Foresight and Style

Among the many incredible gifts Susan left us was her foresight about what we would need after her death. Her long journey allowed her lots of time to contemplate those needs. Some of the initiatives she took were in partnership with me – such as remodeling the house and minimizing the attention it would require for a while. But she did other things that, even though I might have been aware of them taking place, are only having their impact now. In addition, she taught me how to be more proactive, to look ahead, anticipate, and prepare for things that were never on my radar screen before.

She had an extensive wardrobe. To be more direct, she was a self-admitted clothes horse. But she also had a great sense of style which not only kept her well-dressed, but also kept me from looking like a clueless geek (at least in the eyes of most, I hope). Packing for any trip, no matter its length, was an obstacle course of decision-making for her, complicated by the choices she had. Which shoes should I take with which slacks and which tops? Are we going to any dressy places? What if it rains or snows? What if . . . ? It always took her hours to pack and she was always mildly chagrined that it generally only took me about 15 minutes or less.

Because of steroid-related weight gain, much of her earlier wardrobe became unwearable. Throughout 2008, and to spare me from having to do it, she and her friends worked hard to go through everything and give away most of what she no longer needed. In one particularly meaningful time period last fall, her sister Barb came for several days to help. It was an emotional time and they were as close as I’ve ever seen them, making it a meaningful step in the dying process as well as an exercise in practicality. I will be eternally grateful for Susan’s proactive nature.

There were still a lot of clothes (and shoes) left after she died. After several months of not being ready, I finally decided that the time had come to deal with them. I asked Peg to help – because I knew Peg would take charge, make me her assistant, and tell me what to do. She'd already helped Susan with the bulk of her earlier giveaways in 2008. The act of handling and recording the items as we categorized them was not in itself particularly difficult. But it set the stage for a conversation that we had not been able to have since Susan died. Peg was the first one on the scene just minutes after Susan took her last breath. Like so many others, she had spent time with Susan in the prior weeks and had gained some pretty incredible insights. Discussing those was an emotionally cleansing experience for both of us. I realized in talking to Peg, that Jon and I (and Patrick when he was here) were so busy being stressed-out, exhausted caregivers, that we were unable to appreciate any of the beauty and mystery of her dying process. As a result, I intend to circle back with others who spent special time with her during those final weeks. I think it will help me appreciate a more beautiful picture than the one we saw at the time – and I hope it will be good for them too.

There continues to be no particularly good answer to “how are you doing?” Everything I’ve read about the grieving process indicates that it takes its own time – and I’m finding that to be true. I do feel progress. But almost the moment I acknowledge it, something else reminds me of all that has transpired and I realize there is much more healing to come. It’s a little like hiking in the mountains or in a very hilly area. Just when you think you’ve reached the topmost peak and expect to see a panorama of the world, you discover that there are other, sometimes higher peaks that are still obstructing the view you were hoping to see. I have to remind myself that it’s still a beautiful view, made so by all of the caring, supportive people around me who seem to understand what I’m experiencing.

One of my “summit” moments was particularly remarkable – at least to me. I’m sure only a few people would truly understand it or not think I’ve gone wacky. It was the morning of March 31. I was on my way to work by train. I had finished reading my newspaper and was sitting quietly, aware of the rising sun over my right shoulder and appreciating the beauty of a spring morning in Colorado. I must have been thinking about her because I suddenly felt Susan’s presence leap into the huge hole that her absence has left inside me. At least that’s what it seemed like. The feeling was pleasant and comforting. It stayed with me for most of the day and made me feel like she was intimately close rather than in some elusive, external place waiting to be discovered. In retrospect, it almost seems silly – except for the impact it clearly had on me at the time and the way in which I remember the moment. Part of my awareness that day was a deep sense of appreciation for the courageous and dignified way in which she chose to live with that terrible disease. I’m so impressed with all the things she did for us in preparation for her departure in spite of what she was experiencing herself. I was also aware of the reality that she will always be with me – just not in the way in which I yearn to be.

So – how am I doing? Some days are OK. Some days it seems unbelievable that she’s gone. Every now and then I have a rare melt-down. But the reminders of her wonderful life are everywhere.

And somewhere in the world beyond, she is a model of foresight, organization and style – making things ready for us when our time comes to join her.

Untangling My Strands of Yarn: Reflections On Grieving

It’s been almost three months since Susan died. I’ve been wanting to post my thoughts during that time but I haven’t been able to get them out. I think I finally figured out why. The other night it came to me just before I went to sleep.

