We invite you to tell us, "What has been your most memorable means of support during your journey of grief?" Whether it was the hospice nurse who went beyond the call of duty or the book that your neighbor gave you, these real-life accounts may serve to provide others with new ideas and needed inspiration.
Due to our small staff, we cannot look at submissions over 700 words, and will not be able to return submissions. Over time we hope to share these with other readers through our web site and our Journeys newsletter.
Please submit your story to: firstname.lastname@example.org
Hospice Foundation of America
1710 Rhode Island Ave, NW
Washington, DC 20036
Select the following links to read the stories below:
A Gentle Death: Five Months with Hospice
A Good Death: Thoughts on Hospice Care of my Mother
Hope to reassure others about how hospice can help
Hospice Made a Tremendous Difference
Thank You So Much
I Loved My Big Brother
People Can Die with Peace and Dignity
No Regrets About Hospice
How Hospice Affected My Life
With Sincere Appreciation
Death, Dignity, Gratitude and Love
Thank you for helping our family
Thanks - A Small Word For A Large, Heartfelt Effort
What Do Americans Say About How They Want To Die?
My Hospice Story
The Death of a Friend
If You're Not Sure, Don't Hesitate - Call
The following letter was sent by a reader of "Journeys."
Tell Them About Hospice
Call Hospice Now
My Personal Experience with Hospice
On a morning two months after my Mother’s 91st birthday in the skilled nursing unit of McAlester General Hospital, I asked her if she knew about hospice. “Well, not exactly,” she answered, so I explained, “Hospice is an organization that helps people, who are very sick, like you, to be cared for at home instead of in the hospital.” She didn’t say anything else at the time and I didn’t mention the “d” word. However, that afternoon she said quite out of the blue, “Hospice is for people who are dying and want to be comfortable.” “Yes, you are right,” I said. She continued, “I’ve lived a long life and a good life, but I don’t want to live like this – not being able to swallow solid food, drink straight (without thickener) water, and be in pain. Everything must come to an end. Wouldn’t it be nice if people could just wake up dead?”
Grateful that my Mother had the insight to understand and accept her situation, I responded, (humorously as I often do in stressful circumstances and as my Mother would expect and appreciate), “Well Mother, yes that would be nice, but it isn’t that easy, so we will just have to remember when life hands us a lemon, we make lemonade, even if we have to put thickener it in!” She laughed and said, “I’m glad we talked this out.” I did feel compelled to check once more to be sure she didn’t want to pursue the alternatives available to prolong her life – surgery or a feeding tube. She clearly stated, as she had in the past, that she did not want either intervention. Rather she wanted to know, referring to her death, “How long will it take and what can I do?” Questions for which I didn’t have answers. Thankfully, the caring, capable, and committed staff of Hospice of McAlester were able to guide us in our quest.
While that was the last conversation my Mother and I had about how she wanted to end her life, she did courageously raise the topic with both her caregivers, telling them that she knew she was not going to get better and that was OK and that she was ready for her life to come to an end. This matter-of-fact and practical way of looking at the end of life gave me the permission and strength to let go of my Mother and follow the philosophy that the hospice staff shared with us – the patient knows what they need and our mission as caregivers is to respect and honor their wishes to the extent possible.
Our experience with Hospice of McAlester was less than a week, but what a difference those six days made in the comfort and care we were able to provide my Mother. With the guidance of the hospice staff, we were able to change medications, food, and drink to meet her needs. As my Mother’s only child and one with very little experience with sickness, I felt the satisfaction of being able to have a positive influence on my mother’s last days. Being able to call a knowledgeable nurse for advice when my Mother was either anxious or in pain, and then be given the instructions and resources to administer medication or try a different comfort measure took away the helpless feelings I would have had as my Mother’s death approached. Not only was the hospice staff expertise available by phone, but due to my Mother’s rapid decline, a nurse visited each day and kept informing us of typical physical and emotional signs we would see as my Mother’s death drew near.
