My Mom has been on hospice care for over 2 yrs. I thought it was only if you have 6 mos. to live?

My aunt was in hospice care at home for ten years with dementia.

Yes, it is called home hospice. My late husband was under home hospice care for more than a year before he was admitted to a nursing home, where he continued to be under hospice care until the end of his life. At home he received medical care from a hospice nurse and bathing care from a hospice aide. A hospice doctor visited monthly to determine whether my husband was still eligible for hospice care. I highly recommend hospice care for the benefit of the patient and family members.

Can I start hospice care at home

Hi Lovingmom,
So sorry to hear about your mother. Alzheimer’s is such a challenge, it’s good you are thinking of planning ahead. It is quite likely that she will eventually be just bed bound and sleeping more and more until one day she doesn’t awake. In which case you may need nothing more.
Important question number one. Did your mom, while of sound mind, create Advanced Directives giving guidance as to what she would prefer? If not, did she ever talk about whether or not she would want heroic measures *even* if she were terminal? If she did not, you are faced with the task of deciding what she may have wanted and what you feel is appropriate. Tough question number two: how do you want life to end?

The decision point here would come if her Alzheimer’s takes the course where she eventually stops eating, or eats so little she is wasting, or can no longer drink water. At that point the body has run its course and is beginning to enter the dying phase. Many people, facilities, and religions are uncomfortable with this and want to institute tube feeding and forced hydration at this point, regardless of the state of the patient’s consciousness. The tough question here is quality of life. Would she want to have lived like this? If not, it is time for a hospice consult.
What hospice will do is give her medications to keep her comfortable and allow the body to take its course. Usually death is no more than a few days to a few weeks off (if the assessment is correct). At the very end some will argue that it is cruel to “withhold” water, however, to inject fluids when the body is no longer capable of pumping them out is essentially forcing the person to drown. An MD or experienced hospice RN should assess to see if this is indeed where the patient is at.
I hope this gives you some starting points. Peace to you and your mom.

Christine--
You need to provide more information. A 72 yo alcoholic who can....still care for themselves? Lives alone? Has no real health problems besides the alcoholism? You can't just snatch somebody and place them in Hospice care, they have to pass some pre-testing. Being an alcoholic, placed into Hospice? if they are still actively drinking? Probably not, because Hospice is pain meds and end of life care--that isn't going to work with a load of booze on board.

Smikulick--I am sorry for what you are going through. Yes, having a loved one in Hospice care at home does make for a lot of work for the caregiver. I am sorry yet grateful that when we placed daddy in hospice, he no longer could get out of bed or walk at all. I can't imagine if he had tried to do so, he was a big man and I personally would have had to call paramedics to help me.

As far as the hospice nurses not catching the UTI--well, I don't know. Ours did a stellar job with daddy, testing his blood and urine each time they came. UTI's are common in patients with catheters. Also, the blood tests would reveal any infections, etc. Maybe Hospice isn't the best course for you if mother is still ambulatory? Or maybe you need to move her to more intensive care. These problems you mention aren't the fault of anyone..it's the situation, which is very sad. Your mom wants to walk. She's in pain and not aware of her surroundings. This can go on for a long time. Maybe you need to re-evaluate having mom with you? Just a thought. Sounds like more care is needed than you can give.

Hi Lovingmom. I will get back to your question, I'm just a little tight for time at the moment. Probably I will post tomorrow or the next day. Take care.

Can 72 year old total alcoholic be put on hospice?

My 93 yr old mother was on hospice 2 years ago and although the nurses visited and the sent an aid to help her bath the majority of her care was still on me. They put her on pain killers that made her have falling problems, even with her walker. She still wanted to walk to the bathroom during the night, even if the bed rails were up and she had a diaper on. She would try to climb over the railings and call me for help. Then they had me give her anti anxiety medicine that made her even more unstable. After 6 weeks of her crazy behavior and 5 different hospice nurses visiting, I had to call 911 for help at 3am because she was violent and uncontrollable. She had a UTI that all 5 nurses missed. How do those of you that think hospice was so helpful think that? I felt like they made things harder for me. They medicated for pain, but that made her walking very difficult but my head strong mother still wanted to walk. If I settled her in bed at night with the railings up she called and woke me up 4 or 5 times. Hospice was no help to me. Now the dr wants to again put her on hopsice care and I'm afraid it will be the same. They mostly care about pain meds and pain meds make my mother unstable, but they want to fix her pain. No amount of pain meds fix my mother's pain, strong pain meds that hospice has given her just make her sleep and when she's awake she's very unsteady. So they go home and I'm left with someone who needs constant supervision. How is that helpful?

LCSW- What tough questions should we be asking?
My mom is in a nursing home, terminal Alzhheimers, slow decline, I have no idea what I should be asking.

My husband went to a hospice facility which was all they did was hospice We were fortunate to get him as he got 24 hour care. This wouldn't have been the case if he stayed home.