In the last few years of her life, one of the things that brought Susan great joy was knitting. Some of you have artifacts of her work, and some of her work is yet to be discovered by future grandchildren or others at some other time. She was prolific until the last couple of months, often working on multiple projects simultaneously. Occasionally, when she picked up a project that she had set aside, she’d find the yarn in a tangled mess. The tangles were particularly difficult when she was using more than one yarn at a time and knitting them together. She would often enlist my help in getting the yarn(s) untangled so she could proceed. This recollection has become a metaphor for my grieving process. My thoughts and feelings have been in a tangled mess, needing some time and patience (and help) to get untangled. The eventual result of Susan’s untangled yarn was always something beautiful – and useful. And so it is that I hope the path of this grieving process will take me to a beautiful, more comfortable place of reconciliation, where more recent events are overwhelmed by memories of our entire 30-plus years together.

My tangled feelings have evolved over the weeks. I felt pretty much OK in the first week or two after her memorial service. Patrick went back to school and Jon was in Uganda, so I had time for introspection. I went back to work and choir and felt more or less normal. But then I began to notice myself wanting to talk to her, to share some story, thought, or event – only to be disappointed at the realization that she wasn’t there. I’d roll over in bed and be surprised to find her gone. Gradually, it began to sink in to my psyche that her physical absence is permanent and that I have work to do in order to get used to it. There are so many things I’d like her to know. They’ve been so snarled up in my head that I didn’t even realize I was experiencing so many different feelings. These are the strands of my tangled yarn:

First of all, the memorial service was incredible. There were somewhere around 400 people in attendance, including a huge family turnout (both from her side and mine) as well as friends and colleagues from our life together and from our respective professional lives. I was particularly gratified by the showing of so many people from my work community – many of whom I would not have expected to take the time to come. Susan’s pre-planning paid off in a big way. It was not only a fine tribute to her, but also a celebration of our humanness as a community. Our friends who spoke or read or sang or played really poured their hearts into it.

There are still lots of tasks to complete. Part of me wants to wave a magic wand and take care of them right away. But part of my growing realization is that the important stuff will get done, the less-important stuff will get done in its own time, and the stuff that doesn’t really matter will eventually fade from my concern. There are of course the financial details and the legal records that must be completed and changed. I’m finally getting near the end of that. Then there is the disposition of Susan’s belongings and figuring out how to run the house. There are so many things she did that I either quietly appreciated or took for granted – but that I am otherwise clueless to replicate. My colleagues at work now have to point out things like the stain on my shirt that Susan would have caught before I left the house! Part of the loss is knowing that many things won’t be done, or won’t be done in the same way. And all of this is taking longer than I ever would have anticipated.

I’m occasionally having what I can only describe as some degree of post traumatic stress disorder. The final five weeks or so were incredibly intense. I sometimes have flashbacks of both the more difficult and tender moments. The night she got so upset and belligerent and wanted to “go home and find her husband” sticks out as bittersweet. The morning she silently placed her hand on my cheek while we gazed into each other’s souls is a treasure. Remembering what she went through is agonizing. Remembering her when she finally let go is indelible.

Then there is the big hole in the fabric of our lives. Her absence is palpable and I miss her terribly. I yearn to interact with her. I try to talk to her at her crypt. Yet, she’s still here in some way – the chills I experience, the dreams I have, the hummingbird images I notice, and the things that remind me of her must all be evidence of her presence. Somewhere along the way it became clear to me how strong our life partnership was and how challenging it is to function without her after 32 years of doing virtually everything together. Sometimes I feel at a loss to make a simple decision because she’s not here to consult. Other times I realize how liberating it is to make decisions for myself and then feel a brief sense of guilt at the realization that she might have preferred something else. Not being in partnership with her is going to be a hard habit to break.

I’m struggling to keep the entire 32 years in perspective. I have difficulty remembering what life was like before cancer. And yet the cancer journey, particularly the way she handled it, became such a defining aspect of her and our partnership. How can such a curse, such a scourge of the human experience also provide such growth and enrichment?

