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Keeping It Together: You are not alone!

It is not unusual for family caregivers to feel isolated and alone. I felt alone while I was caregiving. Before the millennium, I was a caregiver for my father. He lived the last four years of his life with dementia. Since my mother died years earlier, the responsibility fell upon his children to provide for his care. As one of two siblings, I was his primary caregiver.

My dad, Hershel Silverberg was a wonderful man. He always had a smile on his face and kind words for everyone. Prior to becoming ill, he lived on the second floor of his triplex as a social widower. One of his regular visitors, pretty much daily was his brother, my uncle. They played dominoes their way counting points. I enjoyed coming over and joining them in a game of dominoes. The neighbours who lived above them and half his age, remarked admirably that my dad in his 80's received more visitors than they did. Hershel really liked people and being with people.

When my dad's memory loss was beginning to progress, he was managing in his apartment, having hired a wonderful housekeeper and companion. My uncle continued his daily visits and for as long as my dad was able, they played dominoes. As the months passed, my dad became more forgetful and disoriented. I was psychologically losing him. He became a grave concern for me that weighed heavy. I was in university as a mature student, not yet working as a social worker. Like so many family caregivers, my education in dementia came from on-the-job experience witnessing my dad's decline.

Early one Saturday morning, I called to check in on Hershel but there was no answer. I tried a couple more times but still no response. Up to this time, my dad could be on his own when the housekeeper was not with him. I became tense and worried wondering if he went out and got lost in the community. I was not certain what he was capable or not capable of doing. Living a half hour away, I drove over to an empty apartment. In his bedroom, his shirt drawer was open with many shirts unfolded and scattered on the floor and his bed. Being Saturday morning, I thought he may have gone to the synagogue in the neighbourhood. I was so relieved when I walked over and saw Hershel inside. He was safe and I needed a vacation from this episode. I could not tell my dad to let me know where he was going because he would just forget. It was then that I spoke with my brother about around-the-clock supervision. Eventually, as the disease progressed further, we moved Hershel into residential care.

My uncle came every day and played dominoes with my dad in the residence but they could no longer play counting points. As the illness progressed, Hershel eventually could not play the game at all. Instead, I used the familiar domino tiles as a mind game, having him tell me how many dots were on the tiles. When he could no longer count the dots on the domino tiles, we used the tiles as building blocks. Just like other family caregivers without formal dementia care education know, I knew to be where my dad was in cognitive ability.

Daily living during that time was a challenge, witnessing the decline and taking on the responsibilities of providing care along with other challenging responsibilities. I was walking around in discomfort like there was a "grey cloud over my head" and feeling very much alone as a devoted daughter. Even though I utilized resources, I still felt alone. My dad stopped speaking a year prior to his death. He did manage to respond with "I love you." to my "I love you." at the end of each of my visits. Hershel left a wonderful gift with his last words to me "I love you more."

The emotional experience of providing care is so different for family members than it is for trained professional caregivers. Upon reflection, I came to assess and acknowledge that my feelings of loneliness stemmed from the circumstances. Unlike my mom who died days after having a stroke, I was slowly losing my dad. I acknowledged there were so many losses I was experiencing stemming from my dad's illness. The losses from the disease's progression were ongoing - from memory loss to loss of communication to the decline in quality of life. I lost freedom and time. Due to the caregiving demands, there was less family time and time away from work. I also had to drop university courses I was taking as a mature student pursuing a career in social work.

Underlying the circumstances of loss, my reaction to the losses and means of coping were what made me feel so lonely. I had support, reached out, utilizing resources, but I felt as though it was not enough. Everyone's life was easier than mine - inaccurate thinking. I lost sight and did not acknowledge that everyone was dealing with their own challenges. Since they were not my challenges, they did not seem big at all - not like mine. Nobody had problems like I had problems. The reason my problems were so big was because they were mine and I had to deal with them. I now acknowledge that life includes suffering not only for me but for everyone and I was not really alone. Unfortunately, this revelation came to me some time after my father passed away.

After my father passed away, I completed my education, and graduated as a social worker. It was not until I was being trained as a community outreach social worker in dementia care that I really could see how my emotional experience as a family caregiver was like so many daughters, sons and spouses dealing with family members living with dementia. I felt a sense of relief assessing that my worrying, sorrow, frustration, guilt, etc was "normal" under the circumstances. At the time, I could only see my circumstances and my attitude did not allow me to see others. I was not really alone. I continue to draw from my own personal experience in assisting other family caregivers of the chronically ill. You are not alone.

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