It became incredibly difficult to understand my Mother’s wishes, as she came closer to the end of her life. The less she could articulate what she needed, the more we had to rely on what the hospice staff could tell us that terminally ill patients usually want. I had never observed the process of dying so was unprepared when my Mother developed what I learned from the hospice staff was known as terminal agitation. She became mentally and physically distraught and her caregiver and I were unable to comfort her. The on-call nurse from Hospice of McAlester, drove the 35 miles at 2:00 am and stayed until about 6:30am to give us help and support during this distressing time. She had the experience to help us understand what was happening and the medications to ease my Mother’s mental and physical discomfort. This is just one example of the many times in those last six days of my Mother’s life that I was able to handle a situation due to the coaching and expertise of hospice staff.
Most importantly, hospice care does not end at the moment of death – the nurses were there to bath and dress my Mother for her journey to the funeral home. They even saw to it that she was holding a tissue, an action very typical of my Mother and one they had noticed and honored. The warmth the hospice staff has extended to me and to my Mother’s caregivers has made it much easier for all of us to get through the past months since her death. The grieving process is unique to each person that has suffered loss, but there are certain feelings that can be anticipated and thus better dealt with and in that area the hospice staff has continued to share their knowledge with us and offer support in a compassionate manner.
While loosing a loved one to a terminal illness can never be easy, through my Mother’s death I have come to see the value of active participation in care giving to the dying person by their family and friends. The Hospice of McAlester staff excels in understanding needs of both the patient and those dear to them. While this may seem odd, I have heard myself saying to others that my Mother had a “good death.” By that I mean she was able to die as she wished, at home in her own bed, surrounded by people she loved. This could not have happened without Hospice of McAlester.
--by Judy Allen, October 2004
My husband Fred had been diagnosed with cancer in September, 2004. He started chemo treatment but after a short while and two trips to the hospital we made the joint decision to stop chemo and go for quality of life for the time left. We had discussed Hospice with many people including nurses and some of the negative things we heard scared us more than anyone could know. We were left with the thought that if we chose to go with help from Hospice Fred's time would be very short….The decision to call Hospice was made jointly by the two of us. We called the doctor and asked him to contact Hospice for us. From the very first visit we knew we had been misled and that now Fred would have the care and quality of life for the short time left. He was never overmedicated as we had been told he would be and nothing was done without our consent. All of the nurses, social workers and volunteers could not have done more. Due to the wonderful care of Hospice Fred was able to go "home" peacefully. As for myself, they again could not have done more in trying to help me over this very difficult time and I will always be grateful to all of them. If I had one wish it would be to be able to reach people that have the same fears about Hospice that Fred and I had and to be able to reassure them. Hospice gave him the quality of life for his last days that he would not have had without them.
[Note: The author of this story, Norma Burmaster, has made a personal web page concerning her experiences with Hospice in hopes that it might ease the minds of others that have hesitated to get Hospice.]
I can't begin to narrow down the "most memorable means of support" our family received from hospice during my Dad's illness. We were fortunate to have Hospice of Lancaster County close to our home. The people we were lucky enough to have assigned to our team while Dad was at home were some of the most caring and professional individuals I've ever met. They even attended Dad's funeral service. Once he was moved to the Hospice center, the nursing care he received was unlike anything I've ever seen. Nothing was too much trouble for these dedicated and compassionate people. Every aspect of the care he received and the support for our family was outstanding. It's been three years since Dad died and we can never repay them for what they did for all of us. I will be retiring shortly and one of my goals is to become a volunteer for Hospice. I urge anyone who is dealing with a terminal illness to contact this wonderful organization. They make a tremendous difference when trying to cope with a terrible situation and we'll be forever grateful.
I just wanted to thank you for being the best organization on this earth. Thanks to you, the process of grieving was easier. My dad was sick with cancer and had numerous strokes in the past month. Me and my family decided to bring him home from the hospital, A) because they could not do anymore, and B) we wanted him to go in peace at home and as comfortable as possible. Because of hospice this was all possible. The staff was perfect . . . I mean that. They treated me, my family, and most important my dad with the most respect and hospitality I have ever seen, all in great detail. Thank you so much.
