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My mom has congestive heart failure and so some days she is fine and other days she is quite weak and frail. When she is OK she wants to live independently and was recently passed through a big evaluation to drive. When she is weak and frail, she does not drive, she should have someone with her all that time to cook and clean and take good care of her. She is eating less, losing weight and the weak times are more frequent. We are evaluating assisted living facilities and interviewing for additional help in the home, but when I called a care manager, they charged us nearly $300 to sit in the living room and tell us nothing that we didn't already know.

So, my next step is to understand hospice... I've checked on line, but I'd appreciate hearing examples from your experience about what happens if you call hospice early, when all is well, but slowly going down hill. Thank you in advance.

Your stories and experiences have been very helpful. Now I'm going to call hospice at mom's hospital... to hear what they have to say, and I'm looking forward to your advice about the right questions to ask and if this is too early or the right time.

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Sooozi - you are so welcome, so glad if something I share is helpful to you or to anyone else. And to ruralwannabe, yes, you can switch hospice service providers if dissatisfied, just as if you were using a home health services company, you could switch from one home health provider company to another if dissatisfied. Actually, hospice providers could be considered home health care providers with special expertise in palliative (comfort) care and end-of-life care. When the patient's "home" is in an ALF or LTC/SNF, then hospice becomes complementary to what is being provided by the ALF or LTC staff. Medicare is willing to pay for this extra care because with hospice services the patient is much less likely to be admitted to a med/surg hospital unnecessarily....The patient and family get better care and the cost to Medicare is less than if the pt. goes to the med/surg hospital as they decline. The hospice team is like several extra sets of eyes/ears/hands - and oh, by the way, those eyes/ears/hands are (theoretically at least) VERY WELL TRAINED to provide specialized care for those at the end of life (which may or may not be true of a facility staff). Again, there is a great variation in the quality of care provided by different hospice care providers/teams, regardless of whether or not they are for-profit or non-profit. Where I live, there is only one GI-NORMOUS hospice service provider and it's all very politically convoluted and somehow I think maybe it would be better if there were more than one hospice service provider in our county, but that's out of my hands, of course...Hope some of this makes sense and is helpful. Blessings to all...
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Reading about hospice being the liaison between the LTC facility and the family is an important moment for me, but also I fear to believe it. I expected the LTC facility to be the one - actually she was subacute, still is, so even more, we expected to get medical reports and contact and instead, we get casual comments from the nurses, like, by the way, she is back on pureed foods now, which was a big setback for her (she has difficulty swallowing due to paralysis from stroke). So to hope for better from them, well, maybe it would be true, since that is all they really do. Can we switch hospice providers midstream if they aren't holding up their end of the bargain? There ARE several in our area.
By the way, this is all VERY useful information, thank you so much you wonderful caring folks!!!
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Dear Graceterry, Thank you for taking the time to provide the information and perspectives you shared above on hospice care. It is very helpful to me and I really appreciate it. For me this is a new road and unfamiliar territory and your shared experience helps me to know what is ahead of us. Thank you very kindly. Sooozi
