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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!

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Hi DrCarol,
I was a hospice nurse in the latter part of my nursing career. Yes, the criteria is that a patient has 6 months to live (but no one can REALLY say when a person’s time has come.)
You mom would qualify due to her medical conditions and her age. No government agency would argue with her going on hospice and I’m sure she’ll be approved. It is a free service.

Check out the ratings for the hospices in your area (yelp, word of mouth, hospital social worker’s opinion, google rating, etc.) and pick the highest rated one.

The services provided by hospice are a hospital bed, suction machine, diapers and wipes, comfort meds, doctor checks, nurse checks (vitals, pain assessment, etc.) , home health aide (bathing), chaplain, music therapist, etc.

Please understand that by signing up for hospice you agree to have your mom’s care handled by hospice. The only time she would go to the hospital would be for “comfort care” NOT treatment of her conditions. If she would be admitted to the hospital, hospice would be stopped until she was back at home or the facility. She would need to be signed up again.

Make sure you read what is offered and discuss everything with a nurse or social worker employed by the hospice you choose.

I have seen patients in hospice for a year or more. I’ve also seen patients “graduate” off hospice and get better.

Hospice can be a great support but you need to read the fine print and understand what you are signing her up for. You can cancel hospice at any time or change to another one.

Good luck.
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Takincare Aug 16, 2019
Great answer! You are/were what I think of as one of Gods special angels, thank you for your work with hospice.
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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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DrCarol56 Aug 17, 2019
Thank you! This sounds like Mom. She could use that extra care.
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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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DrCarol56 Aug 17, 2019
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 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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RayLinStephens Aug 19, 2019
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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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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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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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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cindic0911 Aug 19, 2019
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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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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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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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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