@MomofJandL it sounds like you need to document for yourself, and also know your rights - so you can do what is best for your mom within the limitations she has. I am sure your mom’s financial resources are paying for her great two bedroom apt. Once that is given up, no going back. Is the residential nursing home within the same ownership as her apt? If your mom does decide to ‘give up’ there is no guarantee she will get the fast end she wants. We don’t know the time frame in a fade. Hopefully the medical doctors and even talking to her pharmacist can be helpful being on the best regimen for her body. How old is your mom, and does she have family longevity? Is it coping with Congestive Heart Failure?
@MomofJandL, is it possible the person making the PT decision is referring to the alleged “no-improvement standard”? Please look at this webpage: https://www.medicareadvocacy.org/jimmo-v-sebelius-the-improvement-standard-case-faqs/. The no-improvement standard has been subject to long, but ultimately favorable to the plaintiffs, litigation.
This seems an important statement of her wishes. I would consider getting a palliative care specialist involved to help navigate treatment options that best align with her values and goals. Palliative care is different than hospice. Palliative care can help with making treatment decisions where hospice really looks at how a person’s end of live can be as comfortable as possible.
@rosered55, yes, that seems to be the ‘rule’ being cited, and whatever the reports on her computer that I can’t see might say, my sisters and I and the nurse and her friends have noted improvement, so there is some possibility of wiggle room there. In addition, her mostly improved physical/cognitive health make her more receptive and responsive to PT than she was 3-4 weeks ago, which the “care team” should consider.
(The bureaucrat PT director scolded my sister that keeping her there if she isn’t improving is Medicare Fraud. Maybe, but she is in fact improving. Update your reports.)
And yes, the CHF is a factor for now. When everything is in balance, she’s great. She was wearing shoes this morning and everything looked great. After a couple of hours out of bed fluid is back and she’s in bed with hands and feet elevated again. Pee, medicate, repeat.
@GTalum, we think that if she/we/they all agree that she can’t get back to her apartment and can’t even get to Assisted Living level then she will probably go on palliative care. The conundrum is when to make that call. She of course can make it any time and we’ll do what she wants, but right now she sees a possible path back home and wants to keep trying. She’s 93, and there is longevity in the family for the ones that managed not to smoke or drink themselves to death.
So it sounds as though the PT director is incorrect about the law:
Question: Is it fraud for a skilled nursing facility, home health agency, or outpatient therapy provider to continue to provide skilled nursing or skilled therapy services to a patient who is not improving?
Answer: No. As long as the Jimmo Settlement is followed, the patient continues to need professional nursing or professional therapy services to maintain the patient’s condition or to prevent or slow the patient’s decline or deterioration, and all relevant coverage criteria for the particular health care setting are met, Medicare covers the services and the health care provider is not committing fraud.
^This is gold, thanks!
My FIL’s rehab facility was trying to push him out for lack of progress – of course he couldn’t use a walker, he had gout that swelled up hugely and a massive IV line infection in his hand!
I found it helpful to look at the critical paths that needed to happen to get to the desired goal.
I raised a couple of these issues with BIL, he argued with the facility, and they added two weeks. That was enough time to resolve the hand issues so he could actually start PT for walking, and then he was making enough progress on that and stayed another four weeks.
But as we all know, things can turn on a dime.
It is important to advocate for our elderly loved ones, especially when they need to recover enough to be able to use the services and make progress so that a determination can be made as to how far they can progress. There are always going to be pressures to push our loved ones into the next setting but most places hate appeals and if one is firm enough about wanting to allow the elder to heal enough to be able to use services, it sounds like this can really help make better options for the elders.
@MomofJandL I wasn’t suggesting she “go on” palliative care. Just a consult to make sure her goals and wishes are aligned with her future medical care. Palliative care can be a specialty consult, such as a cardiology consult. It is hospice that you get admitted to. Yes, it is important to advocate for you mom to get all that she needs to recover as much as possible.
It comes back to being a parent of anyone (parenting your parent is such a great thread title) . Holding the line on self-determination yet being a advocate when appropriate. Not that much different than getting through those troubled teens. Working through anger management and eating problems, not that much different from making it through terrible twos.
But the sad and terrible thing here is that we are going backwards through the process where steps are rarely forward nor cause for celebration.
