Hospice helped sooo much with my MIL who was an extremely difficult woman. Even talking about how her generation just don’t give up on anything easily even at the end. We appreciated the kindness and comments from the point of view of someone who cares for people at the end of their journey . God bless .

I am a hospice social worker. I appreciate your kind words. Too often our interventions are overlooked. The nursing staff gets all the praise , so thank you for your appreciation and acknowledgement of our contributions to patients and families.

Am wondering why medical people (I am a retired RN myself) sometimes don't reveal to a patient, or perhaps his family, the seriousness or prognosis of a disease.

My brother had become progressively ill, at home, in the care of his wife, for a period of months. I am a 5 hr. drive away and visited a couple of times near the end because I was concerned about him. He seemed glad to see me and complained of feeling "miserable". I asked him many questions about when he saw the Dr. last, what the Dr. told him, what was done for him by the Dr. or the clinic he visited. Never got a definitive answer. Dr. did not give him a diagnosis other than it was not likely cancer (he had had prostate cancer and that was his main concern). Even after having a paracentesis, (draining fluid from his abdomen), which gave him some relief, he denied being given a diagnosis and perhaps did not ask. I suspected cirrhosis of the liver (he had yrs. or regular social drinking... never considered an "alcoholic"). I never mentioned this possibility to him. Was afraid he'd think I was somehow "judging". I've always wondered if he knew or suspected the diagnosis and did not want to acknowledge it, or if he truly did not know. Hospice was called in only 2 days before his death at home. They were wonderful with his wife, but she could have used them much earlier! I truly believed she never knew, never seemed to care about knowing, the cause of his death. And I've never wanted to press the issue.

To this day, however, I've felt he could have used hospice care sooner and wonder why it was not offered. I'm sure he would have accepted it, as would his wife.
What are your thoughts?

I lost my husband to Alzheimer's complications almost 9ne year ago coming up on April 10th. What is described here is exactly what I experienced. I will always be thankful to the personnel there. Whether one knows what hospice is or not, hospice experience is better than a hospital. Afterwards, I was able to come to the realization of just the numerous ways the staff was kind and caring.

They say the hearing is the last sense to go for the seemingly unaware person in the very last hours before death comes...you may not receive an acknowledgement from the dying person, but I am confident they CAN HEAR. Several people who have had near death experiences and lived to recover have talked about out of body awareness. Being in the room above or next to the bed, watching...unhindered by the body because their pain was relieved or controlled. Many have remarked about seeing angels or loved ones who have already died. I am convinced the hospice process is to help ease the suffering of exiting this life and a preparation for the next life. For the departing and those staying. It sounds like you had a good hospice experience. Our family DID NOT.

The hospice team came to our home after my mother was discharged from the hospital. Her doctors at the hospital had told us that her heart was having to work too hard to pump oxygen through her lungs. She still got up and dressed every day but her concentration and ability to focus was deteriorating despite her best efforts. The hospice nurses had suggestions for making her more comfortable. We didn't recognize the signs. We were surprised within a week or two when they told us she probably only had a month and suggested moving her to a hospice facility where she would get 24/7 help. But we knew she wanted to stay in her home. My father was spent caring for her and decided to tell her that day, two days after Mothers' Day. She didn't wait for him. She died before he could make that decision. My regrets were not bringing hospice in sooner and not taking work leave sooner so I could be with her when she passed away. Life is fragile.

Thank you for sharing your experience with your dad in hospice. Unfortunately, too few people know about hospice and the dignity it brings to the individual and family members. Your story is a perfect way to reduce the shroud of secrecy that surrounds hospice.
Tears welled up as I read it because it mirrored the last few hours of my father's life. It reminded me of his importance in my life, even though he died over 30 years ago. Thank you.

Maybe my comments here will seem trite in the scheme of things, but I'm going to risk sharing them anyway. There are a few things I wanted to share with my uncle and my father, but missed these opportunities to give each of them a good laugh.