It has not escaped my attention that we’re all grieving together and that everyone who cared about Susan is experiencing something proportionate to her place in their lives. I’ve had lots of conversations with lots of friends and family. Everyone is taking good care of us and each other. Our good friend Susan (TOS or “the other Susan” as we joke) loaned me a really good book of meditations on grieving. (I’ve referenced it under “Good Books to Check Out”.) All of these things reaffirm what I know to be true: we’re going to be OK. People have been walking this path ever since humans have had the capacity to feel. We’re doing what we’re supposed to do and all is right with the universe.

My yarn feels a little less tangled and I’m hopeful that we can eventually knit something beautiful to fill that big hole in the fabric of our lives. I hope your grieving process is moving in that direction too.

New Beginnings - For All of Us

The Susan we knew and loved passed away today. Her long journey is finally over and we are confident that she is at peace. It’s important to note that she did not “lose her battle with cancer”. She beat cancer years ago when she chose quality over quantity of life and lived with the disease far longer than expected. Indeed, her life is nothing short of a triumph. Now we all embark on a new journey – life without Susan’s presence, but with the memories of her that have shaped our lives. Her obituary will read something like this:

Susan G. Moody was known for her zealous effectiveness in everything she sought to accomplish. It was therefore no surprise to anyone who knew her that she lived a full life for more than four and a half years after being diagnosed with terminal stage IV melanoma. Her cancer journey was characterized by her ardent emphasis on the quality of life, not its duration. She died in her home on Wednesday, December 17, 2008 in the presence of loved ones.

Susan, 55, and who lived in Aurora, Colorado was a retired Community Health Nurse Manager. She held two bachelor’s degrees (Zoology and Nursing), two certificates (Medical Technology and Science Education), and an honorary master’s degree in Nursing Leadership bestowed by Regis University in 2004 when she fell just short of completion due to her illness. She began her professional life as a medical technologist for 15 years followed by brief service as a public school science teacher. But her true passion was in public health nursing where she became a subject matter expert in women’s health issues, especially for the under-served population. After first working in the Chicago area where they lived for eight years, she and her family moved back to Colorado where she worked for the Tri-County Health Department for several years before joining MCPN (Metro Community Provider Network) as a Clinic Operations Manager.

Susan was an avid gardener, knitter, jewelry maker, seamstress, reader, and singer. She was a soprano soloist in the Westminster Choir at Montview Boulevard Presbyterian Church, a member of a jazz/gospel ensemble group known as “The Stage Crew”, and appeared in numerous musical productions over many years. She was also an Elder in the Presbyterian Church USA and was elected to Montview’s Session. She served on a committee of the Diana Price-Fish Foundation, a cancer support organization; and on the board of Self Improvement Opportunities, an adult education provider where she also tutored GED students.

Susan married Rob Moody in November of 1978 after meeting him through her sister in 1972. Together, they raised two fine sons, Jon age 25 and Patrick age 22 both of Aurora. Besides her husband and sons, she is survived by her parents, Wallace and Nancy Given of Downers Grove, Illinois; a brother Scott Given also of Downers Grove; and her sister Barbara Wise of Hampshire, Illinois. Her extended family includes numerous cousins, nieces, and nephews.

A memorial service will be held at Montview Boulevard Presbyterian Church, 1980 Dahlia Street in Denver where she will be interred in Montview’s Memorial Columbarium. Memorials and contributions can be made in her name to:

Montview Blvd. Presbyterian Church Music Program
1980 Dahlia Street
Denver, CO 80220-1239

Visiting Nurse Association Hospice at Home Program
Attention: Bob Crump-Bertram, Chaplain
390 Grant Street
Denver, CO 80203

The Melanoma Research Foundation
170 Township Line Road, Building B
Hillsborough, NJ 08844

For Real

On Thursday, November 13th, Susan had a significant new pain crisis that has turned the page on a new chapter of this journey. The standard treatment for pain of course, is to increase pain medication, in this case morphine. The hospice philosophy, which is all about comforting the dying, accepts no excuse for pain. Pain interferes with the important emotional and spiritual work that is being done in preparation for the transition out of this life. The tradeoff with pain management is sleep.

