When to Call Hospice

I read a really informative posting on Carol D. O’Dell’s wonderful blog, Mothering Mother and More, entitled “Is It Time to Call Hospice? Three Signs Caregivers Need to Know.” It brought back memories of when my husband was ill with esophagus cancer and in tremendous pain. I didn’t know which way to turn, and the narcotic pain medicine his two doctors prescribed didn’t seem to help much.

My husband was in tremendous pain, 24/7 with esophagus cancer. Although he didn’t say much, I know it was living hell for him with the pain. I was trying to manage it for him (heavy narcotic pain patches, high-end narcotic drugs, etc.), and I had never had any training and didn’t know which way to turn. Neither doctor suggested hospice to us. Many times I would call the doctor’s after-hour on call services, and receive nothing in return. Usually it was another doctor on call and he didn’t want to be responsible for uping any medication. It was incredibly frustrating and ineffective to have to wait another 6 or 7 hours when someone you love is in debilitating pain.

I was under incredible stress because I was afraid of giving my husband too much medicine, and also trying to keep our three boys (11, 17, 1 on an even keel. When my husband was 3 months into his cancer diagnosis, my sister in law, who is a nurse and lives away, came to see us. She immediately told me I should contact hospice for pain control. She assured me it was their forte. I knew something had to be done. I had always associated hospice with end of life services, and didn’t know they would help with the pain management end of things.

Once I contacted hospice they acted immediately. It was still a roller coaster with the pain, (many days of extreme ups and extreme downs) but there were also many days it was adequately managed and his pain seemed bearable. Hospice worked continually on his pain management, and my husband was on hospice 7 months before he passed away. They did everything possible to make this situation less stressful for not only my husband and myself, but my children also.

Here is a link to Carol’s posting. http://caroldodell.wordpress.com/

An Individual Grief Journey

At first the loss was a relief, and that sounds terrible, but my husband had been sick with esophagus cancer for almost 12 months, was in tremendous pain and had wasted away to nothing. I never knew for sure how much weight he lost, but I would estimate close to one hundred and ten pounds.

When he died, he took that last breath, I knew it was best for him, as terrible as his life and lack of quality of life had become. At about six months it really began to hit me, and my life became a deep, gaping hole of lonely, empty despair. I was afraid to talk about it, to voice my fear, my total numbness. I had three children I needed to keep on an even keel. At times I would cry, or stare blankly, and I thought perhaps this is going crazy, or at least I was losing whatever grip I had on life. This was the beginning of my grief experience.

Now, four years later I can see the tremendous growth I’ve gone through, allowed myself to move through, and I feel I have come out on the other side, a better, more compassionate person. But I still remember the time in between, the time of incredible loneliness, feeling wounded and hurt to be left alone. In truth, I don’t want to forget those years in between. It made me who I am today.

Euthanasia, Dying with Dignity

I read a post today about Washington state trying to pass a law so the terminally ill can die with dignity. I know if something like this had been available in New York State, my husband would have taken advantage of this means of dying with dignity. The State of Oregon already has this type of help available for terminally ill patients, as do a few European countries. Perhaps this is something no one thinks about until it strikes home, I know I never gave it a thought, I had no occasion to until my husband became ill and suffered so much. There are of course people on both sides of the argument, but again, it is a deeply personal decision, and not one that should be made by a court or strangers at the end of life. You can decide for yourself. http://www.yeson1000.org

Breast Cancer and What Every Woman Should Know - Maureen’s Mission

I found an incredible page today, http://www.maureensmission.org and there is a video from Maureen Thiel, who died from breast cancer, about her misdiagnosis for many years of breast cancer.

It is a heartrending story, and a story that is still happening to many women today, who die from breast cancer due to lack of proper testing and doctors not paying attention to sometimes very obvious symptoms.

This is a video every woman should see, especially anyone who has ever been told the breast lump is only a cyst, or nothing to worry about. There is a serious gap in health coverage today, and Maureen’s surviving spouse, William Thiel, is trying to bring this “lack” in our system to everyone’s attention. There is a wealth of information on this site. Please visit this site for your own information and for every woman you know.

