By Sara Lowe

I was recently asked by the Senior Pastor at my congregation-Trinity United Methodist Church in Grand Rapids, to provide the message for a Sunday while he was on sabbatical for the summer. There was a part of me that did not feel qualified to do what was being asked of me. I prayed about it, and after rationalizing away some doubt remembering that church attendance in the summer is not historically high, I felt God nudging me to say yes, and I did. Talking in front of groups of people is something that I am accustomed with, but this felt distinctly different to me than any other public speaking engagement I had done. The pressure was greater and the experience of preparing and delivering the message to my church family gave me a greater appreciation for how Clergy prepare to deliver a message that will touch us each week as we sit in the pew. If you have not done so recently, thank your Clergy for all they do. If you feel moved by a particular message, don’t assume they know, tell them how you feel. What follows is an excerpt from the message that I delivered based on the poem that follows:

The Tapestry

My Life is but a weaving between my Lord and me;

I cannot choose the colors. He worketh steadily.

Oft times He weaveth sorrow And I, in foolish pride,

Forget He sees the upper, And I the underside.

Not til the loom is silent and the shuttles cease to fly,

Shall God unroll the canvas, And explain the reason why.

The dark threads are as needful In the Weaver’s skillful hand,

As the threads of gold and silver, In the pattern He has planned.

He knows, He loves, He cares, nothing this truth can dim.

He gives His very best to those, Who leave the choice with Him.

-Unknown

That is a tall order: let go, let God; accept the sorrows and trust in the beauty of the unseen! I know that there are times when this has been difficult for me and I would guess for some of you as well. Recently, I stood in a room with a family whose mother had just died. In the days that preceded her death some of her family were wondering how God could be in this place. Their hearts and minds were full of questions and they bargained with God – I imagine both silently and publicly. It is not uncommon for people to ask both for their loved one to stay just a little longer, and praying that God take their loved one home. This can be a trying time in which the questions and fears that we experience are both sacred and normal. God knows and cares for us even during this time. When their mother died and the entire family gathered around her bed to assist the hospice Chaplain in anointing her body with lavender the same way Christ was prepared for his burial, there was a peace that had not been there during the hanging on. A peace that was finally found in the letting go. Her daughter said, surely God is in this place and surely he was. They were comforted by the fact that their mother had trusted in the unseen and was finally seeing the tapestry from the upper side.

I will close with a review of the final words of the poem: he knows, he loves, he cares. In preparing for today I came across a blog written by Rick Warren a few months after his 27 year old son took his own life. He describes God’s tapestry this way; “we may never know while here on this earth why we experienced a certain trial, but for those who trust in the Lord, there will be a day when the top side of our personal tapestry is revealed to us.   It will be so beautiful, it will defy description.  Hope isn’t the same as optimism. It isn’t the belief that something bad will turn out well. It’s the absolute confidence that every part of your life ultimately makes sense regardless of how it turns out this side of eternity”.We must always remember no matter what, no matter where, in our joy and in our sorrow he knows, he loves and he cares, nothing this truth can dim.

If this has touched you in some way, I encourage you to share it with others. If you would like more information about our services or opportunities to serve others with our team through volunteering please don’t hesitate to contact us at (616) 719-0919.

I am basically a risk-taker. I think this is to some extent genetic; it’s in my blood. My very own father is a risk-taker– he spent most of his life driving high speeds for fun- he was first an amateur then a professional race car driver as I was growing up. At one point in my childhood, he quit his job in the coal mines to strike out on his own, to start his own business—to leave the safe and known world to enter the risky and unknown.

So, it came as no surprise to me when my now late-stage-COPD-home- oxygen-wearing-father called me up and said, “I’m leaving to drive to a high altitude area in New Mexico tomorrow to see some friends.” (Mind you, we live near sea level in Alabama and he gets short of breath just walking to the restroom.)

Without missing a beat, I said, “Well, OK.” The rest of the conversation was working out the details of how to do this. There was no hesitation, no pause. It was a moment of pure understanding between us- one risk-taker to another.

My sisters thought that we were both crazy- him for going and me for saying this was a fine idea. Most people would suggest that they were functioning from a more rational perspective than we were. I’m OK with that opinion, but I also want to give a plug for risk-taking near the end of life…for those of us who are more willing to live on the edge.

