Musing on Life, Death and What’s in Between

Monday, January 24, 2011

Routine is good.*

*I immediately wanted to add an asterisk to my post yesterday. It was a moment that I had to stop writing for the sake of story as well as it was time to get dressed for my walk. If you read much about grief, loss and bereavement you’ll come across the concept of “the new normal.” Loss brings about new traditions, new approaches, a life changed. The old ways are gone and irretrievable. Then there is the new normal. (“Thing should be back to normal by now” someone will say eventually) Living with Stage IV Cancer or any equivalent sentence brings the new normal to bear in smaller doses.

This weekend the routine was actually changed. Yes, I could go out for my weekly walk with Anne. But I didn’t come home to my weekly Sunday breakfast Dave cooks. I’ll say cooks in the present tense because I fully expect it next week! Dave has made boiled eggs, toast, and grits every Sunday for the past 5 years. He  prides himself on having the meal timed to be placed on the table just shortly after I walk in the door. Our normal is  breakfast, read through two Sunday newspapers and often collaboration on the NY Times crossword puzzle. He was too weak for cooking yesterday. I know that disappointed him as much as me. Our routine was interrupted.

I have my little bursts of anger, and this chemo making him feel worse is one example. (Isn’t the goal to feel better?) I was also reading about Lung Cancer treatments and how good medicine is today if you get an early diagnosis. So, tell me again how we missed the early diagnosis with all the ongoing medical detective work begun two years ago?

I stayed in bed with Dave (and Trouble kitty) and took a couple of little snoozes yesterday. So, it’s no surprise that when I woke up at 1:00 am, I was rambling on in my head for two hours. Because the TV was still on, I was awakened by sniveling, crying, whining women on The Real Housewives of Beverly Hills. Really, Leah and I watch the entire series religiously. Their world of reality is unlike most of us live. It is seemingly shallow most of the time, and very “high school” dysfunctional in regards to the women’s relationships. Really, the carrying on was about how one woman felt attacked, shunned and left out of the group? OK, maybe that’s more like middle school/junior high. Dave woke up, too. Thank goodness he hit the remote’s off button  to leave them crying in the stretch limo. (Leah and I will watch the DVR version tonight anyway!) But, this morning they, too, make me angry. They are dramatically playing our hurt feelings over lack of attention during a dinner party and I spend the next two hours trying to figure out how to plan for the worst and hope for the best because I can’t sleep.

It’s important for me to remember that dreams and middle of the night thoughts are often stimulated by activities of the day or two before and especially the thoughts closest to going to sleep. Last night I was reading a new post by Soaring Spirits Loss Foundation providing a checklist for new widows. This is a compilation of “things” a new widow should know those first few days after the loss of a spouse to make the transition easier, at least in terms of some practical items, such as order 15 copies of the death certificate. Wow. Right. I wouldn’t think of that. The one that struck me: Make sure the home utilities are in both names so you can carry on without having to shut down the spouse’s account and open a new one in your name.

Plan for the worst. Hope for the best. Those were some of the first words given by our oncologist Dr. Williams along with the delivery of the Stage IV Cancer diagnosis. Today, 5 months and three oncologists later, I am feeling around in the dark about exactly what that means. I’ve looked up our health directives. I read the Last Will and Testament. I called my financial adviser. I chatted with the CPA. These are things I had in place already. Fortunately, they are reviewed regularly. Somehow I don’t get the sense this is right or complete path “for getting affairs in order.” I see the use of these documents and activities a little differently today, but I feel I am missing something of  importance. Really, these advisers are not any better prepared to talk about death in the limbo of reality (i.e., eminent, but who knows when, rather than planning for the indeterminate someday when we are old) any better than I am! Not the doctors, not the financial experts, not the friends. Perhaps, the widows.

Thus, we turn to the internet. Strangers know more and are willing to share their knowledge.  Had I a bit more angst, I would have gotten up to start trying to solve problems at 2:00 in the morning when surfing the web is at the ready.  Nah, I prefer to toss and turn.

Do you know that neither Dr. Willliams, nor Dr. Lavanya have talked about hospice to us? Even to say that here are some resources, or here’s a brochure to consider for “much later down the road?” I haven’t heard a mention. Yet, we have been told that Dave is under is palliative care, not curable treatment. And, politicians tell us healthcare discussions on end-of-life planning is about “death panels?” It’s education.

I worry that treatment will kill him and really screw up his quality of life. Now, to Dr. Hartman’s credit, the radiology oncologist, he alluded (almost directly stated) to the fact that Dave can make choices on his treatment. I conclude that doctors in healthcare know treatment. Health Care. Not death care. I wonder what triggers the discussion about our options from their point of view? I see “the hospice conversation” as options, informed patient, Quality of Life, and choices issues. Maybe, for me at least, this knowledge could lead us to an opportunity to manage his time in a way that has the most dignity for him every step of the way, beginning with the diagnosis..

There are all sorts of articles and statistics about the underutilization of hospice, and how few people, actually families, take advantage of the services in a timely manner during as health declines. This is where I walk the line of wife – wanting Dave’s best months, and years, to be full of life – and the work I do in SFH, as well as provide hospice respite care.  I’ve gone through two extensive volunteer trainings – one hospice, one bereavement – yet I am struggling to figure out how to decide when these conversations on death, on hospice, and on quality of life should start? All I understand is that the decision for hospice in particular is made as a referral from the doctor. My training is on the other end, after the decisions.  Is talking about choices too far in advance (whenever that is) a problem to actual healthcare? What’s the first step? And who holds your hand to get started?

For several years I’ve had professional connections with senior organizations and business development networks. This is one reason I am fortunate to have the access to the advisers I do. I have had many breakfast meetings with them all. Dave and I are not just clients to see once a year or less, but I can call and know they know me. These are relationships I can count on.

Among those people funeral homes are represented. This is the area of pre-planning that I/we haven’t done. I do have a workbook somewhere in my files. This is due diligence whose time has come. If nothing else it will help me begin to know what I don’t know. I wish I had completed this three or four years ago. During my bereavement volunteer training we toured a beautiful cemetery along with crypts, graveyards, rose gardens, crematorium, discussion on funeral and death rituals, customs and walks around the grounds. Demystifying this “place” was very comforting. I was disappointed that we were unable to go through their casket showroom. That sounds strange! I’ve never liked funerals, and don’t attend very many. But this helped me see the bigger picture of ceremony in a new light and the longer range implications for mourning and grief.

Talking about death, desires, and quality of life does not precipitate a quicker ending to life. Somehow, emotionally, it is all so morbid as to be off limits to most family and public dialogue! Maybe there is a way we can learn how to talk together.

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