November 23, 2017

Ask Chaplain Mike: Dying Well

By Chaplain Mike

First of all, thank you for your stimulating questions. I have received several, enough to keep us busy for a few weeks here. I will try to post an “Ask Chaplain Mike” post at least 2 or 3 times a week for the foreseeable future.

As a reminder of how to get in on this and some information about the concept:

  1. Use the link at the top right of the page that says, “Write Chaplain Mike” to send me an email.
  2. Put “Ask Chaplain Mike” in the subject line of your email.
  3. Ask your question. Out of bounds subjects include anything that requires me to reveal personal information about family or friends. Try to keep your question simple enough so that I can answer it adequately in a post.
  4. I am most definitely not an “answer man.” I am doing this primarily to allow our readers some input as to the content of Internet Monk.

Today, I will answer a very personal question submitted by a regular reader that applies to my work as a hospice chaplain.

Today’s Question:

As a hospice chaplain, I’m sure you’ve gotten a question like this before. I think it also ties into the notion of vocation, so I’m eager to hear your thoughts.

A neurological illness somewhat less severe than ALS, but of the same kind, has ravaged my spinal cord, leaving me living life in a powerchair as I lose more ability every day. It has of course been challenging, but I have always had something I could do in response. I have relearned the most basic tasks in dozens of different ways, always regaining a good measure of independence. Traditionally I have started by studying what my elders in the field of disability of accomplished, what tools they used, what equipment and techniques were available, then putting in long hours of practice until I could manage the same. Living with a disability is something that one can be good at, and I have come to be that, as well as being capable of teaching what I know to new people who join the club.

About two years ago, the disease attacking my spine meandered out to have a go at my vagus nerve. In simplest explanation, the combination of progressive motor disability and damage to the nerves controlling my digestive system is slowly starving me. In Paul’s words, “the outer man is wasting away”, although I can attest that even in this, the inner man is indeed being renewed day by day! I am dying, though undramatically and not so fast I’m ready for my own hospice chaplain just yet. I became aware of the situation last fall, and the lack of options in my complicated situation this past winter.

Having had time to get past many of the emotional ramifications, I’m currently stuck at this one, where I finally get to my question: how do I be good at dying? I am confident in the assurance that Jesus won’t suddenly love me less for being cognitively impaired or less capable of outer piety, but I’d still like to run this section of the race well. What does that look like? I feel like I’m wasting precious time, but with my body and mind failing I can’t see any alternative. When you have six months or a year or two years to live, but such little capacity, what do you do in the meantime besides trying not to burden your family more than necessary?

Dear Friend,

Your email breaks my heart. At the same time it inspires me. I commend you for the faith and energy with which you have faced your illness and disability. God has certainly blessed you with a spirit of courage and perseverance. As one who has never had to face such trying personal circumstances, I am deeply humbled by your example. Thank you for sharing your story.

As you face the future and what may be your life’s final season, I also admire your willingness to ask how you can live it well. I often have to convince people that my job as a hospice chaplain is not to talk primarily about death, but to help people live in the last chapter of their lives.

Life is made up of seasons, or to use another metaphor, various rooms in a house. We move from room to room, passing through doors that enable us to leave our former surroundings behind as we enter into new settings. We leave our mother’s womb and become infants. We leave infancy and learn to toddle. One day we hug mom and dad goodbye and enter our school years. We graduate from school and move into adult life. We pass through the various stages of adulthood as long as God allows us to live. As we pass through each door, we leave some things behind, and there is grief. But we also find ourselves in a new place, with new things to learn and experience, new dreams that emerge, new goals to consider, new tasks to accomplish.

Some of us, like you, receive the gift of knowing that we are in the final season of our lives. This gives us the opportunity, with God’s grace and wisdom, to exercise our human capacities for insight, creativity, and action to redeem that season. We know the door that will provide our transition to the next reality—death. But before we pass through that door, there is living to be done.

What I would do as a hospice chaplain coming to visit a person in your circumstances? What counsel would I give you? The first thing I would do is listen and learn. I would try to ascertain what is most important to you. I would learn about your family, your friends, your faith. I would attempt to find out if you have any unfinished business that you would like to see taken care of. I would encourage you to think about any relationships that you might like to celebrate before you die, or on the other hand, any unresolved conflicts you would like to see healed. Do you have any dreams you would like to see fulfilled, any goals you would like to accomplish? Beyond that, it sounds as though you also have a heart to help others. Perhaps your goals will include ways of using your experience to be a blessing to others in some fashion.