I have long begrudged the fear that often accompanies the frailty which develops near the end of life. I have seen fearless people become wimps, and I hate when this happens. In the years before my own mother-in-law’s death, she was transformed from a fearless-world-traveling-avenger-of-wrongs to a fearful-walker-clutching-kyphotic-elder. This bothered me. I wanted her to leave this world with the same sound and fury with which she roamed the earth for 80+ years.

So, in my father’s case, I was more than happy to see him off on his very risky journey. It felt like a triumph for us both- he was off on a grand adventure and I was happy for him… glad to see him go…to act in the face of his own fears. He was brave. This could very well have been his last trip…ever.

After he arrived back home from what proved to be a very arduous journey, I told him that in the days he was gone, I searched my heart about our decision to let him make this trip.

In my head, I had the same conversation that I have with my “end-stage” patients in the ER : “What is it you want to do with the time you have left? Do it now.”
And then, I told Dad that asked myself the “elephant in the room” question: “What if you died while in New Mexico? What if the journey itself killed you?”

The response, from my heart, was: “Then you would have died the way you lived-taking risks- but most importantly, you would have died doing what you wanted to do. What a way to go…”

My father simply replied, “That’s right.”

Written by Monica Williams-Murphy, MD for oktodie.com

I know an elderly gentleman. He is 85 years old. He is a physician, and he is my friend. One day, he joked about his mother. She died 60 years ago. He said with a slightly wry smile, “I think I’m over it!” He isn’t. He knows it. I know it. And he knows that I know. He likes that. It is our special secret.

Mark is also one of my friends. He was 20 when his grandfather died. The two were very close. Mark wrote a letter of thanks and sorrow to Grandpa. He folded it into the box with the ashes. That letter was buried with the ashes. Then we hugged each other and he cried. Of course we know Grandpa didn’t read the letter…unless he did. I know Mark still hurts. He knows I know. It is something we share. It is good. Mark will not “get over it.” He will grow with it. He will grow into it.

Every loss changes us. We incorporate the experience. It revises our concept of who we are. Self-concept. Self-identity. Every loss is finally a growth experience. In that sense, every loss also makes us more fully alive and unique. That deserves recognition.

Too often, we think of strength as a stoic disregard for feelings. It is the no-tears approach. “Move on,” we say. “Get over it.” Not so fast! That attitude makes it nearly impossible for the bereaved caregiver to feel accepted – accepted by himself and by others. It is an unrealistic expectation. Grief is for keeps, not for weeks. And that’s OK. It needs respect. It is normal. Even in the best circumstances – the well-planned “good death” – the caregiver is left to cope with a weight of conflicting emotions. Each of us has our own time line for grieving. That time line needs permission and appreciation, both from the grieving person himself and from those who surround him. If given a chance, then, emotional strength will show up. Strength comes from working with those feelings in an atmosphere of dignity and compassion.

What is strength? How does it show? In broad practical terms, it looks like this:

1. Having strong feelings that are not necessarily pleasant;
2. Having the courage to become aware of those emotions and look at them squarely;
3. Not being afraid to express them openly – belief in self-resilience.

These are almost inseparable qualities.

The “good stuff” is easy to take and to express. It is the happier feelings. The “good stuff” is the sense of having done it “right,” of having conducted the passage to a “good death.” Pride of accomplishment feels fine. All the details of dying receive attention: advance directives, place of dying, pain control, gentle care, promises made and kept, forgiveness requested and received and offered, permission to die granted, goodbyes said, important people present, after-death care given as expected. More. All of that is a distinct source of self-congratulation, self-esteem, and growth for the bereaved caregiver. It is an achievement. It feels grand and extraordinary. It feels just. It feels moral!

Dealing with the “bad stuff” is not as easy. What’s the bad stuff? At least some or all these:

Guilt (for any suffering that might have been prevented – the what-if’s; survivor guilt);

Anger (at the loved one, because he left);

Sadness (of course);

Fear of abandonment (by the whole human world);

Fear of losing one’s mind (becoming insane; uncontrollable repetitive thoughts);

Fear of inability to recover successfully from the loss (sense of enduring emptiness);

Preoccupation with health (exaggerated concerns about physical illness and dying);

Flashbacks, nightmares, and restless nights…

At first, it is hard for the bereaved caregiver to differentiate these feelings. They are overwhelming. They are usually irrational. They are always excruciating. They are also natural.