We are still giving it our all for someone we love at best or someone we feel responsible for at worst. Yes, it is important to advocate for elders AND to be kind/caring/cognizant of yourself and needs, too.
@MomofJandL - you are in a tough spot. It is so difficult to not have a crystal ball (not that I would want one) with our elders. Take care of yourself too.
@esobay Truer words. We’re trying to take comfort from the thought that we may be able to help my mother (the only elder left) eventually have as “good” a death as possible. I guess it’s the only “forward” any of us has left.
This thread has been quiet lately and I hope it’s because you all are out living life, not because you are bogged down with parent needs.
This is my busiest week of the year, work-wise so I have not been on CC much nor have I been able to have long visits to my folks. I did have a conversation with their neuropsychologist that was helpful and I did have an appointment with a therapist for myself to help me work out some of the stress of all of this. She seemed very good and we had a nice rapport so I am looking forward to her help.
For now I am going by the “no news is good news” adage for my parents. Next week I can get back into thinking more about their long term future.
Thanks for the update @surfcity. I plan to search for a therapist starting next week. I should have some breathing space. So far, hospice has been great with services for mom, but causing a lot of business with meetings with the intake nurse, regular nurse, social worker, chaplain, and discussions with volunteer coordinator. I realized lots of services means lots of meetings! At least initially.
Mom has stabilized and I worry the referral was a bit hasty, but she has dropped down to 84 pounds from 89 a couple of weeks ago. I’m trying to be there more at meals and I watched her take 30 minutes to eat 2 bites of food. It is painful to watch. People always try to encourage me by saying “many people graduate from hospice” as what they think is encouragement. Of course, with mom clearly struggling and in a condition she would be horrified about, such comments make me feel worse. It helps me to remember to say things like, “how do you feel about this?” in response to comments about a loved one’s illness rather that the insert “what I think is a positive comment.” I think people don’t really want to know how I feel. This is why I need counseling.
@GTalum, (((((hugs))))). I can only hope that therapy is as helpful to you as it was to me (it transformed my life!). I started when I was feeling desperate and the relief of having a therapist was exactly what I needed.
I have a question about hospice. I see that on the medicare website, it lists physical therapy as a permitted hospice expense, yet from what I am reading, hospice organizations do not provide regular physical therapy, but rather may send a physical therapist to the hospice patient once to give the families a set of exercises for the patient to do. Has anyone here had experience with hospice providing a regular physical therapist?
Also, can you comment on your experience with hospice? Positives? Negatives?
@PurplePlum - the main goal of hospice care is for patient comfort, and family support near and at the end of life. If PT could reduce a person’s pain and improve quality of life, most programs will do it. However, my experience is that usually hospice patients are too weak to benefit and in many cases it will cause them more pain.
I’ve worked and volunteered at a number of hospices around the country and they all had contract staff for PT and OT. It is not a typical, core service, but was available on a case by case basis.
Aside from doing hospice work, I’ve been on the family side three times with different programs. They were all wonderful. My advice would be to try to find a not-for-profit hospice in your area. The for profit programs tend to be more rigid in what they will and will not provide. If your loved one is in a facility setting, ask for a list of programs. Often times a hospital or nursing facility will refer you to their preferred provider which isn’t necessarily the best in your area. They are legally obligated to give you a list if you ask for one.
Don’t be afraid to interview and talk to different programs. There can also be a wide variety in visit frequency for both nurse and HHA services. I would also ask about average response time if you need a nurse after hours as well as if they have a dedicated in-patient unit. Free standing units, not attached to hospitals, are better IMO.
Please feel free to PM me.
Agree with @momofsenior1 but a for profit hospice may provide just as much as a not for profit hospice - one just has to look at that particular hospice and maybe get recommendations from trusted sources. We have a ‘not for profit’ hospital that is all about growth; a not for profit could also be all about growth too/acquiring buildings etc.
Agree. It’s about the local reputation, etc. There are also quality rankings. User/family satisfaction and feedback is critically important where I vol, part of the Medicare reviews.
When it came time to arrange for hospice for my mother, I got a recommendation from a trusted nurse at my mother’s nursing home. Not only had she seen how the various hospice providers treated residents, but her husband had received hospice services (not at the nursing home) when he was dying. I’ve been satisfied with her recommended hospice.