Amazing how many thoughts flash through your mind as you sit across from your big brother on his deathbed. You try to provide him courage and inner strength. You talk to him about matters that he cares about...the love he has for people, places and activities in his life. You try to provide comfort. You are amazed that he still makes you laugh. You wish that it would be all better. You pray that there is something greater for him to come. You reflect on how this "larger than life" character you looked up to as a boy could ever be in such a weak condition. You reflect on mortality and the family generation that passed before. The tragic situation he is in makes you focus on what is really important in this world rather than all the meaningless trivia that tends to clutter our days on earth. For days to come you can't seem to concentrate on anything very long. Nothing really brings joy in your grief. Sometimes you want to talk it out...other times you just want to avoid the conflict in your soul completely. Life is so precious and can be so fragile. Caring people want to reach out and tell you they are sorry. The people at the Hospice center provide you with the information and the understanding to deal with it all. We all struggle with not being able to do anything. You thank them for their love and concern. Time passes. More thoughts swim in your head. You remember how things used to be and you visualize the quality time you shared together. You tell yourself that things will be alright...it's the best thing....it is a blessing that he is comfortable...the end of his troubles is near...even though you don't really understand it nor believe it. Facing the end of life is so difficult. Not sure I am very good at it. Thank God the wonderful people at the Hospice home are. Now you get the word from the center...he is gone. His troubles and struggles are now over. His soul is with the Lord and the rest of my dear family grieves as they remember him as he was. I am feeling blessed that I knew him. I am happy that we shared some quality time. I am so grateful of the fine people at the hospice center in Odessa who helped him and I have that time. I am certain that I will feel the loss for years to come when people or circumstances remind me of him. I find comfort in knowing that he is OK now. I will remember the lessons he taught me. I loved my big brother.
After 3&1/2 years of "surviving" ovarian cancer, my mother's journey on earth came to pass. Her disease first played a hypocritical "game" of hide and seek as the diagnosis spilled from "primary peritoneal" to ovarian stage 3C and uterine stage 1. At a young 67 years old, Mom heroically led her battle with weapons including gemcitabene, carboplatnum, venalbine, taxol and others that are now a blur. Through each step of her journey unremitting strength empowered her to continue to lovingly guide her family and friends as they held her hand. Even after her visit to the chemo suite for treatment she quietly whispered how sad it was to see others so ill with cancer...she was grateful for her energy! Then her last hospitalization due to fever and low platelets confirmed the ultimate fear. Her doctors suggested a hospice care facility...she wanted to go home. The hospital social worker, my stepfather and I quickly researched hospice home care as we were told we had a two-week time frame for my mother's journey to end. We brought my mother home, hospice care in place. The hardest part, especially for family members, was the switch from medical care to palliative care...lab techs weren't drawing blood 3 times a day...no more photography (ultrasounds and ct scans). Now was time for comfort care...morphine as needed...popcorn and old movies, silly "tell-all" stories from our childhood, favorite foods like sorbet at 2:00 a.m., learning to adjust the electric hospital bed without giving her whiplash...Most important of all, my mother wanted the truth..."Will I walk again? Why am I retaining all this fluid? Do I still need my usual meds?" At this time it became apparent I had difficulty discussing the truth of her prognosis. Beth, my mother's hospice nurse, sat on my mother's bed, took her hand and looked straight into her eyes...and with dignity, honesty, strength and peace she answered all my mother's questions to her best of knowledge. This "angel" from hospice led us to a path where we all were able to accept this journey. My mother died exactly two weeks after coming home from the hospital. My brother and I were by her side singing to her as we cried and kissed her cheeks. We told her how much we loved her and that everything would be okay...not to worry. Beth allowed us to grieve while she made the call to the funeral home arranging to pick my mother up. She guided me away from the window and hugged me with her strength, wisdom, honesty and peace. She stayed with our family until all necessary calls were made...and then some.... I am employed full time as a teacher's assistant working with developmentally challenged children in a special education setting. I also attend college part time in the evening, majoring in sociology. At this time I am looking into volunteering at a hospice care facility in my area. Our hospice nurse, Beth taught me how to help my mother and to realize that people can die with peace and dignity. I would like to hold someone else's hand that is frightened. Our society needs more "Beths".