A Dream of Death

copyright 2008 

My husband was ill ten months with cancer when I had the dream. I had been taking care of his needs for almost eleven months, and even though some days there seemed to be progress, in hindsight I see it was really a steady progression on a downhill curve.

One night I had a dream I was upstairs in our two story house and looked out my youngest son’s window, which faces a large back field. I could see a large machine coming inexorably closer and closer toward the house. It made a terrible racket, almost like a threshing sound. With fear, I knew that it was going to come into the house through the back, into the kitchen and to the corner of the living room where my husband sat. I tried to call out and warn everyone, but I couldn’t speak. I ran downstairs, hearing it get closer and closer.

When I got down to the living room, my husband’s chair, where he always sat in the corner, was totally gone. The machine had come through the back of the house as I’d feared and swept him and his chair away. It continued around the front of the house and across the side yard.

I heard my youngest son talking out side to a friend of my husband’s, and the talk was normal, as if nothing had occurred. I wanted to cry out, but it was no use. When I awoke, I knew with certainty my husband was going to die.

I never told him about that dream. I couldn’t talk to him about it. I was afraid to acknowledge what I knew it meant. I was doing the best I could to keep my husband alive, but in my dreaming state, I knew he was going to die.

That day was the first time I acknowledged the truth of his impending death. That afternoon our regular hospice nurse arrived, and my husband asked her quietly, without fanfare, how much time she thought he had. I just stared at him, not saying a word. She said based on her experience, probably two or three weeks. I went into a numb state. I was not expecting him to confront his own death and mortality in this manner. And yet, it was only natural he would know the end was near. I had been denying it to myself.

When the nurse left, I walked outside with her. I told her of the dream I’d had. She put her arms around me in my distress. I faced the truth that he was going to die.

That week, my husband refused to let me put any of the protein rich formula I had been preparing for him, into the enteral pump, his only source of nutrition. I tried to argue with him, but he was quietly adamant. I still see the expression on his face. He simply said, “No more.” That was it. That was his way of telling me this is the end. Two weeks later he died. It wasn’t discussed, we didn’t’ tell the kids he no longer wished to receive the little sustenance his stomach could take. It was just done. Should we have discussed it with the kids? I don’t know. We talked with them about everything else. Most importantly, their father continually told him how much he loved them.

The last week is a mixed collection of jumbled memory. My husband didn’t sleep well, since he dozed on and off all day. He developed a bed sore that we were trying to cope with, but had to be incredibly sore. His focused turned inward. There was little verbal communication, and I stayed by his side most of the time. At night, he would be awake at two or three in the morning, and he’d drink cups of water at a time. It was amazing, considering he hadn’t been able to drink or eat in three months or more. He became incredibly weak, and I could no longer lift him to help him onto the commode, even as light as he had become. My heart cried inside, but there was nothing I could do, except love the man I had married twenty years before. I was exhausted, and knew I couldn’t take anymore. I wished for him to go to sleep and asked God to take him. His passing was relatively peaceful, but I always wondered if it would have been easier if we had talked more about him dying.

New Book Reviews for A Journey Well Taken: Life After Loss by Elaine Williams

I am posting the latest book reviews for “A Journey Well Taken: Life After Loss.” Some of them were received via email. At this point I have about 22 positive reviews on the book, which will be available June 2008.

“I enjoyed your book! It’s obvious that you’re a good writer and it’s a heart-felt story.”

Diane Brandon
Integrative Intuitive Counselor & Intuition Teacher, Speaker
Author of “Invisible Blueprints: Intuitive Insights for Fulfillment in Life”
www.dianebrandon.com

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“The book is good and I am sure that it will be quite helpful to early/young widows.

It is also a quick read - which is also a good thing as something complex was certainly beyond me during those early years and I know this is the case for many women. As well, you do catch some of the nuances of widowhood - nuances which can only be brought to light by one who has been there. Best of luck with it.”

