I am confused about Hospice but I think it's right. I don't see Mom as only having 6 months to live.

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I am confused about Hospice but I think it's right. I don't see Mom as only having 6 months to live.

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This group has helped me in some many of my questions with my 96 year old Mom. From living at home with care during the day in January 2019 to 24/7 care at home to now living at a Memory Care place (that was fast to me!) She is doing ok with her medical problems of CHF and fluid in her legs to go with Dementia (no staging done yet). She refuses her meds from time to time but they are working on that. Other than anxiety issues, she has good days (and bad) but she can eat and take care of her personal needs. The Medical team has just suggested Hospice to begin to provide an extra level of care. I was pretty excited about it until I read that the people who qualify for Hospice usually only have 6 months to live. They told me that they do have people who have been on Hospice 1.5 to even 2 years. I don't see Mom as only having 6 months to live - maybe, maybe not. Anyone have experience with Hospice? I hope it's a good thing - evaluation is tomorrow.

FYI - If you are new to this group - it is the best support I have found. Thank you Aging Care Forum!

Alzheimer's & Dementia Care Decisions Hospice

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DrCarol: You're very welcome. I just saw your August 26 "thank you" post today, September 4.
Lllamalover47

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My mother-in-law lived in a skilled nursing unit for twelve years. (Pennsylvania) When her weight went below her designated weight (determined by the nursing home) we had the choice of feeding tube or hospice. After much consideration, we chose hospice. Her PCP gave her the appropriate diagnosis code and the hospice team came in and took over her care. With the additional care, she gradually gained weight back up to the designated weight and hospice was discontinued. We went through the process four times.

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My 97 yr old mother has been on Hospice for 3 months at her AL facility. Her cardiologist recommended Hospice b/c mom has stage 4 heart and kidney failure and is unlikely to improve as time goes on. She is physically active with a walker, but is a fall risk, and has severe short term memory loss. The goal is to try to keep her out of the hospital, and/or fewer ambulance calls to her facility. Within the last six months her primary doctor and two other specialty doctors were prescribing her meds (adding and subtracting) which caused her to go into distress, resulting in hospital stays for a period of one or two days. Hospice reviewed her meds and took her off two BP meds (fall risk from low blood pressure), and added something for the anxiety/depression (her panic attacks were minicking heart failure). Hospice consists of two ninety-day periods and an unlimited number of sixty-day periods. So far so good. I truly think Hospice will be very beneficial to all concerned.

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Thank you for this detail. We are considering hospice for my 93 year old mom with severe aortic stenosis. Not sure she is ready to discontinue care for BP, thyroid and dementia, but she does not want surgery for her heart, so doctor recommended hospice. Such hard decisions.

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Hospice was great with my dad he passed awhile back from COPD.
My mothers doctor kept telling me it was too soon with her Dementia I went against his wishes and brought them in mom made it 2 months before passing last Saturday Aug 17 2019 I just wish I had brought Hospice in sooner, seems some doctors don't like to lose that payroll cash they're sucking up off the Taxpayers so they tend to leave a caregiver alone and helpless.
The only reason Hospice would discontinue care for a patient is if they have plateaued or gotten better when it comes to mental health it's not always the 6 month death sentence that Hospice is caring for, they were a huge help with both my parents and for that I could never thank them enough.

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My husband died of pancreatic cancer - horrible way to die. He made me promise, and I agree with this 10,000% - that he wanted to die at home, not in some facility - to me that is horribly cruel to a dying patient. So I arranged for Hospice to come to our home and care for him. While Hospice may be wonderful for many people, I hate to say it but they did nothing for my husband. Very sad. I never understood why they did not do more based on their reputation to be so wonderful.

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Yes, you can qualify for Hospice with chronic condition, not necessarily just a life expectancy of 6 months or less. Remember Medicaid is footing the bill. When Medicaid keeps asking for recertifications and questioning why your LO is still on Hospice a year or 2 years in, watch how quickly Hospice "graduates" your LO. It's all about the money. Hospice provided much needed care and was greatly appreciated while my Dad "qualified." I do not want to appear ungrateful. Also, we were given 48 hours notice that he was being kicked out.

