Space For Jean

How to be there when you're leaving

I heard a conversation on the radio. I often listen to the radio when I'm doing something I'd like to escape from; like exercise or house work. The conversation involved a man with ALS, a disease that slowly deprives one of their body, bit by bit, and eventually ones life entirely. To be diagnosed with ALS is to get a death sentence.

I felt like I received a death sentence once. When I first learned I had cancer it was like that for me. I went straight to the thought that I would die of this thing and soon. With a young daughter and a loving husband I naturally assumed it would all end far too soon and I would be responsible for great sadness and despair. Well, I did move past that. I didn't die soon and I probably won't die of that cancer. However, the awareness of being faced with it does continue to inform some of the things I do today. Life is, really, too short to worry about some things and that is a wonderful lesson.

The conversation I listened to with this man who had ALS touched on something though that I had not figured out for myself before I was allowed let it go as a concern. How does one die of a disease when you have young children? How does one do this artfully and gracefully, dare I say meaningfully? This man's children were very close in age to my own daughter; young teens. At this age kids will remember dad (or mom) but not necessarily well or with any complexity. How does one cope with your own declining health and still participate in their life? ALS presents some different problems than cancer. It can be slower, it is certainly more debilitating, you lose mobility with it while still being able to think clearly. Pain is not necessarily part of the mix. Whereas dying from cancer can be quite painful and the last days are that: days. Still, how does one do it so that what you leave behind for your children is the very best possible thing you can do?

This fellow had it nailed. I was so impressed. Wheelchair bound and with breathing apparatus in place he insisted on being square in the middle of the family. He would not hide himself away in his own room where he might be able to work quietly (he was an historian). Rather he insisted on as much participation as he could manage. He heard about their days, helped them solve problems, and, I'm sure of this, he issued parental corrections as though he were in a position to reinforce them. Of course this took energy, even more so as he had less and less ability of his own. Was he in denial? Was he egotistical enough to think his input, no matter how impaired he was, essential to their upbringing? Was he a bully? Was he nosy? Was he a control freak?

When asked by the interviewer why he went to the trouble to do that his answer was quite simple. He knew that at his childrens' ages they would not carry forward very detailed memories of him. Those memories would be from his last months and days with them. So he wanted those memories to consist, not of him quietly sequestered in his room, but of an active and involved parent. He was, in fact, trying to give them memories of him that they could keep for the rest of their lives long after he was gone. Memories of a dad who gave himself to them not just received love and support from them.

I thought the man was brilliant. What a wonderful approach to an awful situation. And it showed courage and a kind of wisdom about the impact death has on those who survive and how to ease that transition no matter how long it might take.

For me, it was a lesson on how I could live today because, as we all know, we all live with a death sentence. We just don't know when it will happen. And remembering that what you do today will be part of your family's memory of you does give one the opportunity to create memories that sustain them long after you are gone.

Getting Things Done

I am happily moving forward these days. After supporting myself with drugs I have finally had the energy, both mental and physical, to focus on those things I care about. I began that journey about a year ago (I talk about it in this post) and find myself relaxing more and being anxious less. Without really thinking about it I am finishing projects I had started years ago. I meet up with friends more often and I don't worry about so many things. And my blood pressure did go down. All good.

One misconception I had about taking an anti-depressant was that it would help me feel more comfortable with group activities. I don't do well with crowds. However that didn't seem to change. What did change was my ability to face that honestly and decline if I felt like it. I was much less defensive about it and understood that some things are just not good for me to do. Besides when you are over fifty you can say "no" if you want to, right?

When I originally spoke to my doctor about taking an anti-depressant I really felt that my blood pressure (which was becoming a concern) was being affected by my anxiety. We also spoke about how losing weight might be beneficial, too. I took the pills and it made a difference but I never focused on the weight. My blood pressure went down to almost normal but not what it had been before I was diagnosed with cancer. At that time my BP was dead normal. Just this past February I was chatting with a friend about how beneficial this drug had been and I realized I let a whole year go by without even thinking about a diet plan. The next morning I signed up on-line for Weight Watchers.

Weigh Watchers and I go way back. I did a little math and discovered that I return to them at regular intervals. My first time was at the age of sixteen. Yes I was a chubby adolescent. Imagine dieting in high school? Yeah, not so fun. But I did it and it worked, for about sixteen years. In my almost middle thirties I went back. Didn't need to lose quite so much this time and ended the diet with a wedding, my own. Now, about eighteen years later it's time again. 