My mother passed away in June after an extended battle with cancer. I had never heard of hospice until her doctor mentioned it after telling us that they had run out of options for treating the cancer.
His office put us in touch with this facility and Mother was under their care first at home then later at their facility. I must say, I was deeply impressed by the care she received as well as the whole hospice concept. The nurses and staff made things so much easier for mother and her family.
At the hospice with my mother, although she never opened her eyes in her last week of life, the nurses were always cheerful and talked to her and explained each thing they were doing. With their guidance we were able to go through Mother's death with a much more positive experience. This has made her passing much easier to deal with. We always question ourselves afterwards and wonder if there was something that we could have done differently. However, I have no regrets about placing mother in hospice care.
A few years ago, I worked for a home health care agency, affiliated with a large area hospital. I was picked to take a hospice training course, since we frequently went into the homes of local hospice patients to provide a few hours of free time for the primary caregivers. This was my first experience with hospice. At the time, I thought it was a wonderful program.
About a year later, my father in law was diagnosed with terminal cancer. I spoke with my husband's family about calling hospice in. I really didn't know how they would take it. When George's doctor suggested hospice, they called Hospice of Stark County. The people came in. At the time, I thought it was so great, because the Hospice People made sure that the end of George's life was as comfortable as possible for him, and the entire rest of the family. When George died, the nurse and counselors were at the house in minutes. Even the grandchildren were given the chance to talk to the counselors.
Now my mother is terminally ill. She is end stage cancer, emphysema, and congestive heart failure. We asked the oncologist over a year ago if he supported the Hospice principles, and would he be willing to call them in when the time came. Absolutely, was his answer. He treated mom's cancer for over a year. I can't tell you how many times I would ask him or a member of his staff why Mom was so angry, so confused, so demanding. The answer was always, "We're not going to deal with that here, today." Hospice never told George that. They offered help for him and his caregivers.
The first week of June 1999 he gave mom a chemotherapy treatment in his office. The next week, she was in the hospital with her lungs filled with fluid. The oncologist walked in and told her, I can't do anything else for the cancer, from now on, this other doctor (a pulmonologist) is going to take care of you. Goodbye. That was it.
Tonight she is in a nursing home, she's in too bad a condition for me to take care of her at home. She has to take physical and occupational therapy every day, so that Medicare will pay for the nursing home. When I ask a question about her condition, they seldom have any answers for me. She is depressed, she feels abandoned and very very angry. I feel ashamed because I can't take care of her. I have a good cry every day, and go for days without eating or sleeping. Nobody is dealing with her emotions, let alone helping me with mine.
Between the change of doctors, the move to the nursing home, Hospice has still not been called in. Dealing with the death of someone you love is always difficult. If you have been fortunate enough to go through it with the Hospice program, trying to make it through without Hospice is maddening. I know the level of care that my mother could be getting. It's all the difference in the world. If you have the choice, call them, you will be amazed at the amount of care that your entire family will get.
I have just now returned from my grandmother's home in central CA. She passed away on December 29th with the family by her side. We were truly blessed with the hospice care we received. We had called them as soon as I got up there and they were such a blessing. The support and compassion they gave us was truly wonderful. They were only with us for about a week before she died but we were able to call them with even the smallest of questions and they were there for us without hesitation. They dealt with the doctor and any medication changes that were needed. They counseled us on what to expect in the dying process so that in those final hours, we knew what was happening and were able to be by her side. The social worker also gave us literature on how to talk to the children (ages 6 and 2) and I don't believe we could have handled it as well as we did without that support. Our family is so grateful to have had Hospice. They are such wonderful and loving people and we will forever more recommend hospice services to anyone who is in need. Thank you to the Hospice Foundation for keeping these services going. You all make such a difference to those departing us and those of us who are left behind.
With sincere appreciation,
My mother died of lung cancer on August 11, 1998. Hospice was with her in the last several weeks of her life. They were there with us when she died. There simply are no words to express what I feel for these wonderful people who helped each of us, especially Mom, who was allowed to die at home, surrounded by people who loved her. I don't know what my Dad would have done without them. He was Mom's primary caregiver while suffering from prostate cancer and emphysema himself.
