How does Hospice fit in with other services?

Jeanne, I just stopped Hospice and although you hear good things, there is just as many bad things more than I will mention here. I think in the very very end they might be okay? My Mom is non verbal, 90, and according to the doctors, severe dementia or alz, they cannot tell for sure. She cannot walk and I puree her foods and use thick-it. In desperation I called Hospice several times after a seminar I went to, no one had mornings available. Mornings are horrible for me and then I am okay. Finally after calling the best rated Hospice again and was told that just hired two HHA's and they guaranteed me they had every morning available. On our 4+ hour intake interview at my house I was told they are experts, can hoyer Mom, roll her, bathe her and get her ready for the day in 1 hour. I explained to her all of the problems I have with the hoyer and I cannot roll her as she resists. Long story short, day one a HHA came and she couldnt roll her, nor get the hoyer to pick Mom out of bed without being on a curve making it impossible to get her into her wheelchair. Day 2, they send another HHA who also had the same hoyer problem and pushed Mom real hard to roll her whacking Moms hand against the wall twice as soon as I walked out of the room both times to get a towel and throw away her diaper. Needless to say I give anyone many chances, and I am here to help. Day 3 Hospice is due at 830am and the phone rings telling me the HHA hurt her back and will be out 2 weeks and they are not sure who they can get now as she thinks Mom is too difficult a case. They then offered me help for 1 hour about 2 or 3pm occasionally(moms nap time) My only problem is mornings, I stressed that before I signed. Once Moms up in her chair, I am set other than lifting on and off the toilet for bathing.
The nurse who did the intake was so nice, she came over and said "I am coming back to you with my tail between her legs." She explained Hospice is supplemental, they come when they can, and if they dont have anyone, they dont come. She said Mom is a 2 person assist and most at her stage are in a nursing home, although I am here to help but I need a strong person. (My husband and I can roll her together to get her hoyer sling off at bedtime but he leaves at 5am for work)
I am not knocking Hospice here, just want to tell you my story and I am sure others will. I signed out of Hospice and hired my part time CNA every morning, she is fabulous and I am broke, lol.
After I signed up in the beginning, the Nurse said to me "now dont call the ambulance or go to the hospital or doctors and dont buy any medication , call us for everything day or night and we will mail you a medication kit to not open "unless we tell you." (it never came)
WHAT? When I called originally and asked I was told I could still do all of those things, but guess what, if you do, you pay. From Hospice on, you are dependent on them and cannot use medicare for coverage unless they approve. I am glad I am out of it and when I signed out, she asked, "and who do you want her doctor to be now?" I was shocked, as Moms been to the same doctor for over 20 years, to think they removed that priviledge even temporarily erks me.
Since then I talked to a friend I met at daycare years ago and her Mom also had Hospice, she said there were days Mom wasnt ever changed and they were to change her daily at the center as she was in a reclining wheelchair all day and a 2 person assist also. A long time friend just had her husband pass away in a Nursing Home of cancer 2 weeks ago, she told me when her husband needed morphine they had to "call" Hospice and it was hours before anyone could come, she was furious and wish she never signed on. Finally Hospice gave the Nursing Home the authority to give that Morphine for them as they had no one available.
So, as far as other services, make sure you know these things and dont let them fool you. Yes you can call and ambulance and go to the hospital and your doctor but you will pay for it out of pocket.Yes they will send an Aide, but when they want to. I hope this helps and please no one take offense. I decided to do things without them and use moms doctor and be in charge, not having them call the shots for my Mom. Hope some of this helps you.

I used Hospice services for about 3 months and was very pleased with their attention to my wife, the patient. Also they had literature that helped me better understand the dying process. Eventually I discharged Hospice when I was able to care for my wife myself, but there was something that bothered me. When I expressed concern about who paid for Hospice I was simply told it was all covered, "You won't be billed . . . don't worry." But I did worry. Later I found out that Hospice submitted very substantial bills to Medicare without sending me copies. I don't know whether these payments will affect other services that may be paid for by Medicare in the future, but being left in the dark about billing is not good. It leaves speculation as to why . . . and speculation is not good..

Dirk, I was told by reliable source that the hospice we use for my dad charges $10,000 a month! Now I know we don't get $10,000 worth even though they cover his meds, hoyer, bed, oxygen, other aparatus, diapers, pads, interal feedings, 2 nurse visits a week, plus right now CNA visits 5 days a week to bath him (this is recent, before it was 3 days) If only he could get this coverage outside hospice for Drs and specialized care! I guess there is good and bad to everything. My dad has been on hospice for 11 months now...I can only imagine the bill. Best of luck to all in this very difficult decision for loved one, it is a good service, no complaints, not perfect but what in life is?