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MOST hospice patients are cared for in the patient's home by a team of professionals (nurses, CNA's, social workers, chaplains) who visit the patient at home (either their private home or their ALF or nursing home/SNF) on a regular basis to provide monitoring and comfort care. The term "hospice" is NOT a place but a philosophy of care. To me, the philosophy can be summed up by saying something like, No one will live forever, no matter what medical care is provided. After a certain point in a person's life, perhaps the most loving and most humane thing to do may be to discontinue any efforts to prolong the person's suffering and instead provide comfort and support to the patient and family and allow for a pain-free and timely death, "timely" meaning at a time that the patient's body/mind/spirit decides is the right time without being forced artificially to remain in a state of death imminence.... Of course, the patient, the family, and the doctor decide when it is time to switch from a "curative" medical plan to a "palliative" or comfort plan, if ever. I have known of situations where cancer patients received chemo or radiation on the day that they died. To me, this is cruel and unconscionable , but others disagree (obviously) and have a right to their differing opinions, of course. Our health care delivery system allows for all kinds of profit-driven abuse. My husband has strict instructions from me if the situation should ever arise, NO HEROIC MEASURES, NO FEEDING TUBES, etc. Of course, each patient and family must decide when or if ever to discontinue curative measures. Anyway, "hospice" means a philosophy of care, not a place. Sometimes, if a patient's pain management needs or other needs cannot be met at home (or in their ALF or SNF), the patient may go to a "residential hospice house," where they stay 24/7 until stabilized and can return home or until they die. Sometimes that's the best option for the patient and family. Hospice patients typically get much better care, in my opinion, when they are near the end of life than they would at a med/surg hospital and the family surely does. Whether the hospice care provider is for-profit or non-profit, there is a wide variation in the quality of care provided by hospice teams, just as one would find a wide variation in the quality of care provided in a med/surg hospital, but I think generally people at the end of life and their families are more satisfied with care provided by hospice teams. Hope this has been helpful to someone. If you are wondering, I was once a hospice social worker/bereavement counselor and am still an active medical social worker/grief educator/grief support specialist. Blessings to all -
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I wonder if hospice is more likely done at home or elsewhere. My mom's GP recommended 'bringing her home to hospice" almost immediately when she had her stroke, but without 24/7 care, can she really be comfortable? Can anyone really be ok with having your children 'change your diaper'? and can we do it as well as a professional, and is she better off away from the stresses and tensions of home? (I realize I have a preoccupation with how does one handle toilet / diaper issues, and I am not a shy or squeamish person.)
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Thank you all for sharing your stories and for answering this question. It is so helpful to hear the whole range of experiences. My mom has gone from needing to be in the hospital to currently quite healthy. In between she had a bad cold that really was a huge struggle for her, but she is better now. I will call hospice to establish a connection now while things are going well, because at some time in the future I realize we will very much appreciate the help and guidance they can provide. Just want to express my appreciation for all those who wrote here and shared your stories. For me this journey is a big mystery and my first time with elder care, so hearing what you have experienced is very helpful to me. Thank you!
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I called hospice with a similar situation. I really didn't think mom would qualify, but the heart issues got her approved. She also has alzheimer's but that diagnosis was not enough to get her qualified because the disease is not advanced enough yet. My mom has had her heart diagnosis for decades. So she could live a long time still with it and may be able to stay on hospice. They said they had one patient for seven years. I'm sure that is the exception, but don't let your non-clinical opinion (like I did) keep you from calling them for an evaluation.