Even under the best circumstances, recovery for the caregiver is tough. The “bad stuff” needs attention and expression. The feelings are mixed up, and they are powerful. They feel more than a little crazy. The caregiver needs to be able to face these feelings. Strength is not stoic silence. It is not the buck-up stiff-upper-lip way. It is not denial of pain. And it is not “forgetting” about death and dying.

Strength is having the energy to reach out, to show pain, to ask for a sympathetic ear or two or three. It is unashamed tears. It is the guts to talk about the unspeakable and to know, at the same time, that those words and that talk are survivable. It is the belief in the adaptability of the self. It is the maturity of insight. It is trust in intuition. It is confidence that life will return to some sort of balance, an equilibrium. It will be a new and different balance but a balance nonetheless. It is knowing that the relationship to the loved one endures, but in a different form. Strength is the caregiver’s ability to gradually rearrange the relationship in his mind, internally. It is knowing and accepting that he will never exactly “get over it.” The process takes patience and perseverance. All of this is strength. All of it contributes to recovery – to a brand new and higher level of being well. It is a level that has included healthy grieving. Inner resources have been enriched. Life will feel OK again, and renewed. Refreshed. Death shows us how.

Yes, it’s OK to die. And yes, it’s OK and clearly wonderful to live on.

Dying is a pre-existing condition: we all do it someday. A fundamental fact of life is that it ends (to paraphrase Dr. Murphy). Dying is not a mental disorder, although it is an unprecedented event in the life of every human being. Grief is not major depression. This is so obvious that it hardly deserves a footnote. Grief is a normal occurrence in our lives. By definition, it hurts. It has no automatic timetable for ending. This essay is not an effort to address or rewrite any part of the controversial Diagnostic and Statistical Manual of Mental Disorders (DSM), nor does it reflect on the International Classification of Diseases (ICD). Rather, it is an attempt to broadly view the sense of grief as it is perceived by the close caregiver(s) after the death of a loved one. In addition, it is intended to help the bereaved caregiver to cope with, and understand, various intense emotions – some of which reoccur every year, on or near the anniversary date of the death.

Here is a Dr. Murphy “mantra” from her excellent book, It’s OK to Die. Read it and then reread. Memorize. It will make mourning easier to bear.

Life is fleeting and fragile. Live and love as though every day is your last, or your mother’s last, or your child’s last. Leave no words unsaid, leave no plans unmade. (pp. 19 & 21)

Rea L. Ginsberg is a retired Director of Social Work Services and a Hospice Coordinator http://www.linkedin.com/pub/rea-l-ginsberg/59/34b/

Many of you felt so strongly about the on-going need to underscore ways to help people identify end-of- life maps that I have decided to create a mini blog series devoted to this topic. You already know the power of end-of-life maps, so I will skip the pontificating and just tell you this true story:

An elderly male, Mr Holmes, came to one of my beds in the ER from EMS. He had been having “trouble breathing for a few weeks but it suddenly became worse over the weekend” according to the paramedic.

When I walked into his room and heard the loud noisy breathing coming from this man, I was a bit shocked and thought “trouble breathing” was an understatement. Mr Holmes sounded like he was breathing through a bent straw or something even smaller. His wife had ridden in with the ambulance and since Mr Holmes could only shake his head “yes” or “no” to my questions, I quickly sat his wife down to figure out what was going on.

When asking her questions, I attempted to appear calmer and more patient than I felt. My instinct was to just skip the questioning, excuse her from the room, and stick a breathing tube in him one way or another; but, that’s not the right way to handle these situations. So, I remained calm and got the information I needed to make my next move, or not. These were the key answers I got from Mrs Holmes:

“He has just been diagnosed with cancer, and we know that it’s spread.”

“He didn’t want any chemotherapy. He told them that 88 year old men don’t need that kind of medicine.”

“We don’t want any life support stuff and no surgeries. We have talked about this.”

“Whew.” When my nurses and I heard this, we breathed a sigh of relief. My respiratory therapist, who had given Mr Holmes a special breathing treatment, took my cue to “stand down” and return the artificial respirator that she had already positioned outside the room.

