Table 2.
Transitions: themes and data examples
| Question | Response themes and data examples |
|---|---|
| Please tell us about the biggest changes you have experienced in caring for your family member? |
Consumed by responsibility: "The most overwhelming part of care giving is the 24/7"; "Full time job..." " I am consumed and overwhelmed" Personal growth:"I am a very different person..." "I had to develop new skills and patience..." Negotiating help: "I had to spend considerable time with the many caregivers in helping them get to know her needs, likes and dislikes..." Roles and relationships:"Change in role. I am now my parent's main support rather than them being mine..." Decrease in own health:"Lack of sleep... Depression, anxiety and despair..." Feeling isolated from or abandoned by friends and family:"... I just feel so alone..." "My friends and family just have left me to do it all" |
| How did you deal with these changes? |
One day at a time: "Taking things one day or one issue at a time helps me to avoid feeling overwhelmed..." "I try to go with the flow..." Negative emotions: "Not very well at first... I was upset... I cried... I lost my temper..." Actively seeking knowledge and assistance:"I tried to learn everything I can about the disease..." "First, I asked for help from anyone I could think of..." Connecting and looking to other family members and friends:"Sharing with immediate family..." "LOTS of communication with family and friends..." Self- care:"I try to take care of my own health..." |
| What do you think had an influence on the changes? |
Lack of any one else: "I have no choice" "... no one else came forward". Acknowledging importance of self care: "I recognized that I had the Right to take care of myself. This was not a selfish act - it enabled me to be a better caregiver" Love for another:"Deep caring between my wife and I." The disease process: "My husband's diagnosis and the progression of his disease." "The illness influenced change" Access to information:"Learning about the disease helped me to cope with his symptoms and to keep him safe." "Our involvement with the Alzheimer's society has been an invaluable source of information." |
| Was there anything you think could have helped? |
Support of family and friends: "The continued support of my family and friends" Access to appropriate services and knowledge: "An individual must know all the resources available and how to access them. " Empathy, understanding and knowledge by health care professionals: "The staff on the whole could have tried to be more understanding. I would write a book about the lack of care and caring." |
| Question 5: Anything Else? |
Frustrations abound: "I feel frustrated and alone". Feeling grateful: "I am so lucky, I am Blessed with very nice friends" |