Now, just 4 months since Mom's death, I am headed back to Florida from Cincinnati to become Dad's primary caregiver in his final months or weeks. I know Hospice will be there for us again. I am so grateful! I don't know if I could go through this without their loving care and concern.
Do not hesitate to call on Hospice and to continue your relationship with them after the loss of a loved one. They have helped me so much in coping with my grief and now to help me prepare for the loss of my father so soon after the loss of my mother.
Thank you Hospice, you will all remain in my heart and my prayers always.
As I sit to write this letter to you, I am still trying to deal with the news that Hospice is now caring for my father-in-law. In many ways, I am so sad: this is the beginning of the end. But in many other ways, I am overjoyed. You see, Hospice cared for both of my grandfathers at the end of their lives. I know that Hospice will be there to help my mother-in-law, and now I know that they will also be there to help us.
When my grandfather's cancer became active, Hospice came and started to help my grandma. They helped get him bathed each day, helped him to the restroom, helped him eat when he was able. They also got my grandmother out of the house for a little while each day. This alone meant to much to her, because it was a time that she could be out with friends, and occupy her time with things other than the impending death of her husband. These people took such wonderful care of my Grandma, I was relieved when Hospice was called again when my other grandfather took ill.
Again, all necessary medical supplies and medications were taken care of by the wonderful staff, and my grandmother was given a much needed break each day. Again, Hospice took care of everything she needed, as well as my Grandpa.
Now, Hospice is in my life for a third time. I know that the road ahead is hard, I know it's going to hurt to let go, but I also know that Hospice is here, and that has already made things a little easier to handle. Mom, Dad, my husband and I, as well as the rest of the family, will not be alone in this difficult walk.
Thank you for your love and dedication. You are all truly a gift from God.
My mother passed away June 28, 1998 after nothing could be done for her heart condition. We became involved with Hospice the last 2 months of her life. She was always so happy when the day came that her nurse came to visit her. She always enjoyed her company and she always made mom laugh. I was like most people - I assumed Hospice was for cancer patients only. Mom and I had even talked about we wished we had know about Hospice when my Dad had cancer 9 years ago. Thank you Hospice for taking some of the worry from Mom's final days as she didn't have to worry how she was going to pay for her medicine those two months. May God Bless each and everyone of you! Thank you from the bottom of my heart for being there for Mom and for caring about the family.
A year ago I took a vacation to visit my parents. It was a two-week summer vacation for my two daughters. The day after we arrived, my father got word his cancer had spread and was terminal. The doctor immediately contacted Hospice, and they called on us at home. We had mo idea that my dad would die in front of our eyes in a matter of sixteen days, but we were supported daily by the Hospice workers: nurses who visited and offered phone advice, volunteer respite care workers, and most importantly to my family, the social worker psychologist. She provided a special opportunity for each of us to tell Dad how much we loved him, and (while he was still able) for him to tell us back in his gruff but loving style.
When he died so quickly, the hospice workers were gentle with my Mom, who herself was very debilitated by many afflictions. Although we children came from thousands of miles for a family funeral, we worried about Mom's continuing care and support during her grief. Hospice continued to serve her.
But it was three weeks later, when MOM suddenly died that I discovered how much I needed hospice for myself. I called the toll-free number from home several states away, just to talk to someone who knew my parents and the sadness that enveloped me those weeks and months after my parents' death. Thank you, Hospice, and I hope others will benefit as much as I have.
Respondents were asked to assume they were terminally ill and had six months to live. When presented with the option of using "a comprehensive program of care" provided by physicians, nurses, counselors and other professionals to keep them comfortable and alert at home, while emotional support was given to other family members, 60% of respondents reported that they would be "very interested" in considering using such services. An additional 26% indicated they would be "somewhat interested."
At the same time, 22% of the people who had high interest in the services did not opt for hospice when asked to choose by name. This indicates that confusion or unfamiliarity with the term "hospice" caused hesitation.
