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More than likely my mom will be discharged from hospice sooner rather than later. Mom was admitted due to cancer and CHF and is also bedridden with dementia. Both the hospice doctor and nurse have been discussing this for about a month now. She's been under hospice care since Feb 2020 and by all accounts has improved, no serious pain or other issues.


I'm concerned about her level of care after discharge. Her insurance is not accepted by homebound programs and she definitely needs to be seen at home. Her last in-person visit to doctor was awful then she was hospitalized shortly thereafter then sent home under hospice care. My mom doesn't want anymore chemo or other curative treatments for the cancer.


So my questions are (1) how to navigate her current insurance for now and (2) is it possible to switch her insurance and if so, how do I find the right one to meet her current needs?

Mone was discharged from hospice after 2 years. She no longer was loosing weight ( 99 pounds from 140 , but leveled off) her pain controlled by meds, and no longer falling ( the facility keeps her in a wheel chair all day and she sleeps in her recliner. She kept getting out of bed and falling, not when in the recliner though). Hospice said I could appeal, I did, the independent review upheld the discharge. No one suggested requesting a different hospice company, I may look into that. I miss the support very much.
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Reply to GrandmaC
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You have the right to contact another Hospice. If you choose to go with another they can help getting her transferred from the current on to the one you choose.
My Husband was on Hospice for almost 3 years and I have friends who have had spouses on Hospice for longer than that.
I can not stress enough to keep a log or journal that will help identify declines that may not be noticed. Also document an falls as that is also a sign of decline. Even if the fall was a non injury one. And do not try to lift someone yourself, or prevent a fall. Help someone to the floor as gently as possible then call 911 and ask for a “lift assistance”. In most cases there is no charge if the person is not transported to the hospital.
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Nurturbynature Jun 9, 2021
Thanks again. I keep reading about CDC guidelines etc about length of time being on hospice. Was your husband and or the other spouses recently on hospice for that length of time or was this years ago? Just curious.
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@ funkygrandma & Grandma1954,

Thanks so much for responding, the information has been helpful.

I just have a weird feeling that they don't want to care for her anymore and just simply don't know what to do with her. Perhaps she's not dying fast enough and or not in enough pain etc. idk. With the exception of one nurse, I really like the staff and they seem to like mom and I.

I dreaded making the hospice decision a year ago but in hindsight I'm glad I did and its a comfort knowing that they are just a phone call away.

If they do discharge her, I'll have to switch health insurer's because she will need a homebound program.
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Reply to Nurturbynature
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There's absolutely no reason that hospice should be letting her go from their care, as she meets all the necessary requirements for their care. My husband was under hospice care for the last 22 months of his life. If this hospice agency tries to let her go from their care, please call another agency in your area(as all areas have more than one agency to serve the area)and get them on board ASAP. You shouldn't have any problems bringing another agency on board. I wish you and your mom the best.
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Reply to funkygrandma59
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As long as she is not getting any treatments for the condition(s) that would be life limiting she should be able to continue on Hospice.
There should be a documented, continued decline. If she has had any changes that would be considered a decline then she should be able to be recertified.
Changes might be
Weight loss. this can be shown by arm measurement or looser clothing not just a scale.
Was she walking a bit before and now not, or fewer steps? That would be a decline.
Was she sleeping 10 hours and now sleeps 12, 13 hours? That is a decline.
Was she eating a full meal and now only little bits? That is a decline.
Was she able to brush her hair before and not can't? That is a decline.

If one Hospice "graduates" her or discharges her from their service you can always contact another and have her evaluated.
I truly am surprised with the diagnosis of both cancer and CHF along with the dementia that they are thinking of discharging her. This would be a time to talk with the Social Worker from Hospice and see what your options are.
But again if you can document any declines that might help keep her on service.
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Nurturbynature Jun 11, 2021
@ Grandma1954,

Since my last posting, there has been back and forth discussion with hospice and PCP about documented decline as it relates to weight loss. Mom is bedbound so weight determinations are made by measuring hanging arm fat that's not going anyplace. Hospice never pulls back the covers to really look at my mom other than to check vitals.

Because I change and bathe her, I have noticed changes in her belly torso area and should hospice be monitoring this area for weight loss determination? If not, will we really know weight loss of a bed bond patient as all of her shirts are already too big.

Any feedback is greatly appreciated.
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