I'm A Caregiver
I am a caregiver. My husband, two of my adult children, and my 6 year old grandson all have DM1. Though I’ve been their wife, mother, and grandmother for many years, it’s only recently that I’ve realized how important the title of my role is … caregiver. And I’ve felt a tug to pay attention to that, and to nurture myself in that role. I’ve begun to realize the importance of caring for myself so I have more reserves to “give care” from, and also the importance of connecting with other caregivers for encouragement and support.
So when I heard about the Caregivers Call-In that was taking place on Nov. 1, I chose to participate. I signed up at the national 2018 Myotonic Annual Cnference in September, but there were also opportunities to do so from the Caregivers Facebook Page, and on the Myotonic website. Once I signed up, I found it was a pretty easy process. I received an email with both a phone number to call if I wanted to participate by phone, and a link to click on if I wanted to participate from my computer. The event was audio only, no video. If done via computer, a list of names appears so you can see who else is participating. I think that’s an advantage in participating via computer, however by phone you do hear the same conversation.
About 8 people participated in the call-in, which lasted for about an hour. Ted Salwin facilitated the discussion, and I very much appreciated how he paid attention to each person who was participating, making sure to ask each one to introduce themselves and later ask each again if they had any questions they wanted to ask.
During this call, one older gentleman whose wife has DM wanted to discuss the possibility of moving into an assisted living facility and what those benefits might be. Though none of the other callers were in the same stage of life, the conversation was informative and helpful for thinking into the future. Later in the call, the discussion turned toward cognitive challenges, especially in juvenile and young adult onset. Time was given to present what those challenges entail, and how to work within them to help our loved ones cope with life.
A Place to Receive Kindness and Friendship
Ted took time to encourage us as caregivers to be sure to take care of ourselves. He said “even if it’s only 5 minutes a day to step away and have a moment of peace”, it’s important. Without our own self-care, we won’t have what we need to care for our families. He also mentioned the importance of providing some sort of positivity to our loved ones.
I noticed that each caregiver has understanding for each other, and easy camaraderie. Even if the topic wasn’t exactly what each person was dealing with currently, the fact that we are all giving huge portions of our lives to caring for our loved ones gave us a bond with each other. This was my first time to participate, and I can see that this will be a great forum to bring questions and concerns as they arise, and also a place to receive kindness and friendship as I walk this journey with my family.