Some years ago my uncle was telling my father and me about how he got stuck driving behind a truck taking an elephant to a circus, so for several miles his view was basically a gigantic rear end! He had a stroke a couple years later leaving him wheelchair-bound and stuck in his house which he naturally found very frustrating. Sometime afterward I found an article showing how working elephants in Thailand had been trained to use a gigantic toilet, and I regretted that I never got to show him the story and photo I had printed from the internet, which probably would have made his day!

My father and I knew a family who, although they meant well, was always dreaming up "projects" for other people to get involved in. I had thought of a funny poem about this that I set to music, but I never showed it to him because I couldn't think an appropriate last line. Over time my father declined, was in a nursing home and eventually under hospice care until his death. A month or so afterward, I thought of an appropriate last line, and I still wonder how hard he would have laughed if I had been able to show it to him just a few months earlier!

I agree. I was so grateful to have two weeks with my husband when he went to hospice after a stroke that left him unable to swallow. We had agreed that we would not put in a gastric feeding tube, and I think that was harder on me than it was on him--at no time did he appear hungry, just wanted his dry mouth relieved. We did have time to review our life together, the good and the bad, and to be grateful for the years we had. I only hope my own passing is as peaceful.

My dad appeared fine when he saw 2 of his drs at the beginning of the week; by Fri I had him into Urgent Care with what was cellulitis that appeared suddenly. By Tues we followed up with his PCP, lab tests were done and we were back again to his PCP on Fri a.m. His cellulitis had lessened but his weight was still rising; with him being diabetic and stage 4 kidney disease it was all a bad sign; I told his PCP I would really like him to be admitted to the hospital. The PCP agreed; the emergency rm thoroughly checked him out and he was admitted within approx 3 hrs. They did further tests and he appeared comfortable as could be. He had other signs but I attributed it to his cellulitis. However, I did have a gnawing feeling something wasn't right....I stayed with him most of Fri but he was so sleepy. I recvd a phone call early Sat morning and the hospital PCP assigned to Dad suggested a test that would 'go into his heart to check out a valve'...somehow I knew it didn't matter if he had the test or not but I still asked the dr if it could be postponed until I could talk face-to-face with a dr when I went in later that morning. He said it could wait 'no hurry'...instead of napping I went to be with Dad and he brought it up and asked what I thought. I told him what I knew of it and then we asked each other what we thought we should do; Dad said 'ah forget it', and I said 'it wouldn't fix the problem, they just want to poke around' and that was the extent of it!!! He was so matter-of-fact about it but we both had discussed previously several times that he wouldn't have anymore surgeries...his heart had to be fixed in order for his kidneys to be fixed but he was done...I could see that...he was just DONE...I still thought though in the back of my mind that we've done all the dr appts, all the tests, all the medications, all the follow-thru and lifestyle changes and with his age I could see, I just knew, we'd done all we could do for him ; I had seen to it that I got him 5 more years from his onset of illness that we were now at the end of the road and for him to maintain his dignity and pass away in peace with his dignity intact. Kidney dialysis scared him and he didn't want to do it as often as he'd have to and didn't want to start it when offered...he continued to eat, sleep more, talked but slept more and more...soon t.v. was left off, and he didn't talk about any future...it just wasn't mentioned....dialysis was tried 2x but he had them stop it before completed...he was done . By Tues I was given the final dx and even though I was told I still was very robot-like in my days; somehow I knew what was happening but I wasn't wrapping my head around it. I knew I had things to take care of but some remote glimmer of hope was that Dad would pull thru since he was a little bear who wouldn't give up...Weds he started throwing up and then stopped eating...Thurs he was alert, talking and looked great...I left early since I had a dr appt but I went back and he continued to sleep so I left. Fri I went in very early as to meet with the drs and he was completely different; he was extremely agitated, he kept saying 'I'm dying, I'm dying' !!! and was very very cold again...he was shouting to me "I love you, I love you soooo much" and then I'd shout it back to him with as much intensity as he was...he was supposed to go home that day since the drs had told me he'd have @ 2wks but after a few hrs of his change of behavior I could see the reality at hand; I spoke frankly with his RN for the day who was my angel and Dad's; my gut feeling was right and he confirmed it saying the signs have been there. I thought back of the week and he was right. I had my brother bring my mother who was at home, my husband and son came in and Dad got to say a few words to Mom and then he went to sleep again. Everyone left and I kept all the signs that I had seen earlier to myself so that everyone could just see him at peace for the last time. After they left I stayed and saw all the final changes occur; I still can't get them out of my mind...occasionally I would speak out to Dad "I'm still here Dad", I'm with you, Dad' but he wouldn't respond; his eyes were the changes that I still can't get out of my mind ... very haunting. Dad and I got very close these last 5 yrs and we were always so much alike; during these yrs Dad would turn to me for advice over Mom since she had developed Alzheimers so alot was put on me but I didn't want anyone else to care for them; they are MY parents and I know them better than anyone and will take care of them better than anyone else could. I stayed with Dad but left briefly to go home and sleep for just a few hours; I guess the week started to take its toll on me. The nurses kept assuring me to go home and they'd call as soon as anything changed. I recvd a call @ 4 hrs later, as I was in fact dressing to return to the hospital and they'd said that he was having changes occur that I may want to return ...I told them I'd be out the door in 5mins...as I was leaving I got another phone call saying Dad had passed...as he was passing, I was told that Dad said 'I'm going, I'm going !!!"...and then he was gone...I got to hospital and he was ever so peaceful and I spoke to him briefly and sat for a few minutes with him and my husband...it was surreal, the whole thing was surreal and sometimes I feel it still is....

