their limits. Maybe he is just tired. See what happens at the meeting. If he refuses PT 3x medicare will no longer pay. All in all, the decision is his.
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wow...sounds like he's been thru hell with his health issues!! i could understand that he would not want to do anything to challenging!! AND YES, your mom as his caretaker could kill her!!! I think that the only thing you can do...is get together and talk about going into a nursing home in the future. please let us know whats going on...take care of yourself and your healthy mom!
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Dawners, I'm so sorry for how you must feel about your father's attitude. It must be extremely frustrating and worrying, and I sympathise. I just wanted to add a couple of comments.

I wonder if, when it comes to how important continuing the PT is, it may be not so much that your father doesn't understand as that he doesn't agree - doesn't agree that it's worth the effort it costs him to do it, that is. You may believe (you may well be right) that he will be sorry later, if God forbid he experiences a decline that could potentially have been delayed or prevented. But then it isn't you who's having to find the motivation and energy to carry on with maybe painful, tiring exercise. If it is the case, literally, that he can't be bothered, that's teeth-clenchingly frustrating for you - but it is up to him. It's not a small thing he's being asked to do, when you put yourself in his very tired old shoes.

The other point is a bit of a tangent - you say your mother is refusing home help. But when the choice is between your father's moving in to long term care or her having more help with him at home, won't she change her mind about that?
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I had to do my PT at a hospital, I had a main therapist but often got others depending on scheduling. The main one told me, and always emphasized at the start of a session, slightly uncomfortable is ok, anything you'd consider pain is not, say so immediately and we will stop. I only had that happen one time with a new exercise that was added in, it seemed to hurt a tendon in a different area. I spoke up, and it was stopped and removed from my routine. I mentioned it the following session to make sure, it was noted and they had no issue. I was shocked how much good it did me in my case, I've worked out most of my life and played many sports, didn't think I had anything left to learn. I didn't realize I'd been using other muscles wrong due to the injured back, leg, nerve. I didn't realize how much building and stretching other core muscles would help me be able to move in the new and safe ways my "new" body needed too, either. Two years later I still do the PT homework when I think I need it, and I always see an immediate increase in range of motion.
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My Dad refused to accept the fact that he wasn't able to walk, and refused to use a walker or get PT, etc. He lived with my Mom & they were a single unit as well; married for 68 years. I had to let it go, and made the decision to wait for the phone to ring with bad news. That's exactly what happened. My Dad fell on 7/24/14 and broke his hip; Mom called from the ER with the news. Long story short, Rehab refused to release him back into independent living, and I had to get both of them into an Assisted Living Facility (ALF). The decision was made FOR me, and for them, once he fell. I believe that the PT Dad had in the ALF is what kept him alive for 11 months following his fall. The PT gave him hope that he would walk independently again, and get back into his former apartment (believe it or not). He passed on 6/23/15 at the ALF but had physical therapy until 3 weeks before his death.

I have no words of wisdom for you Dawners, except to say that there is only SO much you can do here. Sometimes a disaster has to happen before the old folks can see the light. Sending you a big hug today, and a prayer that your Dad will see the burden he's placing upon your Mom & yourself.
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