Somewhere along the line I have learned discipline. In three months I have lost twenty pounds. I never lost that fast before! I love the on-line program and its point system. I saw my doctor recently and my BP was dead normal this time. Whodda thunk it! I figured post-baby, post-menopause I was doomed to struggle for every ounce and balance the diet with lots more exercise than I ever wanted to do. But I was wrong. I get out for my regular walks but don't do much more than that. My family has been very tolerant of the adjustments I've made in cooking. Lucky for them we still eat pretty much the same food. I feel so lucky! I know that it is yet another benefit of reducing my anxiety and allowing me to use my energy in much more productive ways.

That's all I wanted to say about the weight loss. There is nothing more boring than listening to a middle-age woman go on and on about it. I feel better, that's what is important. And I took care of a potential health problem before it became one.

The biggest thing I have gained over the last year is an increase in my self-confidence and less worry about the future. Not bad. I only wish I'd started taking anti-depressants earlier!

Time will tell

It's been a year, my goodness, since I had anything worth saying. Hunkering down to cope with the aftermath of a parent's death takes work. I know, I've done it twice. This year has brought all kinds of new things into our household and not all of them were negative and a result of loss. Some were gains and just plain new experiences. We are doing well and moving forward better than ever. Let me bring you up to date with some of the more notable changes.

After my husband's mother died it was a long hard spring and summer for her husband. They had just moved from their beach home on the coast to a cramped dark apartment when my mother-in-law became suddenly quite ill and died. Too many belongings kept the Mr. busy finding consignment shops to sell them in. He struggled with knee problems so watching this guy work his way around town was a little painful. It was also a way for him to review his life with his wife quietly and on his own. Some of their furniture fit the albatross category and no one wanted to buy it from him. So the last bits went to the Salvation Army. Then he moved back to the home on the coast the day after Christmas. I was happy for him. Spring has truly been a renewal for him. He loves to garden and to be back in the same plot of ground he has lavished with attention for almost two decades is a blessing in many ways. I see some months of finally being able to heal a little from the loss of his companion of over fifty years. I'm so glad they never sold that house.

 

Not quite a year before all of this my husband's sister moved nearby. She suffered a severe aneurism at the same time I was undergoing cancer treatment. She took up residency in an assisted living facility near our home. The adjustment had been interesting to watch. She jumped at the opportunity for greater freedom and autonomy but not so much to establish close relationships with her family. She left her three adult children behind in the midwest where she had lived for many years before this medical situation. She missed them quite a bit. She made friends in this facility. But one became more important than the rest. Due to an unfortunate memory problem this fellow broke an important rule in the facility and was asked to leave. My sister-in-law was not about to be left behind so with all of us watching in stunned silence she organized a move to a nearby retirement home. Well, not exactly silence. There was an intervention called by two of her children and we made our feelings known but all to no avail. That said, she does not seem to have suffered. Part of me cheers her on for her daring.

The last thing I will add to this post (more will follow, I promise) is the employment scare of 2009. My husband works in a volatile industry. We live in a part of the country that never seems to quite climb out of the recessions that occur. And his company was not doing very well in the market. So when a bigger more successful company bought his company fears ran high among all the employees that the end was near.  Fortunately most were spared . . . this year. We were able to breathe a sigh of relief. The status quo can be maintained for a while. Now they just have to show that they are a viable concern to the new company!

I have more to share about myself and what I've been doing over the last year. Until then . . . stay well.

Letting go

A few days ago, and a month after my last entry my mother-in-law died. It has been a painful and distressing time. It turns out the cancer (non-small cell lung cancer) was in her spine, pelvic bone, the lymph nodes surrounding her heart and, possibly more I cannot remember. Almost immediately after the diagnosis her pain level sky-rocketed.  She was returned to the hospital, never to return home. After almost three weeks there receiving radiation treatment to the areas most afflicted with pain, she was moved to a nursing home and hospice care. In a week she was gone.