I have to say, I wish I had called them sooner. Not only do they send a nurse twice a week, but she receives 3 showers a week. The nursing has been critical. The best part is that frequently monitoring allowed her meds to be adjusted to what I consider an optimal level. Her blood pressure is under control now, They had to make several changes and manage the side effects but eventually, it really helped. My biggest concern is that after the initial 3 month period is up, she won't qualify clinically anymore. I'll be able to call them back when she declines, but it would be a mixed blessing if she was well enough not to need them.

The other biggest big benefit is the coordination the provide between her doctor and the assisted living facility where she lives. Hospice seems to take her care much more seriously and will let the ALF know when their care is not up to par. It helps me out a lot, so I don't feel like I'm constantly complaining. Her facility is very good, but CNA's everywhere seem to be too easily manipulated. RN supervision is needed.

Lastly, I can call them anytime I need clarification or advice on mom's condition or changes in her condition. Being able to discuss my concerns so frequently, has really helped me help mom. Just last week I had to ask for a social worker visit. After that mom's condition was discussed at the company's weekly meeting and her CNA visits were increased.

The terminal diagnosis is required, of course, but the six month issue is not. If your doctor cooperates it will make things easier but hospice can do their evaluation without him, too. These are usually for profit companies, so they Want your business and will do everything they can to get you approved (legally).
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Soozi—
First of all you should be commended on both your courage & your intuition! I launched a hospice company as a marketeer & subsequently became a hospice volunteer—LEARNED A LOT! It is my recollection that one qualifies for hospice if 1. it is deemed that their life expectancy is 6 months or less and/or they are 'terminal', 2. one is prepared to forego 'life saving' measures/treatment [ex: chemo, etc…], 3. they are released by their doctor to do so [THIS CAN BE TRICKY!!! Some doc's cite their 'oath', others do not want to 'lose a patient'—consult w/a social worker re: ALL OF THE ABOVE!
What I would like to share that making the patient comfortable [palliative care] is top priority and OFTEN patients live significantly longer than expected because the care is sooooooo patient-focused, experiencing significantly less discomfort & I am often told, greater quality of life. Make CERTAIN that your advanced directives are in place & you must of course discuss this w/your mother since she is lucid. PLEASE NOTE: If your mother improves greatly you can always remove her from hospice & reinstate life-saving measures and visa versa. Hope this helps—my thoughts are w/you! Fi
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I too am now dealing with Hospice for the 2nd time. Two years ago for my Dad who got better and now for my Mom. I am so happy to have Hospice in our lives. My Parents are in Nursing Home Care,but Mom's health requires extra help. She has dementia, diabeties, blindness due to macula degeneration, neuropathy and now anxiety episodes, lots of confusion. Redirecting her is next to impossible and she is always moving and trying to get up...then falling. It's pretty hard and sad but the decision for Hospice came when I said no more hospital visits, at one time Mom would insist that she had some new ailment and demand to go to the hospital "to get checked out", well there would be nothing more or different than what she already had but the night time hospital stay would become a night mare with her sundowning. Over a short period of time, 3 months my Mom has greatly declined. She went from staggered walking with her walker to a wheelchair to now bed bound. I beleive hospice was called at the right time. They will come out and evaluate to see if your Mom is a good candidate for Hospice.
May you get the help you need and good for you for seeking help.
Best wishes
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I have had to deal with hospice twice now, once with my mom and now with my dad. Hospice doesn't have to be a death sentence like a lot of people think it is. It is about the quality of life they have left. The nurses take care of my dad, makes sure his Dr. is informed on what is going on.

