Caregiver Self Care

Tonight was the night of the 2nd caregiver support class and I was again reminded what a difference a week can make. Last week was the first session of the series of 6 and part of me was disappointed that there were only 8 participants (11 this week). 7 were patients or caregivers that I knew from my clinic practice but one was new to me. New to Parkinson’s. And it was her story that stuck with me - - it was people like her that we were trying to reach.

Her husband had been diagnosed within the last year and his struggle to accept the diagnosis had started to take it’s toll on her, as well as their relationship. She was desperate for answers, for an idea of disease trajectory, a chance to help him when the disease was still in it’s early stages and he was stuck in the denial stage of grief and acceptance of the diagnosis itself. Several times she was noted to be tearful when describing their interactions – him struggling with how the diagnosis changed every aspect of his persona - - how he identified himself as a person, a man, a former physician and her struggling with getting him to understand that her only goal was keeping him at the highest level of functioning for as long as possible to enjoy their lives together. She talked about how alone and scared she felt - - how she felt that he didn’t hear her when she spoke about her concerns. She then voiced her concerns to the group about the development of dementia and although she had read the statistics regarding Parkinson’s and dementia on our website, it wasn’t until she heard it from others who had the same concerns or had lived through it themselves before she seemed to find a bit of peace. She also had recently lost her beloved dog, who had been her source of unconditional love and support through many difficult times, including when the diagnosis had been originally made. Despite seemingly finding comfort from the group discussion, she stated several times that she was likely not to return, as her husband was still doing well enough where he didn’t “need” her to care for him and she could wait to attend sessions like these.

Tonight when she walked in to the room, she carried herself with a new sense of confidence. I commented to her that I was happy that she had decided to give the classes another chance and she just smiled. Throughout the class, she was joking and interactive with the others, asking the others questions and seeming to internalize their answers. I had this overwhelming sense of purpose that just maybe we had all made a difference in her journey with caregiving and Parkinson’s disease. She spoke about telling her husband how she felt regarding his future and what that meant for them as a couple - - her fear of the future and feelings of being isolated and alone. Although she did not get much response from him regarding change in his behavior, he agreed to allow her to get another dog – thereby meeting a need that she had told him was then unmet. She had embraced the feelings of fear, uncertainty and doubt and had ensured that her needs were known and met - - the hallmark theme of the caregiver classes. Her transformation and sense of peace were so noticeable that it was commented on by several class participants, including myself. She also had reached out to her adult children to assist in supporting her, validating her feelings and potentially getting through to her husband. She had taken the content and input from the class and it’s participants and had used it to improve her quality of life - - improve her perspective and give her hope. It was people like her that we had been striving to help - - If we can help only one, it was time and effort well spent.