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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 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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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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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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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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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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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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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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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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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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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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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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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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Hospice not only took care of my mother but, took care of my sister and me. They are angels.
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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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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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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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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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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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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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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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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 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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