Oh I see you answered this "a freestanding hospice facility". missed that first time and it doesn't let me delete my dumb question., sorry.

Are there hospice facilities separate from nursing home facilities or AL? Or is it just a section of those facilities.

Regarding hospice levels of care there are four and they are as follows:

Routine Home Care
This is the most common level of hospice care. Routine home care includes, but is not limited to, nursing and home health aide services. Patients may receive Routine Hospice Care in their home or what they “call home”—in a long-term care, assisted living, or free standing hospice facility.

Continuous Home Care
Continuous Home Care is provided during periods of crisis in which a patient requires continuous nursing care to achieve palliation or management of acute medical symptoms. This intensive care is provided in the patient’s home or facility where they live. In addition to being visited by the team members, the patient will receive up to 24 hours a day care by a licensed nurse and hospice aide, when on Continuous Home Care.

General Inpatient Care
General Inpatient Care is care for pain control and symptom management that cannot effectively be provided in other settings. It is usually of a short-term nature and can be provided in a hospital, hospice unit or long-term care facility. Compassionate Care Hospice has dedicated inpatient hospice units in some of our programs.

Respite Care
Respite Care is short-term inpatient care provided to the patient when necessary for the purpose of providing a break in caregiving to the patient’s caregiver(s). It is only provided on an occasional basis, for a maximum of five days approximately every 90 days. Respite Care is provided in a hospital, hospice unit or long-term care facility.

Please see my prior posts (2) for more information

When my husband went to a hospice facility Medicare paid for the "inpatent' care (room and board). He was never admitted into the "hospice" longer term care as he died within 4 days. If he had lived and was 'admitted" officially to hospice we would have had to pay room and board...about $125/day that Medicare does not pay. Medicare care does pay for the Hospice nursing staff, etc. but not room and board. If we had stayed at home it would have been free i.e. Medicare pays.

For Senorita: What does hospice care do that a nursing home does not?
Answer: It provides, directs, and coordinates medical care in addition to supportive services such as professional social worker (a person with at least a Masters degree & licensing that addresses the patient and famliy's bio-psycho-social-spiritual needs vs the billing and activity directed "social worker" of a NH), chaplain, CHHA, RN case manager, and physician who directs medical intervention. The nursing home can only take orders from a physician, it cannot direct care. Nursing homes mostly pass out pills and take care of a patient ADLs (activities of daily living). There is a HUGE difference.
For Gropup: IS hospice care free for someone on Medicare.
Answer: Yes. Medicare pays for the entire team of hospice professionals to address the patients needs as well as for all hospice diagnosis medications (e.g. the medication has to be RX'd by the hospice doctor and relevant to the disease the patient is on hospice for).
The hospice provider is reimbursed on a per diem basis at a flat rate regardless of the services used. Some patients require a lot, some don't so the cost of doing business is spread across a population of patients who are served.
Please see my prior post for more information.

Is hospice free for someone on Medicare?

What does hospice care do that the NH did not do? Seems like you shouldn't have to pay as much for the NH if someone else is doing the care.....

Igloo572 --
You have provided valuable information. I hope those who haven't needed it yet, will save it in case they need it later.

Srta- for my moms situation (after a fall @ NH) the hospice provider was one of the maybe 4 different ones that all provided hospice care at ths NH. As this as all in a rush, the one that got mom was selected by the DON ( director of nursing & this is usually the supreme being or power position at a NH). After about 8 weeks, I as mpoa & DPOA for my mom changed the hospice group. As hospice is Medicare, it is self directed so you can choose the provider. took maybe 3 days to do the change over.

Btw Medicare paid about $ 4,200 a mo to this hospice.

You can also intervene and get health conditions to improve while in Hospice by having better disease reversal protocals put into place. The American Medical System doesn't really focus on healing disease at the root cause. It simply treats symptoms. There are many health summits taking place on how to reverse diseases presented by MD's... You just have to look for them.

Good to know, I thought the NH became the hospice provider and was covered. I see it is not.

Senorita --

My husband was under care in a Florida nursing home in 2014 while under hospice care. Under Medicaid, the nursing home received my husband's Social Security benefits. Things may have changed or be different in other states.

igloo--the NH is not the hospice provider?

As far as Medicare & Medicaid for NH costs - for my mom who was in a NH on Medicaid prior to her fall - the hospice benefit was paid by Medicare to the hospice provider & not to the NH. The NH room & board was still bring paid by my moms co-pay of her income & the states Medicaid program.

My husband was on Hospice for nine months. Every two months, he was evaluated to see if he was showing a decline. Yes, he was. God bless all the Hospice people....the social workers, the nurses, the aides. They kept him comfortable as he had UTIs and ear aches and head aches. He got Rx's for the things to make him comfortable. He was taken off all the others...blood pressure, cholesterol and numerous others he didn't need for comfort. His family doctor was no longer involved....a geriatric specialist was and he was a jewel. He died comfortably, without the horrible pain my grandfather went through to die. My husband just stopped breathing. I held his hand. He was home with me and now is home with his family and Jesus. God bless you and give you strength.

