The Oppenheimer Report

First of all, I want to forewarn any of my readers who are averse to discussions about the end stages of life to skip this entry. Many of you may be wrestling with the same issues, certainly many of my peers with living parents are, and I need to put this in writing. To date, the decisions which have confronted me and my sister may be among the most important decisions we have had a hand in making. I said in my last entry that this report is my therapy, and I write this because I need to verbalize how complicated all of this is. If anyone can learn anything from my experience, or at least relate, then that is a good thing.

I’m back in Katrine for a while, and I don’t know when I’ll be called upon to return to Buffalo. Could be a day, could be a week. The waiting is hell. I’ve been down to Buffalo several times in the past month and Mom had reached a new low. Our concern, and the concern of our nurses was that the Lewy Body symptoms had become so bad in the last couple of weeks that my mom was in an almost constant state of agitation. For someone unfamiliar with the disease, this can be ugly. It includes Parkinson’s-like tremors, kicking and flailing, and a lot of strange noises. The mom I knew is almost completely gone now. While she may not have been in any physical pain, she hadn’t slept in five days, was having difficulty swallowing solid foods, and was generally unresponsive and hard to manage. Up until a few weeks ago, she would occasionally “come to” enough to speak and to recognize us. Our goal has always been for her to live out her days at home, and at least one of our nurses is hospice trained. That said, now that the end is near, there are no simple answers for how to properly care for her. The issue at hand: what could we give her to calm her down, help her to rest? This is the point I have dreaded for the past year; the point when I and my sister would be called upon as Mom’s health care advocates to make decisions about her end stage care. There was much discussion about morphine, which accelerates death, and neither my sister Jill, nor I felt comfortable going this way. While my mom’s case is probably a textbook example of why euthanasia might sometimes be the “right” course, we could never in good conscience do this without clear instructions from Mom. That ship has sailed. The neurologist suggested a mild sedative to “snow” her and allow her to sleep. We tried Xanax with limited success. It calmed the agitation, but had other side effects. Next we tried Atavan, which seems to work much better. Given sublingually (drops under the tongue), it is a medication that can be given as needed and in easily adjusted doses. Every patient is different. Mom reacted badly to almost every medication we tried throughout this five year journey, and to complicate matters, as her condition changed, so did her tolerance for certain drugs. I take some comfort in knowing that at least she is calm now, and that her imminent demise will be more peaceful than it otherwise would have been. Not all that comforting, but the best we can do.

The myth with which I deluded myself all my life was that each of my parents would one day drift off and simply never wake up. That was not how it was with Dad; he struggled near the end. One nurse in particular was able to guide him through his last days and help alleviate the anxiousness. He too took a little Atavan near the end, and that helped him with what in medical terms is called “terminal agitation.” Although he kept saying he wanted to die near the end, I don’t think it was until the very end that he was really ready to let go. My mom is a strong woman, and she has now lived almost 20 years longer than any of the females in her blood line. Hers has decidedly been a life well lived, even as we approach this confounding and difficult end. As one of our nurses so wisely pointed out, when making decisions about end stage health care, we can do no better than to disregard what we want, and to focus on what is right for the loved one. Sounds simple doesn’t it? It is anything but. I know we probably made mistakes; there were things I’d do differently had I the chance to do it all over. What Jill and I have learned, and what I hope to impart here is that loving someone does not ensure one does the right thing. That “right thing” may include removing the primary physician who, in our case, completely dropped the ball and failed to admit he knew next to nothing about this little understood dementia. Sometimes it is simply being present, and listening to the patient. Pay attention to the doctors and nurses you trust. Assess the options, and do what is right for the patient. Where my mom is concerned, those decisions became more clear as the end approached. I feel confident that with the care and advice of her neurologist and our wonderful nurses, we have guided my Mom to her end with as much peace as she could hope for. That of course gives me some measure of peace as well. As I write this she is still with us, barely. I love you Mom.



Written by Jamie Oppenheimer c2011 ALL RIGHTS RESERVED