Hi Ozys! I think ND also stands for No Defense this year 🙂

Finding adequate caregiving help was a major challenge of my wife's illness. In the early years I needed overnight care as I had to travel for my job. That was very hard. Very few would be willing to sleep over -- even though we offered a separate bedroom and bath. Her brain damage made her have sky high anxiety and high activity levels. She was never combative and was always friendly, but also scared all the time. Due to her brain damage she adhered to a phenomenally rigid schedule. The same every day. Everything the same -- same times, same clothes, same food, same beverages, same color lighter for each cigarette break, same words all day. No one really wanted to take on that kind of care. They wanted docile. I had several of our area agencies telling me they refused to provide care for my wife. Period. I finally lost my job when caregivers, who were scheduled, would simply not show up!

Once I was her full time caregiver those same agencies, even when she was in bed fulltime, refused to provide any services to her. Late in her care I also couldn't find anyone, other than one CNA who would come help since she needed two-person transfers and the agencies who would work with us told me they had no one who was willing to do two-person transfers. .

So I did it all -- chief cook, bottle washer, and caregiver. Every other aspect of our lives either fell apart or had to be simply ignored. The isolation brought on by caregiving was a brutal challenge for me as I was a fundraiser, so naturally a real people-person, and losing that was crushing at times.

Our grown children were strong and supportive in a huge way for both of us. My wife would feel tremendous guilt when they would visit since she did not want her illness to be 'their issue', but they kept in good touch every other way.

Sadly, family took a powder. In the 14 years of my wife's battle my sisters never even entered my home. My wife's siblings would come, but they came to 'observe' my care for her and report back to the others. There was no interest in helping, but a whole lot of willingness to judge and report what I was doing.

Same thing with the vast majority of our friends. They simply were too uncomfortable to interact with my wife or me due to her personality change. One old friend of hers from elementary school was a phenomenal support to her and one of my old colleagues was a champion for me. Unfortunately they both lived hundreds of miles away for provided a true lifeline for her and me.

The sense of abandonment my wife felt was a major reason she crafted her own 'celebration of life' service rather than having a traditional funeral, held it in our home, and even instructed me who to invite. It was an intensely sad time, but truly a celebration since the only people in our home were the people who truly cared about her.

Sorry I rambled far too long....I had a tough night and was happy to read you happy response!

Peace and strength