Wednesday, March 18, 2009


I have wanted to write about my work with "Sean" many times in the past 9 or so months that I've know him. For some reason, I've held back until now. He is one of those patients that slipped in to my heart, along with his wife "Sharon". It's been a little too tender to write some of my thoughts down but I want to give you a glimpse. Sean is in his early 50s with early-onset Alzheimers, such a cruel disease. Before he was diagnosed, Sean worked for a Fortune 100 company and was at the top of his field. He and Sharon have been married for almost 25 years and have 2 daughters. Sean and Sharon have contributed a lot towards educating the public on just what early-onset Alzheimers entails and advocating for research funding. They did a lot for the early-onset support group and Sean was enrolled in an experimental study. Sharon devoted herself to caring for Sean at home until her health started to suffer. She then placed him on an Alzheimers unit in an assisted living facility, almost a year ago. His disease has steadily taken over since that time and now he is actively dying.

The interesting thing about Sean is that, while most Alzheimers patients would never know our names, he has always known and recognized his hospice team. That part of his memory was not affected. Sean is mostly nonverbal but every once in awhile he would say something completely in character and out of the blue. Just a couple of weeks ago I was giving him a backrub (something I do most of our visits). He wasn't very responsive this particular day and I was wondering if I was getting through to him. All of a sudden he looked at me and said, "thank you." I was floored and glad that he appreciated the backrub! So many memories- tapping our toes to James Taylor's music, walking around the garden area, watching sports recaps while I teased him about the Cubs' poor status. Friday Sean started to have continuous seizures, almost every 5 minutes. For awhile Sharon has felt that Sean has been trying to communicate to her that he's had enough of this. Now his body is in agreement. He's been heavily sedated to keep the seizures under control. It's just a matter of time.

In December I suggested that Sharon and I start meeting one-on-one. She has benefitted from the freedom to say whatever she needs to say and talk about whatever she has needed to talk about. Early-onset families often end up isolated because of all that the caregiving entails. Even once they're not caring for their loved one anymore, it can be hard for them to open up to people who do not understand this particular disease. I really am proud of the prebereavement work that I have done with Sharon. Just two weeks ago she told me someone had said that she needed to say goodbye to Sean. We processed what this would mean and she expressed some of her fears. I encouraged her that she would know when it was time and that she should not put pressure on herself to do it any sooner. We talked about some things she could say now, in case there is no warning when Sean declines. She felt relieved to have permission to do it in her own time. And this past Saturday, she felt that it was finally time to say goodbye. She was able to talk to Sean about the wonderful life they shared together and to let him know that she and the girls would be OK. I spent almost all of Monday with the family, processing different details and supporting the family, friends, and facility staff that came to say their goodbyes. It's surreal, the way it always is when I'm about to lose a patient/family with whom I've worked intensely. Now it's just a matter of waiting. This is the hard part.

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