What Would Help You Do What’s Difficult?
May 21 2012 in Ask Denise by Denise
This week’s New York magazine is out with a cover story like no other. In the article, “A Life Worth Ending,” Michael Wolff details the last years of his mother’s life, which he describes as a “horror show.” “What I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive,” he writes. “Who can accept such suffering—who can so conscientiously facilitate it?” (Feel free to add your story to the article’s comments section.)
When his mother was 84 and suffering from dementia, the author and his siblings consented to her open heart surgery. He writes:
“My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen—but of course who listens to a woman who scribbles such notes?”
The operation successfully repaired his mother’s heart but, as Wolff writes, “left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in free fall.”
I wondered, as I read the article, why health care professionals suggest treatment, like open heart surgery, in situations like this. And, Wolff writes, “It did not once occur to us to say: ‘You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?’”
This morning, after I tweeted a link to the article, I enjoyed a Twitter discussion with @OldbillyRogers (our Old Billy) and a Twitter follower who cares for his wife (@Profmicro). Both Old Billy and @Profmicro wrote about the difficulty of end-of-life decisions. “It is hard to make these decisions in the moment,” @Profmicro tweeted.
It is. It’s torturous. It’s heart-wrenching. It’s guilt-inducing. And, more and more, it’s inevitable.
So, I wonder, what would help you make these difficult decisions? What could change so that others, like Wolff, don’t regret decisions they face when presented with treatment options during the stress of hospitalizations? I guess what I’m really wondering is: How can we make it easier for you to say what can be so hard to say but is just what your caree wants you to say? How can we help you say “No”?
(Note: We’ll talk more about this article during a new segment of Your Caregiving Journey talk show called Hot Topics, which debuts next Wednesday (May 30) at 8 p.m. ET (7 p.m. CT, 5 p.m. PT). Every-other-Wednesday, I’ll be joined by a panel of family caregivers (ejourneys, Jane, Richard and Bette) to discuss news and current events related to caregiving. I think a discussion of this article is a great way to kick off our new show. You can join in the conversation in our chat room or by calling in during the show to share your opinions.)
Related Articles
- Tell Us: What Do You Now Accept? (caregiving.com)
ejourneys said on May 21, 2012
Superb article, Denise. Thanks for this (and thanks to Michael Wolff, for all he went through to put his and his family’s story on paper).
At least one doctor is speaking publicly about this as well:
http://www.ted.com/talks/peter_saul_let_s_talk_about_dying.html
My partner and I have discussed this issue. (In fact, it’s been on her mind since 1982.) We both have health care proxies with DNR directives.
My father, who had worked out the timing and details of (in Wolff’s words) his “do-it-yourself exit strategy,” had received valuable guidance from the Hemlock Society.
As Dr. Saul puts it, we need to have more conversations with our elders about end-of-life issues, beginning with the question, “In the event that you became too sick to speak for yourself, who would you like to speak for you?” followed by, “Have you spoken to that person about the things that are important to you, so that we have a better idea of what it is we can do?”
Saul also emphasizes that he is not talking about euthanasia, but about end-of-life empowerment. Control over the dying process “deprives euthanasia of its oxygen supply,” he says, and he wants to stop the want for euthanasia, rather than engage in the argument of whether or not it should be legalized.
Denise said on May 21, 2012
Hi EJ–In this case, the author understood his mom’s wishes (“her wishes have always been properly expressed”). She also continued to express her wishes–she didn’t want surgery (“She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen”). Her children said Yes when she said No. It’s awful to be in the position of the one who decides, the one who utters Yes or No. And, yet, we are the ones who must speak for our carees. What can change to make it easier for us to say No, just as our caree would want us to?
Trish said on May 21, 2012
Denise, I don’t know that anything would make it easier to say “no.” It’s extremely difficult to do. I’ve shared my experience with my dad’s last few days before and it was gut-wrenching to be the one to say “no.” Dad had refused dialysis for months, wouldn’t do any tests to see if his bladder cancer had returned/moved to his kidneys (his bladder had been removed years earlier) and told me he didn’t want dialysis unless he was “in a coma and he was going to die that day.” I told him it might be too late at that point but my protests fell on deaf ears.
The doctors had warned him that he would die of kidney failure if he didn’t allow treatment. He adamently refused. I found him at his home on Memorial Day 2010 and he was incoherent. The ER docs and nurses all expressed shock he was still alive when they realized what his electrolyte & potassium numbers were. He was in and out of consciousness and clearly was going to die that day (a scenario eerily predicted by dad). The doctors thought putting him on dialysis at that point would give him, at best, a week to live. At that point, I chose to say no to dialysis. Dad had made it clear he didn’t want it for months and months, the doctor also suspected he had cancer which was what was destroying his kidney function. I chose to say no but I’ve second-guessed myself ever since (especially given this was the specific scenario dad had given me).
I probably would have felt better if I said yes to dialysis even if it meant he would have lived another week or even if he died during the procedure. Then I would have known I did everything to the letter that Dad had requested. I said no because it had been his overriding wish to not be on dialysis for those months the doctors tried to get him on it. I also really didn’t want him dying while they performed the procedure to start dialysis. I thought that would definitely be doing something that Dad didn’t want.
Given this personal experience, I don’t think anything would have made it easier to say yes or no (unless it was an answer to the question: “will dialysis help at this point?” which no one could answer for me).
Some things are just tough and you can’t make them better. You just have to get through them and, now, I tell myself I did the best I could.