Women were more likely to express very high interest in comprehensive services. Respondents in the South were more likely to consider hospice services, as were retirees, college graduates and higher income people.
*Gallup poll commissioned by National Hospice Organization.
In October of 95, my father was diagnosed with end stage prostate cancer due to agent orange exposure in Vietnam. As the months passed, it spread into his bones. This caused him to be in alot of pain.
My parents live in Florida, and we all live in Indiana. Mom had to handle this by herself. We flew down to help when we could, But I know now it wasn't enough. When my fathers kidneys started to shut down, it knew it was time to make a final trip to help out.
Mom was exhausted and not dealing well with dads impending death. We did the best we could, but it wasn't enough. We needed help. We called Hospice.
I can't begin to tell you what a blessing they were. From the nurses who came to my parents home, Chaplain Bob, and the social worker who helped us all deal with our grief.
My parents were fortunate that they lived near a city where there was a hospice home.
Hospice gave dignity to a dying man and healing to a hurting family. They shall forever hold a special place in our hearts for all they did for dad in his final days. This past year, hospice has kept in touch with mom every month and Chaplain Bob has been to see her several times.
My father's death changed all of us in ways we would never have imagined. The love and care we received from Hospice has also changed us for the better. Mom and I now do volunteer work for our local Hospice programs.
Thank you to every person affiliated with the Hospice Program. You are all God's Special Angels in our hearts.
My father started to get really bad this past February. He fell constantly. My mother and my sister finally decided it was time to call Hospice. My father's oncologist suggested we look into this organization. He said it would be helpful for my father and for us. He was right. My father got so much love from these people, even though he passed away two days after the Hospice nurse came into our house. They provided all the drugs and oxygen. We did not have to pay anything. My mother cried the first time she called because there voices were so soothing and calm. She loved how they put not only my father at ease but also my family and I. This foundation gave my father what he wanted the most, to die at home surrounded by the people who loved him, his wife and kids. Afterwards they took care of everything, again we didn't have to do a thing. They were very helpful towards us and send us letters about who has sent donations to the organization. Hospice gave my father a sense of dignity and comfort in his last days. I would like to just say thank you to Hospice helping my family.
As I sit here and write you, it seems such a long time ago that I was the one who helped two people with Hospice care.
I thought that I knew how to grieve, but I was wrong. I had a very special friend who was also my doctor. When I became disabled due to a car accident, he was the one who encouraged me each and every day.
He also encouraged me to become a patient advocate because I had been on both sides of the health care system: care-taker and patient. He was my mentor, my guide, my fitness coach, my defender, and yes, the drier of my tears. He held my hand and assisted at my two surgeries. He had to become the explainer to both my husband as well as me when no more surgeries would make me better.
This special person took on yet another role - that of teacher. He taught me to fight for my rights, that pain hurts and chronic pain kills, that I still had self worth even though disabled, never to give up and how to grieve for my loss of ability.
What he could never teach me was how to grieve for his death at 49 of a massive heart attack. I never got to say good-bye even though I was to see him that day for yet another disease.
It has almost been one year now, but I still miss him. I am so very grateful that the one of the first things that came to my mind was to call Hospice for me this time. I learned that grief knows no boundaries and makes no execptions. I will always be grateful for the very special woman who explained to me that it is the depth of our relationships that can determine our grief. You see, I always thought Hospice was just for family members, but I was wrong.
I will always be grateful for Hospice for helping me deal with a very personal loss. I am now becoming a patient advocate thanks to Hospice and one special doctor. Please call Hospice if you, too, lose someone so very dear.
I have nothing but good to say about this organization. My mother also says the same thing as my Grandmother passed away about a year ago. If you're not sure whether or not to call, don't hesitate, call. These folks are very caring and in understanding the nature of what we all go through.
I love you for everything that you've done Hospice.
Thank you VERY much.
The following letter was sent by a reader of "Journeys."
Until your house burns to the ground you never realize what it means to have only the clothes on your back.
Until you run out of gas on the interstate you may never understand the importance of checking your gas gauge regularly.
