About Dementia Diplomacy

Chaos.  The cockerschnoodle who rescued us.

Chaos, the cockerschnoodle who rescued us.

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

6 thoughts on “About Dementia Diplomacy

  1. From one caregiver to another, please remember to take care of yourself. You are a courageous lady and I admire you. I hope for continued gains in his health. Another friend of Henri.

    Anne

  2. I have followed your journey through my friendship with your mother. I can only guess how hard this must be for you. As Anne said, you must take care of yourself first, no matter how hard the choices may be. That is the only way you can be there for him to make sensible, thoughtful decisions. My thoughts are with you.
    Linda H.

  3. Thank you for creating this blog and sharing more practical information on NPH than I have been able to find anywhere else. Especially the parts with rants. thank you for those especially. Much love from California, Deborah

    • Dear Deborah.
      Thank you for taking the time to comment on the blog. I started it in the middle of our NPH journey but haven’t added much since then, just some newly stumbled upon references. If you appreciate the rants then I know you are living through something similar. I have found that only those who experience living with &/or caregiving for dementia loved ones can really understand the complexity of feelings, daily life challenges & myriads of decisions that need to be made. I never ever thought I would reveal my life (eventhough anonymous) on the web but finding the ALZconnected.org online support group saved my life, not only for the support but because I was able to retain some self-esteem by contributing & helping others while dementia conquered my sweetie. Please feel free to write anytime. Lovingly…

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