Hospice is an entitlement benefit under Medicare for citizens who qualify for Medicare. Hospice has several levels of care from the base level through to general inpatient where symptoms are out of control requiring constant review and management. Under this general inpatient level of care an RN has to be on hand 24/7 so it is really in a facility. Continuous care is also available where approrpiate but need not be conducted by an RN, although the case manager is (or should be a nurse). There are requirements and you can google these - they are called Conditions of Participation (COPS) and these spell out what is required of a hospice provider. Typically they cover a base line of care and most hospices exceed that level of care whenever it is needed by the patient. Hospices bill direct to the payer (Medicare mostly) for hospice care and all care for the admitting problem (diagnoses) are covered. So unless you are paying yourself, and if you have Medicare coverage, there really should be no bill from the hospice. If the hospice bills over the amount then the bill will not be paid by Medicare and the hospice queried.
We all pay for Meeicare during our working lives and 2.9% of salary, 1.49% from our pay check and the same from our employer goes to Medicare to cover costs. So that's why its an entitlement, you have previously paid the bill

Hi Jeanne, I found the MN site and copied the following:

a) Hospice. Enrollees who elect to enroll in the Medicare Hospice program 10 while enrolled in MSHO are not required to disenroll from the MCO’s MSHO 11 product.



It looks (to me) like you would be able to have the same services but the EW case mgr will tell you for sure. (Unless I have the wrong pgm)

Is your husband nearing hospice time? I'm starting to get ready for that move for my Mom. Thinking of you. geewiz

Hi jeannegibbs,

When my Dad was on Hospice, everything was paid for under Medicare and not medicaid, Dad got better and srvices under Medicaid returned. Now my Mom is under Hospice care in the Nursing home, and Hospice is in charge but the Nursing home still provides meals, and meds. Hospice comes in when Mom is having a server panic episode, showers, company, counseling, chaplancy, social worker all under medicare. When I say in charge, I mean Hopice over rules the Nursing Home but I still over rule them all! I am still the POA!

I'm told it will be the same regardless of where the person is, nursing home, home or a hospice home.

I hope this helps, thanks for all the help you have provided us with.
Best wishes!

THIS DEPENDS ON THE TYPE OF WAIVER THAT IS BEING UTILIZED. IF IT IS A TRUE MEDICAID WAIVER, (SUCH AS EDA, CCW, OR OTHER) THERE WILL BE NO CHANGE IN THE SITTER SERVICES PROVIDED. HOSPICE TYPICALLY WILL NOT PROVIDE A NURSING ASSISTANT BECAUSE THAT WOULD DUPLICATE SERVICES YOUR CURRENT PROGRAM PROVIDES. DISCUSS THE OPTION WITH THE CASE MANAGER HANDLING THE SITTER SCHEDULES, KEEPING IN MIND THEY MAY HAVE THEIR OWN OPINION REGARDING HOSPICE CARE. ON THE OTHER HAND, IF YOU HAVE A STATE PROGRAM LIKE LTPCA, HOSPICE CAN NOT BE UTILIZED IN CONJUNCTION WITH THOSE SERVICES. MY BEST ADVICE IS TO FIND OUT ALL YOU CAN BEFORE THE CARE IS NEEDED. HOSPICE IS A WONDERFUL PROGRAM WHEN DONE RIGHT AND CAN BE A GREAT ADDITION TO SERVICES ALREADY BEING UTILIZED. IF YOU FEEL LIKE HOSPICE MAY BE AN OPTION, CONTACT TWO OR MORE OF THE LOCAL AGENCIES AND INTERVIEW AND ASK QUESTIONS OF THEM. THIS WAY, SOME OF THE DECISIONS WILL BE MADE PRIOR TO NEEDING HOSPICE CARE.

I think Hospice care varies with the providers. I never used it because my father never qualified for it.
As far as hoyer lifts, they can have their problems and presume the patient's ability to be placed in the sling properly. Training for caregivers is needed but they can save the caregiver's back and be a safer way to move a patient who can no longer stand or walk.

They are in charge of the patient now as far as you cannot call an ambulance, go to an emergency room. etc. They have to be called and they make those decisions now. I am not saying thats bad, if thats what people want, I just am not ready for that. One example is if my Mom gets an extreme bloody nose all over her bedroom as she has before and throwing up blood clots, I want to call the ambulance, not wait for a call back from hospice. They also take over the ordering of medications and change some if they feel fit. Hope this helps explain, I wish they worked out for me, it was a horrible 2 weeks for me of people calling and coming and I never got the help I desperately needed.

PCA = personal care assistant.
Elderly Waiver = component of Medicaid that supports recipient in his or her home, instead of in a nursing home. For example, this program paid for Adult Health Day Program, and when Hubby's ability to attend that declined, now pay for a PCA. The total cost cannot exceed what it would cost to place the recipient in a nursing home.