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My father has severe osteoarthitis and had 3 strokes. He cannot get out of bed by himself and deals with incontinence so he is in LTC. Since being there he is largely in denial that this is his new life. First he was hoping tramadol might be the fix that gets him to walk, that didn't work. Now he wants hip replacement which we are looking into. But even with a hip replacement, I'm not sure that it will be enough for him to walk again due to the damage done by the strokes.
Do you ever give up trying to find "solutions"? How do you help your loved one come to accept this as their new reality?

No - you never give up looking for solutions. As caretakers, I think we are hard wired to be problem solvers. But, you do what you can - not what you can’t, and seek help and support when you need it.
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Reply to jemfleming
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kitkatbar: You have to give him credit for his tenacity.
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Reply to Llamalover47
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Is LTC for your Dad Assisted Living or a Skilled Nursing Facility? There's definitely a difference in quality of living between the two, but Assisted Living requires independent mobility of some type (walker, wheelchair) and having independent basic daily living skills (bathing, dressing, eating). If not, then a 24 hour aid that the facility does not pay for may need to be permitted. Skilled Nursing facility will do all those things for your Dad, but is not like the "resort" experience of Assisted Living. If he's in Skilled Nursing, I understand why he wants to go home. It may feel like a nursing home. Does he have the assets to pay for round the clock care at home or in Assisted Living? If so, is there a home care agency in your area that can provide such? If not, then your Dad's options are very limited unless the family wants to take him in and he sells the house to pay for round the clock care. Your family may want to look into all options. At this point, tell your Dad you are willing to explore all options with him, so he has hope for now.
My prayers it works out.
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Reply to JanPeck123
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That would be me. I will never give up and will find solutions. That is the engineer I am
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DonnaF777 Oct 4, 2024
Well, but in the meantime? The truth is, the facts are... the sooner "we live in reality", the better it is for ourselves and others. I would love to be 21 years old but the truth is i'm not 21.. i'm 71. I live with my thirty six year old daughter. I need to live in reality so that we can work things through in a practical way for both of us, Not just me. This is not just about me and it rarely is just about us. We must take into consideration the others that have to deal with us and our issues. Please, please, please... Consider what your issues are doing to others. You may ask them and hopefully they will tell you exactly how they feel. Many are afraid to do so just like I was with my mother because she was a narcissist.

I told my daughter you do what you have to do. I have been taking care of patients as an home health aid for more than thirty years. Some of these patients put their families through hell. Many of them have dementia so they cannot and should not be making decisions even though they think they can. These poor families. Also, living at home or staying in your home is not what it is cracked up to be. My patients sit there watching television all day. They have no visitors except maybe family. They get no social contacts. In Assisted Living, you guys get all kinds of social activities going on to keep your brain active. You get your meals done for you. You get your medications done for you, your laundry is done by AL staff, and also they clean your apartments. You can go to church, You can walk around or get around in your wheelchairs/motorized chairs in these places. I want to get in one of these places ASAP when I can no longer take care of myself. They will take you out to eat, to go get groceries. They take you to your appointments. They have special events, movie nights, people coming in doing programs. Again, compare this with sitting at home all day and not seeing a soul for months on end. Please reconsider what you are doing. Thank you!
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This is such an ugly stage of life. I am not sure how I would handle being told that the rest of my life would be in a LTC facility. If I had my faculties about me, I more than likely would not handle it well. I equate it with giving up I guess. Maybe your dad needs that sense of "hope" to be ok... I would suggest narrowing his focus and tell him "let's work on making today a good day". If he no longer qualifies for physical therapy due to lack of improvement, ask PT for a list of things he can do to keep his strength up. He might be at peace mentally as long as he thinks he is working towards a goal. Don't kill the fight in him...that's all he has left. Even if he is just moving his feet in circles and he thinks that is going to get him closer to walking, that may be enough for him mentally.
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Reply to Jamesj
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I am in the camp that you should let him talk and dream and plan all he wants. Let him talk to the docs who will most likely not accept him as a candidate for hip surgery because the rehab is very intense and long and infection often appears. His body is at the age where he cannot fight the odds. But let the doc. Tell him. Let him hope. Let him deny. The fact that he is incontinent and requires physical help to move tells you that he is unable to process the whole situation. So you are seeing the results of some dementia advancing. It will not improve and the docs will know this. But you just keep having them do some exercises with him, giving him small weights to lift with his hands in bed, get him some resistance bands he can use on legs and arms in bed and surround him with music he enjoys, visuals that make him feel positive about himself (family pics, inspirational things) and keep him involved socially as much as you can. Set up a routine of old friends, family, church people, work related people who can converse about the old days and not the current situation. Find mental activities he enjoys, art activities - no matter how messy or off the wall. Play dough, gluing paper on tin cans an using as vases to give away with flowers, drawing machines, cars, whatever he is interested in. Dig in and help him move into more positive things. Hugs!
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Reply to RetiredBrain
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If your dad is in need for a hip surgery, be aware of post cognitive dysfunction from the anesthesia. My dad really wanted to be able to walk. After his hip replacement, his dementia became worse. My dad kept trying to leave his bed to go to the bathroom. Every time he stood up, he fell. My dad went to skilled nursing right after surgery, but his physical therapist explained his reaction to the anesthesia. It's a sad situation for you, but your dad is safer in a wheelchair.
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Reply to Onlychild2024
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Not everyone ever gets to "acceptance".
If HE doesn't give up finding solutions then YOU don't give up--my personal opinion as an old retired RN. This is an individual decision. UNLESS your father is deep in dementia, this is his decision to make.

