I wrote this on September 12, 2008. I have only edited it for clarity and added to it in the final paragraphs.
I am now beginning to experience care giving from the perspective of “the daughter”. In the past, I have always been in the position of health care professional. I have worked as an Occupational Therapist for over 15 years, primarily with the elderly in a rehab hospital, nursing homes and home health care.
My first step into the world of being a family member rather than just the health care professional was when my grandfather was hospitalized after complications years after an aortic aneurysm. I lived over 600 miles away but was at my parents home at the holidays with my 6 week old first born and we drove 2 hours from where my parents lived to go see him. I had been an OT for 5 years at that time and was on maternity leave, my first break away from the working world since graduating. -let me modify that and say: my first break away from paid full time employment (I was busy working on maternity leave…as caring for a newborn or a child is a full time job.)
At that time, visiting my grandfather, I was hesitant to step in and say much. He was still in the acute care hospital, one setting that I had not worked in and so I felt out of my element, not to mention the nursing baby in my arms.
Eight years later, my mother-in-law, had a heart attack. We live 800+ miles from her and so my husband went out by himself when she had the heart attack. She had been living in an Assisted Living for about 9 months since the family discovered her cognitive impairments that made it not safe for her to continue living on her own. Until she had a heart attack, I was mostly a “bi- stander” giving my input to my husband and and observing how they handled things. As the wife of the youngest of 5 siblings, I was the newbie in the family and although welcomed by all, not fully part of this group of people who had known each other for 20-30 years.
After the heart attack, I felt the need to express my professional knowledge to assist my mother-in-law. Although, I was not “close” to her, this was my husband’s mother and I felt my experience could lend a hand. I felt for her on a deeper level and I had a new view now of how things are perceived from the family members’ perspective. An inside view that I only got glimpses off as a professional.
Now, my father has been diagnosed with Parkinson’s. He is currently active and busy with all his hobbies including golf, fishing and wood working. Both he and my mother are beginning to educate themselves on Parkinson’s and think about their future. My challenge has been that I see what looks like the “inevitable” outcome of end-stage Parkinson’s and wondering how they and I will cope as we reach that point.
I am learning to take it one step at a time. As with anything in life, I need to be here in the moment. As my former Unity minister used to say, “Yesterday is a canceled check, tomorrow is a promissory note…and all we have is today”. All we have is now, the present and it is a gift. Yet, it does not come naturally to live in the moment and be here, now. I continue to learn as a parent, to stop and enjoy the stage my child is in now, rather than wishing for the future or missing the past. I must do the same with my parents. I can offer my father my professional opinion and ideas but it is up to him what he does with it. I can let them know how I can help them but must allow them to decide and to ask for my help. I can step in and tell them what to do, not that they would listen, or I can sit back and do nothing. Or, I can look to the shades of grey, and offer my expertise and knowledge, give them information and let them decide. A balancing act of assertiveness, compassion, love and knowledge.
In the two years since I first wrote this message, I have attended a Parkinson’s symposium with my parents and assisted my mother after her hip replacement surgery. It felt good to assist my mother with returning home from the hospital, getting set up at home as well as providing adaptive equipment and instructions on the safest way to perform activities of daily living (getting dressed, using the toilet and shower as well as maneuvering in the kitchen). The experience was a bridging of my professional expertise as an Occupational Therapist and my new role as caregiver to my parents. I look forward to attending more information and support meetings for my parents and am glad they are able to do all they are at this point in their life.