So Susan has been more asleep than not since that Thursday night. Even in wakeful times, she’s still in a world of her own. But she’s perfectly aware of what’s happening and has grown in her level of acceptance. The reason for the pain is undoubtedly disease progression, which means we’re getting yet closer to the inevitable beginning of a new journey for her as well as for the rest of us. Underscoring that reality has been the breathtaking speed of change in the household. Suddenly, we have a hospital bed in the living room, and we’re using more oxygen. Jon and I are taking turns eating and sitting with Susan who is essentially uninterested in food and no longer able to sit at the table. One of us sleeps in the living room with her at night. We have meals and pastors, and professional caregivers coming and going on a regular basis. Friends and family are right here with us both physically and spiritually. Sponge baths and changing the bed and lots of laundry are now the norm. Susan hasn’t been upstairs since Saturday morning because getting her up and down stairs has become too adventurous. Her favorite recliner in the family room seems like a distant memory. Just in the last few days, our lives have been transformed into the picture of in-home hospice that many of us probably imagine – and maybe dread. She has swiftly become bedridden and dependent on us for nearly all of her needs. Susan and I have discussed this picture many, many times over the last 4 ½ years – and here it is for real.

A wonderful friend of ours, Helen, offered an amazing metaphor to all of this. Helen suggests that Susan is in labor again. But this time it’s to give new life to her soul as her body dies. As I was sitting in the living room reading and contemplating our circumstances, trying to decompress from all of the new stressors that this has produced, I suddenly became keenly aware of what in-home hospice is all about – and it’s a lot like trying to make childbirth as comfortable as possible in familiar surroundings. Much of the stuff you’d expect in a hospital room is right here in our living room. We even have one of those over-the-bed tables on wheels that can be raised and lowered and upon which hospital meals are served. But it’s still our living room – with new meaning to the term “living” – not a stark, unfamiliar, and unpleasant place. I’m reminded that most of the literature we’ve read about the hospice movement emphasizes that dying is actually part of living – for all of us. We need not treat it as a failure of some sort. Doesn’t it make more sense to acknowledge its reality and deal with its inevitability by exercising as much control over it as we can? Prior to “modern” medical technology, isn’t that what people used to do? Die at home? Give birth at home? Susan occasionally wakes up, looks around, makes an observation, and resumes her slumber. The other day she commented “we have a nice living room!” Point made.

Jon’s prior CNA experience in a nursing home has proved to be invaluable. He’s teaching me all the tricks. But the new chores that Jon and I have taken on are unpleasant and exhausting – and not just for us. Susan, even though she’s not the same coherent person we’ve known, clearly doesn’t like any of this either. We had hoped to avoid this stage. But the fact that we’ve had so much time to prepare for this is a gift. We’ve read a great deal about hospice and the dying process – and I’m beginning to understand why it can be an honor to be a caregiver to a loved one.

Uncertainty is still part of the process. Though things have changed rapidly in the last 13 days, we still don’t know when she will be able to let go. She doesn’t either. We only know we’re closer than we were before. Patrick was here for a few days last week and will return for the Thanksgiving break. Instead of the usual Thanksgiving custom, the four of us will be giving thanks in a very special and memorable way – for the gifts of life and love, and especially for the extraordinary legacy of Susan Diane Given Moody.

Urging Us On

When I was about 15, I walked the Lincoln Trail as a boy scout. The Lincoln Trail retraces the path that Abraham Lincoln walked between Springfield, Illinois where he was studying law and New Salem where he was living in the mid 19th century. It’s 20-plus miles – a pretty long trek for a youngster, especially if the youngster isn’t in the best of shape. But my brother and my cousin had both done it and I wanted to do it too. Hiking the trail earns the scout a medal and a big sense of accomplishment. Besides being dead-tired toward the end of the long day, I remember feeling lonely during the journey, even though I was with a small group of others who urged me on. I probably wouldn’t have made it without that support.

This memory could be a metaphor for our cancer journey. Susan, Jon, Patrick, and I are all experiencing this trek in our own ways, and I think it feels a little lonely for each of us even though we have lots of people urging us on. I don’t know how people do this without the encouragement of others because getting to our destination is a long trek. As with many life experiences, hiking the Lincoln Trail must have been part of my preparation for this time in my life.

Lately, the show of support has been particularly evident from all of you. We’ve gotten loving, non-invasive messages in all kinds of ways and from all sectors of our lives. Some of the messages have become dependably regular and are our bedrock. Some of them have been unexpected and gratifying surprises. The number of people who are with us on this journey is astonishing, and humbling, and touching. It illustrates the best of our humanity as we travel the circle of life together. It is what will help us make it. In spiritual terms, all of you equate to the presence of God in our lives – and God is mightily present.