If doctors agree to the hip surgery then let him "go for it" because what is there really to lose but his life, and he is already unhappy and frustrated with that leaking away from him one piece at a time.
Your dad isn't going gently into this good night.
Myself I would choose the end of life cocktail as soon as possibly I could, and wouldn't let them replace much of anything at all on me. I don't mind death, but I sure have no courage for the losses of aging on my doorstep now at 82.
But that's me as an individual, and despite his losses your dad wants to fight on.

Your Dad is s/p strokes. He is at risk because of that, and because surgery would necessitate his being off blood thinners, which could kill him pretty quick or injure him more than already he has suffered. He needs to fully understand that.

So this comes to
1. Individual right to own decision
2. Whether or not dementia is involved (and this therefore must be YOUR decision)
3. Measuring risk

Attend doctor meetings with him if he will allow that. Do the pro and con thing with the doc. Speak about the dangers of anesthesia at a certain age. Be certain he understands the risks.

As RNs we were taught to always follow the patient's lead. Especially so far as not robbing of hope is concerned.
With all the losses of aging for some people, hope and daydreaming of a better day is about all that's left.
Good luck.
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Reply to AlvaDeer
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Debmiller Oct 4, 2024
I agree with AlvaDeer fully philosophically here. But, I suspect the OP has reached a breaking point trying to make this imperfect world perfect for her dad. Since becoming a caregiver myself for my husband, I have found the expectation from others is for the caregiver to sacrifice everything for their person, even mental and physical health.

I want to encourage the OP to factor in her needs while supporting Dad and be clear to him what she can and cannot do to facilitate the surgery and recovery.
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My father was wheelchair bound after he fell and broke his hip. The repairs were done, but he was still unable to walk after rehab. The truth was, he had a brain tumor that was affecting his mobility. He didn't realize that it was growing, so he worked hard with PT and held out hope that he'd regain his mobility again, at 91.

After a trip to the ER and an MRI of his brain, I had to tell dad his tumor was growing and that was causing his mobility issues. That nothing could be done medically about it, it was too dangerous at his age. But he could still have years ahead of him, it was not a death sentence.

Dad died 19 days later. He lost hope and gave up. Hope is a very important thing to have in your father's life. I destroyed my dad's hope by taking him to the ER that day and getting such a diagnosis. Let your father have his visions of walking again and going back to his apartment. It hurts nothing but helps him tremendously. So what if it's all a dream? Dreams keep many of us alive.
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Reply to lealonnie1
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Tashi5 Oct 4, 2024
Your reply touches me deeply. Thank you for sharing it.
You told your dad that he could have years left to live, it was not a death sentence. You show such love for him.

My dear friend chose to die because she was ready to go along with her body's choice, in the room of her choice, with her loved ones.
We love her and are inspired by her.

I continue on, in ever-growing amazement at the immensity of all of
our lives, and our capacity to feel so much compassion for and support from one another and our world.
Maybe you didn't destroy your dad's hope and he chose to go on his journey.
It was, however most kind of you to share it with us as a possibility to be aware of.
Thank you.

