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Dear AgingCare Family,


On the 22nd of August (2019) my Mom’s hospice care will be discontinued as her health has stabilized. I have DPOA for my mom and have attended to her matters since her fall in January of 2018.


The Hospice case manager comes to see my mom every other week & the nurse/cna comes on Monday, Wednesday and Friday. During the nurse/cna visit they shower her. The facility gives her a shower on Tuesday and Thursday.


On the 8th there is a care plan change meeting. I’m at a great loss as to the questions to ask. I think I’ve covered the basics. However I’d TRULY APPRECIATE your input on what questions to ask.


I don’t want to make this too long by going through what lead to her being placed there. Hospice has been my extra eyes and I’m really going to miss their services.


Thank you you so much!


In Faith and Appreciation


M. Hill

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Attyrhand: Okay. That is good - I was responding to your prior comment below in the thread. I am so sorry that the 3 brothers do not help. And I'm so sorry about her health problems. Big hugs and prayers to you!
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Attyrhand Aug 2019
Thank you!
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Thank you all so very much for your comments, advise, suggestions, information and your time. I’d truly be lost without you guys❤️

In my post I failed to mention my mom resides in a 24 hour healthcare center. On January 2, 2018 I moved her from independent living 106 miles away from me to ten minutes away. She said she’d make the move only If she had her own place. On January 19, 2018, while exploring her new surrounds she fell and broke her femur, suffered a stroke and developed a blood clot in her leg. She has been in a wheelchair since. PT didn’t help. I have three brothers aged 59-48 who are useless.

I received a phone call from hospice yesterday that she will continue with hospice. After further review and consultations with her care team, they are concerned with my moms 15 pounds weight lost since March. I too have noticed a slight weight loss considering she has a great appetite. Her diet is ground mechanical. At least 5 times a month I bring her patty melts, fried chicken, kale or a variety of other items, which she devours.

After processing this information I’m not comfortable with that reasoning. I feel that this should have already been noted and the their decision to discontinue her should not have happened. I’m now requesting a every other month report on her weight and blood pressure readings.

Thank you so very much again!
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IMHO, you should ask what will happen if your mother takes a turn for the worse/makes a 180 degree.
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Attyrhand Aug 2019
I’ve been assured that she will be welcomed into their care again, unless I choose another Hospice.
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See if she can go on palliative care. For my mother, VNA handled palliative care and then hospice when she needed that level of care.
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Attyrhand Aug 2019
Thank you!
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We had hospice for my brother. He was discharged and then went back into hospice care. He died in 2013. The hospice care that he received was very good. Has hospice changed a lot since 2013?
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Attyrhand Aug 2019
I don’t know if there have been changes, as this is our first year on the service. Thank you for your response.
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This may not be very helpful, but my mom has been on hospice three separate times. For what it's worth she lost her ability to walk around the time she went on hospice the first time. She was unable to stand even with support. We got a Hoyer lift to get her in and out of bed. She was also completely incontinent.

We thought she was dying because, in addition to the above, she had lost so much weight she had the body of a 12 year old. And, she was non-responsive to the things she loved such as old movies and music.

She was initially on hospice for 13 months, but she stabilized and even improved. She gained weight, but never the ability to walk. I think it was the medication, Namenda, that made her take the nose dive in the first place. When hospice took her off Namenda, she slowly improved. By the end of the 13 months with hospice she gained weight and became alert and responsive, smiled and laughed at the things she enjoyed, paid attention to conversations. Although I noted that her speech was deteriorating. She could not complete a sentence.

She was off hospice for 14 months. However, during that time she had a seizure and the doctor ordered home health care. She then developed a fungal infection, and I forget what else. My mom improved and that ended.

