Mom, 90, broke her hip at the end of Jan. After misdiagnosis, finally partial hip replacement in early Feb followed by 2 1/2 weeks of short-term rehab. Since she still required a 2 person assist to stand and couldn’t walk, we moved her to higher acuity assisted living from her prior senior living community. We avoided a skilled nursing facility because we were hopeful she might continue to progress with OT/PT to get to at least 1 person assist with walker. We figured she’d get more care potentially.
However that last move seems to have just pushed her over a mental cliff. Her slight cognitive decline has now become behaviors including hallucinations, inability to remember where she is, thinking her parents/brothers are still alive, yelling for help, etc. She had two falls attempting to get out of bed at night which left her very bruised due to blood thinner but nothing broken.
She now refuses to get out of bed for any PT/OT or even to sit in chair. After some attempts to reduce her anxiety with Trazodone which had mixed results (still overnight yelling events disturbing other residents) the Care Director says she must go to Memory Care which happens next week.
She says if Mom still refuses to get out of bed after that move, she will have to transition her to hospice after about 2 weeks.
I’m so confused because I don’t really understand what that means. Have they given up on her? I am second guessing if we should have chosen skilled nursing.
Any thoughts or advice?
She may well need skilled nursing and might actually bounce back to some extent with some more intense PT, but no one can force her into hospice.
Often times a major fall with broken bones can lead to the demise of a person especially one of your moms age.
It definitely sounds like your mom needs to be in skilled nursing instead of memory care even, as her level of care may be beyond what memory care can provide.
And only the family can decide if they want hospice brought onboard, so that decision will be yours and not the facilities.
I wish you and your mom the very best in this very trying time.
Has mom been checked for a UTI which can cause the symptoms you are describing. Often times moves will also cause her symptoms.
I would start with a call to the Area Agency on Aging to speak with the ombudsmen for the facility. They visit the facility and then be able to help you. The ombudsmen program is a free service of the federal government. Even the fact that she can remain in AL on hospice, if bedbound, sounds off to me. are you sure the facility is not just trying to fill beds?
Hospice care is not 24 hour care, it provides some services several times a week. What will AL do with her the remainder of the time? Something just is not right!
Get on the phone to the ombudsman, do not ask the facility for the information, find it yourself.
Thanks for including your location in your profile. It helps us to give you location specific information. The Aging agency for Chester County: https://www.chesco.org/135/Aging
Good luck.
Be guided by Mom. Does she still enjoy her food, wants to get out of bed to sit in a recliner? Watch TV or listen to radio? Or is she holding your hand & telling you she's had a good life.
I agree that no-one can or should push hospice.
Why not go day by day & see what Mom's mind & body tells you.
What would provide the best comfort for Mom now? If that is her own room in AL, see if that is possible.
Why couldn't she have had PT in a skilled nursing facility?
"She now refuses to get out of bed for any PT/OT or even to sit in chair'.
Have you gotten an objective opinion/assessment from a cognitive specialist (psychiatrist/psychologist/neuropsychiatrist/social worker)? You need to get a better sense of where she is cognitively before you can fairly determine what her ongoing needs MAY be?
A specialist can also refine recommendations for dosages for specific medications, and hasten the efficacious use of them, AND make focused suggestions for behavioral management techniques and possibly modifications in her environment.
My mother never recovered cognitively from the surgery that followed her shattered hip, and it would have saved me (and her) a lot of suffering if I’d looked for a cognitive evaluation sooner.
After 9 horrific months in my home, she entered a very fine local skilled nursing facility where she lived in comfort for 5 years, passing at 95.
At least where I am, rehabs are listed as "acute" or "subacute" and that has nothing to do with what campus they are located in.
Are you saying mom qualified for acute rehab initially?
Who is advising you on choices of facilities?
we selected a place and she was there for 2 1/2 weeks where she did not progress much beyond them getting her into a chair
insurance company and subacute rehab assessed she was at her new baseline (requiring 2 person assist or Hoyer lift) due to self limiting behaviors so subsequently recommending long term skilled nursing
at that point in time she was better positioned cognitively; there has been significant decline during last 2 1/2 weeks
Hospice can mean a place, but is always a service.
When it is a place (not in the ALF or SNF or your home) it is generally for just the last week or so of life. The patient is actively dying.
In the ALF it would be a service. The service includes a nurse (usually once a week) a doctor rep. (NP, PA) each recertification period, and a CNA for baths. Most of the posters say they only receive a CNA 2 or 3 times a day. I was able to get my DH aunt a daily CNA visit. Not all hospice companies offer the same services. There is also spiritual support and a social worker. All of this gives the ALF more help to care for your mom. They also provide medical equipment, assorted supplies, hospital bed if needed, etc. The only thing your mom would be giving up would be therapy. She can still have all her meds plus the weekly nurse to help manage any additional meds needed to manage her cognitive decline. It really is not giving up as much as it is meeting mom where she is now and giving her the oversight of more medical staff. It’s more, not less.
I would encourage you to keep her in the ALF with hospice instead of moving her to a SNF at this point for all the reasons you mentioned and she wouldn’t have the stress of moving. If she recovers to the degree that she is willing to try therapy, she can come off hospice and go on Home Health which offers many of the same services, as well as therapy. Even though it is called Home Health, she can have that in the ALF as well. And it is possible that she will get better.
The Care Director may have a hospice they like to use and are familiar with. I made it a condition when my aunt was moved that she have her same hospice we had used at home as we had used them for several years.