Until you hear a doctor tell you your husband has six months to live you've never known what the word 'frightened' really means.
When I first heard the word 'hospice' I didn't know what it meant except, of course, that it applied to others.
Then they came to my house. It has been over one year now since my husband's death and one month since his hospice nurse, Julie, phoned to say, 'We are cutting you loose now, Ruby, but if there is any way you still need us we are only a phone call away.'
Poor Julie, poor hospice, poor me. We came into each others' lives under the worst conditions out there, and parted under the best of circumstances. How they put up with me I will never know. I was arrogant, bleeding to death internally. They took all of the rotten things I had become, and saved me from myself.
They asked nothing in return except that I stay in touch with them if I needed to.
To say thank you to all of the people who believed in hospice enough to make it happen for all of us who were never going to need it in the first place, would be like moving the sands of a desert one grain at a time, but I have to try. Thank you hospice- and to nurse Julie- thank you, for me.
Five short months later, my wife died. The treatment was totally ineffective. I'm sure someone knew she was dying. We knew she was in serious trouble, but we did not know how serious the problem was, or how short a period of time she had left to live. Even on the morning that she died, we did not realize that today was the day.
On Tuesday, our daughter called our local hospice and talked to the chaplain, who offered to come right out. I didn't recognize what was happening, and requested a delay. The Chaplain came out on Wednesday.
On Thursday I talked to two hospice groups. I didn't know that there were two, and I didn't know anything about either of them.
As a result of these conversations I asked one hospice if they would help us. Of course, their answer was, "Yes." During the day and into the evening I had three telephone conversations with hospice nurses. I had questions and I needed answers and help.
The hospice nurse came on Friday and was here with me when Fran died....
If only you doctors had told us about hospice. We needed to be with them sooner. It would have helped Frances and it would have helped me and our family members. Frances could have had a bath. We could have asked about her lack of eating and her lack of bowel movement. And even a failure to urinate. Or why she was turning green. We had nowhere to turn for help or answers to our questions.
Hospice could have given us that help. But we didn't even know about them.
Please, in the future, as you have patients who are dying and could use hospice -- tell them about hospice.
I have prostate cancer and I have discussed hospice with my urologist. If and when my cancer "wakes up," I want him to release me to hospice so that I can die in peace and with dignity. I don't fear death, I fear dying.
Again, as you have patients who are dying and could use hospice -- tell them about hospice.
Robert P. Gray
It's been almost three years now since my mother died. The hospice in our area was still a volunteer organization using county health nurses. We all, the family and nurses, sort of stumbled through everything: the drugs, the doctors' orders, the medical equipment. But the nurses were the most caring, always there to give encouragement and hugs when things were the worst. The hospice volunteer was there for me to talk to any time I was overloaded (my mother and the rest of the family didn't want anyone but the nurses in the home). I don't know how I would have coped with all the denial and attitudes at that time without them. I'm glad to say that now our hospice is fully accredited and can do everything for families much better. I still get newsletters and support them when I can. I always tell anyone going through an illness that will lead to death to CALL HOSPICE NOW. You can go through it without them, but it will save your sanity and make the rest of your life easier to let them help you.
In July 1995 my husband was diagnosed with terminal bone cancer. When someone mentioned to me about hospice... no way... it scared me to death. But then the doctor asked if we would like to go home and my husband said yes. I said I am scared there alone, and that is when he said we would be able to have hospice. Yes... what a wonderful and dedicated organization it is. There is no way that I could relate how wonderful it was to have my husband home and have the two weeks with him. The wonderful memories we shared and to know that the morning he died he was not alone, but God and His angel to carry him home. Thank you hospice...
My personal experience with hospice came recently when my step-father passed away. My mother quietly hugged my neck after the doctor suggested moving Pop from the hospital to the hospice facility down the street and gently whispered, “This is all happening so fast, oh please don’t let him die on Christmas Day!” He had been fighting the good fight and the decision from admitting him into the hospital or sending him home changed when he had a seizure while the doctor was in the room. Immediate tests were ordered and revealed a severe brain bleed; nothing more could be done.