Sending much love.
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What is the actual prognosis IF he does have a hip replacement surgery?
Has this discussion even come up?
Some thoughts...
If he is not mobile now would he be willing to participate in PT PRIOR to surgery to get some strength and mobility so he would be better able to go through surgery and participate in rehab after the hip replacement?
If there is a question as to his mobility post surgery maybe the PT can assess that during some sessions and have an idea how much his strokes have effected his ability.
If hip replacement is not a viable option his doctor needs to be honest with him and maybe PT and OT sessions can help him find what his normal is.
You do not indicate how old your dad is or if he has other medical conditions but if he is cognizant then he has the right to make the decisions he wants to make this does NOT mean that you have to agree with them and you do not have to help him return to his life prior to his admittance into LTC.
You can tell him and any medical staff that you cannot care for him.
He can not live with you, that you are unable to safely care for him.
This places the burden of after care on him.
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Reply to Grandma1954
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I just want to say, my Mom was in an AL and PT came to her.
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Reply to JoAnn29
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If your Father still has all his cognitive faculties, then he gets to make the decision. But you need to decide and tell him how much or little you will be along for that ride. How old is your Father? Hope and determination can propel someone a long way.

I know several people who had hip replacements (they were all 60 and older) and it is the "easier" of the joint replacements in terms of PT and recovery. He has to be able to do the PT post-op or he won't benefit from the surgery. Will the other hip eventually need replacement?

I would consider breaking down the goals reach in phases for him to reach. EG: If he can recover "enough" from the strokes (cognitively and physically) then he can be assessed as a candidate for the hip replacement (and his doctor does this).

Then, he has to understand/agree that he will be in rehab for a while (Medicare 3 weeks?).

From rehab he goes "temporarily" to AL where he will need to continue to be able to get to his PT appointments and do them faithfully or they will drop him if he doesn't progress. Once this happens he either stays in AL or moves back into LTC.

Once he successfully completes his PT (as assessed by the PT), in order to leave AL he needs to "prove" he can do his ADLs to his doctor (not you), and only then could he leave the facility.

Maybe you have this discussion with his doctor in the room so it's not your plan but what is "medically required". He can still have hope, it just needs to be in baby steps and realistic -- and you need to decide your own involvement level. Maybe put it in writing, so he can review and ponder it when you're not there. I'm rooting for him to go for it, as long as he is realistic.
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Reply to Geaton777
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You've had very good replies.
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Reply to brandee
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Don’t ever be the person who takes away his hope. Hope is vital for us all, even when it’s lost some of its realism. He will either find out the reality over time or a doctor will bring the news. You can “be working on it” or “continuing to look into options” but not the bearer of bad news. You be the family member who’s there to hold his hand and bring comfort
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Reply to Daughterof1930
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Beatty Sep 30, 2024
I've been hearing more & more stories just recently about the very real negative effect of losing hope.

'Just working on it' may not always be completely accurate, but it is kinder ❤️
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My uncle is also in severe denial with his immobility and is dealing with it very similar to your father. It is mentally draining keeping up the encouragement and optimism when chances are slim he will walk again. It's been 6 months and he also speaks of surgery, antibiotics and there is now anger because he exhausted the 100 days on Medicare PT and he feels they didn't give him a chance.

At this point the denial is most likely a coping mechanism and you should go with what he suggest and tell him he should ask the doctor. I wouldn't spend much time tryi.g to convince him because it could possibly add stress anger and resentment. My advice is nod and encourage his range of motion exercises. Good luck. and if it is too stressful during visits, it's okay to take an break from visiting to maintain your mental wellbeing.
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Reply to AMZebbC
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Stroke is a brain injury. Replacing a joint will therefore not cure any deficits caused by stroke.

However, a joint replacement may be of benefit to him if for other reasons. Eg Does he have severe hip pain? If so, does his Doctor say a hip replacement would benefit him? If so, is he a good candidate for surgery? (Factoring his stroke risk & dementia risk).

What's Dad's general mobility like? Walking well? Needing little supervision or assistance? Or needing assistance & equipment?

What's his general health like?
His memory?

It may be good to take in the wider view for him. (He may not be able to).

PS It is common for Stroke Survivors to lack insight. (Medical term: Anosognosia).

PPS I didn't bother mentioning his 'going home plan'. It's not a realistic plan, it's a wish. But for thoroughness sake you may consider looking into a hip replacement.. before you change that from the plan-list to wish-list.
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kitkatbar Sep 30, 2024
He can't walk without someone holding him up. His knees buckle when he tries. Before the strokes he was able to walk with a walker

Cognitively he is dealing with some slight memory issues (calling me ten times to ask me the name of a medication) but nothing severe (aka he still remembers 95% of stuff)
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Tell him “ That’s a question for the doctor to answer.”
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Reply to waytomisery
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Give him the old nod and smile.
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Reply to ZippyZee
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With dementia there are no solutions, no wonder drugs, no going back to who you were.

Sometimes we caregivers just need to shake our heads up and down and go about our business, we cannot fix them or convince them that there is no cure.

I have used the line " When your doctor gives us a release letter that you can go back to your apartment we will consider this option, until then you will remain here".
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