Even though at the family meeting we all heard Mary Ann say yes, she would like to have the Do Not Resuscitate order in place, it is not easy to formalize that decision. There is a paper to be signed and witnessed by someone outside of the family to make it valid. It can, of course, be rescinded at any time.
It was a help to have a long conversation with our Cardiologist who knows Mary Ann’s situation intimately. It was almost seven years ago that she went into the hospital through Emergency with Congestive Heart Failure. That was his first exposure to the complexities of Mary Ann’s unique situation. He is the one who said she was within a hair’s breadth of going on a ventilator at that time.
It was then that the silent heart attacks were discovered. We apparently assumed it was just bad reflux from taking all the medications every day for the Parkinson’s. The Cardiologist confirmed just how unlikely it would have been then to imagine that almost seven years later, she would still be here and we would be having today’s conversation. In fact, he admitted that while none of us can predict such things, even with all her heart problems, he does not expect that to be what finally ends the journey for her.
Mary Ann is one tough Cookie! I respect his assessment of the her situation. In fact it encourages me that while Hospice works with a six month trajectory, Mary Ann may have a different idea. As difficult as this is sometimes, I would rather continue for a long time than lose her.
In fairness to Mary Ann, we need not to do things that could prolong her days past her ability to have some quality of life. Yes, we seem to have moved into the last leg of the trip. We need to be realistic and put in place plans that fit those circumstances. We do not, however, have to assume any specific time frame. We can’t know that. While we are here together, we are here together. It is not that somehow there is less of Mary Ann because she has a cluster of health problems that seem to be moving into the end stage.
Earlier today I read a post in the online Lewy Body Dementia Spouses group that was a lengthy article that was published in England containing a detailed description of LBD and stories of folks who have had it. It was interesting to see in such specific terms so many of the problems Mary Ann has, especially the hallucinations and delusions. Mary Ann’s is a textbook case. The article pointed out that the whole person is still present in someone with LBD pretty much to the end. That whole person comes in flashes or for longer periods of time, without warning when that whole, lucid person is about to return or about to leave again. It is confusing but at the same time comforting to know she is likely to still be with us some of the time to the very end.
One thing about which the Cardiologist was adamant was to let go of the heroic measures and do exactly what the Hospice folks asked us to do. Call Hospice, don’t call 911, don’t go to the Emergency Room, don’t use the paddles, don’t do CPR, don’t go to the hospital, don’t insert a feeding tube or other mechanisms for prolonging days that are coming to an end naturally as her body winds down. Yes, use every medication available to treat immediate symptoms. If there is an infection, use antibiotics. Control pain to the degree possible. Gratefully, most of the things above are already in the pretty standard Living Will Mary Ann and I had done by a local Attorney credentialed in Elder Law.
It was very helpful to have confirmation by the Cardiologist that we have made the right decisions along the way. In Mary Ann’s case the combination of End Stage Parkinson’s, Parkinson’s Disease Dementia that is progressing rapidly, and a Cardio-Vascular System that is well past repair, made the decision process less challenging than others might have.
With all that said, this is Mary Ann we are talking about. Seven years from now the Cardiologist and I may be having another conversation about Mary Ann much like today’s –” Who could have guessed seven years ago….??”
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The Caregiver Calling 