This is a page for the Huntington’s Disease community. What you see above in the header is Kalamazoo Psychiatric Hospital. It’s where my grandmother spent the last decades of her life, a place I finally brought my mother to in her 57th year. Huntington’s has permeated my entire life, from my earliest days, as it has for many, many others. But it wasn‘t until March of 2013, when my mother had a large meningioma removed that I began actively seeking out the HD community.
For many months I had struggled to determine the best course of action for her care. At the time, she was combative and in a fierce denial about her condition. The after effects of the brain surgery, however, left her unable to deny the disease any longer. She spent a month in the hospital, and several weeks at Blodgett Hospital for her rehabilitation care. I cannot express enough how wonderful my mother’s entire team was, and how effective they were at bringing her to terms with her condition. Upon my mother’s return home in April, I stepped down from my retail pharmacy management position and took over as Mother’s primary caregiver.
I am a mother myself, to a young daughter who accompanies me to my mother’s house and is an observant of the daily care I provide. It’s a tight line to walk some days, between assessing the needs of each and caring for both. I feel it’s important for my daughter to see my mother and to see how I care for her. I want my daughter to learn compassion and acceptance.
And that’s really the lens I try to view it all from. But even when we can bolster ourselves against the onslaught of worry and grief, there is still the stress, the anxiety, the little gremlins that chase after our stability and well being. I started this blog because I want to share my journey of care taking, of struggling, of loving, of sadness, of joy, and, hopefully, of contentment and calm. I want to share stories, research, and projects that participate in and support the HD community.
Bridgette Arlee is a home health aid to her mother, who is an HD affected individual,a freelance writer, poet and part time pharmacy technician. She lives in Northern Michigan with her husband, daughter and pack of German Shorthaired Pointers.