advanced directives

I went to a program this evening on end of life issues put on by our community interfaith organization. The two panelists were a hosptial chaplain and a professor of nursing who specializes in policy. I asked what happens when a person prepares a clear advance directive about medical treatment at the end of life before they develop dementia, but then as the dementia develops they might change their mind. Both speakers answered that if doctors certified that the person was not able to make decisions for themselves then their earlier directive should be followed.

But I don't think it is so simple. When we are adults at the height of independence we think that we would never want to live dependent and not in control of ourselves. But perhaps the spiritual lesson we might learn towards the end of life is that we don't have to be in control of everything to have a worthwhile life, to have value. I do think it better to die of something else first than to die of Alzheimer's, as my grandmother did. But I also don't think a statement in advance that "I would never want to live like that" is necessarily worth more than what the person is actually experiencing even if their awareness of the world around them has become limited.

weekend away

I'm in Massachusetts for the weekend with our daughter, who was very glad to see me. We talked some about death--some of her classmates went to the wake for the girl from her school who died, and it was open casket. That death was such a tragedy it is not surprising that students said the body didn't seem real.

I said that I believed that for older people a good death is possible. Our daughter thought Florence would be a good example, I think because she has had a full life. I said I wasn't sure Florence was going to feel ready. We talked about my father's death, which was sudden, the way he would have wanted it. We didn't mention John, but it still felt valuable to me to talk about death as something that can be natural and peaceful.

One slide

This image comes from the One Slide Project to encourage people to talk about their wishes for end of life. The idea is for people to spread the word and add this slide to Powerpoint presentations they are giving.

We can say yes to 4 and 5, but I don't feel I have enough information on 3. I've worked some on writing out my wishes for myself.

confused day

Yesterday John was having a bad day. He was still asleep when I left early for work, so all I know is that he missed an 11 am appointment. His 96 year old aunt already had a document giving him power of attorney in both legal and medical matters but I wanted that modified to list me as a successor if he can't do it. They had an appointment with the lawyer to sign the new document.

I got home at 2:30 to go up to our son's school for a 4:30 appointment. John wasn't quite ready but the main reason we were late was unexpected traffic, due to accidents in the heavy rain. Driving up John asked confused questions about several topics. Finally I asked him if he knew of a reason why he was having a bad day. He said he didn't know the reason but he certainly was. We did enjoy the play our son was in: "The Complete Works of William Shakespeare, Abridged."

While we were driving, John and I did have a conversation about death, which feels valuable to me as a way of being on this journey together. I had sent him a link about Voluntary Stopping of Eating and Drinking but he hadn't read it. I am interested in the philosophical question--if one believes in leaving death in God's hands then what interventions can one refuse? A feeding tube? Antibiotics? IV fluids? Food and fluids? It seems to me very hard to draw a line. John commented in several cases that he thought that would be a painful way to die. I said research suggests it is not painful for the frail elderly, but I don't think he was convinced. I have the text of a couple of articles on that--email me (pam55sc at gmail) if you want them.

feelings

I've been low this week. I think the conference made the future of caregiving realer to me, plus I feel that expecting John to do some things himself without me urging him isn't going very well. Yesterday a friend told me how when she was 17 and caregiver for her mother with multiple sclerosis, she said "I can't do it any more" and her mother took an overdose of sleeping pills. I was able to talk about that with my peer group of spiritual directors today and I said: "When the synchronicity is that strong what can you do besides remember to breathe?" If I can synthesize the answer I heard, it was that we can trust God to guard some thread of meaning in our lives.

Still on the difficult topic

I realize that I feel so scared of John's intention to end his life before reaching the later stages of dementia because in some primitive place inside me it feels like I am a child who said "I wish you would die" and the person died. That may come from confused feelings from my own childhood; my father died in an automobile accident a month before my third birthday. Both my fathers died suddenly--my (step)father died of a massive stroke while traveling almost exactly three years ago. I wished I could have said goodbye.

further conversation about difficult issues

John and I had another conversation today with the therapist about John's intention to end his life before the dementia gets bad. Today we were also joined by our pastor, who was for several years director of a suicide hot line.

I wanted John to hear my feelings that there is no way he could end his life without it being physically and emotionally messy and terribly hurtful to me and our kids. The thing that did get through to him was that I would feel rejected by him.

He talked about the death of his parents when he was in high school and college. His father died unexpectedly of a heart attack, his mother died a lingering death after a car accident. Both were horrible experiences for him. I don't think he can believe that a peaceful death is possible. He also does not accept the idea that he could have quality of life when he is no longer himself. I spoke of how I have come to understand facing our own deaths as a period of learning to give up control and trust God, but that didn't mean anything to John.

The pastor believes that my views and John's are two positions on a continuum of possibilities and if we keep talking we can come to a shared position. I asked John if he was open to the possibility of changing his view and to my surprise he said yes. I said I was open to changing my view (I do believe in theory in his right to make his own decision). But it is hard to imagine a shared position because there is likely to be so large a gap (I'm guessing three years or more) between when he goes past the point of being able to end his own life and when death can come naturally by withholding treatment. He doesn't want to live in that condition.

further conversation

I told John that he may believe that ending his life (he is clearly talking about some years in the future) would be the right choice for him, but he should not believe he is doing it for his family. I am confident I am well on my way to knowing how to care for him through Lewy Body Dementia, to a natural death, without it being emotionally or financially devastating. He said he wasn't convinced that was possible. I gave him a couple of examples and what seemed to make the most impression on him was my confidence that even if he got violent that could be controlled by medication and after a while he would come out of that stage. Sometimes I feel that reading the Lewy Body caring spouses Yahoo group means I know too much too soon. But here that knowledge was valuable.

I am off to a retreat for the weekend at a place that has been an important spiritual home for me. They have decided not to take guests any more after this weekend. I hope this weekend I will be able to grieve that loss.

difficult conversations

I'm going to repeat what I posted to the Lewy Body caring spouses group because I don't feel very safe writing about this and I got a supportive response there.

At a session we both had with the therapist today, John said that he doesn't want to end up bedridden or not recognizing anyone, he wants to end his life when he is reaching the point of no longer being competent (which we both expect is a number of years away). My own beliefs lead me to discourage that but in the end to respect his decision if that continues to be what he wants; I realize that other people have other beliefs. He doesn't expect me to assist him and I don't think I would be willing to go there. My question for this group is whether people commonly carry that intention out, or whether it is much more common to have that intention and not actually carry it out. I'm guessing that I can't plan on it actually being what happens.

Confused feelings have been churning in my mind, and I was brave and asked for help, called a friend/pastor and arranged to meet her at a coffee shop this evening to talk. She actually turned out not to be the best person to talk to because she knows too much and so I felt pushed. She ran a suicide hotline for three years and has experience of several other sorts. She believes that we can talk about it as a family and come to a decision that we all can accept. But right now where I am at is that my emotional reactions and my intellectual beliefs are so contradictory.