Mary is a 75 year old woman who provided care for her husband John as he journeyed through pancreatic cancer. Caregiving was very difficult, exhausting and challenging, particularly the management of his pain and nausea. Many nights were disrupted attending to John’s needs, and even with the help of family, friends and a home care nurse, John eventually required admission to a palliative care unit in local hospital for pain management and sedation.
All of these experiences were difficult and traumatic for Mary and left her with strong feelings of sadness, regret, and guilt that she was unable to care for John herself at home where he preferred to be.
The home care nurse visited Mary at home approximately 2 months after John’s death to offer bereavement support. The nurse could see that Mary was still struggling with difficult memories, sadness, and finding a meaning and purpose for her completely changed life. The nurse offered Mary a small booklet called the Finding Balance Intervention and encouraged her to write in it every day for 2 weeks at which time the nurse would provide a follow up visit.
In the section called “Expressing your Emotions” Mary wrote: “today I spent time visiting with friends and we reflected on the past good times as couples. I feel lonely for him but also happy to have had him for so many years.” Her journaling under “time out” included “my faith is most helpful”, “games on the computer”, “family time”, “a good movie”, “my art projects” and so on, Mary wrote quite a long list of activities that provided a distraction from difficult emotions. Mary also wrote a long list of supportive people and how they helped her.
Under “creative space to journal” Mary wrote about “feeling torn in half the day John died, one half of me was gone and the other half was alone and had no one to turn to or care for!” As she wrote out her feelings and experiences, Mary came to a realization:
“I am now realizing how much John taught me all those years, he never complained and lived today as if there was no tomorrow and so I have come to realize that life is there to enjoy what you can, learn from your mistakes and be grateful for what you had. I pray that God will allow me to help others in coping with life. I cry but mostly when I am alone and it relieves the ache in my heart. I am opening a door in front of me but will always keep the back door ajar! I don’t ever want to forget the 50 wonderful years I had with John but I do have to go on and complete my purpose.”
Maintaining a balance of daily life involved 2 long lists of activities coupled with time for yourself and included some creative activities such as writing a book about what she remembers about John, doing more art projects, and continuing to honor John on father’s day, his birthday and giving a donation to the hospital where John died in his memory. On reflection in the FBI, Mary wrote: “My faith is getting stronger as I look back and see the past 50 years we had together.”
Mary’s use and feedback on the FBI was similar to others we included in our study (EJON). The tool did seem to bring up sadness and was difficult but also felt they opened up and had some growing. It was difficult to think about grief and the challenges of caregiving. One participant said they felt so inadequate and the suffering stayed with them, but reflecting through writing showed how the experience also gave them time together, to say goodbyes. Telling the story of caregiving was difficult, but after it came out, it felt better. Realizing other bereaved caregivers felt the same way through the examples provided was helpful.