Before I go on, let me make something clear. I’m not necessarily talking about big or grandiose dreams or goals here. Many patients I know realize that some very simple things will make all the difference for themselves and others in their final days.

What tasks need to be performed in order to help you and your loved ones face the end of life and take care of the necessary duties that must be performed at that time? Do you have any wishes about the setting in which you would like to be during this final season? In your particular situation, it sounds as though you will be dependent upon others at some point. Do you have freedom to choose and work with family, friends, faith community, and others to see that you will have the people you want around you in the place you would like to be? If so, then I would encourage you to talk as much as possible with the important people in your life to make the necessary arrangements.

I would also encourage you not to wait on making a decision about hospice care, if you think that will be appropriate at some point. Many wait too long to make that choice and fail to realize the benefits of support that hospice can provide. Again, that is because hospice is not just about death, it is about providing support during the final season of life for both patient and those who surround the patient. The question, “How can I die well?” cannot simply be answered in a single message, but must be discovered as part of an ongoing conversation with trusted people who care about you.

If I can be of further assistance to you in a conversation like that, I would be more than happy to do so. Feel free to email me at any time with questions, updates, prayer requests, and stories of what you have found helpful.

The Good Shepherd who calls you forth into this experience will go before you, and I am convinced that nothing can ever separate you from his love. Thank you for your trust in sharing your story with me. I hope you will keep me updated as you are able.

Grace and peace,

Chaplain Mike

Comments

  1. the message this Sunday was an on-going series titled Spiritual Urban Legends. the topic was on faith & the distorted methodology that goes along with it: enough faith can accomplish anything…

    Pastor Brian referenced stories of parents with diabetic children that took their medication away from them ‘believing’ they were healed. in both instances these children died…

    the message though was not so much the focus on the bad things that can happen when believing spiritual myths/urban legends, but ended up looking at Hebrews chapter 11 as the manner which the listed heroes actually lived out God’s purpose for them. it starts off as a happy testimony time chronology of grand things done by specific saints, but it ends up referencing those that while living by that same glorious faith did not receive the promises in their earthly life. they suffered. some violent deaths that i cannot imagine myself having the fortitude to face. they were poor. destitute. no prosperity gospel results for them. there was no avoidance of pain, or trouble. there was constant challenge. and in the end, they too were listed in the roll of spiritual heroes of the faith…

    i believe this 11th chapter of Hebrews is being added to daily as those dear saints which have little or no cause for claiming earthly achievements or successes or are widely known receive the crown of glory for their faith as it was walked out even when they could not physically take a step. they too welcomed home to a cheering throng of witnesses giving glory to God for this one that did not waiver & chose to reflect characteristics of Jesus even in the most limited, confining & oft times humiliating of circumstances…

    i do not understand Your ways O Lord. it is beyond my limited glimpse of Your purposes for my life, let alone those that are challenged in ways i myself cannot imagine dealing with.

    i wish to finish the race i am also on with honor. with or without any fine sounding legacy i would desire for an epitaph. i know at this stage of my life i am more dependent on Him than i was able to recognize when i took that first excited step of faith 37 years ago. what an amazing journey i have been on…

    blessings…

  2. “Some of us, like you, receive the gift of knowing that we are in the final season of our lives.”

    CM, I never thought of this as a “gift” before. I know a lot of people who would prefer to go suddenly, and not deal with the difficulties of processing through the final transition in life. Can you explain further, from your experience, how people have siezed the “opportunity, with God’s grace and wisdom, to exercise our human capacities for insight, creativity, and action to redeem that season”?

    • Steve, you are right that different people have differing perspectives on this as they think about dying. Sometimes a sudden death is viewed as “saving” a family from all the agony of a long drawn out process. But it can also “cheat” a family of being able to say goodbye, to be prepared for the practical details of life without their loved one, to take care of unfinished business of many kinds that may be possible if one knows that final season has arrived. I heard of an oncology doctor who once surprised people by saying he wanted to die a long, lingering death. When asked why, he said, “Because I have seen so many good things happen in families when they enter into that experience and learn from it and process it together.” Of course, from the perspective of our relationship with God, this also provides a unique place in our journey to enter into “the fellowship of Christ’s sufferings.” Perhaps some of our readers have some specific examples they could share.