She then went down ill and seemed to be dying this time. So, we went on hospice a second time. (This was after the 14 months I mentioned above.) As she stabilized and improved she was discharged after nine months. Four or five month later, we went back on hospice. It's been six months this time and she's going downhill. Her appetite is poor and she has trouble holding up her head.
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Wow! What a roller coaster. So sorry.
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Hi, If they do discharge her I would look into Palliative Care. Most of the services are covered under Medicare Part B. Ask your Mom's physician or even the Hospice Care people to refer your Mom. Good Luck.
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Attyrhand Aug 2019
Thank you.
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Our mother was released from hospice after a year. She deeply missed her team and we arranged for private paying of her massage therapist to keep that connection going.
Make sure you establish a POLST to ensure you still have control over unwanted medical care.
We approached hospice to re-evaluate her a year later as she declined, and it was an ordeal to get them to do so. There is (appropriately) a tightening of hospice criteria as there has been fraud out there siphoning dollars to unscrupulous vendors.
We were denied inappropriately and it took firm conversations over the phone to insist on a re-evaluation. They took her back and she died peacefully 5 weeks later.
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BlueEcho1 Aug 2019
We got a POLST when my mom was on hsopice the first time. We were told that it's still good even when she was discharged from hospice. In fact, I took it to our local hospital where we go. They entered it into their computer system for the file they had for my mom.
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You should be thankful your mom has improved and is still able to walk and get into the shower, and be glad she is no longer eligible for hospice! I bet your mom can even to go the toilet. Well, my mom cannot do so, and I have to clean her up in bed (urine, feces) all the time include give her enemas in bed because she gets impacted (it only takes three days) easily and is on tube feeding. I end up giving her an oil enema every 3 days just to get rid of a huge stuck stools. Mom's care is ongoing and around the clock and hospice does not do anything for her in terms of this kind of care. It's all up to me. They only give a CNA two or three times a week for a half hour which is useless to me, so I don't even bother. I go through diapers by the ton and wash her sheets daily. Taking care of a bed ridden parent is very back breaking, hard work, and often nauseating. But she depends on me so I do it. This has also decimated my personal savings since mom is a 24/7 full time job with no breaks.

My mom has been in hospice for over a year, but with end-stage Alzheimer's she is declining and bed ridden. If you are able to shower your mom, there is no reason why you can't help do these things. Hospice is in the business of dying, but in reality you have been getting free supplies (wipes, diapers, wound dressings, gloves medications, transport from hospital to home, ointments, thick-it, disposable bed pads, etc.) which are extremely costly. A box of gloves alone (50 pairs) is $10, and I go through those like water. Medicare also pays hospice about $4,000 a month for a weekly visit with a nurse and the CNA to come over and help. I wish I could shower my mom. I would gladly give my soul to the devil if I could do that again and walk her. But hospice is only for the dying.
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BlueEcho1 Aug 2019
Yes, I've been dealing with the same things for several years now. The incontinent supplies are a killer to the pocket book. In my post above, I explained that my mom is back on hospice for the 3rd time.
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You've gotten some great advice here. I would just add that there is no minimum time limit on when you can call hospice for a new evaluation if it seems like she is deteriorating.

If we had universal health care, this would not happen. Services would not be dependent on "more stringent rules" just because "it's getting expensive."

Vote for Bernie Sanders and healthcare will change for the better.
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cetude Aug 2019
Ohh please. I don't want to hear about promoting presidents on here, and most people on hospice are under Medicare..which is socialized medicine..they are the ones kicking her off. I had many run-ins with Medicare including refusing to pay for ambulance rides to the Emergency Room including with an ER doctor's diagnosis code of threat to life...and on one year's worth of multiple appeals. Still stuck with a $700 ambulance bill.
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Please check on this before accepting their decision.

Hospice care is meant for people who cannot 'get better' (people who are dying, have long-term illnesses, or for lack of a better term "have no hope").

Being 'stable' is NOT a reason to be released from hospice care. I believe only the patient's doctor can determine if they are or are not eligible for hospice.

I've found that some home care agencies (home health, hospice, etc.) do things like this for their convenience--not the welfare of the patient or family.

Just please look into it. This was done to us with home health and I just want to make sure you aren't getting shortchanged.
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BlueEcho1 Aug 2019
I agree with everything you've said. My mom is now on hospice for the thrid time. However, I think to some extent it may have to do with whether the particular hospice company has gotten into to trouble. And/or there may be other legitimate variables.
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Ask what changes will be made to her care when hospice is discontinued.