Mie Elmhirst PCC, MBA, Widow’s Life Coach
www.widowsbreathe.com

“I related to so many things you shared in your book. I’m encouraged by how you have uncovered your own inner strength through your journey. I hope and continue to pray that God will reveal his purpose for your life as well as my own. I’ve been drifting since my husband’s death in 2004.

After, 28 years of marriage with my junior high school sweetheart I have felt totally alone and lost even with two grown children and three wonderful granddaughters. One of which was born following my husband’s death in 2005 and now carries his name forward. It’s just not the same. It was very helpful to know you have walked through the challenges and you are moving forward by taking new steps every day. Blessings to you and thank you for sharing with me. So, many will be blessed and encouraged by reading your book.”

Karen White
Widowed 2004

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“We have some things in common when it comes to the subject of grief and it feels as though I know you after reading ‘A Journey Well Taken: Life After Loss’. I admire your willingness to be open and vulnerable — I’ve seen pain and loneliness in there too, and you talk about that openly.”

Fred Frank, Owner Comfort Music and
www.growingthroughgrief.com

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Testimonials Received via email

“I just want to say that I read your excerpts of your story and I found it so touching and inspirational. I found it by accident, as if I was led to it. I lost my husband suddenly and have experienced all that you mention as far as grieving. Just recently my mother was diagnosed with esophagus cancer, and has elected to try radiation. She is a two-time survivor of cancer. So what I’ve read so far, in your excerpt from your book, is very informative, and so touching. Thank you for sharing it.”

Steppingstone

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“Thank you so much. . . it helps somehow to know what you’re feeling is normal and that you’re not alone with those feelings. The more stories I read the more I realize
I’m not going crazy, but that I’m grieving. You have taken so many words right out of my own mouth. Any help on healing is a welcome in my life.”

Bonnie S. widow of 3 years

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“I really enjoyed reading your book. I just wanted you to know I feel some of your pain. Thanks again for writing your book and may God bless you.”

Polly R.

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“Thank you for sharing your story with us. You are very strong and give me courage.”

Nicole

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“I was looking on the web for information to help my mom who was just widowed a month ago. I ran across your story. As I began to read it I got goose bumps. I knew your husband had esophageal cancer as soon as I read about his burping. My dad just lost his battle with that horrid disease. We also tried many alternatives because he also felt he wouldn’t survive the traditional approach.

My heart goes out to you. Your husband was way too young to be stricken down by this disease. Your children should have been able to have their dad much longer. He sounded like a good man. I am sorry that you weren’t able to grow old together, as I am sure you planned. My dad was 76, full of life, a great husband, father, and grandfather and interested in everything. Even though we know he lived a full life we thought he was too young, but we are all grateful for having had him that long. . . my mom misses him like crazy. Thanks for sharing your story.”

Cathy B.

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“I am a 47 year old woman and just lost my husband 30 days ago today suddenly from cardiac arrest. Finding and reading your excerpt tonight is truly a blessing and has brought me comfort in knowing that I’m not alone. What you’ve put into words describes so much of what I’m feeling inside. I will look forward to reading more of your journey that is only beginning for me.”

Patti W., widowed 1 month

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“I was very moved by your story. Like you, I also lost my husband suddenly to cancer and believe that although we move on and stay strong for our children, our hearts never really heal. I read the first part of your book to my best friend last night who stood with me and went with me to chemo with my husband. The tears rolled down our faces as we shared in your grief.”

Miriam B.

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“I’ve just finished reading your story. My Dad, my Mom’s partner for 38 years, died. . . the past 2 months have been, as you can imagine, very, very difficult. I was looking online about what a person goes through when they lose their life partner. I want to understand what my Mom is going through that she may not be able to express. I also wanted to find something that would maybe encourage her, and give her hope.

Your story touched me so deeply… It brought me to tears. (I had to close my door and just take the time I needed to read your story in its entirety.) Thank you for taking the time to write your story… Please know you’ve touched a life today.”