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It is actually a Medicare program not Medicaid.

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See https://www.medicare.gov/coverage/hospice-care for more details. I do not see any criteria listed, despite trying multiple ways to search on the Medicare web page. Probably the best source would be PCP or call and ask a hospice.

Some info from the web page:

Hospice care
If you have Medicare Part A (Hospital Insurance) and meet all of these conditions, you can get hospice care:

**Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).
**You accept palliative care (for comfort) instead of care to cure your illness.
**You sign a statement choosing hospice care instead of other Medicare-covered benefits to treat your terminal illness and related conditions.

Things to know
Only your hospice doctor and your regular doctor (if you have one) can certify that you’re terminally ill and have a life expectancy of 6 months or less. After 6 months, you can continue to get hospice care as long as the hospice medical director or hospice doctor recertifies (at a face-to-face meeting) that you’re terminally ill. Hospice care is usually given in your home but may also be covered in a hospice inpatient facility.

NOTE: They will NOT pay the cost of an AL/MC/NH facility.

As others noted, dementia is considered terminal, at some point (but so is life for all of us!) Given your mom's age and that she has dementia, I would think she would qualify, but doctors have to certify and Medicare accept (they do have an appeal process.) Recommend talking to her doctor or a hospice place(s).

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Hospice would be advisable for your LO, but I see that I'm late in responding as your post, DrCarol, just appeared today, August 18.

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Thank you!

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My husband was put on Hospice 2 1/2 years ago. I was told by hospice that my husband qualified for hospice due to the simple fact that he was diagnosed with Lewy Body Dementia and because the disease is not curable. I have found hospice extremely helpful. Hospice covers all the meds necessary for the specific diseases that qualifies them for these services and the meds are delivered to your door step. You will have a nurse assigned to him atleast once a week (more if needed), CNA's that come 3 times a week to bathe them, a Social Worker that also helps set up Respite care, so you can have a break. Anytime the patient isn't feeling well, you just call hospice and a PA will come out to assess them, this saves you from constantly going to the ER or trying to book Dr. appointments.

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This is the perfect forum for me today. My mother is 93, dementia, mood swings, weakness, heart issues, legs swelling, blood clot in leg, etc. Her assisted living facility sent her to the hospital last weekend because leg swelling got worse and BP was low, they found she had a blood loss possibly from blood thinner due to the blood clot. Was in hospital for 4 days, extreme ICU syndrome, confusion, mood swings, the last doctor (she saw 4 different doctors in the hospital) said she absolutely should be in hospice. Was evaluated by hospice and they said she did not qualify. Saturday she had a good but confusing day, Sunday she fell and went back to the hospital. Re-evaluated by hospice, they still say they need a repeated blood loss count before they will accept her. I am at a loss, I live in another state, am scared to death that she is going to fall again and break bones due to the low blood pressure and mysterious blood loss.

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Not so I am a physical therapist worked with hospice patients . There is hospice for only maintenance, if the patient improves that will not qualify until future. It is not a death sentence they work with Parkinson’s, MS, multiple other diseases. Not just end of life. That is a wrong misconception and they provide great care ! Hope all goes well

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I am caring for my husband at home....92 and dementia. He can still dress himself, feed himself, toilet getting "iffy" but still does pretty well. Our doctor said he was not ready for hospice, but I called them and a nurse was here the next day. She was wonderful......so much information and telling me things to watch for and it was very comforting. Now I have him on their radar, ready when I do really need them. Do get in touch with Hospice.

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I LOVE Hospice.
I could not have done what I did for my Husband without the help of Hospice.
I got Education, Support, Supplies, Equipment, I had a Nurse once a week, a CNA twice a week then as he declined the CNA came in 3 times a week. I had the services of a Social Worker, a Chaplain if I wanted or needed them, Volunteers that could come and sit with him while I went to dinner with friends. (I used a Volunteer a few times)
My Husband was on Hospice for 3 years, actually a month or so over 3 years.

