I took a caregiver survey last week and they asked me about Larry’s quality of life and how I knew it, but not about the quality of my caregiver life. It got me musing a lot about quality of life, what it is for me now, and in the past.
Apparently there are lots of studies of patient Quality of Life (QOL) used in studying medical interventions and outcomes, and there are questions about whether they are patient centered if they don’t consider the patient’s goals first (duh!). They give an example of a questionnaire.
I also found a Caregiver QOL questionnaire with eight domains of “quality.” Of course it was from England – they seem more aware of the importance of caregivers than the US. The domains were support for caring, caring choice, caring stress, money matters, personal growth, sense of value, ability to care (competence) , and carer satisfaction. I didn’t take it. I could tell by the questions I’d come up with a pretty lousy quality of life by their standards
The domain about personal growth annoyed me. Not only am I supposed to meet all the patient’s needs but I am also supposed to grow and learn from it? Really? Just lay another responsibility on me!
Here are some of the things that come to mind as I think of what influences my quality of life:
- how many moments of a day can I feel joy, or laugh
- has Larry smiled today
- how much do I feel loved
- do I feel valued by the patient and family and health care system
- how many social interactions with the patient do I have (not just caregiving interactions)
- how many social interactions with people other than the patient do I have (could just a visit or just saying hello while walking the dog)
- do I/we have time and energy to do something interesting
- how much risk do I feel while caring
- do I feel cared for
- level of freedom from caregiving
- weight of other responsibilities – house maintenance, bills, etc.
- how much family and friends see and understand and care about my situation (not only the patient)
- how much sleep am I getting
- how loving do I feel
- how hard or easy is navigating the health care system to meet the patient’s needs
I won’t add how hard or easy is navigating the health care system to meet caregiver needs because I haven’t found anything in the way of support for me, except the respite care offered through hospice. Oh, and the nurses did bring me coffee in the hospital.
I feel like I’m missing something in evaluating the quality of my caregiver life. Anyone know what that is?