After turning off this “intubate him by any means” switch, we were then able to return our attention to the “big picture.”

It seemed to me that he had developed a rather rapid and progressive airway obstruction likely due to some tumor wreaking havoc in his neck. But his wife had already made it clear that they did not want any aggressive interventions. So, I ordered some labs and imaging studies to see “where we were on the map” a bit more clearly (although his breathing alone suggested that we were imminently close to the end of his road.)

Family members gathered at his bedside as labs and data trickled in. I shuffled the test results in my hands and prepared to go in to greet this now rather large group of relatives.

I walked in slightly nervously and introduced myself. Immediately, I launched into my best “end-of-life map” soliloquy that I could muster at that moment—“this is the big picture,” “these are the supporting data results,” “I think what this means is…”

The family listened patiently to me and finally, the eldest son interrupted me, “Doctor, are you trying to tell us that Daddy is dying?”

Taken by surprise, hesitantly, I simply said, “Why, yes.”

He then paused, and looked at me with a type of compassion and said, “Doctor, we really appreciate you spending this time with us and telling us about his test results, and all. But, you see, we already knew that Daddy is dying, he told us so this morning.”

The greatest power lies with the patient. If the one who is facing the end-of-life can clearly identify the path and the landmarks for his or her family, and if they will listen, then my role as healthcare provider becomes secondary and supportive, not primary and directive.

Mr Holmes’ family didn’t need my map, they had their own, and he gave it to them himself. My job was just to follow him and make sure his journey ended well.

Written for oktodie.com by Monica Williams-Murphy, MD
(As always, names and elements of these patient stories have been changed to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)

When you set out on an unfamiliar journey, you will need a map to get to your desired destination. You may pass landmarks, but not know exactly where you are unless you are able to identify these landmarks on your map. The same is true for the journey of life, and specifically, the path at the end of life.

You may know where you want the path to end (almost instinctively in the home), but unless someone can identify the landmarks for you (i.e. the physical signs of dying), then you may be unable to make the necessary turns and maneuvers to end up where you want to be.

What follows are three patient stories which illustrate the value of a “map” and knowing where you are on your journey toward the end of life:

Each of these stories begins the same way: The patient arrives to the ER. I talk to the patient and the family, and perform an examination, discovering that the patient appears to be in the last months or weeks of life due to some identifiable landmarks (which will appear in italics). I then sit everyone down for a “Where we are on the map” conversation in which I identify the patterns that suggest that the patient has entered their end-of-life pathway. In each case, I attempt to draw the “timeline of life” in visual map-form for them, and then point out how close the patient is to the end, to the destination.

This knowledge frequently changes everything…

Patient 1- Mrs. Wiggins was 89 years old and up until 4 months ago had lived independently in her own home, but then she started falling. Then she stopped walking. Then she stopped eating. Because no one had given Mrs. Wiggins and her family “the map,” the family had chosen to place her in a Rehabilitation facility and now she had a special IV line in through which she was receiving artificial nutrition, and plans were to have a feeding tube placed into her belly next week. She came to the ER that night from the Rehabilitation facility because the IV line had stopped working. In discussions with the family, they were very concerned about the IV, yet in contrast, I was very concerned that no one knew that Mrs. Wiggins was dying…except perhaps Mrs. Wiggins herself.

I asked the family if I could have a word with them outside of Mrs. Wiggins’ room. “I wanted to talk to you about the big picture of what is going on with your mother, Mrs. Wiggins. Everything you have told me and everything that I see means that your mother is near the end of her life. These are the changes that we often see weeks and months before someone dies.”

Eyes became misty. The eldest son said, “That’s what I was afraid of.”

I continued, “We usually know this deep inside but we need to hear it from a healthcare professional to accept it.”

As I continued to talk about the path before them, the son crossed his arms, then squared his shoulders, and a firm resolve began to develop in his countenance. He opened his mouth to speak, and expectantly, I knew what he was about to say….and it was NOT this:

“Well then, let’s take her home”

Shocked and confused, I said, “Excuse me?”

He repeated himself, “Well, if she is dying, then we had better take her home to her own house.”

Without hesitation, he said, “She has been a good Mama and she always told me that she wanted to die at home, so this is the right thing for us to do for her. She took care of us, now we are going to take care of her.”