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So, in the old days Hospice was new and a good thing that did not make money necessarily. Things have changed. Many agencies discovered there was $$ in providing hospice care. Also residential places have discovered they can reduce their burdens by suggesting hospice gets involved. Generally people enter it with an expectation of a shorter life expectancy, but many will be on longer. Who knows when someone is really going to pass on? Sometimes people go on, go off, and back on again from what I've heard. Don't get hung up on the 6 month thing. A good hospice (and YOU can pick/interview more than one or fire them) will not take your mom on unless it is legitimate. Contact your long term care ombudsman for further info...

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Hi
My experience with a referral to hospice is that the patient must have a diagnosis of a terminal or chronic illness , in which the
patient is declining in fiction, and meets a specific set of Medicare criteria.

Hospice is not curative care it is comfort care Provides in the home or facility.

When my
mothwr was refrred she she had been struggling with COPD for 10 years in and out of hospital, on and off intubation/ respirators, fluid in lungs with CHF developed diabetes during that time as well. The doctors referred to hospice and said she would be gone in a week to 10 days.

She had had a beautiful 9 months with us instead. She never took any Morphine, or Ativan just her oxygen, and regular meds for her COPD and CHF.

She was able to control her symptoms with minimal interventions.

Hospice care can be the best care. Some individuals will continue to decline but more slowly with hospice care. 6 months is just a starting point.

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That is an old notion - you do not have to be at death's door - you only need to be in need of the extra help to be eligible for Hospice.

And Home Health Care is also a Godsend! I don't know how I would have managed without that extra pair of eyes checking on my Dad and later on my DH.

Both had Hospice care; Pop for 5 days, my DH for 3 - and they were greatly appreciated for making both feel so much better.

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I am a Hospice volunteer and want to put your mind at ease. People on hospice care are not always at deaths door. Get with the coordinator and have them explain it fully to you. I have had clients that go off and on hospice several times and live for several years. The patient just has to meet the criteria which includes have a chronic condition. Take the help, you will not regret it.
Best of luck

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Thank you for your awesome reply - you put it better than I could have.
Hospice and Home Health Care are a Godsend for us! My DH was only accepted for his last 3 days, but they made him so much more comfortable those last 3 days.
My father was accepted on Hospice the day he decided to quit dialysis - and they made him feel like a million bucks his last 5 days on earth.
Truly you are Angels Walking!

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Everyone posting is telling of their positive experiences with Hospice (which is as it should be) but I want to add that there is an ugly side to this we hear about much too often on this forum. Unfortunately some Hospice agencies seem to focus too firmly on dying without considering what is best of their patient, even to the point of encouraging families to apply end of life protocols to someone who in reality is easily treated for relatively minor problems. I want to state that I do not believe this is common and I think the vast majority of hospice workers are angels of mercy, but as with anything in life you need to be prepared to speak up if something doesn't seem right.

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Very well said. I am a hospice volunteer and find that most of these situations arise due to the families not listening fully when things are explained to them. This is no fault of theirs, It is a ver difficult situation and hard to be fully present. The end of life protocols are an important part of this process. Some patients quickly decline when their family thinks they have relatively minor health issues. Patients are not placed on hospice if they dont meet the criteria with their health. I have heard it many times from the families, "Dad didnt seem that sick" . My wish is that we as vhospice people communicate better to the families and make sure they are truly listening. Unfortunately we always will encounter people who feel enough wasnt done or it was done wrong because they were not ready to lose their loved one.

