The following was written by Len Koretsky, a board member of the Family Caregiver’s Network Society, in the early 1990s. It describes his experience as a caregiver and sets the stage for this section on Moving from home to facility.
About sixteen months ago I placed my wife, who has untreatable dementia, in a long-term care facility. Time has blurred some of the everyday trauma, stress, and struggle I went through bringing my emotional self into harmony with my intellectual understanding that I could no longer care properly for my wife. I had to place her in a care facility. I had done all I could do.
I can remember the physical changes and the mental changes I went through as I had to forge a new way of living for myself after placement. At first I was euphoric - I was free - no more having those daily, every moment, demanding caregiving responsibilities. This new found feeling of freedom soon changed. I was alone. I missed my wife. I had to begin to live another lifestyle.
Changes are frightening, scary, maybe depressing for me. I tend to resist change.
I spend lots of energy in accepting change. Changes such as: CHANGE in my status to living alone - now a single person. CHANGE - always ongoing - in the relationship with my wife. As the dementia progresses, her behaviour, her appearance change, and Ilearn to accept where she is at today. My attitudes toward caregiving are changing. Caregiving is no longer my way of living, just taking care of her. CHANGE in my health. I began to have lots of medical and dental problems. I had prostate cancer requiring radiation treatment. Sickness was more frequent. CHANGE in family and friend relationships as we responded to each other. CHANGE in my needs - emotional and physical - and wanting to fulfill them. I had my life to live; caregiving had to be incorporated into my new lifestyle.
Oh yes, caregiving does not end with placement. I visit my wife regularly - well, almost regularly. I am involved. I want to be involved. I walk with her - we hold hands - she is constantly walking. I talk to her - at times; sometimes I kiss her. I help feed her. I talk to the other people in the facility. I consult with staff and her doctors. Caregiving has changed. I think each of us caregivers has to search within ourselves as to how we will handle this new caregiving role - another stage of caregiving.
These are significant issues for me; they need resolving. My support groups are helping me; minimizing my guilt feelings in this new caregiving role as I become more active in social and community activities and groups; as I get back to my hobbies again.
I have had the wonderful fortune of meeting a most exceptional woman. We have just returned from visiting her family in Calgary; my family and friends in Boston and New York. My first vacation in four years. The first time being away from my wife and caregiving.
These are positive steps in my moving into a new lifestyle; into a more satisfying way of living; into incorporating my caregiving. I am still on this journey; it is exciting. I am still working through the many changes I face. My caregiving did not end after placement. I am still a caregiver.