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There seems to be gallons of ink on here about the horrors of hospice. I fully respect all those people who have shared these experiences. It's a valid discussion and I don't doubt for one second the validity of these experiences, nor am I interested in starting some sort of competition. However just as we need to hear the negative should also talk about the positive.

I've been volunteering with a non profit hospice for a few months. I don't claim to be any kind of expert as I am fairly new to the work and my experience is limited. My impression so far of this particular organization is very good. I've heard that the for profit companies doing hospice is Not so good but that is purely anecdotal evidence. So, let's talk......

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I am glad you asked this...or that I found it. My mother in law had hospice services fro two different agencies. They might have both been the same but one definitely stood out as far as keeping the family advised. I was so impressed and now can suggest to those needing hospice that they are not all the same. We so appreciated the quick phone call to let us know that things were going well ...or not as the case might be. I received calls from the chaplain,. the nurse, the assistant...whoever stopped in that week. I have a friend who is a continuing care co-ordinator and a nurse and she would not recommend her own hospitals hospice...so , yes there is a difference. Admire that fact that you have become involved in this path.
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Windy, I think it's Awesome that you volunteer with Hospice! This is something that I would Love to do in the future!
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I think the most helpful act they did for us was to let us know that my sister would be dying that night. I could get together the family I needed and we planned to spend the night with her, so that we were there when it happened. That meant a lot to us; otherwise we might have felt that she was alone, although at that point we were taking shifts being with her.
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I had a very positive experience with hospice when my sister, age 50, passed from cancer. They were wonderful. They gave her wonderful pain relief, giving us a chance to say goodbye with her not in pain. They took wonderful care of her, allowing me to take a breath and be there for her. And, everyone was on the same page. There weren't huddles of different doctors coming in every 15 minutes with different diagnoses and treatment options. My sister didn't want any treatment, and her wishes were carried out. She passed pain-free and with dignity.
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Oh, I totally understand. I'm not trying to guilt trip here. I'm not a hands on, full time caregiver. I have time for a little volunteering. I know for many caregivers it's hard to find the time just to deal with matters at hand.
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Windy - if I wasn't up to my neck in Dad & Dog & Husband & Work, I'd volunteer. It makes all the difference in the world.
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Pfontes, I've been volunteering for over a year. Most anyone can do it and hospice organizations are always looking for more help. Thanks for sharing your experience. This is typical of my observations of the organization I work with.
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Mom got moved to the Hospice wing of the hospital when it was apparent that she was terminal. In a regular bed/floor for the first 3 days of her stay, it was AWFUL. They "bagged" her hands so she couldn't touch her IV lines, they didn't check her often (so she didn't get her diaper changed), and the nurses acted like I was asking them to deliver the moon when I asked for some of those little mouth sponges to wet her lips. The other thing I noticed is the lack of warmth they projected. They seemed to treat Mom like she was just a lump on the bed - I don't think they really spoke directly to her.

When they moved her to the Hospice floor - it was a totally different experience. The every staff member was kind, warm and comforting. My sister is a CNA (been one for 30+ years) and they told us that we could take care of Mom as much or as little as we want - they supported us. They checked her medicine & vitals and kept us abreast of where they thought she was - we changed her diapers, kept her lips & mouth moist and even bathed her & changed her into her own clean nightgown. My sister & I held her hands through out the nights from both sides of the bed - no "mittens." Even though Mom was in and out of consciousness, they spoke directly to her - told her what they were doing, asked her questions (even if she didn't answer) - they were just KIND. The family was taken aside privately early on & we discussed what was going on and what our preferences were. They gave us a chance to speak openly and shed a few tears away from Mom so we could continue to be calm & peaceful at her bedside. A Hospice worker or two dropped by over the 2 days we were there to talk with us & make sure we had everything we needed.

When Mom took her last breath - the nurses came & did what they needed to do. They closed the room & gave us time alone with Mom. They made the proper notifications - I don't know how we as the family would have known what to do. We had the funeral director at the hospital with us within the hour. Hospice followed up a number of times with Dad - it's been almost a year & he got a card the other day. Nice that they think of us.

So windy.....if you're volunteering for Hospice - God's Speed, my friend. I think everybody should be treated with caring and dignity at the end and a good Hospice provides that.
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Stacey, beautifully, emotionally yet very helpfully stated. I'm glad that their assistance helped you through the difficult times.

