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My mom has been in a rehab/SNF recovering from a stroke for close to three months now. She initially made a lot of progress, but now she has "plateaued," as they call it, and her status has gone from rehab patient to longterm care resident. (She is in the same room in the rehab unit for now, until a longterm room opens up.) Whereas she was getting around 2 hours of PT/OT a day, now she is getting close to none. It's so sad to feel like they have given up on her. She can't go home right now because she still needs 2 people to transfer her from bed to wheechair. She has her marbles, so she knows what's going on. She'll try to stand up and can't. She asks if she'll ever walk again or use her left arm. I visited yesterday and first we went to the little salon upstairs, where I had made an appt for her to get her hair cut. There is one stylist and obviously she does not respect appts. There were about 6 people waiting, all of whom looked to be severely compromised or demented. After an hour and a half, we gave up. I know that the longterm unit is going to be miserable for my mom. Rehab feels like there's hope, but longterm seems like the place where you wait to die. Yes, there are "activities," but non are of much interest to my mother. I left yesterday feeling SO terrible and heartbroken. I came home and sobbed and sobbed. I am very close with my mom, an only child, and finding it excruciating to see her so diminished. Also, she calls me constantly, which makes it worse, as she sounds so vulnerable and helpless. How do you keep yourself from taking these painful realities so hard?

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Mine can't walk, Babalou. She is wheelchair bound. She was standing with help and walking a little while holding onto a rail, but then the muscles in her left leg started losing tone and clenching up, and that progress stopped--hence her losing her more intensive rehab services.
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My mom, who has plateauwd out of PT, os on a walking protocol everyday. And aid walks her up and down the hallway. She is wheelchair bound, but this daily walking keeps her transfer and adl abilities intact.
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Don't take her on longer outings for now. Come to think of it, "quit while you're ahead" isn't a bad rule of thumb for virtually everything you'd like her to engage in at the moment. I'm so glad to hear she's making real progress :) - is that lifting her spirits, too?
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Thanks so much everyone. I wish I could get her into a more-intensive PT program. The PT at her current place extended her stay many times w/Medicare approval. Then I appealed for more PT twice and was denied the second time. I can't possibly pay out of pocket for more services and the facility will not allow outside employees to come in. So I'm not sure how to get around this and if Medicare can budge. Originally, she was supposed to go from the hospital to inpatient rehab, which is more intensive. But she also had cardiac issues that made them decide she was not a good candidate for that, so she ended up in sub-acute.

The good news is that my mom's speech and swallowing have returned to normal. She can move her head to both sides (not the case at first) and her core strength is much improved. She can eat with her right (non-dominant) hand. It's the left arm (which is useless and has not improved at all) and leg (a little motion, but can't bear weight) that are the problems. I can try to do some exercises with her, but she's not so cooperative unless it's a professional person forcing her to do the work.

The other thing, is if we take her out on longer outings, what happens if she needs to be changed?? She can't transfer to a toilet, even with help.
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Xinabess,
So my answer to your question about how to emotionally detach from the heartbreak of these situations is to minimize the heartbreak by focusing on the hopefulness of the situation.
Ask any nurse, caregiver, and they will tell you the many times they cried when going home, or in another room away from the patient. This is normal, and you are not alone. Not good to deny it or stuff normal feelings.
But the next day, there they are, treating the patient who is sometimes their Mom.
And, then there is support on forums, and respite-someone else doing the caring while you recover (respite is needed even if loved one is in a facility.)
Is there hope? Yes, imo.
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Xinabess
What do your mom's doctors tell you ?

Recovery from stroke does take a long time - family friend had a trach and feeding tube was sent back and forth between hospital and snf for months but family didn't give up on her - she is now at home able to eat and walk a bit - she spends time on the couch napping and tv and has short term memory issues but a year ago that seemed like an impossibility

Is it possible to hire a private aid or give a housekeeper or college kid some xtra money to go and sit with your mom for a couple of hours a day ? My mom wouldn't make it through a hospital stay or rehab without one now

I didn't use to do so but now as soon as I catch my mom's eye across the room I start waving to her and she holds her arms up to greet me with a hug

Yes I agree bingo is lame especially if the folks are hard of hearing - and the caller has a foreign accent and there aren't any prizes !

