A few weeks ago my 77 year old MIL with dementia/multiple sclerosis/parkinsonism, among other health issues like breast cancer- caught influenza A and was admitted to the hospital for several days, then to a short term rehab another several days. Before the flu, she was still able to walk with a walker, get herself to the bathroom, feed herself, etc. The flu did make her very weak- however, her stay at the hospital they only did in-bed physical therapy. Had her on a purewick and adult diaper/brief. Then, at the rehab, she became dependent, sometimes 2 person assist with EVERYTHING, but they did get her to the point of only needing set up for meals and she could feed herself. They did have her up walking very short distances in their physical therapy and on an exercise bike. During that time she became very helpless and wouldn’t even try to do anything. Would tell her husband and us kids that we need to feed herself because she can’t. (Not true) she won’t even turn herself over in bed because “I just can’t do it” (not true) it’s like she got used to someone else doing it for her so she started to give up and not even try. She IS very strong though! Her husband didn’t help either- as he went to see her at EVERY meal with the sole purpose of hand feeding her when she truly can do it herself. If one of us told her that we know she can do it (because staff told us she can many times, AND we watched her feed herself many times while there) she would get angry and just not eat and manipulate her husband to hand feeding her every time. We tried many times to get him to stop- he hears us, but doesn’t listen. So she gets discharged back to her memory care unit. Maybe 2 night go by and SOMEHOW she “fell out of bed” (we are suspicious of this BECAUSE we have witnessed her falling on purpose, fake falling, and never having had a fall but saying she did as an attempt to try to go live back at home Also, not to mention, how do you roll out of bed when you claim that you cannot move at all?) So she got sent to the hospital AGAIN and got admitted AGAIN. This time, they once again put her on bedrest, had her use a BEDPAN instead of even a bedside commode, never transferred her to the recliner in the room to get her out of the bed at all. They did very minimal physical therapy- and too easily let her either refuse physical therapy or gave up on encouraging her too easily. Oh and now she has a bedsore. They wanted to discharge her to a rehab again, but the last rehab said it was “too soon” after her last discharge from there. Other places said she “does not qualify” for a reason of “she will not improve” OR the places that do accept her are not good places- we have past experiences with them. So in our hearts there’s no way we would ever let her go to one of those. So the ONLY option left was send her back to memory care with the hopes they prescribe her with an adequate amount of physical therapy to come to her. We are angry, resentful, disappointed, discouraged and appalled about this. We feel like the hospital (and now the rehabs that won’t accept her because of “never improving”) have completely failed her and help her play into her mindset of “I can’t” We are realistic, we don’t expect a miracle and her be able to be at the level of independence that she was at before the flu. But we do know that she definitely has the capability to be able to transfer from bed to chair, chair to toilet, transfer to the shower, feed herself and also walk a short distance with minor assistance. We blame the lack of dedication and lack of trying from the staff that had cared for her during both hospital stays. Are we right to feel this way? Or do you think that there truly is no coming back from this? It’s going to be very hard to get her out of the “I can’t” mode. Do we accept that this is how it is now? Just let her give up? I know it’s best to ask the doctors. Has anyone gone through something similar? What did you/would you do if this happened
My FIL REFUSED to do anything for himself in the hospital - minus the feeding himself because his relationship with food was legendary. But that doesn't mean that every single time we visited he didn't try the "I can't feed myself" line. We didn't help and he would eventually feed himself.
But as far as refusing to do things such as getting out of the bed - if the patient refuses or is not compliant - they will not attempt the action.
Expecting her to be at the "same level" she was before - is not solely the responsibility of the rehab facility. If they come into her room and say its time for PT or OT and she says no, they move on to the next person after a bit of trying to talk them into it. That is not the fault of the rehab.
You stated that you do know that she has the capability to transfer, feed herself and walk short distances. It is also entirely possible that she HAD those abilities. I don't mean this in anyway to be cruel.
My FIL had those abilities as well. Had a VERY minor fall - not even a fall really - just kind of did a slow slide out of low chair to the thick carpet. He was not injured in any way. But something in his mind tripped and all of those capabilities were just no longer within his grasp.
While there may have potentially been "lack of dedication and trying" on the part of the staff....it is actually more likely possible that it was a lack of compliance or willingness to attempt on your MIL's part. Or also equally possible that she no longer has that ability to begin with.
Have you or a family member been present when PT or OT comes to her room to take her for rehab? If so, what happens? Because they cannot forcibly remove her from the bed and make her participate.
My FIL used to say things like "I'm hurting today." or "I don't feel well" - he wouldn't deliberately say "I'm not doing it today". They would press him - do you feel well enough to do a little bit of walking today? Maybe some bed exercises? Or let's get you into the chair and go for a walk." He would restate "I don't feel well" or "I'm hurting." If he made no move to change his stance, they have to move on to the next person on their list after a trying a couple of times.
Your MIL has a laundry list of comorbidities that even alone would be enough to take the wind out of her sails. If she has decided that she is no longer going to try to get better or cannot or will not do the work required, it is easier on everyone if the family makes their peace with that and proceeds how SHE wants to proceed.
You should have deep discussions now with the MDs and you should listen to them, especially to their prognosis for any meaningful or comfortable life for this one you love so very dearly.
Please now honor her wishes and her wishes only. Please see that she has Hospice and comfort care. Please stop pushing for life when it is of such a torment now. It is a kind of torture to live in this constant pain and trauma, both for the patient and for the family.
Lastly, please seek the counseling of clergy, of social workers, of therapists if needed to accept the transition of someone who deserves now peace, and a DEEP unquestioning honoring of her wishes.
