Acting as a caregiver for a patient with cancer can take a significant toll, especially when the caregiver is the patient’s spouse. A study took a closer look at the psychosocial wellbeing of spousal caregivers who lose their partners to cancer at an older age. The researchers found that having a social support network can be beneficial for bereaved caregivers—putting nurses in a prime position to help during this difficult part of life.
Coupling bereavement with caregiving—as is the case in spousal caregiving situations—adds a layer of complexity to the already difficult challenge of being a caregiver.
“Spousal caregivers often feel lonelier after the death of their partner due to the absence of the time-consuming caregiving. Caregivers have to find new activities and roles in their daily-life. Due to the exhausting nature of the caring relationship, caregivers of cancer patients sometimes report more relief than severe grief after the death of the patient,” said the researchers.
This study included former spousal caregivers of cancer patients who died at age 65 or older. Interviewees who were bereaved for between three months and one year were included. Interviews were conducted focused on the caregiving and bereavement processes, with the present study focused on the latter.
Between November 2018 and February 2019, 11 interviews were conducted (average [range] length, 62 [34-94] minutes) with caregivers who lost their partners between three and 12 months (average, 7 months) prior to cancer types including Kahler’s disease and brain, intestinal, kidney, esophagus, liver, pancreas, and prostate cancer. Caregivers were responsible for caring for their spouses for a period of time ranging from six months to 10 years (average, 2 years). The average age was 76 years (range, 67-85 years). Seven caregivers were female. Three major themes pertaining to caregivers’ well-being after their partner’s death were identified:
- The first moments of bereavement
- Grief in progress
- Moving on in life
Caregivers’ First Moments of Bereavement
Caregivers expressed disbelief, anger, and sadness. A few had feelings of regret due to decisions they made. One caregiver (participant 2, 70-year-old female) said, “I have now bought a lighter [car] model. And every time I get into that car, it is just like … that I did something wrong … Because he said I had to make sure I had a good solid car.”
The first few days following their partner’s death were busy as they had to work out issues and see visitors. Some caregivers said this was overwhelming, while others welcomed the distraction from their grief.
They also discussed their final moments with their partners and said they found comfort in “the presence of love and being able to say goodbye.” Most caregivers were satisfied that their partner’s final wishes, such as funeral requests, were met.
For some caregivers, the death of their partner came with relief that their spouse was no longer suffering. Some also felt relief that they had their rest and freedom back because caregiving was “both emotionally and physically” draining and resulted in a lack of sleep.
Grief in Progress
Once some time had passed, caregivers associated their well being with “consolation, gratitude, loneliness, fear, emotional fluctuations, and consolidating support.” They had mixed emotions when thinking of their partner, and despite missing their spouse, they were able to look back fondly at their relationship and their memories together. One caregiver (participant 8, 80-year-old male) said, “I consider myself lucky to have known her for so long.”
And while their partner’s death came with loneliness, the caregivers had been experiencing this even before their spouse passed away, in part because their new normal routine was stripped of hobbies and former activities, as their sole responsibility was to their partner. A caregiver (participant 3, 77-year-old female) said, “You are being lived. You live on automatic pilot.”
Caring with a partner for cancer also stoked fear of developing cancer themselves in some caregivers; one (participant 5, 87-year-old male) now considers himself “a bit of a worrier” and recalled feeling a sore throat that he brought up to his doctor: “The doctor said, ‘I see nothing amiss.’ Is it cancer? I do not believe it, but you still walk around with those thoughts.”
All interviewees said that their family was an important network of support, but some noted how they tried to mask some of their emotions or didn’t want to be a burden on their family. One (participant 8, 80-year-old male) said, “I am not going to do that to my children … if I let myself go, I will not do anything anymore … I would not want to be an additional burden for my children because I let myself go.”
It came as a bit of a surprise that life still continued after the death of their partner. One caregiver (participant 11, 67-year-old female) said, “I thought life would stop, but life just goes on. It is accompanied by a lot of pain, but it goes on.”
Moving On in Life
The final theme of the discussions was moving forward. All caregivers said they wished their partner was still around; some said they still saw their partner in their living room or in their dreams. In addition to the heavy emotional burden of losing their partner, there was also a loss in the practical sense. Completing regular tasks, such as financial or technical issues, that were once completed by their partner now fell into the hands of the caregiver. Newly living alone was also a challenge; one caregiver (participant 9, 85-year-old female) said, “I cannot stand being alone … Before, I always had someone, someone to say something to, but now I come in and it is just as if the walls are coming towards you.”
Caregivers said that they are learning to find a balance between accepting the loss of their partner while still moving forward and living their life. Meanwhile, others said the grieving process was not what they envisioned. One caregiver (participant 5, 87-year-old male) thought he would have moved on much more quickly: “Everyone says that it is normal, but it has already been … about 5 months.”
For some caregivers, living through the death of their partner helped them be less afraid of death.
The researchers concluded that it’s important for bereaved caregivers to have a social network of support to help them through the grieving process. “Nurses, who are close to the caregiver, are in the best position to determine these risks and provide the support they require. By improving access to healthcare professionals during bereavement, bereaved caregivers’ loneliness can be reduced,” they said.