Is there some simple game visitors can play with your mom to develop using her other hand? There are plenty of slot machine type games on an iPad type device that she could press with other side perhaps or could she work a cross word puzzle together ? My mom can't figure the up and down and across anymore but if I read the clue she can give me suggestions and I write it down and tell her "we win."
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I have been the caregiver for 3 people who had strokes.

The progress does not stop after a couple of months. In every case I was involved with, I provided in home care. A trapeze placed over the bed (chair) allowed the patient to assist with their arms to move back and forth bed-chair.
It was hard work, but the stroke victim did get better, and some time between 9 months and a year they did become able to make the transfer without help.

The therapies should continue. Because a I was in the home everyday...I spent the time to talk with them and work with the speech/OT therapy plans.

Being in a NH is unfortunate. Progress will definitely be slower without the intense care. It will not likely stop, but might not be enough to keep her out of depression.

Only thing I can suggest it to private pay for therapy to go to her, or try to work out family to fill in now instead. Speech therapy and OT will be glad to make copiesof their work plans for you to follow.
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Xinabess,
You are having an emotionally challenging time with your mother.
In my opinion, this is not the time to emotionally detach from the situation after only 3 months post stroke.
It is a crucial time to throw yourself into the fight to get her more rehab by consulting with the doctor yourself and getting a second opinion, even transferring her to another rehab who has not given up on her care. If you aren't up for this fight, get another family member to do it, and someone who can advocate for the second opinion, convincing Medicare to approve better care, extending the exercises for additional time. Give your Mom a year.
Consider yourself to be her lifeline on the phone, cheering her up, listening, directing her thoughts to positive ideas about life. Or ask someone else to do it.
When you visit, you don't have to be an irritating ray of sunshine, but walk up to her with a Hi Mom, hold your hand out (palm up, open) so she can reach out to take your hand and say, "Mom, do you want to get better today?" Or, less generalized, "Mom, do you want to eat?" Learn the techniques of encouragement, perhaps even hiring an irritating ray of sunshine to help her along.
I get that you are sad, and grieving, but she is not dead yet, it appears she has not given up, and is still alive. You need support too Xinabess, hoping you can find encouragement for yourself to not give up. To change the emotional pain into new goals for you and your Mom, to regroup, reassess, and get back in there to help her live a better life. It is not hopeless, others on here are doing it for their Moms.
There is no guilt or shame if you cannot do it, but you can find someone who can.
I would look into transferring Mom to a more encouraging facility with a post-stroke specialty in rehab. after consulting with the Patient's Rights Advocate.
Others on here may have ideas how to get her the care she needs rught now. Think of the plateau as she was just taking a rest, and can re-commit to getting better.
You can make that commitment too.
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Xina- Even though the chance of her going home is slim, it is still a chance, and something to work towards. Miracles can and do happen, hopefully your mom will get a miracle and can go home.
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When my inlaws had resigned themselves to dying in their cramped apartment because everything looked bleak, that's when we got to lift them up and encourage them to get busy living. Yesterday they celebrated their 55 year wedding anniversary. Champagne all around!

Your mom is lucky that she has a lot of people who want to spend time with her. Is there money to get your mom a room in a senior residential community? Will she let you delve into her finances to figure out what her options are?

It's only been three months since her stroke and I think it takes longer both to accept that life won't be the same and to adapt to ones new limitations. My inlaws live in an independent living building that is affiliated with a home care agency making it easy to purchase extra services for my MIL, who also has a strong life force. MIL's sheer will to live has helped her beat the odds associated with her neurodegenerative illness. By this many years into her illness, most people are bedbound or dead.

Only you know your mother and what she is capable of. I'm really glad we didn't give up on my inlaws.
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My heart goes out to you, Xina. There's this thing called "anticipatory grief"; I think I've been doing it since 2010, when my mom started not being herself, moving to Independent Living and getting dxed with Mild Cognitive Impairment. Then she had a stroke, broke her hip and is in a NH.

