As the partner of and caregiver to someone with dementia, I have come to appreciate and value the supports and friendships that develop by meeting regularly with others in a similar situation. Whether via Zoom or in person, the shared insights and experiences can often be profound. The empathy runs deep and there is an immediate recognition as we listen to and describe our journeys. It helps to ease the sadness and challenge of an often-difficult transition.
There are joys and sorrows, happiness and heartbreak as we share this dementia experience with our loved ones and others. There are changes and losses to be sure, but they are usually slow and incremental. I have come to realize the importance of appreciating the present moment whilst also planning for the future. It is all too easy to miss a happy experience or feeling as we get caught up in the minutiae of caregiving. Knowledge and information are crucial but living in the here and now, sometimes allowing our loved one to take the lead, may help to ease the anxiety associated with caregiving. The old adage of “one day at a time” is a helpful guiding principle for most of us.
As caregivers, we become quite knowledgeable and even expert at recognizing the changes that occur with dementia and adjusting to the changing needs of our loved ones. I wish I had known more as I witnessed a friend’s journey with her husband’s dementia. I would have asked more questions and offered more of my time. “How can I help?” or “What can I do?”
We know that everyone’s journey is different and what you come to learn about dementia may not be your experience. But, the similarities and emotions felt are more than enough to help guide you through your own lived reality.
Changes in the brain with dementia may be limited to one or two areas or dispersed more widely, but the essence of the individual is preserved and can often be reached by using prompts, memory cues, art and music.
“Being in the moment” as we sing, as members of the Voices in Motion choir, releases a range of responses and emotions. A smile, laughter, recognition of the music and lyrics thought to have been forgotten. But, most importantly, being together as we sing, as we share, and as we understand.
Caregivers look for and find support in different ways. For me being part of the Voices in Motion caregiver support group has been important and something to look forward to. I would like to thank all those who have contributed to making this such a meaningful part of my week.