Jeanette P.”I just want to say that I read your excerpts of your story and I found it so touching and inspirational. I found it by accident, as if I was led to it. I lost my husband suddenly and have experienced all that you mention as far as grieving. Just recently my mother was diagnosed with esophagus cancer, and has elected to try radiation. She is a two-time survivor of cancer. So what I’ve read so far, in your excerpt from your book, is very informative, and so touching. Thank you for sharing it.”

Anon

Grief in its many forms

Grief and loss come in a multitude of forms. Grief due to loss of a loved one but there’s also grief related to illness and the impending demise of a loved one.

This week our family pet had to be put to sleep after ten years with us. When he was five weeks old he was slated to go to the dog pound. No one wanted him, so we went down to the place that had him and brought him home, not that I really wanted another dog. (We had the vet put to sleep our cherished Lab “Pearl” the week before)

Bear had a terribly aggressive, fast growing tumor that despite our best efforts, he chewed at and ultimately broke open in his last day of life. I went back and forth for a month on the idea of okaying an operation. He seemed fine, despite the tumor, but the operation I was afraid would totally lessen his quality of life. He would lose his tail, and some of his hind quarter. Otherwise, he seemed his usual self. It was strange…but I finally decided to go for the operation, when he seemed to be bothered suddenly by the tumor — only to have him within the span of twelve hours, go from seeming to be okay to dying. We never got to the operation, and it seems he was fully involved with cancer, even though he looked okay on the outside. It’s incredible to find how much you’ve become attached to an animal in that span of time. He still had a beautiful, shiny, thick husky coat, and yet he was dying from cancer.

My girlfriend of 17 years just had an operation for endometrial cancer. When she went for pre-testing and bloodwork the week before, and told me they found some swollen lymph glands in her legs, I was very fearful. Having been through this cancer route before, the deep feeling in the pit of my stomach was there…that unrelenting fear for the worst. I wanted to keep her buoyed up, it wasn’t up to me to play doctor or surmise what this might mean. She had experts to do that. But I called her, took her out to lunch, kept in daily contact, just to talk to her and let her know I cared.

I saw her this morning after the operation which took a lot longer than they expected. I stayed with her several hours. At a few points we cried together, because the prognosis is not good. The doctor that came to see her, not her regular doctor, alluded to the fact that there was cancer in other places. She is realistic, and I couldn’t help the tears that started to my eyes at her matter of fact way of dealing with this news. I cried and I already knew this in my gut.

She said she doesn’t want to linger, if she’s filled with cancer. She wants it over quick. She knows how it went with my husband, and she fears lingering toward death. I didn’t want to talk about this, but I must, so I can help her in this way, just by listening. I feel for her and I feel for myself. Already I feel the loss in my life, the loss of a good, loving person who loves her dogs, animals and especially kids. And they love her.

I love her, but there’s nothing I can do for her. Nothing at all, except be her friend and help her in the best way I can.

The Dying Professor - An Inspirational Video

A Friend’s Diagnosis and Ovarian Cancer

A good friend of mine of about 17 years just found out two weeks ago she has endometrial cancer. It’s stage three. It really makes me crazy inside, and I want to cry at the same time, recalling what my husband went through with cancer. I’m doing the best I can to help her -physically and emotionally, but it really makes me appreciate all the more what I have in my life. It makes you realize it can all be over in a second, just like that.

I am very aware of the fact that many people who have not experienced loss, have no clue as to the time, thoughts, feelings, fears involved in losing a loved one. I hope they never do. There’s a big misconception in a lot of society about the grief and grieving process. It is a personal journey, it is nothing by any book, and it is heartwrenching and yet at times enlightening. And strangely, it brings out the best in many of us, many times. How strange but how true. Perhaps we learn to love better, appreciate what you have more, and hold close and dear those we love. It’s really simple, and yet complicated.

Sungold/kittywampus has a wonderful post on new strides in detecting ovarian cancer. Her blog is here:
http://kittywampus.blogspot.com/2008/02/test-for-ovarian-cancer.html