Her husband was devastated. He was unable to face the reality of her approaching  death. Though he sat by her every day, all day, in the hospital and nursing home, he was so filled with bitterness and anger no one wanted to go over to visit. He felt contempt for her caregivers, distrust of her doctors and was reduced to blubbering tears when my husband went to talk to him. Neither of this dying mother's children were allowed a peaceful visit to say goodbye.

My own stress level lowered, ironically, the one where I was remembering my own fear of cancer. Instead I stepped back and watched this sad play unfold. I was grateful that it was a short one. I know my mother-in-law suffered if her meds weren't strong enough. And when they were strong enough she was asleep. So mostly she was unaware of anything.

But the demand on my husband has been hard. He is uncomfortable in the role of advocate and so it takes work. He does not shirk from it but he pays a price.

Still it is life. Real, ordinary, unpleasant, predictable and sad. Hardly new or novel there have been countless parents who have ended up in the hospital with a disease that eventually carried them away. Rarely do elderly couples die together and frequently adult children must cope with an unhappy widowed parent. That is the road we are on. That too will change eventually.

As I say goodbye to a woman I didn't really know very well, I hope that I can also say goodbye to the temptation to conjure up evil ghosts who might pursue me in my dreams. Let the living and the here and now be my most important concern. The unhappy memories that this pulled out of my own past, whether of childhood, loss, or cancer, need not stay present for long. They are the past, they are done, and they are behind me. I will work at letting them go.

Personal Fears, Part 2

When my mother-in-law went to the hospital last week, she was feeling poorly. Her husband, my father-in-law, had to work to persuade her to go. After all she was just cold. Really, really cold. Still, that's not feeling badly enough for the hospital, surely. Of course, she was worse than she thought. The high fever and elevated white count proved that. Along with excreting a variety of bodily fluids for testing she was asked to have an x-ray. The x-ray revealed a mass in one lung.

It took a couple of days and several casual conversations between my husband and the hospital staff and my husband and his dad, for information to trickle down to me. I often choose not be at the front line when things happen to my husband's family. It's just better that way. As I contemplated each of the bits of information (my in-laws aren't particularly medically savvy) I imagined that she had pneumonia driven in large part to her recent traumatic move, lack of activity, low weight, and poor diet, all things I had recently observed. She was also pretty depressed because of the Alzheimer's diagnosis last November.

Throughout this I was chugging along as normal but when the bit about the mass in her lung arrived I came to a shuddering halt. Turns out my husband was even shown the x-ray by a doctor. The mass was big, fist-sized big. The expectation was this was cancer. A biopsy was scheduled.

The biopsy was done a few days ago, the patient is home, mostly comfortable again. Results are scheduled to be revealed in several days. My husband will join his parents at the doctor's office. My mother-in-law seems not to remember that cancer was discussed and is therefore not particularly worried about anything. My father-in-law, who dissolved into a puddle when his wife was diagnosed with Alzheimer's doesn't seem bothered with any concerns about this at all. My husband is oppressed on every side with concerns bigger than he can cope with. This isn't even registering. I am the only one slowly coming unglued.

I wish I could say it was because I love this woman more than life itself and it is my expectation of impending grief that assails me. Or fear for the consequences of lung cancer in her last days, all that straining to breath and illness. Lung cancer can be nasty. Unfortunately that isn't it. The reality on that score is I am not very close to her. She is distant, formal, uninvolved. She's always been that way. My husband and his sister often refer to their frozen mother.

Then why is it that despite my recent addition of an anti-depressant am I anxious, distracted, hungry(!) and verging on a paralyzing panic? I had a very weird sensation yesterday: a constriction in my chest, almost an ache, what felt like fluttering in my heart. My husband assured me it sounded exactly like an esophageal spasm or reflux, something he knows a lot about. I took a Tums and it went away. I've never experienced anything like that before. Another stress-related symptom, I can't believe it!

It isn't lost on me that everything, it seems, is about me. Self-involvement is my main occupation. However, I was totally taken aback by my reaction. Cancer. Does it really have this kind of hold on me? Apparently. I don't want to experience those spasms again, remembering the many, many times my husband was laid out with real, frightening, am-I-having-a-heart-attack, pain. The solution is the same thing I used to tell him: learn to relax. I don't seem to know as much about it as I thought I did. Good thing it's spring because the chances of getting outside for a good hearty walk is much more likely. In the desperation of finding a solution to jump on that's the easiest.

Here's to pushing forward.