Hospice Care, Part 5: Another Family’s Hospice Experience

Barbara and Cindy, Mother-Daughter Team

Cindy is a dear friend whom I met around 1980.  Together we’ve experienced many of life’s milestones — single life, finding our Mr. Right’s, weddings, married life, having children, watching them grow, and caring for our parents.

Our mothers both spent their final days on hospice but their hospice experiences were different in many ways:

• One woman received hospice care in a hospital, and one in a board & care home.

• One woman was on hospice only 10 days versus over two years for the other.

• Her mom, Barbara, was younger than my mom by 23 years, and didn’t have Alzheimer’s disease so she was aware of her hospice care.

• Cindy was a long-distance caregiver for her mother while I lived only five minutes away from mine in her final months.

Cindy shares an intimate portrait of her mom’s end-of-life care with us in the following interview.

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I’m very sorry about the loss of your mother, Cindy.  It is so kind of you to share your personal story with us, since it surely was a painful time for you and your family and probably hard to revisit. On behalf of the TLeC community, I want you to know we greatly appreciate your willingness to do this interview.

Could you give us a synopsis about your mother’s medical history and at what age she was admitted to hospice care?

My mom was admitted to Hospice care at the age of 74, after numerous bouts of cancer. She was diagnosed with breast cancer at the age of 59 and was diagnosed 10 years later with carcinoids. Carcinoids are self contained cancerous growths that cannot be treated with chemotherapy. The only treatment was surgery to extract the cancerous growths by cutting out sections of the small intestine/bowel where the carcinoids were growing. She lived with this cancer for approximately 5 years until it metastasized into Carcinoid Syndrome and Peritoneal Carcinomatosis, which ultimately took her life on October 10, 2008.

Did your mom receive hospice care at home, in a hospital or nursing home, or in a separate hospice residence center?  Was the hospice company part of a large hospice corporation or a smaller “mom and pop” type of hospice company?

Mom received hospice care from Regional Hospice in a hospital in Danbury, Connecticut. She was seeking treatment in that hospital because my brother, who is an MD, had privileges there and he could monitor her care more effectively. When the cancer progressed, it was the natural choice to move her up to the 4^th floor of the same hospital where they had hospice care. She was on hospice for 10 days before she passed.

Was the idea to utilize hospice care from your mom’s wishes or did her doctor or someone else recommend it?

Mom’s doctor and my brother had presented the idea of hospice to Mom while she was on the surgical floor, seeing no further options for treating her cancer.

Had you or other family members investigated local hospice care options before this?

We had never discussed hospice previously.

How did your mom respond to this difficult decision?

It was not my mom’s wish to go into hospice because she was in denial of dying. While I was there, she resisted the idea of going to hospice, telling the MD, “But I did everything I was supposed to do; I had all of my scans.” There was a naive belief that if she did her part by being proactive for her medical care, she could keep the cancer at bay. She wasn’t ready and that broke my heart. I reassured her that she had done everything possible, but through no fault of her own, the cancer had taken over.

Was your whole family behind the decision 100% or was there any resistance to it?  If there was resistance from some family members, how did you manage to come to a consensus?

While I was still in California, I was in contact with my brother and sister-in-law who were with Mom 24/7 in the hospital. It was my sister-in-law who called me and informed me that I should come home because Mom would be going into hospice the next day. I remember I was sitting alone in my car outside of a bowling alley where I had driven my daughter to interview for her first job. I was in disbelief at first. I asked if I needed to come out immediately because I had already booked a flight to visit Mom in 2 weeks. I wanted my sister-in-law to tell me that Mom would be okay until then. Talk about denial! She convinced me to come out immediately. I was crying when my daughter came out from her interview; I broke the news to her on the way home.

Can you describe what you believe your mom got from this end-of-life care?  Or what Barbara expressed to you if she was able?

Mom expressed that she dreaded the “death watch”. She knew when we all came in from different parts of the country that we were there to say goodbye. She had told my brother and sister-in-law before we all arrived, that that’s the last thing she wanted, and she didn’t want to linger. Few of us spoke about her impending death directly with her and that’s something I regret tremendously.

We sat around her and reminisced, telling stories of our childhood (there are 4 of us siblings). I marveled at her memory and coherence! She remembered things my siblings and I couldn’t begin to remember. I knew she was the one in the family who carried the memories and when she died, the stories died with her. We showed her albums of when she was a young mother, vibrant and full of life, and she reveled in looking at the albums. She really enjoyed reminiscing and seeing herself in better days.

