Table 2 Transitions: 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"