      • My mother died 25 years ago (I was 25 at the time) of a cerebral hemorrhage. She was in a coma for a couple of days before she died, but far all intents and purposes it was: Bamm – Dead.

        My father died slowly over a period of 3 years due to complications of a rapidly evolving case of Alzheimer’s Disease. So in addition to his physical deterioration, I got to experience his cognitive erosion. I ultimately made the end-of-life decision for him (based on his having declared me his attorney-in-fact years before).

        Neither was pleasant, and I think perhaps sons feel more strongly about their mothers, but I was relieved when my father died and never felt the least bit of remorse in my decision, despite the grief I felt in losing him.

        From my perspective and experience, I personally would rather drop dead, although I think my family would prefer I linger a bit. That seems to be the difference in “preference”: who’s doing the watching and who’s doing the dying.

      • heard of an oncology doctor who once surprised people by saying he wanted to die a long, lingering death. When asked why, he said, “Because I have seen so many good things happen in families when they enter into that experience and learn from it and process it together.”

        like The Gathering: the 1977 ABC made for television drama film.

    • David Cornwell says:

      The possibility of death within a certain time frame can do a lot to focus one’s mind. Eleven years ago I learned I had Colon Cancer. Anyone who has ever been diagnosed with cancer knows the feeling of hearing that news. I had radiation and chemo before surgery and chemo afterward for several months. For several years (and even now) there was chance that it would return. For a long time I dealt daily with the possibility that my days might be limited. I did a lot of soul searching and discovered those things that truly bought satisfaction. At first I was very frightened of the possibility of going through the act of death itself. And then I began to realize gradually that my faith in Christ, his saving power, and the promise of the Resurrection was all I really had.

      I worried about my wife, but knew she could make it without me. I didn’t want to leave her, my children, and my grandchildren. Everything else seemed so little by comparison. We’d never had money anyway, so that didn’t matter much.

      I thought about what I wanted said at my funeral. I’m little interested in the nice words that might be said about my life, although admittedly a few wouldn’t be bad. But not the gushy sentimentalism that I’ve heard at these services. I want the Word proclaimed in the framework of a life on this earth ending and the hope that comes through Him. Any pastor that can’t do that may as well hang it up and find another job.

      I really believe that my life now and the days I have left are much better– much better– because this has been part of my experience.

    • I think age plays a part. An 85 year old has probably arranged some provision for death, has some of his ducks in a row, and hopefully no family living off his paycheck. A 30 year old probably had a family and is unlikely to have provisions or a will set up.

  3. For some reason, I found this to be one of the Top Ten IMonk posts. Maybe it is where my heart is today. Maybe the fact of two aging parents.

    Whomever the reader who posed the question, with this, as Chaplan Mike said, heartbreaking and inspiring story. My prayers go out to you my friend and sibling in Christ. To know that God carries us is a comfort we all need to know, no matter the room we are in.

    The pastor I heard this weekend on running the race talked about a lot of things I needed to hear, except for one…..”God is looking for winners”……dammit. I’m out. Good thing Jesus is our Winner.

    Prayers and thanks!

    • If God is looking for winners, he’s out of luck. And he knows it. Therefore, grace and grace alone in Christ is our hope

    • I hate statements like that. If God is looking for winners, why did Jesus spend so much time with the losers of the world? And why does He command us to come follow Him and die? Sounds like a losing propostion to me.

  4. This was one of the more challenging posts I read and one of the more beautiful posts I have read. I really don’t know what to say…. As I’ve aged (I’m in my mid 30’s…) I’ve realized how pre-occupied our culture is with youth, and even how evangelical culture celebrates youth. Death is not a subject talked about or shared. Maybe that’s why in some of the circles I moved in people hid stories about the ravages of cancer in their family, or other diseases for that matter. The real tragedy is how we treat our elderly. I think it’s a disgrace that they are placed in nursing homes. Our consumerist culture afflicts the oldest among us. What a tragedy!!

    Christianity is beautiful only when it is real. When it’s a show it becomes fraudulent. Death is an act that everyone must pass through. I will die one day, as will everyone else. I think handling death with grace and love maybe one of the most challenging situations for the church. For those being left behind (non rapture talk here…) learning to grieve is just as challenging. Death touches all those around you, and impacts people differently. Today when I talk to my Mom and Dad they tell me about more funerals that they attend. I guess that’s a part of aging. My grandmother’s death was incredibly difficult for it created a void which I am learning to get used to. Today I find other ways to cherish my grandmother in action, deed, and thought.

