Popping in to the Coffee Shoppe at M3 – well, there is Claret, but where oh where is Red? She is not so easy to track down these days with her grueling schedule getting Redmund Productions live, but I have come at a lull between the hustle and bustle as the mission is accomplished, and Red should be relaxed and maybe can spare a moment to talk.
Taking my cue from the last interviewer here, other than Red herself, I have treats to entice. Claret has kindly prepared an Espresso Sweet, and I also have for her anisette biscotti. Have you had it? I have it on firsthand authority it is a favorite nomnom of our esteemed lady of so many things and she adores anise in all sorts of stuff. This is biscotti with white chocolate and caramel. If this doesn’t lure her my way then, well, I will have to come up with a whole bunch of other words to fit the rest of our time.
I am more of a scone girl and the fresh batch smells wonderful, but I am a little nervous, never having done an interview such as this, and of course to the master – mistress? interviewer herself. Deep breath, I know I am among friends so, maybe I will have that scone. Oh… I hear footsteps, and I will bet… ummm… yes it is! Hello Red, you look stunning today, and my what lovely shoes you are wearing. Are they new?
I’m so glad I could come and talk to you for awhile, I wanted to talk about your latest book, one of them. I trust things are a little calmer than they have been the last few weeks?
Congratulations on the launch of Redmund Productions; it is amazing what you have done. I think of you as a dream weaver, you have certainly made it possible for some who thought it would never be more see they could achieve great things.
You have two books, as well as the flash fiction anthology Flash in the Pan, that were published with the launch. I came to talk with you about one of the books, Killing Us Softly: Becoming the Surviving Spouse of Cancer.
The terminal illness and death of a spouse is such a hard topic talk about. Hard to ask questions that do not seem almost harsh to ask someone after going through such heartache, most people want to put it behind them, and most people do everything in their power to skirt the issue and not ask. You are very open and honest about sharing your experience, do you find this makes people uncomfortable, or do you get a sense of collective relief that you make it okay to talk about?
RD: Yes. Those who are curious as to the hows and how tos are genuinely interested and relieved someone will answer their questions. The ostriches get their tail feathers ruffled.
LC: Much of your husband’s illness, you continued to blog, sharing with your readers the raw and painful reality of caring for a terminally ill spouse in a way that was gripping and at times, heartbreaking to read. Did you find the writing and sharing process something that helped you cope?
RD: It helped immensely. At the time, the platform was not conducive to much interaction, but the inbox buzzed with encouragement and a sort of reverence. It was as if they said the wrong thing I may shatter into shards. It was odd, but comforting to know despite the discomfort of having the events unfold before them they were in touch with inner strength at whatever level they possessed it.
LC: Did you set out to have a written record of the ups and downs of caring for someone as they die or did you just one day write about it and that’s how it began?
RD: By February, I was about to burst. I killed a lot of Mafioso and journaled to beat the band, who showed up for encore after encore. I realized there was no way for me to continue blogging with this white elephant in my living room with a scythe. I needed the catharsis and inwardly hoped just one person would come to read with either wisdom or comfort.
LC: Were you surprised at the response you received to your blog during the time?
RD: Absolutely. The SIB had not earned its name in full then. The people who did comment and emailed were genuine. When a doctor asked me to write the book, I declined immediately. She would tell me nearly a year later it would help many people, including some of her colleagues, who dealt with patients fifteen minutes at a time, to know what the endgame really was. No one talks about it. Before, during or after.
LC: Did you see the need for a book of this nature?
RD: At the time, no. That is to be expected. After I let it lie for nearly two years, I could better see what others saw in it. I had bulldozed a wide road where rocks and scrub had once been.
LC: Isn’t it this material, what you wrote during that time, which makes up the framework of the book?
RD: The insets are excerpts from the blog and my journal. The blog is far more polished than the journal entries, and most have declared the blog a “grab you by the short hairs” piece of work.