G-J said on May 21, 2012
While not exactly the same circumstances, I feel like I’ve lived this a few times. So, my answers are that nothing helps and that support helps. Saying “No, we’re not going to do any more” is incredibly hard. There is nothing that makes it easier. However, straightforward information so you can make an informed decision sure helps. We received such information from the nurses when my Mom was in ICU and decisions had to be made. Knowing she did not want a life that couldn’t be lived helped make it a little easier, but not much. Like Trish, I lived with major guilt over the decision even though I know we did the right thing and did what she wanted. I honestly wondered if people would think I had killed my mother.
My Dad was on hospice, and the hospice workers were the ones who provided the support. Technically it was time for my Dad to have his pacemaker checked. They frankly pointed out that the pacemaker for a man on hospice really didn’t need to be checked. Oh…lightbulb moment.
I think the only thing that might make a decision easier would be if medical personnel not only presented the idea of heart surgery on a woman with dementia, for example, but frankly told why you might not want to consider it as well.
Denise said on May 21, 2012
Hi–Thank you both so much for sharing. This is so helpful. Trish and G-J: Would you mind telling us a little more about what it was like for you when you made your decisions? How much time did you have to talk out the decision with others? What resources/suggestions (if any) did the hospital staff offer to you help you with the decision? If you needed time to make the decision, did the staff honor your need for more time? After you made your decision, what did you do?
G-J: How did you finally overcome the guilt?
Old Billy said on May 22, 2012
I don’t know that end life decisions can be made easier or if they should be. It’s a difficult discussion for two cognizant adults to have and when of those adults has begun to experience deteriorating mental functions it’s even harder.
There are legal documents that will help loved ones make the decision; Living Wills and DNR’s. But even with those there is no guarantee the subject’s wishes will be carried out. It’s important to have these discussions early in the Caregiver / Caree relationship preferably before the potential Caree becomes dependant on others.
I understand some people don’t want to think about death. In the case where the Caree finds the topic taboo, maybe the Caregiver by having their Living Will drawn up could draw the Caree into the conversation.
Out of respect to confidentiality I can only address my wishes, which are known. I don’t want any invasive measures to artificially extend my live. Unfortunately I know without a Living Will and DNR there are people in my family who couldn’t follow through on those wishes. I have considered adding a Curse to the legal papers and threaten to come back to haunt anyone who doesn’t follow through with my wishes maybe even damage certain reproductive organs.
Even with a curse added to the documents I have my doubts and I’ve seriously considered scouting for a place to go, after I’ve fulfilled all my responsibilities in this world, where I could dig a hole to climb into and die.
So is anybody interested in hiking the Pacific Crest Trail with me?
Kathy said on May 22, 2012
When it comes right down to it, I don’t think that anything can really be done to help someone make the hard decision to say no. Accepting the inevitable is something each of us have to come to on our own.
Yes, we can have all the legal papers and know the wishes of our loved ones. Our head can tell us what needs to be done but our hearts must follow through.
Some fear death, some fear loneliness, some fear the unknown.
The desire to hold on to life can be so very strong.
I read a lot from other caregivers of dementia.
It is always so sad when a loved one passes on but even sadder when, in particular, I read about an 80+ dementia woman in very late stages. She suffered a heart attack and the family called emergency services for her. As a result, they fractured her sternum and broke her ribs. According to the family member, the lady was in severe pain. The part that stuck out to me the most was the comment from the family member,
“At least she is still here and we have more time with her.”
More time for what? It broke my heart.
I hope and pray and have threatened my own family to never do that to me.
When the time comes for Hubby to go, I hope I am strong enough to say “No, you don’t have to stay here”, with the same strength I had when I got to be there with my own grandmother and then with my mother as they each passed.
Chris said on May 22, 2012
The ‘funny’ thing about death is that it has no ecumenical boundaries; it happens to all of us. How it happens is unique to all of us: just as how we deal with death in a family unit. While religion (can) plays a major role in our fundamental beliefs about death, it really is an individual experience that is formed by our own comfort zone. We can make all the proper plans, have all the documents in place, yet if you’ve not checked your family’s baggage at the door, then decisions are often made that are not in the best interest of the one who is making the transition.
My metamorphosis on death occurred after a semester of Clinical Pastoral Education in Hospice. Fearful of the subject of death and knowing that I was going to end up caring for my friend, Father Orlando, I needed to address my own fears before I could be a part of something that has so much meaning to life. Death is a transition for everyone, and not a subject that is often easy to approach.
When Father Orlando made is final transition, it was an honor to be apart of such a beautiful experience. Difficult as it was for me, when he took his last breath he had a smile on his face. I will never forget it!
What ‘prepared’ us for this experience was that we talked about it, he knew what he wanted, how we wanted it and how he wanted me to manage it. Of course we did not know when it would happen, yet we both knew that it would happen, In reality, no one is ‘prepared for it.’
There was certitude in his desires, and clarity in his wishes. It was his life, not mine. As caregivers, my personal belief is that we help facilitate beautiful sunsets. Talking openly about death is not an easy conversation to have because we are all fearful of our mortality. But it is a conversation that has to be had.
I remember something that Father Orlando’s doctor said to me as we were leaving his office before our journey to Florida almost 10 years ago. “You know…he’s not going to get better, but he can have a better quality of life.” When faced with end of life issues, it is about quality, not quantity.
roaringmouse said on May 23, 2012
End of life decisions in our home have more come up because the doctors told us there was no choice and Hubby was to get his affairs in order. Each time Hubby asked if they were G-d. No? Well then they have to work harder and they don’t get to make the decisions. Hubby’s big concern to me was if he lost all cognition with reality then he wouldn’t be good in life. I support him on that. He is a college honors student with math, science, physics, etc. behind him. He’s a brain. For us, if that day came he and I would want to make the choice…not medical personnel telling us what we are to do. We are adults…let us be adults and make our own choices.
Having only been on the reactionary end because he has escaped or had near misses at least 6 times in 6 years, a choice is one I want him and I to have.