I've heard of being on hospice that long. I believe there is no charge for nursing home while in hospice so that is a blessing.

I am a hospice social worker. Hospice is a level of care, provided by many different medical companies, and is dictated by Medicare rules regarding your insurance benefit. To be put on hospice a person must be certified by *two* physicians to be judged terminal within six months. The first and second *certified benefit period* is 90 days. The next period is and all those that follow, are 60 days. During that time decline MUST be demonstrated. It can be renewed as many times as the physician and the hospice *team* have documentation to support *medical necessity* which for hospice shows *evidenced based* decline. If the person does get better (happens a lot) they are discharged and can be readmitted when appropriate. Usually there is a referral back to a primary provider or to home health (a lesser level of care). As someone pointed out if a new condition develops while on hospice, that will certainly be treated. Hospice staff always works toward helping a patient and their family understand choice at end of life and what care may or may not be beneficial given their terminal diagnosis. For example a hospice patient with lung cancer may develop pneumonia and be a DNR, in which case the infection may be allowed to take its course with only comfort treatment thereby allowing the patient a more compassionate and quick end - but only if that is what the patient wants. The rules have changed recently to allow patients to also pursue some care outside of hospice, including that which non-hospice providers view as curative, so there can be competing agendas between providers and more confusion for the patient and family. That fact has muddied the water considerably. I like Luthel27s post - it may have been helpful to point out the sequence as written articulates myth vs fact to be more clear. It used to be possible to keep patients on hospice for years, especially if the insurer was *not* seeking reimbursement from Medicare (I'm thinking for example of HMO members such as Kaiser Permanente back when there one fee covered everything and there were no deductables). That is no longer the case, even young people under Medicare age will be held to Medicare rules. The reason is because there was a period of intense Medicare fraud on the part of some hospice providers and the result was to really tightened up criteria for care and reimbursement on all providers. I will say, there is still the occasional hospice, usually for-profits vs non-profits that will try to keep a patient on that doesn't belong. It isn't that easy to prove someone is terminal especially in cases of slow decline. You don't say what her living situation is or if you have DPOA-HC but if you do, I would insist on speaking with the doctor and the nurse and asking them the tough questions that are worrying you. There should be no problem getting answers if the service is above board. If she is permanently in a nursing home, that would send up red flags for me as the home may be "dumping" care on the hospice and the hospice may be passively benefiting from billing. Many times there are corporate ties that aren't necessarily obvious. In any case, your mom ought to be getting superior care just being on hospice because she will be monitored more closely. I hope this helps.

My mom was on hospice - a totally Medicare benefit - for her last 18 mos in a NH. She fell & shattered a hip from pulling her wheelchair .....& became totally bedfast. The first 90 days was 1 evaluation to start the benefit and thereafter it was every 60 days done by the hospice provider in conjunction with the medical director of the NH. Really as long as they pass the criteria set by Medicare they can keep on Medicare paid hospice. There is no time limit.

Mom had a X-ray done on site at the NH around 4 mos to determine if there was a break related to pain & swelling in 1 foot. It was ok & covered benefit as it was about pain determination & comfort management.

A lot of ladies are really tough old birds. My mom was a tiny, petite old bird with no chronic diseases but just bedfast due to her fall. Those in their 90's are outside the actuarial charts for likely death, so 95 or 105 could be it! Even after years or months in a facility & on hospice, they keep on, keepin' on....Till their body just finally wears down & out. Try to enjoy your time with her. One day she won't be here.

My mother was on Hospice for a year and a half. It was called comfort care. Hospice had to send her to the hospital when she fell and her skin popped open like a ripe tomato. Mother was 96 when she entered the program. They took care of her UTIs and any other problems that came up. I no longer had the ER runs and drug store RX purchases. They provided all her incontenant supplies.

Mother was not rushed to death. She was allowed to pass wrapped in the comfort they supplied. I was allowed to be just the daughter again, and they helped me adjust to being that daughter. It was a year and a half journey while my mother slipped away a little each day.

It was the best decision I ever made as a caregiver. Mother was not in pain and enjoyed the extra attention she received from her Hospice Attendants.

Mom has ongoing pain from 40+ yrs of rheumatoid arthritis, lupus, gout fibromyalgia, osteoarthritis, plus other serious medical conditions...has Alzheimers with vascular component in moderate to severe stages...she is reluctant to try and help herself for many years and therefore is quite debilitated. She can still move around but with difficulty...she has now been referred to Palliative Care...what can I expect ??? Her rheumatologist suggested perhaps if therapy doesn't help since she is so reluctant to do any of it, if stronger meds at a very low dose would ease her overall pain ??? What is all involved with working with Palliative Care since is not for a terminal (tho painful) conditions ??? Just looking for a little info....thanks:)