You were so fortunate to have had this experience with your father. Thank you for sharing it.
My 94 yr old father was mentally alert except for his last 2 days . He'd gone in hospital after a fall at home, but was healing up well enough for 5 days. His last two days he had an infection (hospital caused) and had had an anxiety or delirium before I got there (I live far away though we talked every day and I made frequent trips the last 4 years to visit him). By the time I got to hospital he was not himself and they were giving him antibiotics for the infection. He was restless and I hated the people and medical commotion. I just wanted to be with him and and have it quiet for him. (I know it sounds crazy) but I didn't think he was dying. Doctors told me the antibiotics had a chance of working and he could come out of it. He never did. And I never got Hospice in nor was it ever suggested to me. Bad news: he died in hospital with tubes in arms and very agitated and maybe not as comfortable as it could have been for him. Good news: I was there with him and I think he knew it. And I turned the lights down and kept nurses out as best I could. At the very end, nurses rushed in and all kind of commotion, shaking him and trying to revive and call him back. I knew he was gone and made them leave us in peace and though it wasn't perfect or Hospice, I am grateful we had even those few moments of peace. I hope others read your comments and get Hospice for their loved ones in time.

Wonderful article. My family had wonderful experiences with both my Dad and my Mom. our first experience with hospice was with my Dad. My Dad was in hospice for a year. The social worker really helped my family especially my children who were 8 & 12. Just as you said in the article, the social worker told us the same thing...tell the loved one what they have meant to you & share some of your favorite past memories. Our social worker recommeded using a journal for my children to share memories with my dad. The kids wrote what they wanted & placed the journal in an envelope which was sealed. My Dad would respond back etc.
The experience with my dad helped us when my mom went into hospice for a little over a month. We knew what to expect.