In the last month Susan has gone from what had been pretty stable pain control to sudden, severe new pain. After a couple of weeks of increased doses and being “out of it”, she seems to be in a little better control of the pain for the time being. Her memory and cognitive abilities are still pretty variable from one moment to the next. She struggles with the loss of function. We know pain management will be an on-going challenge. Stability and mobility are growing issues and all of us are fully exercising our coping skills as we strive to keep her safe, comfortable, and at peace with the situation. It’s already been a long hike and we don’t know how far we have yet to go. The sense of accomplishment we seek at the end will be helping Susan finish her earthly life in peace and comfort. But we’ll make it – because we have you urging us on. God is with us. Thanks be to God – and to you!

Letting Go and Holding On

One of the challenges Jon and I have noticed about this journey as caregivers, is how very difficult it is to find the right balance between assisting Susan with a task and assisting her with her dignity. It’s very hard for Susan to let go of things that she can sometimes do, but sometimes can’t or sometimes shouldn’t. It’s usually little things – like carrying a glass of water around the house or a handful of stuff up and down the stairs. It could be something very important to her but not so much to us when we have so many other priorities on our minds. Sometimes, it’s no problem at all. Sometimes she can’t do it safely and knows it. Sometimes she can’t do it safely and doesn’t know it but Jon and I do. And sometimes we’re mistaken. Part of the dying process is learning to let go of things and we talk about that a lot. But as Susan points out, it can’t be done overnight, especially for someone who has always been so competent. Knowing exactly how best to get someplace or where to park doesn’t go away just because you’re not the one driving. Taking things away from her – even with all our good intentions as caregivers – sometimes results in some verbal wrangling, albeit brief, that only adds to the stress of it all.

I think parents and teachers get lots of practice at the process of helping, then letting go as children grow, develop, and master new things. Experiencing that is both scary and rewarding. But this is just the opposite. We’re not talking about someone’s development; we’re dealing with someone’s decline. We’re not the ones letting go – she is. I noticed the same difficulties when my sister was the primary caregiver to our mother. The caregiver wants to help, to take annoying tasks away, to keep the loved one safe, and to balance all of that with whatever the caregiver needs to do for himself. But the loved one wants to reaffirm her own value as a competent human, to offer thoughts, ideas, and expertise in the activities of daily life no matter how trivial. It turns out that helping someone who is not always helpless is a steep learning curve.

Because of Susan’s decline, it’s very difficult to tell from one moment to the next if we’re dealing with a sharp, rational thought process or if we’re dealing with the effects of the brain tumor. She is often confused and frequently has trouble converting her thoughts to the right words – but not always. Short-term memory is a big problem. In addition, her mind is tormented by an overwhelming, sometimes anxiety-producing flood of thoughts. Some of those thoughts are constructive, accurate, and right on the money. Sometimes they’re not. Often, they are things we don’t think she needs to worry about. But when we step in to rescue her from being a hostage to her own unnecessary control needs, we sometimes get a backlash because she’s unwilling or unready to give up the dignity of having thoughts and choices. It’s very stressful and takes a lot of energy for the caregiver to figure out the right response. In fact, it’s probably impossible – which adds an element of guilt for not getting it right.

Her decline is more and more obvious. For several weeks, pain management has been a growing issue. We’re constantly trying to determine how much regular, baseline pain medicine she needs in order to avoid too much breakthrough pain yet not so much that she falls asleep in the middle of a sentence. The more morphine she takes the more cognitive function she gives up. The less morphine she takes, the more she’s in pain. Her balance and mobility are much worse. She uses a walker more and more, even in the house. Her risk of falling is considerably higher. She uses oxygen occasionally for shortness of breath (that was particularly handy for our recent visit to the higher altitude of Estes Park). And yet she continues to formulate future plans and future projects and hold on to as much as she possibly can. It turns out that the dying process is much more complicated than I ever anticipated, even though we’ve been informing ourselves about it for years.

How will Susan know when it’s time to let go and die in peace? How will the rest of us know when to signal to her that it’s OK? There is only one answer that consoles me: We have to let go of our human concerns and hold on to our faith in God, Nature, the Divine, or whatever superior force we rely on to help us cope with life’s challenges.

Let go – but hold on. It takes a lifetime to master.

How do you say good-bye . . .

. . . to your parents, your sister, your brother and all the rest of your loved ones when you’re dying?

