Coping Mechanisms

Grief Never Ends... But it Changes

Dronma

My coping began the moment I heard that my mom was diagnosed with a disease passed on from her father (my grandfather) who I did not know. It was a message no child in her late teens could process easily. My response was a combination of shock, fear of the unknown and all of the implications to follow. My sister’s response was similar but we expressed our reactions differently. This was the beginning of my coping with a disease that would consume the next few decades of my life caring for my mother and sister thereafter in mid-life.

I was thrust into being a caregiver for my mother while finishing high school, working and starting college. I took numerous responsibilities and duties while growing up in a single parent household with all the struggles. My coping skills were expressed through my aspirations and determination to put myself through school while gaining professional experience. This consumed most of my bandwidth while dealing with hard realities. The story repeated for me again back to back into mid-life and can go on…

Coping is an interesting topic because it is only in reflection after years of caregiving and grief that I am able to pause and think about the journey. All said, coping is accompanied by grief that we may not even be aware we are processing until much later long after being in the midst of several demands on our emotions and time “doing” instead of “being”.

This is the beginning of a conversation and feedback is welcome from others who may be affected directly or indirectly by sharing your story. I think coping begins with reflecting on the experience that we ultimately “accept” as part of our life path and revelations.

It is never too late to reduce stress, prioritize self-care and discover inspiration. I started with nature and quotes.

“Grief never ends … But it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith. It is the price of love. —AUTHOR UNKNOWN”

Letting my Mind Wander to Unravel Itself

Tara

Probably like most folks reading this blog, there are many days that make me feel like I am living under the dark shadow cast by Huntington’s disease. When I feel that shadow overhead I try to keep it in check by doing different activities, the one I chose depends on how much I feel the need to shake myself up to feel better.

Some days all I need is a quicker-picker-upper, so I will blast out one of my fave Pink tunes, sing along and dance around the house – Blow Me One Last Kiss is one of my faves for that. I used to be a long distance runner and that was a great way to let my mind unwind. Now I take long walks – no music, just let my mind wander to unravel itself.

Coloring books are a good way to switch gears in my brain and stop me focusing on negative thoughts, as is watching a 5 minute comedy clip on YouTube. I love the Saturday Night Live skits, perfect for a belly laugh and to help calm me.

And sometimes I just need to talk it out. So I will video chat with an old friend. A friend who knows my family, those who have passed and those who are battling HD. I can talk about what’s going on inside my head and not feel judged in any way, because they know my family and they care about us all.

Advocating for HD as a Way to Cope

Kathleen Langley

In hindsight, my coping mechanisms probably started the day my mother told me that the illness my father died of was called Huntington’s disease. I had told her I was thinking of having another baby. She asked me to sit down as she needed to tell me something. According to Mum that day, they had decided not to tell me precisely what my dad had been ill with or died of because I already had children and didn’t want to worry me unnecessarily, when there was nothing, I could do about it. Testing wasn’t available at that time, so I would have worried about my children as she was doing.
At the time of my parents having children, the details had been sketchy around my grandmother’s illness and death, with nothing being said to me and my siblings about her passing which was when I was still a baby, and we were brought up not to ask questions, and although I was a curious child, I knew nothing more than she had been a good seamstress before becoming ill. Read more…

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