As i expressed to Capital Caring Hospice here in DC. The greatest weakness in humans is "Doubt". I have absolutely no DOUBT that with out them could i have understood ( even write this comment) the dying process, without the in-home assistance team they assembled for my 96 year old mom.As her 67 year old son longtime caregiver/legal guardian ,her mortal life ceased in my arms, in her own home ,in her own bed....time out.....ok..whew...After consultation with her lady doctor i was given the option of contacting hospice.Having had attended a seminar on caring for the elderly some years earlier i half way knew what was up,I just didn't want to freak out at the tape .Sometimes she would look at me as if to say"I am ok u ok??. Hospice came on board after the doctor certified her as terminal diagnosis of Alzheimer's disease .Hospice gave her a prognosis of six months or less to live...We forgot to tell her.She pass 10 months later .During those ten months we received in home services from an interdisciplinary team of physician, nurses case managers ,social workers , chaplain and certified nursing assistant in collaboration with me and mom(US).I could go on and on ..You don't have to go at it alone you the caregiver or the dying just ask and you shall be given .You know good bye's are always inevitable it's a lot easier when you know the mission was accomplished and a job well done This web site has been a part of our team for years Thanks All of You.

A close friend of mine had an 89-yr-old who had been in and out of hospitals for some months; they tried a rehab facility which was not a good place for him. After another hospital stay his drs took him off all his meds and sent him home on hospice. His family was able to spend more time with him at home, his wife couldn't be with him much at the rehab. He did better without the meds, and lived for 16 months.

my mother was in a rehab for her broken hip, started running a fever and having diarrhea so we took her via ambulance to the hospital. My sister refused any treatment and asked for her to go on Hospice. We were taken to a room in a corner of the hospital, it was nice and quiet...the people from Hospice told us it could be a week to a month before she went. That was Sunday. Monday, my sister brought her kids to say goodbye. I stayed with her Monday night, about five she had a bowel movement and I got the nurse...while they were cleaning her up, bile started running out of her mouth. SHe had been unresponsive since Sunday. I heard the nurse tell the aide something about 'that's the sign its near'...and she looked over at me and said "If there's someone that needs to be here, you need to call them now, it won't be long"...she left, I called my sister and fifteen minutes later, she stopped breathing. My sister didn't make it in time. She was there when I came into the world, I was there when she left.

Hi, I am so sorry for your loss, I too had a very similar experience with the passing of my dear Mom in a wonderful hospice hospital setting. prior to losing her, we had her at home with hospice for about 5 months. they were fantastic and gave us every available service nessessary to assist her. our nurses were the ones who recognize it was time for her to go into the hospice hospital. Signs, I did not recognize, of her body just shutting down, and they knew it would be easier for all 6 kids and grandkids, that dying at my sisters home, wuold be even more difficult. They were amazing!! I only wish that everyone had such an experience as we did.

I've always heard only the good Hospice brings, as well as seen it.

I've never had any luck with hospitals and/or rehabs. Lately, it seems hospitals are just big business run by people who just see the numbers, not the people. I'm constantly 'floored' by the number of RN's and CNA's who just don't seem to care. Thus my favorite little letter to a nurse written by anonymous entitled "What Do You See, Nurse".

Please accept my condolences for the loss you are feeling upon the death of your grandmother.

I lost my grandmother 13 days ago. Her stay with hospice was actually through the assisted living facility. It was turmoil when we took her out of the hospital. The discharge instructions were entirely incomplete, the staff at the facilty wasn't truly aware of her rapidly deteriorating condition, and upon her return to her room none of the equipment we needed was there. That's when Heartland Hospice stepped in with their army of angels. On a Sunday night they not only showed up, they guided us through the medical maze, helping to arrange 24/7 care. They phoned and helped to arrange visiting nurses for the overnight, when my grandmother was experiencing what would be the worst moments of 'terminal agitation' she would experience. They arranged for a hospital bed with a more comfortable mattress, a scoop chair in case they needed to move her, oxygen for the days ahead when they knew she would need it, and offered our family a comfort and reassurance at a most distressing time. By the next day, gram's room had been transferred into a cozy and peaceful setting. They had quilted (donated) blankets on her bed, oversized chairs moved in for the family, kept the lamp lights on dim and monitored her condition on a revolving basis with facility staff and the visiting nurses. As gram's conditioned worsened over the next week, they kept her as comfortable as possible in a way I hadn't even imagined. It allowed her to leave this life with the grace and dignity she would never have had in a hospital environment. Gram lasted less than a week with hospice care, but by the end of that week we knew we had made the best decision possible and that she had been in wonderful hands. The day of her passing was extraordinarily tranquil and beautifully untroubled. The staff didn't hover...didn't interfere...they were simply there in a way that allowed us to just 'be' with gram at the very end. They even left her window open as custom for the soul to depart. Whether you believe in such things or whether you don't, the hospice staff proved to be the divine intervention our family needed. We couldn't be more thankful for all of them.