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Mom just passed in june she was on hospice for 1 1/2 years. The PC doctor must sign the paper work for hospice to take over care. Mom hospice was excellent she came to the memory care 3 times a week and got baths from a hospice caregiver 3 times a week diapers were supplied by them oxygen and adjustable high/low bed were covered by hospice also
Hospice re evaluates 3 months then 3 month again than 6 months and so on most assisted living and memory care will allow a resident to stay if they are on hospice but if they are discharged you may have to move your loved one to a Nursing home. YES much better care
If for any reason she has to go to the hospital have them call hospice first so she can be discharged quickly otherwise huge bill won't be covered

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Hospice is great they are extremely supportive for both you and your loved one.
Your worst case scenario is after 6 months if there is no decline they will have to remove your mom from the program but rest assured any medical equipment that Hospice deemed necessary for care of your mother Hospice will make sure you won't be left without, everyone is always only a phone call away and you'll have Social Workers on hand to help with any paperwork you may have to deal with.

I couldn't have done it without them with my mother she just passed Saturday Morning at the Hospice House......... My mothers ding-dong doctor kept telling us it wasn't time to get Hospice involved, Remember Hospice takes over for the greedy doctors that are making money for every office visit, you tend to not find doctors very supportive of Hospice in some areas at least not the ones with Mercedes payments......

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So sorry for your loss. Prayers for you and your family. Very well stated about hospice care, thank you for taking the time to reply during your time of bereavement.

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My dad was recently on hospice for a few months and then he is being discharged today as he is no longer declining. Medicare guidelines are quite strict on what and who qualifies for hospice. They have to document constantly in order to show the patient is declining. And yes some stay on it for over a year. No one can predict declines as an absolute. And for the poster that said they try to kill off the person, that is nonsense! I am sad that my dad was discharged because he got such great care, extra eyes on him, and they were a support for me as well. I will miss them. And no I’m not happy my dad hasn’t continued to decline as some of you here will understand.

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Talk to her doctor about whether he thinks she is ready for hospice. You might want to ask her facility why they think it is time. My 95 year old mother with dementia was not understanding her doctor visits, she was falling often and her memory care facility kept sending her to the hospital to be checked every time she fell. The last time she was in the hospital she was biting the nurses because she hated being bothered. I discussed hospice with the doctor, and he said that it can be done with a "no hospitalization" directive. He also discussed when it might be appropriate to take her off some of her medications and when not to give medications. Hospice is comfort care only; with no attempt to fix anything unless there is pain. No more doctor appointments, etc. Just the necessary check ups required by the regulations. My mother seems happier with hospice type care. It has been more than 6 months now. She gets periodic re-evaluations.

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My mom has been on hospice for a year, but requires every 60 day re-evaluation. She IS declining..but rather slowly. Do not think for a second hospice will help with daily care when it comes to a helping hand. They will send over an aide two days a week, but it is unscheduled so you are waiting all day for only 30 minutes of help. It is hardly worth it. They WILL help with supplies (VITAS is the worst--they are for profit, and they really are stingy with supplies to the point you have to buy your own, so at least use a non-profit hospice), renew routine medications, and weekly visit with a nurse (for a few minutes only) and if you need a nurse practitioner to see them at home, you also have that.

Mum had Alzheimer's for 10 years, the last five was severe.

They will help you with supplies and you don't have to take her to doctor appointments. With that respect they are worth their weight in gold. But the family still does 99.5% of the actual physical care. I can't possibly take care of mom without a hospital bed. She is total care. I bought extra things from amazon to help me such as a wedge pillow, which keeps her on her side when I have to clean stooling, or change her diaper which is a LOT. The non-profit hospice supplies me with plenty of diapers and ointments.

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Forget the six months, a lot of people will only have hospice in from that point but they can help and advise from a lot earlier and have fantastic experience at assessing a situation and seeing if additional help can be offered at this time or at some time in the future. They are there so advise and support, not just to help people passing. I am sure you will be pleased to have had a chat and evaluation with them.