OBTW, docs at rehab put her on antidepressants while she was recuperating; I hold her Medical POA and she was still pretty non-responsive and I think that they've helped TONS.

I'd find out about the Hair Salon thing. At my mom's NH, I sign her up for a particular day (or just write in the book "whenever mom wants" and the hairdresser comes and gets her. No waiting around. the system they have in place sounds awful; maybe you can help improve it.

Is mom in a wheelchair, and can you get her outside while the weather is nice? If you're in the city, is there anyplace nearby (park, store, movie theater) you can get her to for an "outing"?
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Z, She may return home once she only needs one person to transfer her because then we could hire an aide. Not sure that situation would be much better. She has a very strong life force, so she's not one to give up. And she does have me, my daughters, relatives and a boyfriend who love her and visit when we can. We have gong out to eat in the neighborhood as well. I'm hoping we can do more outings eventually, though her bathroom situation (ie diapers) would make it a challenge to go out for too long.
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This is so sad about your mom. There is no way possible she will ever return home? If not, she may just "give up" and wish to die, especially since you mentioned she does not participate or enjoy many of the activities of the home. I'm so sorry.
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My dad spent 6 months in a nursing home before he died. That was 3 years ago. I'm hoping the heartbreak will end any day now......
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Yes, they do resist them, I agree - hard to shake off the bad reputation of the bad old days. Don't force it, then, of course; but if the opportunity comes up with a doctor she trusts do ask him to explain the brain chemistry to her and how modern SSRIs work. It's a whole different concept from the Valium type of tranquilliser she's possibly thinking of.

Poor lady, she must still be in shock apart from anything else. Do you know, I haven't really thought about that aspect of it before: the sheer abruptness and trauma of going from beetling around quite happily minding your own business to being unable even to sit up and drink unaided. My mother wasn't in good health and she had already been developing vascular dementia for at least a couple of years before her major stroke, but even so the sudden loss of so many more abilities was devastating. Your poor mother, I can only imagine how she must feel.
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Thanks. I would not say my mom is "choosing to be miserable." She went from living alone on her terms to total dependence overnight as a result of the stroke. To accept that she may very well be in a SNF forever is not easy for her or her loved ones. (My dear uncle, who passed away about 10 years ago, was able to accept his decline. That was just who he was, despite having been a brilliant psychiatrist.)

My mom has enjoyed some of the Sunday movies and musical guests at the SNF, but she is just not the craftsy/ bingo type, especially now that her dominant hand is paralyzed. (Why does everyone think bingo is the perfect activity for old people??)

Anyway, millions of people are in this situation right now. And millions of people die way before their time, so it's hard to complain about making it to 83, as my mom has. Still, it's very hard to see our loved ones suffer, no matter their age or their illness. I don't think antidepressants could make the harsh reality of this situation better for my mom, and she is violently opposed to taking them. (I do take them, btw, but her generation tends to resist them.)
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It's early days. Three months since your mother had the stroke, and then the hard work through rehab, and at the moment it probably feels to her as if all that was for nothing, and now the transition ahead... So much change in a short space of time, so much to adjust to, and all of it painful, depressing hard work. Just for now, give yourself time and take one thing at a time. Try not to get ahead of yourself, and encourage your mother to do the same.

Also: depression is a common 'aftershock' of stroke. If your mother isn't already being helped with medication to counteract that it might be worth asking about it.
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As an Ombudsman, I see many people in a nursing home with over 100 patients. Some choose to be miserable. Others get involved with the resident council and defend their rights. Some choose to learn something new during crafts. All of them will attend a sing-a-long or concert. She has to choose.
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What you are feeling is anticipatory grief, and just like any grief it takes time to work through the stages and come to an acceptance. There is no denying that the nursing home will be her last home, or that her freedom to come and go and enjoy her last years are limited by her failing body. You both need to take things one day at a time and look for ways to find joy, however small.
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