In this page you can read about peoples’ experiences as they found ways to adapt to their new responsibilities and accept their role as a caregiver. You will read about how caregivers talk about changes over time with their care recipient, and how spouses adapted to their new roles. Most people we interviewed had experienced a particular point when they realized that, in addition to being a parent, partner, child, or friend, they had also become a caregiver for their loved one. This did not mean that everybody was necessarily feeling comfortable with the title “caregiver”, or with their role. You can read more about this in the topic page becoming a caregiver.
Acceptance of the caregiver role
The people we interviewed accepted their roles differently. Some caregivers spoke about having to accept the role in order to deal with their responsibilities. Others felt the responsibilities were thrust upon them. Michael said, "I think you just have to accept who you are and move forward because if you stand on the sidelines and just are angry that you are in this and you can't get past that, you're really headed for trouble."
Several caregivers experienced feelings of progressive loss because of the changes experienced in their care recipients' health or behaviour over time. Christiane said, "You lose a bit, then a bit more, then a little bit more and more." This is how Alyce describes loss: "I lost my husband, and the way I best describe it is 'he went overseas and he never came home,' and that's the hard part."
In several situations, the roles or relationships between caregivers and care-recipients changed as the illness progressed. Many caregivers started to take over certain tasks that the care recipients used to do before, such as looking after personal finances or daily tasks like taking out garbage and household cleaning. For some, this was a difficult process; for others, it was a moment to reflect on their responsibilities and roles.
Spouses adapting to roles
Spouses who were caring for an ill spouse experienced other important changes. For example, they spoke about how society seemed to have different expectations for when you cared for a spouse compared to when you cared for a parent or a child. You can read more on this topic in society and caregiving.
Most spousal caregivers described a change or reduction in their feelings of love and affection for their partner. They also spoke of the loss of being sexually intimate with their partner as the illness progressed.
Not every caregiver lost their feelings of love and affection; however, Matsonia, for example, met her partner when he was already diagnosed with Parkinson's disease and continues to have deep affectionate feelings for her husband.
Illness and taking on a caregiving role can challenge relationships. Two caregivers described how they had a relationship with someone else in the period that they were caring for their wives.