My Sweetie now whispers in the sounds of silence.
September 1946 – January 2016
Since May 2012 I have assumed the role of caregiver for my sweetie (husband) who fell while walking our beloved cockerschnoodle, Chaos, hitting his head and suffering a severe traumatic brain injury. Brain scans showed abnormal ventricular size. Combined with symptoms of incontinence, unstable gait, balance issues and declining cognitive abilities he was diagnosed with an uncommon form of “reversible” dementia called Normal Pressure Hydrocephalus (NPH). Two brain surgeries to treat NPH, one brain surgery to drain a subacute subdural hematoma that shifted his brain 14 mm off its’ midline, months of rehab, lung cancer diagnosis in 12/2013 resulting in right lung removal (pneumonectomy), and 4 adjuvant chemotherapy infusions later, he has disproven all predictions that he would never walk, work or drive again and require nursing home level of care. Well, I drive him back and forth to a workplace that he walks into where I believe his colleagues are drunk with admiration because they seem to be oblivious to the massive cognitive impairments and physical changes that have taken and continue to take place.
In order to remain strong and sane enough to handle the life and relationship altering changes in our lives I have found several on-line support groups where I express my feelings, tell stories, cry, celebrate, mourn, seek guidance and acceptance, and share some of the darkest and deepest thoughts that now percolate through my daily life. This blog is a compilation of my postings and private emails sent to caregivers I have connected with outside the group. Names, places, etc. have been removed except for the identity of our Chaos and minimal editing of original posting has been done. I hope that my experience will help others on the same journey, those interested in knowing how to survive the living death of caregiving and raise awareness about the devastating diseases that agonizingly annihilate our once vigorous loved ones right before our eyes.
My support group websites:
http://www.alzconnected.org – dementia and caregiving
https://beta.groups.yahoo.com/neo/groups/NPH_Friends/info – Normal Pressure Hydrocephalus Support on Yahoo Groups – Private group, request entry
http://www.cancergrace.org – lung cancer
http://www.inspire.com – lung cancer and caregiving