Your mother requires more care now than the Care Director can provide is what I’m hearing. She is willing to give you the comfort of the ALF with hospice oversight rather than your having to move mom to a SNF with or w/o hospice to get that same oversight. She is telling you that they aren’t equipped to do the level of nursing your mom requires and giving you a way to keep mom where she is.
I put my aunt on hospice at home because I wanted her to have more baths than HH provided, not because she was dying. She already had home health with the same company. She was not then nor now actively dying. She is 96, with dementia, takes thyroid and blood pressure meds but has no cancer or CHF or diabetes or broken bones etc. She has no pain. She just refuses to get up except to transition to a wheelchair to go to the shower with her familiar CNA.
Many of the seniors at advanced age qualify for hospice that are not on it. They are in decline. The word hospice scares us. It was hard for me to sign the papers even though I knew I was just making it possible for aunt to have more care, not giving up. It is more a recognizing that it is your mom who has given up and doesn’t want to do anything that will help her regain or maintain her strength. It is more that she is in decline and that’s the reason she will qualify and that she needs 24/7 care.
My aunt is in a SNF currently with hospice. She was in an ALF before going to the SNF. She had hospice there as well. I knew she would run out of money soon so I had to move her where she could get Medicaid when needed. ALFs in her area don’t accept Medicaid. They told me they would keep her and called me for months after she moved to see if I would reconsider.
Talk to the hospice “community educator” or social worker and share your concerns. My aunt still sees her geriatric primary via zoom. So she basically has three doctors. The SNF doctor, the hospice doctor and her long term doctor. She has been off and on hospice at least twice in the past three years. It is very easy to go off and on hospice IF the person is in decline.
Same issue for my mom that you reference — the money isn’t infinite and I’m concerned whether I should move her now to SNF with or without hospice to ensure she can qualify for Medicaid when needed once ALF indicates they won’t proceed without it. ALF does not accept Medicaid.
While I believe Mom might be more comfortable in ALF with hospice, I am concerned about having to move her later when she’s in worse shape to SNF in order to transition to Medicaid.
I think I need to talk to an elder care lawyer about the Medicaid eventually. I’m afraid of making a decision that might screw things up for her.
I just saw why this AL was chosen. Seems Mom didn't like the SNF. I read between the lines on this one "she will have to transition her to hospice after about 2 weeks". You are being given options. The option is Hospice and if you don't agree with it, Mom must move. So for now I would agree to do what they suggest.
Breaking a hip at 90 is very serious. It was said on another post that if at 90+ you have a hospital stay and lose the use of your legs because u have been in bed, its like use it or lose it. PT does not always help. This may be where Mom is at for the rest of her life. And I would not force her to do anything she does not want to do. She is 90 and this all has taken a lot out of her. Maybe the Director is trying to tell you something. People get where they just want to be left alone. No more poking or prodding. No more people trying to tell you what to do. Just want to rest.
Your mom may be too far gone to make progress w PT and OT now. They often give up and lie in bed which is not something YOU have control of. There has to be cooperationfrom the patient in order to see progress. Neither my mom nor my dad were capable of making such strides ( mom due to dementia and dad a brain tumor) so hospice was called in. I was very happy with their level of care for my late folks.
Hospice isn't "giving up" as much as recognizing the patient has maxed out on medical interventional care. Admitting it's time to stop pushing an old and addled body and mind to do something they're no longer capable OF doing. It's choosing a compassionate approach to allowing nature to take over w/o hospitals and "specialists" poking and prodding your mom's peace. They'll allow her vital meds and things, and Dr Kevorkian isn't lurking in the shadows to do away with her. My folks both took very few comfort meds and passed when God was ready for them. Hospice just gave the ALF another set of hands and eyes on them to provide care and required supplies all free of charge.
God bless you thru this part of the difficult journey
lf finances weren’t in play I think we would choose ALF and hospice if she is no longer willing to try to get out of the bed.
She was eligible for Hospice when she finished a few weeks of rehab in the SNF. We chose not to engage hospice at that time.
Mom lived for 4 1/2 years after entering the SNF. Just one metric.
Then came rehab at the local nursing home. A "care plan" was presented which spelled out the daily PT/OT routine she was to receive. I made it a point to visit at least twice a day (different times) to keep her company and monitor what was happening. One day, I found her in bed with the blinds closed when she was supposed to be in a PT session. When I asked staff, they said mom had stated she was tired, so they just let her stay in bed. That was unacceptable to me and I made it clear to the supervisor that mom was there build her strength and return home. I ended up participating in many of her PT sessions, attempting to build her confidence, and learning skills I would use later on. There were some days in rehab when mom was just not up to it, so I took it slow, always encouraging her to try. You need to be your mom's advocate and have a say in the treatment she is receiving.
It was a whole new world when mom came home, as the once vibrant woman I knew now needed assistance with her daily routine. That is where my journey as full-time caregiver began, and what a journey it was. The great thing is that through it all, mom was very cooperative and we worked as a team to adjust to a new normal. Good and bad days followed, but in the end, she was still able to use her walker, was able to still feed herself, and she still had her wonderful smile. She was at home until the day before she died at age 93.
I certainly understand each situation is different, and my advice is to encourage your mom as much as possible, but also understand she just may be at the point where enough is enough. I learned the importance of empathy and compassion during my cargiving journey. You will need it too as part of yours. All the best.
Thank you.
Have them check for a UTI immediately. Very common to change behavior and mental status and yet, for some reason, facilities put off testing for it even though they all know how common it is. Family or other advocate often have to push for it.