Fabulous article!! And so true about the hospice experience.

Thank you for sharing your sad but beautiful story. How wonderful to have had that with your dad. I am sorry for your loss.

I have learned something from you and will try to share stories with my dad who is in AL and 86years old.

Thank you again.

The last week of my mother's life, I put her in a hospice facility. I wished I did it sooner, they would have made her more comfortable than I could. If anyone has a hospice facility near them and it is near the end of life for your love one, I also highly recommend them.

It is a shame that people wait until their loved one is in such a condition that he/she cannot feel the true comfort, love and ease of the hospice environment. I think that too many wait too long. Hospice care can provide so much, not only for the patient but for the family. I called upon hospice help for my husband when I realized that continuing on the path of trying to prolong life for him was not only uncomfortable for him but was torturous for me to watch. Once we decided on hospice he was allowed to live out his days on his own schedule and in comfort. He did not have to conform to the regular medical care environment and demands. Although difficult decisions had to be made, having committed to Hospice allowed us to live peacefully for his remaining time.

I have had experience with 3 different hospice(s).
My friends dad was in a facility. Soft warm and comfy. My dad at home. The decline in his body mottling was described. He was home for less than 3 hours from the NH. I was holding his hand and my moms hand,and had just said I loved them both. He didn't take another breath. My mom only thought of him as our father, her Alzheimer's. My FIL had a serious fall, hospitalized, the 3 calendar days. Moved to NH, many UTI's, pneumonia, aspirational pneumonia, thrush - all leading to "failure to thrive" he was under hospice care at the NH for 16 days. The hospice workers are wonderful, they use some magic lotion that softened his skin like it had never been. The day he passed it was expected, the BP gets lower and lower as the body shuts down. He also had the mottling in his lower legs. Hospice is not to be feared, but welcomed, they will help you and your loved one be comfortable.

Thank you. My mom is currently in Hospice care and the tone is so much more relaxed - as it should be. There were a few hiccups in the beginning but all has settled down now. Mom and I actually have quality time now instead of me hyper vigilant and waiting for the next bomb to drop as I have been for so many years now. She had said for years that she was "ready to go" and had a DNR order in place but I thought it my responsibility to keep her here.
After yet another round of successive hospital stays this last year I finally lost it on one of the doctors. The next day I received a call from the head of geriatrics who informed me my mom should have been in Hospice long ago and Hospice does not make me a "bad" daughter. For whatever reason (monetary I think), I had never been told this before. Mom and I both have peace now and we are able to enjoy what time we have left.

Jncole, so beautiful, your thoughts and experiences. Am happy for you, there for you in spirit.