LC: This book is not about the person dying from cancer, it’s about the the spouse who often is the primary caregiver and ultimately the survivor. Why do you think this is something that everyone who has been a caregiver/survivor of a terminal loved one can relate to?
RD: Even though my reaper’s name was Cancer, every terminal illness has similar characteristics. The health decline, whether rapid or slow, brings all the same concerns. You can see the train to the cemetery, but your ticket is stamped, and there is no missing it. Those who have little or no notice can find comfort in the pages which cover after the funeral. Those are universal even if the terminal illness is not.
LC: Yet it is not something that is talked about nor would do you find much written about it.
RD: No. In fact, there is no time to speak of it. Before, you have a life: career, marriage, children, grandchildren, greats if you are lucky enough. During, everything (read e.v.e.r.y.t.h.i.n.g.) is about the patient: care, tests, results, comfort, pain relief, psychiatric care. After, there are only two pieces of advice and the professional one is to just move on. Precisely no professionals cater to the endgame.
LC: What affected you the most as a caregiver and then survivor of a terminally ill spouse? Your greatest challenge and you what you wanted to make sure was accomplished before your husband passed away.
RD: Whatever I may have accomplished was not what was important. I made sure his last days were as happy as we could make them. I made certain his sister got here in time to see him one more time. I gave him every opportunity to get right with his God. I did everything in my power to reduce the pain.
What affected me most was to see the regret in his eyes and hear him apologize.
LC: Would you have done anything different? Made any different decisions, or possibly approached the whole period from the time of his diagnosis until he passed, if you had a book such as KUS to refer to and prepare you for some of the toughest things that happened?
RD: I make this clear in the book. I could not have done anything differently. KUS would have kept me from some research about how normal I was in my emotional responses. Having been down the road before with terminal ill family, I knew a lot of the ropes because I had listened to my ancestors.
If there was something I would change? It would have been getting the diagnosis sooner.
LC: Do you think this book helps the spouses face the reality of their loved ones imminent death rather than live denying the inevitability and in admitting that from the time it becomes apparent helps them to help their spouse?
RD: Yes. Denial, especially at diagnosis, can cost crucial time in getting the best treatments available. Most importantly, the decisions are your spouse’s, even when you think you would choose differently. By far, it is the hardest concept to accept.
LC: Does it change the grieving process? Is it a vital hurdle to get over to be able to advocate for the spouse in their best interests?
RD: Yes, it does change grieving. It helps in the guilt phase. When you can look back and see all the things you did to support your spouse, it helps dispel false guilt.
LC: One of the things so compelling about KUS is it is written not as a “how to guide” but as a “how it is guide”. Your voice. You are deeply personal in that we are there with you as you take us through the hardest things I think you would ever be called on to do as a spouse. It is very matter-of-fact, yet the reader is taken to those moments as if they were happening now, and I don’t see how they could not feel it. When you set out to write the book, did you think the importance of its message was best conveyed in this format or did you want to get the message across without opening up your own life as much as you did?
RD: When I first drafted this book, I did so with no personal references to the point of decrying it as a memoir in the prologue. My first editor said, “Scrap it. It is bland and boring and never going to reach anyone. Where’s what you wrote then? That is what is real.”
The draft went in the bin (except for three paragraphs of the prologue).
LC: I don’t see how anyone could read this book and not have compassion for the caregiver and act upon it as well. I see how it is something that would be vital and comforting to the caregiver spouse, but would you recommend this book for anyone who knows someone who is a caregiver and survivor of a terminally ill spouse as well?
RD: (Wry laugh) Remember, I never expected this to become a book. When KUS went to beta, I had a hard time getting anyone to read it. Those who have read it tell me it is for everyone who wants to know and/or wants to help. When we came out of line edits, I could see a much broader audience for it in terms of the support system for the survivor.
LC: Do you think it will help change the attitudes that are prevalent about how this person is treated during the course of the spouse’s illness as well as afterward?
