|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"