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
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!
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.
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.
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.
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.
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.
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.
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)
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.
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.
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.