Susan’s parents were here for a brief visit in early August, followed by her sister Barb with her husband Jack later in the month. Her brother Scott and his wife Jan will come for a short visit in late September. In each case, we all know that it may very well be the last time they see Susan again.

But as sad as that sounds, there are blessings in all of this – just as we’ve said about the whole cancer journey. How often do we take the opportunity to really pay attention to our loved ones, to listen to them, and appreciate them rather than taking our relationships with them for granted? When you add the element of dying into the mix, everything changes – especially if it’s not following the usual order of the older folks dying first. Susan and her family are as close as they’ve ever been – and that’s a good thing.

So, how do you say good-bye to loved ones when you’re dying? Maybe it doesn’t matter as long as you somehow focus on what makes them your loved ones to begin with.


By the way – how is Susan doing?

We continue to experience ups and downs, often several times in the same day, with a gradual downward trend. Everything is slowly happening as expected. Susan’s pain is pretty well managed most of the time, but her cognitive abilities and emotional reactions to things are noticeably affected. She has trouble with short term memory and gets easily confused or upset or overwhelmed. Someone is always with her when she leaves the house and most of the time at home as well. Her balance and mobility issues require a cane or a walker. But she continues to maintain a great deal of control of her day-to-day tasks. She is continually knitting multiple projects, mostly for others.

Jon is at home most of the time on weekdays and I primarily do evenings and weekends. Jon has a part-time job and is taking a class – both of which help keep him alternatively occupied. Patrick worked at scout camp until early August, and then was part of the care-giving mix for a couple of weeks before returning to Bozeman last weekend for the beginning of his semester. It’s a unique challenge for him to be there and not here. My work is going well and my co-workers are wonderfully supportive. I try to take a little time for myself now and then but my plate is full and I will sit out of choir for the time being.

Jon, Patrick, and I can tell you that this is hard and getting harder. I watched my sister deal with the challenges of eldercare with our mother. There are lots of similarities. But as my sister pointed out, such difficulties are not unexpected when your parent is ninety-something. When as in our case, it’s your soul mate with whom you had retirement dreams, or your mother who would relish a chance to someday hold your own children – there is an extra overlay of emotional difficulty. We’re exercising our coping skills, practicing our faith, and feel deeply appreciative of a supportive community.

Thank God for all of you!

Stateside and Back

We have a guest blogger for this entry. This posting is from Lisa's Peace Corps Blog, writing about her recent visit in late July. Rob


I tactfullly avoided mentioning to too many people that I would be making a stop in the states for a bit, just as I have been tactfully avoiding writing anything about my trip there. Well, I think it's about time I talked. It's strange to think of an experience as both rejuvenating and energy-sucking. B/c that was what America was. Essential and exhausting, wonderful and heartbreaking.We have all changed so much whether we were aware or not: Susan, me, Jon, Sarah, family and friends. It's amazing how distance can put such a real and invisible gap between what we all understand about one another. And how that enables us to just grow up more, i guess.Susan was my reason for going back where i came from. So I went. Things were different. Some of it was sad and real. But it was what it was.I saw both a different woman and the same woman in her. I saw a woman who still loves her crafts, who still wants to be with her friends and get her nails done and have the classic "Moody" conversation that we have at their dinner table, usually on the verge of politics or religion, or life in general. I also saw her frustration in losing her independence in all these activities as well. The ultimate reality that it will not get better, and wondering, just how the hell do you say goodbye to someone...for good? I managed to leave there with thoughts of not being sad for Susan because she knows what she wants and how to go about her plans as best as she possibly can. But plans are just hopes. And we hope we can carry them out against all odds. I cannot honestly say that i am not worried for her within the next few months, but I was happy to see that she is able to make her decisions, able to prepare herself and her family and enjoy what time has left to her. I saw her trying to embrace her own person, on her own, as well as giving what time she can to others. I think all of us would want to give this time to those we love. And I can see Susan doing this both because she needs her family, but also because she knows that we need her. What greater show of empathy for those of us behind her than to get time with her, cause that's all we got to work with. Jon, Patrick and Rob are a bit of another story for me. I do worry for these men and how they will cope. I also (saw) 2 different Jonathan's back home. A caretaker, all business at times and just as frustrated as his mother was. His trade-mark patience could wear-thin. He even found it hard to "please" me one time when I snapped at him for no good reason. That's when I thought that I am not so sure that he is aware of what he is doing exactly. And that is his very best. His best to love himself, the best to love his mom and take care of her, the best to alleviate any stress on the family. His best to hold it together as a part of his world changes before his eyes. And this all just made me realize, for only the millionth time what a good heart he has. And how proud I am to be a piece of it. And it would be a lie if I said that being in Uganda wasn't some sort of escape for me. It is. I have another focus here, another life, really. That is the best and worst part about being here, maybe: the separation from my point of origin. But, this is life. Everyday we all die a bit, we grow a bit, we lose something and replace it with something else. What is most important is that we learn a lot and play a lot, like my papa preaches and do what we can to connect to others. Can I end this on a morbid note? "Love is watching someone die"And I hope that I can get a chance to be with those I love when they end their time here. Life is nothing special if it does not hurt. And I am ok with this.
Created for your enjoyment by Lisa B at 7:31 AM

