16 Months of Upswings and Downturns

Every stage of this disease is temporary. What doesn't work well at one stage may work well the next. Keep an open mind, open heart, and positive attitude and the best alternatives will present themselves as you go along. Keep the faith! I'm going into my 3rd year of crisis mode, now in the final stages. Everything happens for a reason when you are able to look back on it.

In March 2013, my Gary fell and fractured his left hip and pelvis. After they decided they would not do surgery, he was transferred to a rehab facility...the only one that would take him...he was there for 10 days. They made an error when recording his medications from the hospital and lowered the dose of his Exelon patch by 2/3, from 13.3mg/day down to 4.6mg/day, left him on his own for hydration, dropped trays in front of him to feed himself when he dropped from solid food to purée in 5 days. I noticed the decline, caught and had them correct the medication error, found 2 awful bedsores on his heels and called Hospice. They accepted him immediately, transferred him back to the memory care facility who knew him, and he was touch and go for 2 weeks.  

There is always hope! After that horrid stay, I never thought Gary would walk again, or be off a catheter, but both happened. It is truly amazing what the elderly can bounce back from. That first facility was responsible for nearly killing him, but he recovered, was off Hospice in just over 90 days, and was able to be rehabbed to functionally participate in his care, which enabled us to bring him home after I had our bathroom remodeled to be fully accessible with a roll-in shower. We enjoyed 7 months of upswing after that horrible trauma in that facility, back up to walking on a cane with assistance and feeding himself almost independently. That was such a wonderful honeymoon of borrowed time for him, me, and our 2 adult daughters. It was quite a journey and it was so awful that much of his pain and suffering could definitely have been avoided.  

We kept him home for just over 9 months  Our current situation is Gary was hospitalized for infections in November. He was home from the hospital in time for Thanksgiving, but then began his current spiral of decline with rapid weight loss and signs of brain damage from low oxygen levels they missed in that November Hospital stay. He became incontinent over about 3 weeks and has been fully bedridden since that hospital stay. He's now been on Hospice since December 4 and we have confirmed weight loss of over 60 pounds.

Last month, mid June, he started showing signs he didn't know where he was anymore. At that point, me and my adult daughters came to the conclusion that his quality of life would be the same whether he was home or not, and we were so exhausted. We'd been running our own nursing facility, staffing it with us, plus a 40 hour per week caregiver, and Hospice had provided nursing aids for bathing.  At the point we moved him, I know he wouldn't have wanted to be a burden, and he likely would have scolded us for keeping on as long as we had. 

This move to the Veteran's Home is the first time it's made sense to utilize Veteran's services for his care. They are working so hard to understand his needs and allow us to be daughters and a wife again, vs. full-time caregivers. The transition has been very emotional and a test of trust after we had issues with so many bad facility experiences, but I feel this may work out now. So hard to get over skepticism and the hurdle of the lack of LBD knowledge, but he has the full spectrum of symptoms and is a wonderful learning experience for their staff. They are literally blown away, as we used to be, that he goes for days in a coma sleep, then wakes up and is quite lucid and active for a day when they thought he would never respond again. It truly is amazing when he is able to do that, but the rebounds are getting farther apart and shorter in duration. He will serve to educate for others who come after him. Of course, upon admission we had a very hard time getting them to believe he needed bed rails and mats on the floor for bed safety. 5 days later they thanked me for the precautions. 

The miracle is he's still here. No one has expected him to hold on this long. though he doesn't know where he is now, he still knows who we are and sometimes recalls our visits. Every day is a miracle and we are grateful for any spec of a lucid moment. Bless his heart as he continues on in these final days and weeks.

I had posted this on a Carer support site on Facebook and realized it would be a useful update and synopsis for others. I just hope our story, and this Blog, is helpful to many.