Sometimes the Dr. can help you with that decision, where, when and who will help. You are doing the best you can for your mom to get her the help she needs for the quality of life she has left. Best wishes.
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It is one of the best things you can do when you call a hospice to help you determine a "plan" and begin having conversations about end of life. So many people are afraid to have the conversation and as someone else stated, it's often too little help, too late. I have worked with hospice for over 15 years and have never heard anyone say that they think they started too soon! Most often, then end up saying "I wish I had"...had the conversation, asked for an evaluation, started planning for end of life sooner. Search The Conversation Project and see if the tools and info there might be helpful. Hospices are always willing to do an evaluation and help you get started. Many organizations also have Palliative Care programs that help bridge the time before hospice. Best wishes and thank you for advocating for the best end of life care for your mom and great support for the family.
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We had 2 eval's before Mother was approved for hospice. They told me Medicare's rules are dementia (says 6 words or less per day) or adult failure to thrive (loss of 15% body weight). Also, breathing conditions like COPD or CHF help to qualify for hospice. Her regular internist is the prescribing doc and just like the above comments, they have been wonderful. All necessary equipment, some meds provided by them, pads or adult diapers, hygiene products, aides for bathing, regular nurse visits, etc. They will tell you they are PALLATIVE care. No life-saving heroics, but will contact the doc when infection or pain or whatever is evident. I understood that in 60 days my mom will be re-evaluated and granted another 60 days if she has shown no improvement. They also said that they would let me know if they thought Mom's health was improving and she would have to be dismissed. I have NO complaints about hospice and think they are wonderful, gifted people who do an invaluable service to people who are going through what we all are struggling with in our families.
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It's never too early but it's often too late. When you call the hospice admissions department, they can send someone to do a "no-obligation, no cost" assessment as to whether or not the patient is appropriate for hospice care. If the patient meets the criteria so that services can be provided and Medicare will reimburse them 100%, then it DOESN'T mean that the patient has six months to die or gets "kicked off" of hospice, as some people erroneously believe. It means that hospice will do everything possible with its multidisciplinary team (nurses, CNA's, social workers, chaplains, doctor...) to insure that your mother and YOU get appropriate "whole person" care. Please don't wait, go ahead and call or at the very least talk to your doctor and ask the doctor if your mom might be appropriate for hospice care....but don't necessarily take your doctor's word for it. If the doctor says "no," call hospice directly to get a "second opinion." Many doctors don't know the facts about hospice care. Blessings to you and to your very fortunate mother, she is very fortunate to have you as her daughter. Big hug, G~
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We always listened to the Doctors and our gut feelings when we called in Hospice. We have had to do so 3 times within the last 2 years for failing parents. It's never an easy thing to do. Within the span of 3 months we've had to do it twice. The people who work in hospice are very special individuals that can answer all your questions and attend to your concerns. They'll monitor your Mom and make suggestions for keeping her comfortable. Our biggest concern was that our parents were comfortable and didn't suffer. Hospice has the ablility to assist you in that aspect. I'm not sure by what you explain, that your Mom is ready for Hospice, palliative care may be another area you would consider researching. Best of luck to you and whenever in question feel free to post your questions and most of all take care of yourself.
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This is my second experiance with Hospice... the first time was awesome, all the things Kuli described, this time has been a little more rocky getting set up, but so far things are more settled....But M is very satisfied,as we kept some of the miscommunication from her.. and she loves her bath aide... this girl is soo gentle, and her voice is soft and reassuring....
Hospice was called in for M when her Dr. told her she could not recieve any more blood transfusions... she has had MDS for the past 9 years... they gave her a life expextancy of 4 years and she beat that by 5, so she is a fighter... but they are there for everyone, including the paid caregivers...all we have to do is call... and Hospice can be called in at most any time that there is an indication end of life is near... that may even mean months, weeks or days... depends on you and your needs... so my prayers are with you... it does make it more bearable to have such loving and understanding people helping with this stage.... sending you lots of hugs...
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My dad also had CHF among other problems. We called in hospice when his heart function had decreased again - ejection fraction went from 45% to 35% - and when we had him at his "dry weight" by adjusting the diuretics, his kidneys started failing. That did not mean that we just gave up and stopped all of his treatments. Quite the contrary, he remained on all of his meds until 6 days before he died. The hospice nurse would let me know when she thought he might need an extra dose of diuretics so we could keep him at home and keep him comfortable. He didn't want to go to the hospital anymore. We admitted him in June of last year and he passed on October 26, 2011. He looked forward to the aide that helped him bathe twice a week. The nurse came once or twice a week. A social worker came every 2 or 3 weeks. A chaplain came a couple of times a month. I think all of them helped him to accept and embrace that he was able to stay in his home and would be kept comfortable all the way through. The hospice nurse was wonderful the day he died. She came as soon as I called and took care of his comfort so we, the family, could focus on supporting him. I wholeheartedly recommend hospice. We had a great experience. They were there not only for my dad but also for us. Good luck, Kuli
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Thank you for your question Sooozi,

You’re fellow caregivers will likely respond with their personal experiences with hospice very soon.

In the meantime, here are some articles about hospice care that might help:

When is It Time to Call Hospice?
https://www.agingcare.com/110692

A Checklist for Finding the Right Hospice Program
https://www.agingcare.com/121741

Why Caregivers Shouldn’t Feel Guilty About Calling Hospice
https://www.agingcare.com/139072


--Anne-Marie, AgingCare.com
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