This is not about any failures of the system. This is about MS, Parkinson's, Pneumonia, Pain, weakness, torment. This is about every moment of life now down to adding insult to injury. This is about accepting and seeking the wonder of peace for someone who has made a tremendous and heroic battle to stay with you.
I am so very sorry.
That’s something I’ve been wanting to do is speak with her neurologist and primary so we can have an idea of what stage of dementia she might be in, how we should expect the progression of the MS from here (she does take the generic of copaxone injections) and how much longer she might have left. Which I know there isn’t ever going to be a definitive answer, but maybe just an idea. We aren’t pushing for a life for her, but we want quality of what’s left for her. (Well, her husband definitely has some denial for sure. He thinks making her eat her entire plate of food will make her better. It won’t. He’s being the best husband he knows to be for her. He loves her very much) I think why I was so upset is because the hospital is giving us the impression that she will be bedridden from here, and thinking of her quality of life being bedridden is severely diminished. She could live for several more years, and don’t want her to live like that any sooner than need be. “If you don’t use it, you lose it” and we saw that happening in the hospital. Any other time she has been to the hospital, they always have had physical therapy working with her, but this time was much different. We know how important it is for her to keep doing the things that she is able to before she loses it for good. We have noticed her starting to give up since this last hospital stay, but now that she is back at her memory care, with her people I hope those feelings of helpless subside for her.
We have a sort of pre-hospice service for her- it’s called VITAS, they are affiliated with hospice, as she does not yet qualify for full on hospice care yet. Once she is ready for hospice, it’s a smoother transfer from VITAS than if she didn’t have VITAS at all. They will also let us know when it’s time to put her on hospice.
When I posted earlier I guess I was blinded by my emotions and I didn’t communicate where my head truly is at with all of this. My therapist and I have been working on processing this in entirety for the last couple of months. I brought it up in therapy today and beginning to process it all. My answer that I came to is to just meet her where she is at everyday. Today might have been a tough day, but tomorrow her mind and physical capabilities might be much different than today. She might have a worse day, she might have a better day. I learned today that I can’t control her day, I can’t change whether or not she thinks she can or can’t do something, and neither can the hospital or staff. I can’t control if her feet are going to agree with her enough to move them to get in her chair. But what I can control is meeting her where she’s at for the day, and it might mean give more assistance and encouragement, or maybe it’ll be a good day. I can have control over my patience in the whole situation. The rest is all God. I’m still annoyed at the hospital though. There’s several other reasons unrelated to the care she received- they had a major lack of communication regarding the guardianship my sister in law holds. It was a daily issue that we had to keep fixing. Which we’ve never encountered before, and moms a frequent flyer. I can let go of this hospital stay, it’s never been this frustrating- and it may never be this frustrating again. Thank you for your feedback. Gave me things to think about.
My mother had pneumonia back in 2019 while living in AL. She spent a week in the hospital where she was too weak to get out of bed or be given physical therapy. Plus she had dementia which means she wasn't able to DO pt properly anyway, or follow instructions. Which is why rehab for elders with dementia is generally a waste of time. Mom did go to rehab after the hospital, however, and I told the therapists to teach her how to get around in a wheelchair now. Her walking days were over. She had neuropathy in her legs and feet, dementia, and had taken 55 falls by then. It was time. The pneumonia set her on a downhill course and she had to go into Memory Care Assisted Living after rehab.
There comes a time when an elder does not bounce back the way you think they should. Your MIL is in Memory Care already, meaning she's on a downward spiral. Each and every illness or fall is a setback to an already sick body and mind. At some point the pot becomes too full and begins to boil over, meaning MIL begins the approach to end of life. As the dementia advances, she becomes more childlike and needy, regressing to a time when she was young. I'd let her alone to be managed by the Memory Care staff and her husband. If he wants to feed her, so what? Many elders in MC have to be hand fed at some point.
Medicare will send Home Health wound care nurses to MILs Memory Care to tend to her bedsore. Make sure the nurse in charge is aware of that situation.
As far as rehab goes, it's insurance that requires a certain amount of time pass between stays. Medicare and supplemental insurance will not pay for back to back rehab stays, although I'm unsure what the time span between visits must be.
In my opinion and experience, the hospital staff is not there to worry about physical therapy with a patient. Just that they are treated for the illness that brought them there to begin with. The flu requires a lot of rest and hydration, especially for an elder with comorbidities. For you to blame the hospital for lack of dedication by not working MIL out during her stay is silly. There is no one or nothing to blame here except several diseases working together along with the flu, which is the worst it's been in ages, that caused the woman's decline.
At some point hospice is going to be your best bet. Keeping her comfortable is key. My mom spent just under 3 yrs in MC and passed peacefully under hospice care.
Time to get your head out of the sand and know that your MIL is now at the point of no return.
Is it a tough pill to swallow? Of course it is. But the sooner you and your family accept your MIL's "new normal" the better off everyone will be.
My late husband after almost dying of aspiration pneumonia and being in the hospital and the hospice home for almost 3 weeks, came home completely bedridden and he had been mobile though a fall risk prior.
He too had dementia, and was so very weak that he just never was able to recover. He remained under hospice care in our home until his death 22 months later.
So like already said, it may just be time to bring hospice on board and let your MIL die in peace without all the unfair expectations.
Other residents are that way too. I'm there almost every day for at least one mealtime. If the caregivers or their families would decide that they can feed themselves so they need to let them do it in order to build their self-feeding skills, some of them would die. Period.