My mom is on her second day at the Hospice House in Coeur d'Alene ID. My 86 year old mom broke her hip and as hard as the nurses at the hospital tried it was a tragic experience but before she was transported to hospice two nurses came into her room, dimmed the lights and gave her a lilac bath. Then they rubbed her down with lilac lotion and massaged her back. I rode in front of the ambulance as she was transfered to hospice and about two thirds of the way there i smelled the lilac fragrance drift up through the cab. As we drove up to the entrance of hospice it looked like a beautiful mountain resort and as I looked at it I thought " This is where my mom is going to die" and I felt peaceful about it. The interior is warm and beautiful with a double sided fireplace, very comfortable lounge chairs and some of the best soup and pastries I've ever had. Mom's room is beautiful and warm with painted green walls, rich woods and a pink quilt on her bed. Last night two nurses came in to change her diaper and the one nurse hugged and kissed her as they were rolling her on her side telling her what a brave woman she was. Then I heard that nurse sing Jesus Loves Me to my mom. I know the bible says God uses each of us but I often wonder what I am being used for. It is very evident how these angels of hospice are being used. I am eternally thankful.

After they are gone and you still want them here, I understand that she cannot be here, remembering her makes me sad. If I push thoughts of her away, I feel like a traitor, like if I forget her, then it would mean she didn't mean anything. I've lost lots of great grandparents, grandparents, older aunts and uncles, but was prepared due to their age. The memories of them are happy, make me smile. But this is different. She was supposed to be here with me until it was our turn. Would have been a lot of help with our aging Mom.

I have been a community hospice nurse for 9 years. I go into people's homes and attempt to teach and support them as they care for their loved ones in their final days or months. Let me just say that making the decision to keep people at home is one of the most loving things you can do but people need to realize that it is also one of the very hardest and it is almost impossible for 1 person to do alone.
In May 2014 my role changed for a brief time. My mom, who was 80 years old, entered the hospice program. Over the previous 2-3 years she had numerous hospital admissions for pneumonia and many times was on oral antibiotics in between admissions. Each time she lost a little more strength and never got back to baseline. In January 2014 I had a conversation with her and told her that when she was ready to be done with the hospitals she needed to tell me because we has options. We were very lucky to have had the kind of relationship that I felt comfortable saying that to her without her thinking I was giving up on her.
Nothing more was mentioned about that conversation until April when she was once again in the hospital. She asked me what was stronger than morphine (she was allergic to morphine and was scared she was going to be in pain). We talked about other drugs that could be used just as effectively. She went back to ALF after that admission but within 2 days was back in with bilateral pneumonia.
My mother was one of the strongest women I have ever known. I am 1 of 8 children. My father died at age 45 leaving my mom with 5 of us still left at home. I watched her go from that strong person to one riddled with anxiety over the last year. I had not seen her truly laugh and smile for so long.
On the day the decision was made for comfort care only I got my mom back again. There was no fear, no anxiety. There was laughter and joking and so much love.
Though we had enough willing people to care for her at 1 of our homes, her wish was to go to a local hospice home. Right up until the end she was a mother and wanted things to be as easy for us kids as possible. We too had the most amazing experience and cannot say enough good things about Ellis Farm. I know from experience how important these facilities are to patients and families but our experience just reinforced it.
What I would say to families is this - do not be afraid to have these conversations with your loved ones. Know what their wishes are should something happen suddenly or even if there is that slow decline. Know that if you are caring for them at home that there is nothing you can really do wrong except ignore them. I understand wondering if you are medicating too much or not enough because even with all of my experience. ..I still questioned myself when it came to my mom.
My mother was only on hospice for 1 week. She died with my 4 sisters and myself surrounding her. She died with the peace and dignity with which she lived her life. I couldn't have asked for anything better for her.
I would also point out that hospice is open to anyone whom the doctors feel have a prognosis of 6 months or less. You do not need to be bedridden or have only days to weeks left. It has been proven that people who go on hospice early rather than later actually outlive their initial prognosis because of expert symptom management and not having to run all over to doctors appointments.
Sorry to ramble on and thank you for letting me share my thoughts with you.

I liked it because it gave a good picture of hospice care. Both of my parents died at home under hospice care and that was good, too.

This is beautiful. We all tend to put things off. Tonight I had a great heart-to-heart talk with my son because we never know how long we have. I am 91. Thanks for sharing.