My own experience with hospice was very, very brief, but we all relied on them so much for guidance as to what was happening and what to expect.
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Hospice not only took care of my mother but, took care of my sister and me. They are angels.
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Thanks Windy, I have a fantastic family! Its too bad our parents died so young at 74 and 75 though! My husband's family, not so much! His 2 siblings dumped the caregiving onto my husband and me, leaving feelings of anger and burn out symptoms currently for the both of us, and difficult decisions ahead for the care of his Dad. I wish this weren't true, but it is, and we'll deal with it the best way we can! But Hospice can't be beat, in my eye's and you shouldn't wait to long before in listing their services! My FIL has Mantle Cell Lymphoma, currently in a Wait and Watch status, but the Dr's feel that it's likely to return at some point, so I've got Hospice on my radar if this should come to be.
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Thanks for sharing your story Stacy. It sounds like you have a nice family. You are very fortunate in that respect.
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Our Mom was on Hospice in my sisters home for 5 months. The Hospice team was phenomenal! At the end, our Hospice Nurse, recommend that our Mom be moved to an inpatient Hospice Hospital, as she could tell that our Mom was having some specific changes to her mental as well as physical status. She also felt that my sister would do better if Mom did not die in her home, as she had several small Grandchildren who visited the house very often, and this arrangement would be best for the family. The Hospice Hospital was a gorgeous facility, with fantastic employees who doted on our Mom for the remaining 8 days of her life. Being one of 6 kids, and all of our extensive family, our Mom had a big private room, which accommodated one of us staying each night with her, so that she was never alone. Our Mom was actively dying, subtle changes our Nurse was able to see, but being so emotionally emersed in her care, we did not. Within 3 days, Mom was in and out of consciousness, and the last 5 days, she was completely unconscious, only somewhat waking up the morning she passed, enough to get us all down there to say our goodbyes. I couldn't say enough nice things about the way in which our Hospice treated our Mom and our family. They treated her with respect, kindness and dignity. They will forever be Angels in my eyes.
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My mother was in a Hospice facility for 2 weeks prior to her death. The people at Hospice are the most caring individuals I have ever met. My experience was wonderful. The facility was beautiful, peaceful and serene.
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if youre a woman caregiver , hospice will probably treat you like an angel . if youre a male carer its going to be an uphill battle . if youre a male and abrasive its going to be a battle that will make the huertgen forest war seem like sunday school picnic ..
just sayin ..
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I have had two family members in hospice. I was glad to have someone to help me with that journey. It is not easy to know what to do when a loved one is sent home and nothing else can be done. My biggest fear was that they would be in pain and I couldn't fix it. I was able to call someone 24/7 to ask questions and the nurse came to check in every day until they passed. They were kind and supportive to our family as well. I would not want to take this on without guidance, its a very scary and emotional time.
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Thank you all for responding. I just did some visits today. It's always quite humbling.

Maybe some folks who are in need of hospice will see this thread. The stories folks have shared will be very helpful.
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My only disappointment was that they couldn't get involved earlier. My Mother was only with hospice from April 7th to April 19th when she passed. She went very fast! They were wonderful ! ! !
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Katiekat your are so right. I had my mom in rehab for a broken wrist, after 4 weeks we were told mom needed surgery ( mom greatly declined mentally in these 4 weeks). Took her to a major hospital for surgery and back to rehab later the same day. Doc said if one pain pill doesn't work give mom 2, she will probably need it after anesthesia wears off. Within an hour of getting out of ambulance mom was screMing in pain (mom was not a screamer). The nurse would not give the extra pill because the bottle only said one pill nor contact a doctor. Finally after I told her to call an ambulance, a doctor appeared and mom was given the second pill. The next morning I took mom home. That was the point that i vowed to keep mom home where I could be the one to decide if she was in pain or not. It was an experience that I never want to repeat and a lesson I learned about the label matching the verbal instructions of the doctor.
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Thanks for sharing your story Flyer. The end of life can be be very hard to predict but the really experienced hospice folks are very good. It can be such a comfort to families to have this expertise available.
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I was quite pleased with the Hospice group that we used for my Mom's [98] care while she was at the long-term-care facility. It was a secure feeling knowing there were extra eyes/ears overlooking her care.

