End of Life Care

As a care manager I frequently help families deal with end of  life care.  I tend to think about death as part of the circle of life and try to help my families experience it as such.  As you all know my mother died this past March from pancreatic cancer.  Her passing was not a sad event in our lives.  She spent her final three months on hospice care and never initiated any treatment.  For three months we celebrated my mother every single day.  With the help of the hospice team we ensured that she was free of pain and comfortable.  We told her things we never took the time to say before and she gave us each something to hold onto by letting us know how she truly felt about us.

When she died we celebrated her life with family and friends.  I did not cry for I knew she had lived the life she dreamed of and was at peace and ready to go when the time came.

I am currently working with a family dealing with a similar situation.  Their mom is dying and I have helped the family with hospice care arrangements.  I think they are going to cry when she goes but I know they will have the support they need, from each other, from me and from the hospice they are working with.

Anyway, this is not really what prompted me to write.  I did want you to get an idea of how I feel about death and that I deal with often as a care manager.  I actually wanted to share a story with you about an experience I had tonight.

Last night I taught a class on eldercare survival strategies and there was a very interesting woman in the class.  She asked me about assisted living facilities and I offered to provide her with a copy of a publication that listed most of the facilities in Bergen County.  When the class was over she wanted to ask a question which I encouraged.  She wanted to know how if someone was both the caregiver and the care recipient how they would know it was time to make decisions about care.  I didn’t quite understand the question until she explained that her husband had recently died and she had no family at all…was completely alone in the world except for friends and she wanted to know how she would be able to make decisions regarding her care if she became incompetent.  Of course I asked her if she had a living will and a healthcare proxy which she did.  Then we talked about how if she began to notice changes in her cognitive abilities that she would be able to recognize that something was going on with her and should begin to implement a plan that she should already have worked out.  Of course I suggested that a care manager could help her put a plan together and she agreed and seemed to be totally satisfied with what we discussed.  As it turned out we live in the same town so I offered to drop a copy of the publication off at her house tonight.

So I went to her house tonight and she invited me in and asked me if I had time to talk with her.  I said I could spend some time and sat with her.  As I was handing her the publication I began to tell her that assisted living was not appropriate for her at this point but perhaps a CCRC might be a good option.  But she interrupted me and told me she already had a plan.  She told me her husband died in July from pancreatic cancer and she was giving herself one year and that if after a year she continued to feel the way she felt now that she was going to take her own life.  I wasn’t really sure how to respond to this as she was not actively suicidal and clearly was not a risk to herself at this time.  Why was she telling me this?  By the way I should add that this is a woman who holds a doctorate in psychology.  Why was she telling me this?  She told me she had plan A, B, C, etc and went on to tell me what the plans were.  What was I supposed to do or say?  You see I could see where this woman was coming from as I have often brought up the idea of a suicide pact with my husband in the event one of us were ever facing a terminal illness.  Additionally I have had the experience in my life where I had reached such a dark place that I have actually attempted suicide.

Anyway we talked for about a half hour about how cruel our society can be in trying to keep people alive in the name of God.  We talked about the importance of a solid living will and a healthcare proxy who would really be able to honor and enforce your wishes.  She told me about how the healthcare system had failed her husband and all the suffering he endured at the end of his life.  His suffering was physical (although I am sure he suffered emotionally as well) and her suffering is emotional.  I can tell you that emotional suffering is just as painful as physical suffering from my past experience.  I did not judge her and I did not tell her not to do it.  I listened to her until she was finished all the while wondering why she was telling this to me yet the thought of asking her never crossed my mind.  I told her to call me if she needed me and hugged her goodbye.

There is nobody for me to tell this to who will try to dissuade her because she has nobody and I’m not sure I would tell them anyway.

End of life care in this country…it’s there if you look for it.  But I wonder, is assisted suicide the same as end of life care?  DId I just assist somebody in a suicide?  If I did, I feel no guilt about it.  I do however hope that she is able to find something to hold onto so that next year she is still with us and in a good place.

Tonight’s experience was a very strange one.  I wonder how I will feel about this tomorrow?  I wonder how you feel about it.  I am going to give it a few days and then I am going to call her and ask her why she told me about this.  I may or may not share this with you, but I need to know why?