Care Dimensions: Joëlle’s End-of-Life Journey with Hospice

Voices of Care

Joëlle’s End-of-Life Journey with Hospice

Posted on December 14, 2020 by Bob Birkett

Care Dimensions RN Case Manager Rick Healy enters notes at the bedside of patient Joëlle Birkett. (Photo courtesy of Bob Birkett)

I didn’t really appreciate how hospice worked until we needed it for my wife, Joëlle.

Despite two years of treatments that included radiation, chemotherapy, immunotherapy and a few clinical trials, in the end her cancer continued to spread. Her final hospitalization was in the cardiac unit where the doctors decided that further treatments would not be useful. That’s when the hospice option was suggested.

We were about to walk down an unknown path. A friend whose father had received hospice suggested Care Dimensions, and soon arrangements were in place that allowed Joëlle to be at home with me as we navigated this unfamiliar territory before us. 

A French teacher learns about hospice

Joëlle had a long career as a French teacher. She filled her classrooms with laughter and joy. Now she had much to learn and quickly developed a trusting relationship with her hospice nurse, Rick. He was straightforward and knowledgeable about what to expect in her remaining weeks. He explained what each medication was for and how it was to be used. He was honest with her about what was coming and told her that she had the power to make her own decisions: about medication choices and whether to eat . . . or not. Rick also suggested ways she and I could spend our final days together. He gave her a sense of control.

Guidance from Rick and other Care Dimensions staff also helped me as Joëlle’s 24/7 caregiver. I learned about what to expect as Joëlle declined and received guidance from hospice care team members who visited us. Of particular benefit was the Nursing Support Line. I’m not a trained caregiver, so having access to guidance from a nurse 24 hours a day meant a lot. I knew that I could always call and would receive an instant answer to my questions.

I was glad to have Joëlle home with my daughter Claire and me. She started sleeping more but she found the energy to enjoy visits from friends. We spent quiet time together, recalling our early life together in England and France, 40 years ago, and watching our favorite films. We must have watched “Notting Hill” about six times over two weeks.

Comfort at the Care Dimensions Hospice House

After three weeks at home, Joëlle’s condition worsened. She was getting restless and required more medication. It was becoming increasingly difficult for me to care for her. It was time for her to move to the Care Dimensions Hospice House where the 24/7 nursing team could manage her pain and symptoms much better than I could at home.

I remember the doctor telling me, “Now you can focus all your energy on being Joëlle’s husband and let us take care of her nursing.” I had tried my best but could no longer give Joëlle the care she now needed. The hospice house was our best option.

When nurse Rick first came to our home, he asked Joëlle what her concerns were. She told him that she worried about what the moment of death would be like. Rick explained what he had often seen in his hospice experience: increasing periods of sleep and finally sleeping and not waking up. I think his honesty helped ease her concerns. Rick’s calming influence also helped me get through those final days leading up to Joëlle’s passing.

I don’t know how we would have managed Joëlle’s last three weeks without hospice from Care Dimensions. We would have had no idea what to do. It’s a tremendous resource for patients and families who are struggling with advanced illness and all the unknowns that come with it. Even if hospice isn’t something you normally think about, it’s good to know that it’s available if you or someone you love needs it.

For a hospice or palliative care evaluation, call Care Dimensions at 888-283-1722, or request services via our online form.

 

About the author
Bob Birkett resides in Concord, MA.

 

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Since 1978, Care Dimensions has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in more than 95 communities in Eastern Massachusetts.