You say that hospice is your extra eyes and ears. Is there a concern about poor quality care in the facility? Are you concerned that you need to visit more often than you can currently? Maybe friends, family, or close members of your faith community can visit more often.
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Is there any decline that you can document that may not have been documented by the Nurse or CNA?
Is there any decline that you have noticed but not mentioned to the Hospice team?
Either of these might be helpful.
You can ask if they have a Palliative Care option so you might keep the same people and they will be able to determine quickly if mom falls within the Hospice criteria again.
If not ask what decline would have to occur to get her back on Hospice.
Do know that if there is a hospital bed, wheelchair and any other equipment that it will be picked up probably on the 22nd so if she needs a hospital bed, wheelchair and other equipment you should contact her doctor so that an order can be put in and the equipment there by the 22nd.
Any supplies that you currently have briefs, ointment, gloves and the like belong to her/you and they will not take them as they have already been paid for through Medicare (Or Medicaid or other insurance that they have been billing)
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Attyrhand Aug 2019
Thank you!
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Surprise, ref. your mother coming off Hospice. How are you handling potential trips to the ER? That's one thing that the Hospice helped, because, no more visits to the ER at 3:00 a.m. to check for UTI or some minor issue that could wait until the next morning when the nurse or doctor would be in the MC. IF, my LO has to come off Hospice, I would hate to lose the care, but, having her vulnerable to being transported by ambulance to ER in the early morning hours, would really be a concern. I discussed my issues with the facility, but, for some reason, they had some night staff who repeatedly would do it. I think that if it comes to that, I will explore an official Palliative Care program to see if that would help to replace Hospice, until she can return to it.
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surprise Aug 2019
My memory care home is very small and promises me they will call me before making a decision on ER transport. Mthr has a DNR and the home is very good at not calling.
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Mthr stabilized too, about 2 years ago after 2 years on Hospice. We're having the conversation about restarting services and our H nurse says that Medicare is denying more dementia patients now so they have raised the bar for qualifying. What you want to do RIGHT NOW (before end date) is to ask them to take a last blood draw before the end of services so you can have documentation of her CBC and CMP levels at discharge. When she drops in certain measurements she will be eligible for hospice again. We are looking for an albumin level of below 3.0 in our case.

What we did was to ask our memory care home if I needed to hire aides for her for dressing and bathing. Our answer was no because Mthr only takes a max of 2 showers a week even with aides available. We have enough staff that they let her feed herself over 2 hours per meal (we are fine with that). She hates being fed. And our home dresses the patients normally so no help is needed there.

What did change is that I needed to order 3 services: incontinence, medical care, and drug packs. I needed to order the adult diapers, disposable wash cloths, and the blue under pads myself. My home's manager told me the best prices were from Sam's, and I have everything on auto ship. It took a while to get the timing right, and we had a closet full of extra diapers for a few months, but it's good now. We also had to hire a housecall doctor service to visit at the memory home since we don't have an in house doctor. They come out once or twice a month to check on her and refill her anxiety meds. I don't have to take mthr out which I think would be traumatic for her, and I don't want to change her if she has a blowout. Because she cannot walk without assistance, she is considered homebound and Medicare completely pays for the services. If she lived at a house, she would be charged $50 per visit for driving, but because she's in a facility, it's included. I'm also paying the pharmacy for her prepackaged drugs again - I just transferred the service hospice used for her drugs to being paid for with Mthr's money. That's all I had to worry about, those 3 bills.
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Attyrhand Aug 2019
Thank you!
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Not knowing the circumstances, I am assuming hospice feels your mother has stabilized and is not actively dying.

Hospice has to bill correctly for reimbursement and if there is no medical justification to bill for their services they won’t get paid.

Because Hospice is covered by Medicare, they must comply with Medicare requirements which are very stringent. If your mother’s labs have stabilized for example & and her doctors feel she is not terminal at this time, she can always be placed back on hospice when then time comes.

Its hard to lose their services as they help you keep an eye on mom. But maybe it’s a good thing your mother is getting better? I can’t say without knowing the history.

Good luck to you.
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If you feel there is a valid health and end of life reason your mom is on hospice, fight for it. Hospice companies have very strict Medicare rules they have to follow. But if you know of some health facts that maybe they weren't aware of, make them known. Some info may not have been correctly relayed to the hospice team that visits your mom.
My mom was going to be dropped as well after 7 months, she sort of stablized about 6 months (home care)in but there was no way she was going to get better, only worse. Found out that the hospice company didn't seem to have some very important info about her....like her kidneys failing, and several other things. Thank heavens I fought it, less than a month later she has stopped eating and drinking and close to passing. My Dad was very happy that she continues to have hospice care as I'm not sure he'd manage this without their extra support. Hope you find your solution.
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Attyrhand Aug 2019
Thank you!
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