    If this question is just the opening one…I think I’m going to be challenged by this series that Chaplain Mike is doing. Who knows as we examine frailty, death, suffering, doubt, and see how other people deal with it. Maybe that’s a way in which faith comes alive…through hardship. And yet that’s almost repulsive for me. Maybe it has more a C.S. Lewis feel to it….

  5. One question I do have….how does one handle unfinished business if the other party is not willing to work thorugh those issues either? I’ve though unfinished business is a “rosy we all forgave and everything is going great!!” Life isn’t like that..sometimes people pull away, disown, or cut off communication. How does a person do unfinished business when someone has cut off communication?

    • Eagle, we do what we can. We cannot control other people. But even though others may not respond the way we hope, there is at least the peace of knowing that we extended the offer of reconciliation and perhaps planted a seed that will lead to future good.

    • I heard in my AA/Al-anon days that sometimes it’s the letting go on our part, when the other person has cut off all forms of communications, which also happens when the other person has died. So, like CM said, we do what we can. It’s the holding on and waiting for the others response that kills our hearts and our lives sometimes. Like being the walking dead.

      Just a couple of weeks ago I was having a conversation with the lady who cuts my hair about my dad (a pastor who left our family after having an affair with a woman in the church), and she said to me, ‘I’m sure you’re just waiting for him to say those words you’ve waited for all your life, I’m sorry!” And I replied, “But I won’t. So I’m only doing myself a disservice in holding on to all the b.s. from my chidlhood and waiting for HIM to do something. I’ve got to learn that it happened, it affected me and my life greatly, but I have to let him out of the box I’ve kept him in!”

      All of this stemming from the very fact that I have been kept in a box by other people. But what can I do about other people and their perception of me? Nothing! So what must I do? Allow others the freedom to be let out of the box I’ve kept them in based on their actions that brought me pain.

      It’s like a circle of grace. I’ll let you know how it pans out……it’s a work in progress for me! LOL!

  6. Paul Davis says:

    That almost made me cry at work, CM that has to be the most powerful expression of what Christian love is about that I have ever seen. Both you and the author of the letter, have blessed the rest of us by sharing something so intimate.

    Wow, just wow…

    -Paul-

  7. Thank you, Chaplain Mike, for this post and also to the one whose question prompted it. For some, the topic may be uncomfortable, but it’s something we need to consider for ourselves and also as we wonder how we can help loved ones.

    A few people close to me knew they were dying in advance and made practical decisions in response. More importantly, they connected or stayed connected with family, friends and church so there was no sense of isolation. Rather, there was a sense of completing the race. There was a sweetness in all of this for them and for those of us around them.

    A story that Corrie Ten Boom told in her book “The Hiding Place” comes to mind. When she was a little girl and traveling to the city with her father she told him that she was afraid to die. He said to her, “Corrie, when do I give you your train ticket?” She replied that it was just before they boarded the train. He used this illustration to show her that it is the same way with God. He will give us the grace to die when we need it. This is something I am counting on.

    Another book that is meaningful to me is “Prayer” by O. Hallesby. Near the end he tells the story of an older lady who had prayed throughout her life for the circumstances of her death and God honored her in that. There is nothing off limits to us in prayer — even this. (If we need correcting in prayer, we can trust God to correct us.) My end is something I pray about and I also pray about it for my people as there are a few who may face it soon. I pray that for each it will be filled with the knowledge of his presence and the comfort of the Holy Spirit. I pray that now for the person you have answered in this post, Chaplain Mike.

  8. Patricia Shaw says:

    Chaplain Mike, Thank you for your thoughtful response concerning preparing for life’s finality. My brother Mark of North Carolina sent me the link to your blog for my benefit in dealing with our mother’s decline here in Texas. I very much appreciate all the thoughts expressed, and they are helpful to me.

    Mother’s decline includes hallucinations, fear, paranoia, and nightmares which she has experienced recently. My greatest desire is to bring her to moments of clarity so she will see these situations for what they are. How do I help her through these days? Hospice doctors and nurses have already addressed medication issues. On better days her mind seems clear but she drifts off to sleep quickly, even while we are visiting.

    A scripture that strengthens my heart concerning Mom’s passing and mine is found in Isaiah 46:4

    “Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and will carry you; I will sustain you and I will rescue you.”

    Thank you for helping me prepare for my mother’s passing. Patricia