Here's to Jon!

Our oldest son, Jon just turned 25 – an age when most people are focused on their own lives, their own future, and developing their own ways of meeting the challenges of life. Most of us did not have to deal with the reality of a dying parent as part of our early adult experience.

Jon graduated from Colorado State University in December of 2006 with a B.A. in History. His plan at the time, along with his long-time girlfriend Lisa, was to enter the Peace Corps and serve the world in a uniquely meaningful way for a couple of years. He and Lisa applied and were both accepted. The screening process was long, and even after their initial acceptance they each had to endure a multitude of psychological and health tests. Never-the-less, the process was leading them to Africa where they both wanted to go. They wouldn’t have been serving in the same place, but they’d have been on the same continent doing what they had long committed to do. But in the summer of 2007 after months of delay, Jon was finally informed of the Peace Corps’ reluctance to proceed while his mother was dealing with a terminal illness. At the time, we had no way of knowing where Susan’s disease process would take us, or when. But the Peace Corps has a great deal of experience in these matters and knew that the loneliness and isolation of an assignment in Africa would be arduous – and that any major family crisis, let alone her death, would threaten his experience and that of the community he would be serving.

While Lisa’s plan moved forward, Jon took the disappointment in stride and looked for alternative opportunities closer to home. He ended up joining an AmeriCorps program called the National Civilian Community Corps. He left in late January for what would have been a year-long assignment based in Maryland, just a week before Lisa left for the beginning of her Peace Corps assignment. She went for an orientation in Philadelphia first (where she and Jon were able to rendezvous), then went on to Uganda where she is currently serving. It was shortly after that when we found out about Susan’s brain metastasis and that we had entered a new chapter in the journey. After several months doing post-Katrina projects in Biloxi, Mississippi, Jon decide his calling was at home. He arrived back in time to join me in the emergency room on a day when Susan was dealing with the medical crisis that helped us decide to enter hospice two days later.

Jon put his life on hold and chose to be with Susan as a caregiver. He has training as both a certified nurse aide and as an emergency medical technician which has come in quite handy. Early in the hospice journey the going was relatively easy and his presence was simply appreciated. Now, looking back over the last three months I can’t imagine doing this without him.

Jon’s role is more complicated than it appears. If he were just being employed as a companion, he might be able to go off duty and retreat to his own living space. But he’s also a family member dealing with the end of his mother’s life. There’s no “time off” for that. Though he found being thousands of miles away very difficult, he’s now dealing with the challenges of being so close. At any given time, he’s taking Susan where she needs to go (he’s not very fond of the craft and fabric stores she frequents), doing chores around the house, helping her with her meds, or observing her symptoms and behavior. (Such observations are critical for the hospice team in order to monitor changes and make necessary adjustments for Susan’s comfort.) All of that has become much more complex and challenging in recent weeks. Susan, by her own admission and because of her brain tumor and meds, can sometimes be a pretty crabby patient. Jon usually bears the brunt of her physical and emotional symptoms because he’s with her so much. But Jon is also processing his own journey. He’s trying to figure out what to do and where to go after Susan is gone. He’s trying to keep up with Lisa and her separate experience in Uganda, both to lessen the anguish of her absence, and to be supportive of her. He’s experiencing losses and learnings that most young adults don’t experience until much later in life. And I know he has days when he wonders why he has to endure all of this.

We all have our ways of coping. Jon works out a lot. He plays with the dog, he has two part-time jobs that get him out of the house, and he is exploring future opportunities. At Jon’s Eagle Court of Honor in 2002, I said I had begun seeing him as my own role model, rather than the other way around. I don’t know how I would manage what Jon is handling if I were his age. But I admire the heck out of what he’s doing. I know that as difficult as this is on so many levels, that he’s been gifted with the unique ability to do this and do it well. I believe he’ll be an even better person for this experience, difficult though it may be.