Barbara, September 2005

She asked how her grandkids were so I told her a story of how difficult it was for my oldest son to go off to college. Upon hearing that he had cried the night before we left him at college, Mom welled up with tears. When I saw her tears, I was quick to reassure her that he was very happy now. In hindsight I believe her tears were probably more about never seeing her grandson again, rather than her sadness over my story, and I have tremendous regrets for not asking her about that.

Can you tell our readers more details about the day-to-day “hands on” hospice care your mom, Barbara, received?

The day to day hospice care was a pleasure. There were so many wonderful professionals who looked in on Mom, as well as our entire family. They took our needs into account as well as hers, tending to our physical needs and emotional needs. They offered physical comforts such as rollaway beds, private family rooms to grieve, computer access to stay in touch with our lives outside of hospice, counseling, showers, food, etc. They met with us in a family room explaining where she was in the dying process and gave us booklets explaining what to look for and what to expect. They suggested that we might want to stop our bedside vigil and let Mom have some time to herself in case she was ready to cross over, but didn’t want to do it while we were there. It was painful for us to feel like we were leaving her alone but we took their advice. The very first night that we left her alone, she died. Hospice had given us good advice.

Can you discuss the pros and cons of your family’s hospice experience?  Overall, did hospice care meet your expectations?  Exceed them?  Disappoint you in any areas?

The pros definitely outweighed the cons when it came to hospice, but there were a few cons worth mentioning. Ironically, one of the biggest disappointments was that they didn’t provide real tissues; hospital tissues rub you raw! We had to bring in boxes and boxes of Kleenex. Another disappointment was there were no outside gardens or tranquil place to go to with your grief. I find nature and fresh air do wonders in healing grief and transporting you away from the hubbub and technology inside of a hospital. Where there is so much death, it would be a welcome escape to immerse yourself in life.

My most shocking revelation was when hospice couldn’t control my mother’s pain and wanted to do surgery on her. I was not prepared for this at all! I pictured hospice as a serene place where people go to die and where there is absolutely NO pain, and no traumatic surgeries. This was not true in my mom’s case. In hindsight I know it was the right thing to do, but it was painful to watch. She was vomiting bucket after bucket of bile which kept her in a constant state of pain. When they suggested doing surgery to put a gastric tube in her stomach to drain the fluid and thus stop her vomiting, I was against it because my mother feared being intubated and this would be more trauma to her body. I wanted her to die in peace. I resisted until my siblings and the doctor assured me this surgery would bring her peace, which it did ultimately. I never imagined that hospice would perform surgery because I see that as a life-saving step. Ideally I would have liked a pamphlet or something that spelled out the various functions of hospice and had it explained to me that sometimes achieving a peaceful state might require something more aggressive than medication.

Another pro was when we got the call in the middle of the night to say Mom had passed, we were greeted with such care and tenderness from the hospice staff as we entered her room to say goodbye. I found I couldn’t say goodbye and leave her alone in that hospice bed. It was unbearable for me to walk out with her still lying there, cold and alone for the last time. In my intellectual mind I knew Mom was gone, but in my emotional mind I couldn’t stand the idea of leaving her alone. I approached a hospice nurse whom we had grown close to, and asked her to please stay with Mom. She understood what I was feeling, saying she wouldn’t leave her. I desperately needed to hear that, and it gave me great comfort.

Do you have any words of wisdom you’d like to share with other families that may be using hospice now or considering it for their loved ones in the near future?

Words of wisdom . . . hmm.

~ Bring your own Kleenex.

~ Give your loved one “space” to die by not hovering over them 24/7.

~ Don’t engage in fights with family members during hospice, recognizing that if they are acting badly it is likely a symptom of their grief .

~ Don’t be afraid to talk to the dying person about their fears/beliefs about dying.

Would you recommend hospice care to other patients or their families?

I absolutely would recommend hospice to anyone who was losing a loved one. It is comforting on so many levels to the patient and his/her family.

Cindy, your story brings tears to my eyes!  You share many important lessons for everyone reading this interview.  Not the least of which is to bring tissues!

Thank you again.  You were a blessing to your mother and may the happy memories of her remain with you and bring you peace.

Cindy is an M.F.T. who lives in California with her husband, children and dog.

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This is Part 5 in a series on Hospice Care. The previous four parts in this series can be found by clicking on the links below in the section “Related Posts.”