Pop had made it through the night which was more than many expected. His rest appeared tormented even with the morphine shots he was receiving every two hours. His breathing was labored, the room was cold and the monitors sporadically interrupted our dreaded fears as the deafening clock on the wall counted down, ticking the seconds away while the arrangements for his transfer to the hospice facility were made.
The hospital nurses were kind and left us alone while we made a few quiet phone calls to the family. The clock continued, but we wanted time to stop right there. Mom kissed Pop’s head and held his hand while she opened the Christmas gift he had chosen for her just two weeks before. We felt it was appropriate that she open the gift in front of him even though Christmas was still two days away. The gold and diamond pendant expressed his love for her; he had chosen a gift that would describe how much he loved and appreciated her. She hasn’t taken the necklace off since it was clasped around her neck, left to dangle over her heart.
The nurse came back in to see if any of us needed anything and to inform us that the ambulance had arrived to move Pop to hospice. Her strength admirable, my mother stood and took a deep and tortured breath, holding back the reckless sobbing that would come pouring out had she dared to part her lips. Her love for this man was strong and undeniable; she wanted more time to share the plans they had made.
Just the mention of hospice brings a finality that no one wants to hear. “Hospice is beautiful,” the nurse encouraged. “The rooms are cozy and decorated like bedrooms and each one has its own theme. One is all decorated up in a fishing theme.”
“Oh he loves fishing,” Mom volunteered. “Maybe that room will be available.”
Right away we noticed that hospice smelled better than the hospital and commented on such as we gathered in the waiting room. A soft spoken woman offered us coffee or tea and showed us around the surprisingly ample kitchen for such a small facility. A social worker came out to speak with us about how we were welcome 24 hours a day and how to access the building after hours. She asked if we had any questions, but some were no longer important and others suddenly escaped our thoughts. They kept our minds occupied while we waited to see Pop. We were functioning in an existence between two worlds, nothing felt real… and we felt nothing but a dull, aching numbness. Some weird type of autopilot seemed to have taken control, despite of – or possibly because of – the lack of sleep combined with an indescribable emotional turmoil erupting within our souls.
In no time, the staff settled Pop into his new room. Painted in a calming shade of beige, the open blinds looked onto an immaculate courtyard. Comfortable furniture adorned the room that was aglow with warm incandescent lighting. The white chenille bedspread was like the one my grandmother used to have on her feather bed when I was a child. The area was bigger than I imagined, not at all like the hospital’s institutionalized box and the absence of tubes, monitors and machines permitted Pop to rest comfortably.
The staff was reassuring and offered words of comfort. A young woman made her rounds visiting the patients with a sack full of toys; and she laid a plush Santa in the bed with him. Someone else brought in a tall white tapered candlestick nestled in a small glass holder; a card tied on with ribbon held the words of the 23rd Psalm. We stayed until late in the evening when Mom said she’d like to go home and try to get some sleep. My step-brother had already committed to spending the night with Pop, so she felt confident the love of her life would be in the best of hands without her there.
At 3:15 AM the phone rang and we were woken up with the realization that if we wanted to see Pop again, we had to return to hospice immediately. The end for us all is inevitable, but suddenly the end was approaching at break neck speed and no one was ready to say goodbye. As we gathered silently around the bed, each of us afraid to leave the room for even a moment, we found the inner strength to say our goodbyes through tears and through touch as our throats burned with pent up screams of despair for our sorrow and our loss. We silently watched the lines of pain disappear from his face as his body released his energy, his life, and his spirit… on Christmas Eve.
While the ordeal of my step-father’s passing was both emotionally and physically exhausting, the hospice staff was amazingly courteous. We knew the end was imminent for Pop, and allowing him to expire in the care of the hospice facility was ten times better than if he had remained in the hospital. I appreciated the hospice staff and their attention to even the oddest of our requests during this difficult time. I would recommend to anyone that is faced with making these tender, yet painful decisions for a loved one to accept the services of hospice. Although losing a loved one was unimaginably personal, hospice lent a heartfelt hand, gently guiding us through this anguished journey.
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