When I told Jon I was writing about him, he asked “is it good?” He’s not looking for accolades. He’s not that kind of guy. But I think we all need support in dealing with this journey at the end of Susan’s life. Some of my support comes from him. He deserves our support too. So please raise your glasses and join me in a toast.

Here’s to Jon!

A Susan Health Update

It’s time for an update on Susan’s physical, emotional, and spiritual health. Some of what I tell you is brutally honest, but she wants people to know these things and has asked me to be frank. It turns out that the process of dying is more complicated than we imagined. She is not bed-ridden or home-bound. She has no tubes or needles entering or exiting her body. In most ways, you wouldn’t know this person is dying, let alone in a hospice situation. But the reality is that she is slowly declining both physically and emotionally. The good news is that her spiritual health has probably never been better.

Physically, she has the tell-tale “moon face” (which she hates) of someone who has been on steroids for a while and she uses a cane or walker outside the house. But beyond those minor observations, you might not realize all the other things that are going on. She does her hair and nails. She wears jewelry. She is as impressively well-dressed as ever. On any given day, she’ll have periods when she feels well and enjoys knitting, reading, or listening to a book. But she’ll also have periods of fatigue or discomfort. Afternoon naps have become an important way to conserve or renew her energy. She has to limit the number of things and people on her daily agenda (very hard for her). Too much to think about saps the energy right out of her. Issues with fine motor skills have affected her hand-writing and the handling of small objects (like pills). She has neuropathies in her feet that come and go but are coming and going a little more often. Balance and mobility have decreased (thus the cane or the walker) and her left foot won’t cooperate when she walks. She is mostly pain-free (due to regular baseline pain management) but occasionally has severe upper abdominal pain that requires additional narcotic intervention or scalp pain near where the pins of her gamma knife “helmet” were attached. Some time ago, her colon stopped working normally and finding and maintaining the right balance of substances to prevent great discomfort from either unwanted extreme remains elusive. She lost most of her ability to salivate and some of her taste from earlier radiation treatments. Combine all of that with short-term memory loss and occasional confusion and you’ll get an idea of what things are like for her on an on-going basis.

Emotional health is also a struggle. The prednisone is partly to blame because not only does it produce the despised “moon face” and weight gain, it also sets the stage for an emotional roller coaster that can find her angry and grumpy one minute and crying the next. For those who know Susan well, you know that she has always been a self-directed, “in-control” achiever. To lose so many physical abilities and to let go of things she can no longer manage is extraordinarily difficult for her. Jon or I need to be with her when she takes her meds to explain why this or that has changed, to help make sure she’s taking the correct day’s doses, to find the ones she drops, or to just keep her focused on the task. She hasn’t driven since late April or early May. During the periods when she is feeling reasonably well, it drives her nuts to be dependent on others (primarily Jon and me) for transportation. At other times, she realizes why things are the way they are. But for this highly intelligent, capable, accomplished person – it sucks. In addition to the fatigue, over-stimulation causes anxiety. That’s why you rarely see her in large group situations any more. She likes occasional short intimate gatherings although they are taxing.

But just as she has declined in physical and emotional strength, her spirituality has grown with this experience. Everything that is happening to her is supposed to be happening in this process – and she knows it. While so many others among us are avoiding the subject of dying and death or resisting it in angry denial, Susan is facing the end of her life with firm resolve to leave the rest of us more enlightened for the experience and to leave a legacy for the grandchildren she’ll never meet. She has a quiet confidence that her life has been meaningful and she looks forward to discovering how it will continue in some way beyond her earthly existence. When we gather at Montview for her memorial service, we will have no trouble acknowledging our grief, but we will be equally passionate about celebrating her life. She will have shown us a way to live and a way to die that will enrich our own journeys in life and in death. Anyone who spends time with her can easily acknowledge the sadness of her physical and emotional decline. But one can also discern - just beneath the surface of the obvious symptoms – another deeper, ultimately more important reality about our existence. We have to look past the sad stuff to experience it but it’s there. It’s uplifting and inspiring and it calls upon us to grow our own spiritual awareness.

So in that all-important sense, I’m happy to report that Susan is well.