And I was amazed when a Hospice Nurse came in when Mom wasn't responding to us, that Mom had probably 24-48 hours left, and sure enough she was right. Thus I was able to stay all day/night at the facility until Mom passed, I just didn't want her to be alone.
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I cared for my father the last 2 yrs of his life. We were never real close. The last7-8 mons were hard for me. The hospice crew was my lifeline.They were compassionate and truthful. They helped me accept my task and understand that death has stages.we have remained close, two years and counting. I suggest if the nurse,social worker, bath aid, and caregiver all get along you should be hands. Ours were a blessing.
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From what I have read in this thread as well as the long one, the majority of the responders had a positive experience with HOME hospice. With residential hospice facilities, it is a different story. At home, YOU are in charge of the patient's care. In a facilty, the nurses are in charge. Consider that when making your choice.
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I found a wonderful doctor for my mother who only treated the homebound. To say the least, she was a lifesaver! We had the pleasure of her treatment for 3 years. I found her thru a nurse from a hime health care group that had been treating my dad at the time. She took over renewing meds for all doctors mom saw and even gave her the cortisone shits for her knees. She spoke with each and everyone if moms doctors and would not hesitate to call them. My mom sounded contested to me do she sent a portable xray tech over to the house. Just like hospice, not having to run all over for doc appts was truly a blessing. When mom was ready to be placed on hospuce, she still continued to oversee her care. She told myself and hospuce to call her anytime with any questions. True to her words, when moms mirphine had to be increased at 2am, it was done in a matter if minutes and she always asked to speak to me after each call. This is what I loved most about hospuce, you could call at any hour of the day and no question was an imposition no matter how trivial. Thinking of my mom a lot tonight and the portable xray reminded me of this. Merry Christmas and God Bless. Our angels are looking down upon us! 😇
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Mthr had cancer surgery and refused chemo, and her dementia we hoped had just been from hypoxia got worse. Hospice came on board after 2 years of her getting worse and worse with what might also be ALZ. She was losing weight too and her belly over her cancer scar is sensitive though she won't admit it. The week I signed hospice papers, she broke her arm and they sent out a mobile x-ray. No more ER Visits! hooray!

She has gained weight (well, now edema too), gotten cleaner with a daily aide, and seems so much better now that she has attention. Unfortunately, she now has fluid in her lungs, but hospice caught that early and she can sleep well at night with the meds the prescribed for her. She is slipping away but hospice is making this easier for us all.
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My mother is now receiving hospice from Connecticut Hospice, the first hospice in the USA. They are a non-profit and are wonderful. If something is needed it happens fast! I am feeling confident that I can rely on them to have my mother's (and to a cettain degree my) best intetests in mind.
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My MIL died in NH under Hospice Care.. It was just the relief our family needed.. There was always a volunteer there just sitting there keeping her and us company.. It was sooo comforting to have them there... As MIL end near she quietly slipped away so we could have our final moments with MIL..

I would not hesitate to have them involved if needed again..
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Hospice was wonderful. They helped and went out of their way to help. I'm not coping very well but they done great and handled everything well.
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During my Stepdad's last hospital stay in 2010 he decided to stop Chemo and signed himself up for Hospice. My Mom's Dementia had started and she could not be his caregiver with Hospice at home so he asked me. I agreed. He was discharged from hospital and within an hour of us arriving home Hospice showed up with a bed and all medical equipment. Hospice Social Worker arrived with papers and "Book". Nurse arrived with Meds. When everyone left my Stepdad asked who was going to sit with him and attend to his needs. I told him that would be me. He seemed to think Hospice would be in his home 24/7. Anyway...after the first few embarrasing moments we settled in. The difficult part was having my Mom the Dementia patient in the home as well. You can imagine. The aides came 3 times a week to bath him and change sheets etc. The Nurses brought Meds, were available 24/7 by phone and came to house anytime I basically needed them. The last night my Stepdad was agitated and refused meds. Nurse came and coached me through it. She told me to sit and talk to him and ask what was worrying him that sometimes that causes the agitation and patients hang on longer than they should. She left. I talked to Stepdad. He told me all he was worried about and I assured him I would take care of everything. He settled down, rested without meds and passed away a couple hours later. Fastforward to March 2015. Mom in nursing home. Got Hospice on board. Extra hands, help, and eyes at nursing home. Hospice was in 3 times a week to bathe her. Nurses in at least once a week and called me after each visit with their report. Mom was on Hospice 9 months and passed away in October. Both of my experiences were wonderful. I was given a folder "Book" to read concerning the transition that was mentioned in above post. I did read the "Book" and found it very helpful preparing myself for what was to happen and what I was going to be a part of.
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GardenArtist You are very welcome :-)
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