There’s a lot so bear with me…
My mom had hip replacement surgery and formed a blood clot and had a stroke. While searching for the clot, doctors found a tumor on her lung and one on her brain.
We all agreed, including her, that she probably won’t make it through removing them and she’s too weak for chemo.
She is now in a rehab nursing home, the one that was going to provide inpatient rehab for her hip, the stroke paralyzed the side that her hip replacement was on.
She is making progress and moving her foot, she can open her eye on that side now, and turns her head that way too.
She is on Hospice and she has been in the rehab for a week and a half.
EVERY TIME I come she says “I wanna come, please get me out of here and take me home with you please!”
I love my mom so much! We are very close any medical issues or emergency she has had I have always been there and taken care of her.
She says they aren’t giving her hardly any therapy and I know they aren’t because when I spoke to one of her nurses there they DIDN’T even know SHE COULD MOVE ANYTHING ON HER RIGHT SIDE! (The side affected by the stroke)
I have the feeling that they aren’t putting in the effort they should because she is on hospice therefore to them it’s pointless.
Well when I spoke with the nurse she said “As far as her leaving or going home I don’t think that’s possible right now because of her hip.” But they aren’t working with her as much as they should. She finally got to get out of bed for the first time on Saturday. She’s been there for 10 days!
I'm a caregiver by profession and it kills me every time she says “Gena please take me home!”
I have literally had to teach her to walk again about 2 years ago after her last medical emergency.
So what do I do? I’m so scared she isn’t going to ever be “in the right condition” enough to come home…
But isn’t this what hospice is for? I do more for her “physical therapy wise” than the nurses, so why is she even there?
My mom has always said to us “I don’t care what happens do not ever put me in a nursing home! I wanna be at home, not some place by myself with no one who cares about me! That will be what kills me!” So, I swore to never do that to her.
I know she was scheduled to go there for rehab after the hip surgery, but that was before we knew she had cancer.
The nurse even said “well we can only do so much since the hip and the paralysis is on the same side.” But can’t they? Isn’t that why she is there?
I can’t shake the feeling that they are doing the minimum because “what’s the point of putting effort in to someone who’s just going to die soon?”
I feel like this is wrong! I know with every fiber of my being that they aren’t putting in what they should, I just know it! 🥺
What do I do?
Any opinions? I want truth and transparency, I don’t want anyone to say something just to make me feel better, I want to know if I’m doing what is right, or wrong, or if I’m just crazy?.?….
Please anything will help!
Thanks for reading,
❤️ My mother’s daughter
They will arrange to have all the equipment that you need there before your mom gets there.
But you can not do this all yourself. you will need help. Hired caregivers or a dedicated family that can help out (and they drift off living their own lives)
She is on Hospice so any PT is not done as "rehab" ,but for comfort and keeping limbs loose so they do not constrict.
If you wish more "aggressive" PT change the Hospice to Palliative Care. Once the more intense PT is done you can ask that she be placed on Hospice again if she still wishes no treatment for the cancer.
Talk to her doctor and see if she can do her therapy at home. Be aware though, that hospice is not there 24/7. Family needs to be there most of the time. Aides are usually an hr or 2 a few days a week. But there was a poster who said she was able to get 4 hrs a day or something like that.
Rehabs are not prisons. Mom cannot be kept there if she does want to be. She can leave Against Medical Advice. This means no prescriptions or being set up thru Rehab for "in home care". But you have Hospice for meds and Moms PCP for "in home care" referral. Don't let Rehab tell you insurance won't pay if you leave AMA. They will pay.
Her circumstances have now changed drastically from who she was with “just” hip replacement.
In my world, 61 MAY be VERY YOUNG or YOUNG or NOT YOUNG. What category is SHE IN? Is the nurse saying what the physical therapist thinks? Have you had a conversation with the physical therapist who is working with her NOW?
Would YOU feel better if you got a second opinion on her overall case management?
Do YOU have information from an oncology source as to the specific progress of the cancer(s)? Have you researched ANY other treatment options? If she is making assumptions about “home”, is it fair for you to support them?
If there is an assumption that she’ll “…die soon..” Has “soon” been quantified?
“6 months?” “A year?” “We just don’t really have a good guess”? YOU need to know, even if there’s not info that’s too solid. You need to be on SOME same page with some of the caregivers who are dealing with all the issues confronting her.
My advice-? Try to set your own expectations on “day-to-day”. Too weak for chemo? Why? Is she eating well, doing things to stay sharp, sleeping on a regular restorative schedule? Is she encouraged to do wholistic rehab based activities? What FACTS have convinced you that “they aren’t doing enough”?
Are there alternatives to her present placement? Are you up to doing research into other possibilities?
Hardest questions- is there anyone with whom you would feel satisfied, if that person gave a well informed but sober rationale for the treatment (or lack of) that she’s receiving now?
Is the burden of responsibility for decision making ENTIRELY UPON YOU? Can you find an advocate to work with if you decide to make changes in your mother’s placement?
No matter what you decide, “in home” caregiving for an LO with multiple disabilities is often MUCH HARDER than expected. Could you be comfortable with a “Plan B” IF you brought her home and found that her care was too difficult for you to manage?
Think this last question through VERY CAREFULLY. The possibility that I wouldn’t be ABLE to care for my mother NEVER OCCURRED TO ME until I slept on the floor next to her bed for 6 months, and gained 60 pounds of “stress weight”.
I will be thinking of you as you and your mother move forward.
As for taking her home IMO that would be a never. She needs special medical care, not just a caretaker. Cancer is a whole different ball game.
Most likely rehab is out of the question due to her overall health, you are wishing and hoping without taking everything into consideration. For some rehab is very painful and with all her other medical issues it may not be doable.
Sometimes we need to accept the situation for what it is.
Sending support your way, I am sorry that you have to deal with this.
Good Luck
My point is, take your mother out of that facility after you do some research about some other rehabs. You may find one that has a much better physical therapy unit. Read reviews of other places.
Your situation is very different than mine, I know this. But, talking with the social worker was very helpful to me.
I hope you get some answers. This caring for and worrying about our mothers is not for wimps. I wish you peace and patience.
I suggest you talk to your hospice provider and see if they will agree to work on a plan to provide home care.
I stress: work on a *plan*. Do not make any promises to your mother, it may not be possible to keep them. But if she can see - because it's true - that you are finding out how and when and IF she can be taken home, at least she'll have that reassurance.
With the stroke, the tumours, the hip surgery - I doubt if the rehab people have written her off, but you can imagine for yourself what the limits might be for the therapists. And why did she need the hip replacement? - were there other medical issues beforehand, too?
Most important: no, you are not crazy. You are dealing with a whole set of difficult and stressful practical and emotional problems and it would be weird if you didn't feel as you do.