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My dad was referred to Home Hospice October 2017. In July 2018, because of a stiff neck, they prescribed him 10 mg Valium on top of approx 200 mg of morphine per day. Daddy was barely conscious for 3 days until we had to step in and pack him up and move hime to my house. We stopped the valium immediately. He continued Hospice Home Care at my house until April 2019. He graduated (they kicked him out) Hospice, just as he developed a pressure ulcer (bedsore). It was extremely difficult to get his doctor to continue to write the medications that he needed for pain and he was now extremely addicted to.

Let's not kid ourselves, we all know the purpose of Hospice. We say he didn't die fast enough. They tried to take him out twice. Don't get me wrong, hospice can be a wonderful thing if the patient is ready to go because the pain is unbearable, but be prepared, the benchmark is 6 months, that's what Hospice as well as insurance is shooting for. If the don't pass in 6 months, you have another set of problems to deal with. Doctors do not like to write pain medicine any more.

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I'm sorry but drug wise there APPEARS to be a fair bit of ignorance in this post probably because there is no reason given for the prescribing of the drugs mentioned, I am struggling to match the drugs and prescribing willingness with the suggested behaviour of hospice and the patient's medical condition and needs.

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Hospice can be wherever the patient lives.
I have heard of live-in hospice facilities but most are run out of an office and the staff travel to the patient.

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My 94yr old mother had the same health issues as yours. She was receiving palliative care for 4 1/2 months before she went on hospice care. Level of care was not that much different. The nurses from those two programs monitored my mom weekly unless there was a special need, then they would come and assess her more often.

Mom's doctor was not agreeable to putting her on hospice as he said it's only for those that have 6 months or less to live. The hospice nurse said that wasn't true. Hospice needs to see a decline in mom's health. That decline happened rapidly as she was on hospice for 6 weeks before she passed away.

She still took most of her necessary medications up until a few days before she died. In all reality she looked good and for the most part was herself. Two days before she died, she started having hallucinations and never came out of them. She was having mini strokes during this time. Her brain was dying.

We managed her symptoms with anti anxiety medication and morphine. We were glad that hospice was there to coach us so that she could have a peaceful death.

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Thank you. I wonder about Mom and mini strokes. We had such a fun visit yesterday and laughed a lot!

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I think that Hospice now can come in for anyone with a terminal illness, which Alzheimer's is. Check with them to make sure that your mom qualifies. And, you are correct as far as other people having Hospice in for people who live longer than 6 months. It is the definition of their disease that determines if Hospice can come in. A disease with no end to it other than death to end it should be the qualification. Other diseases that can be treated with medications, chemo, dialysis, etc., and the patient can continue to live, don't qualify because it is considered non-terminal. Even though we ALL will eventually die.

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Medicare guidelines on dementia are quite strict so just a diagnosis of Alzheimer’s doesn’t qualify. They have basic criteria available on Medicare’s website

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You might consider a palliative care specialist who could help supervise medical needs and quality of life care.

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I do have a Geriatric Nurse Specialist who consults with me.

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Hospice is a great resource. 92 year old MIL has been recieving care thru them since March of last year. She has CHF / afib. They are caring and compassionate. Weekly nursing visit, cna 2x week to assist with showers. Her care team is wonderful and they are very knowledgeable. They are not going to look for a cure, but will help mom live the best life she can the best she can. At this stage of life there isn't very much medically you can do to help our loved ones. Questions I asked myself our last ER trip with MIL are how will this test help her and how will it affect her? What is in HER best interests as opposed to our natural instincts to do whatever needs to be done to "save" them. I'm saying this from the point of IF LO survives anesthesia, would they survive the pain afterwards? Is it for them or ourselves that we are considering this procedure. As the road gets rougher hospice can help alleviate her pain and anxiety. MIL thinks of her care team as family, enjoys seeing them every week. I am also a huge fan of theirs. I have learned much from their wealth of knowledge but have also been given the gift of positive feedback. This is just an added level of care for your mom that can help her a great deal.

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Thank you! This sounds like Mom. She could use that extra care.

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I am confused about Hospice but I think it's right. I don't see Mom as only having 6 months to live.

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