RD: I can only hope so. Until someone tells you you are eating with the wrong fork, how can you know? I would love to see some of the That’s not the way it should be done, stop. I am not all that kind. I have offered concrete shoes to a few who thought they could have done better than I. I.e. Their choices would have extended life and made it far better.
LC: Do you think it would change the way medical professionals treat the spouses when they question the process and procedures if they were to read it and see what it is like from the perspective of someone who is watching every single step of their loved one, trying to make their last days comfortable and meaningful?
RD: Again, I am going to defer to my friend. She believes many doctors who see the test and end results never grasp what the other 23 hours and 45 minutes are like in a day. I would love to see it help open communication lines between professionals and spouses; HIPPA be damned.
LC: You speak of the shame of society – to speak frankly about the true nature and course of the cancer, especially in reference to medical professionals when asked specific questions as to its course and outcome. Can you elaborate why this attitude of talking around or not giving a direct response is the accepted way of addressing the spouse of the patient who has legitimate questions and do you think it is the same reason no one talks about what the caregiver/spouse can expect during the process?
RD: We could be here all day. Suffice it to say, some doctors look down on the patients in pity and the spouses in measured tolerance. Clipped, evasive answers are rarely met with comeuppance because the situation is frightful enough. I do not tolerate bullying.
No, the reason no one talks about this is because it is a chicken and egg. While Mate is alive, your time is occupied. (full stop) You even hear professionals tell you, “You can take care of you after this is over.” The callousness of that statement is the equivalent of sweat shop mentality.
Once it is over, your therapist wants to engage you in the life which follows instead of honestly dealing with the loose ends.
LC: What is the number one thing you hope this book is able to do?
RD: If one person who reads it takes a more confident step on the road to widowhood or down the path after the funeral, KUS will be a success.
LC: How has the writing of this helped you? Did you find it hard to bring out the material to put it together for the book, or did knowing that it would help someone face what you did with more knowledge of what is to come keep you intent on the purpose?
RD: It made me realize I did much more than even I remembered. Yes, it was difficult to see the journal entries and recognize how I had to be quiet. He made a very different choice than I already have.
My ambivalence on your last question should be forgiven. Yes, knowing it will help someone justifies putting myself back there. No, what kept me intent on finishing this one was the nagging of my friends and readers who got to know me through reading the blog. They were convinced more people needed to hear what I had to say.
LC: No doubt many people will read the title and think they have no need for a book of this nature; what do you think about that “not for me” attitude?
RD: My initial reviewers were all people who will likely never be in the position to be a surviving spouse. None of them has walked away unaffected. As I read the final proof, I could have used more than a few people who had read that book in my corner.
LC: Who are you going to share the book with?
RD: I am going to donate books to the oncology department here where my late husband was treated. I want it to be accessible to those waiting in the chemo labs and waiting rooms.
Thanks for taking the time to answer my questions about KUS. You have a lot of strength and a very caring heart, my friend. Keep on keeping on and just being you.
And don’t forget – we will always have Paris – okay, never mind on the Paris.
Dearest M3 Readers,
Many of you know me, yet you may not know of this aspect of my life. You also may know someone who has been where I have, but may not know how to help the person cope. Take a few minutes to read over the jackback for Killing Us Softly: Becoming the Surviving Spouse of Cancer. It will likely touch you and open your eyes to a situation near you.
If you have not already, connect with me on Twitter and Facebook from the large widgets in the side bars.
This Writer’s Spotlight is part of the Widowed Blog Hop. If you have not been to see the page, hover your mouse over the Green Room. There are many bloggers on the hop with a realistic grasp on life after the chaos begins to tire.
Thank you for your continued support of the many talented authors of the M3 Coffee Shoppe.
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Do you know someone who is widowed or is the caretaking spouse of someone who is terminally ill? Are you a surviving spouse? Who do you know who would benefit from this book?
© Red Dwyer 2012
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