Of course I was reeling because I fully expected him to say, “Let’s get this IV fixed and get back to rehab.” But instead, this family already had some pre-set goals for the end of their mother’s journey, they just needed someone to tell them honestly “where she was” so that they could make a “U turn” off of their present path and head home to their desired destination.

Patient 2- Mr. Burrows was a humorous giant of a man, smiling despite concerning circumstances. Mr. Burrows had metastatic cancer for which he had stopped cure-focused treatment and had signed up for home hospice services. The problem was that he lived alone and was rapidly becoming unable to care for himself. That morning the hospice nurse arrived to find him on the floor where he had been lying since the day before. Unable to lift him alone and concerned about his living/social situation, she called 911 and Mr. Burrows was brought into the Emergency Department.

“How are you today Mr. Burrows?” I asked.

He smiled, “Pretty good for a man on his last leg.” He continued to make humorous quips and remarked that we had “excellent customer service here,” but he was also unable to tell me where he was or what had happened in the last week or so. It was clear that he was no longer able to take care of himself and didn’t appear to be capable of making rational decisions about his care or his future; so, I called his daughter who was listed as his power of attorney.

She was nice enough, but had no real clue how close her father was to dying. Despite being under hospice care, no one had given this daughter a clear map of the road ahead and it had not sunk in that hospice care meant that we expected him to have 6 months or less of life remaining.

So, I told her.

“You know, for your father to even be a hospice patient, this means that he isn’t expected to live more than 6 months, but I have to honestly tell you that it may be much shorter than this. He has really come to a place where all bets are off, he is far enough down this path that he may live 2 months or he may not even wake up tomorrow.”

The daughter held her hand over her mouth in shock, and a small sob escaped her lips.

Very gently, I continued: “The question we must answer today is- where can he safely and happily live out his last days? “

She responded, “I can’t let him go to a nursing home…I am going to move in with him. That’s the right thing to do…”

In this case, the mapping of Mr. Burrow’s timeline allowed his daughter to make a clear decision regarding his future care and well-being.

Patient 3- Mrs. Smith was a 67 year old female who had suffered a spontaneous brain hemorrhage about 4 months prior, which had left her paralyzed and unable to speak. Today, she was brought in from home by her family who had been caring for her there. They had noticed increasing weakness and cough (probably due to aspiration). Further, they stated that she had lost 20 lbs in 4 weeks and had started spitting out her food.

I sat her family down and this is what I said: “I want to have a “big picture” conversation with you in as gentle a way as possible. I want to talk to you like you are my family, and I need to tell you that Mrs. Smith is near the end of her life.” I paused and everyone held hands.

Her husband said, “I thought this was the case” through welling tears.

Continuing, I said, “A “bleeding stroke” with paralysis is a huge “hit” and now what we are seeing are signs of decline. She is losing weight because her appetite is leaving, and this cough is probably a sign of aspiration and is likely going to occur over and over again before she dies.” I paused to let the landmarks sink in, to become recognizable in their minds.

After I identified the landmarks, I then laid out the optional pathways for them “Now, I can attempt to treat each thing that I see, but it does not change where she is in the big picture, which is that she has entered her end of life path. Actually, if we pursue a cure-focused pathway, meaning treating each thing that arises, we may have short term success in treating the problems, but this pathway will increase the likelihood that she will die in this hospital. In contrast, if we choose comfort-focused care, meaning choosing primarily those medicines which create comfort, this will almost assure that she dies at home. The question is: What would she have chosen for herself? If we could go back in time to before the stroke, and if she could look forward into this moment and hear this conversation, what would she want for herself? What would she want us to do next?”

There was a pause, but then with clarity, her husband stated, “She would want us to just keep her comfortable and go home.”

He then shared his wife’s map with me, “You see, Doctor, we are really fortunate because she already told us what to do or not do when we got to this point, we just needed someone to tell us that we were here. We needed someone to tell us that we had arrived at the place where we could activate her wishes so to speak (to follow the pathway that she had already mapped out for them).”

These 3 patients and their families taught me to never, ever underestimate the power of a map. Knowing where you are and what to expect on the path of life sometimes changes everything.

Written by Monica Williams-Murphy, MD for oktodie.com
(As always, names and elements of these patient stories have been changed to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)