When Parents are Enemies

My mother passed away a few weeks ago. She died of the same condition my father died from two years ago -- hospitalitis. That is -- you go into the hospital for one serious condition, and while there, the treatment results in unintended consequences, like aspirating fluid into the lungs, central line infection, and finally sepsis, which causes death.

They were both elderly with ailments and while neither one was terminally ill, they were not averse to dying. Their deaths were terribly sad, but not tragic. They had lived lives of consequence, filled with strong and loving stories. Their most generous stories, regrettably for me, were not about each other.

They were snipers. They sprayed each other with bullets of harshness and of indifference. Any dried up piece of turf could become their battleground. My father salted the food she prepared without tasting it -- blast! My mother smoked her secret cigarettes in the bathroom and saturated the house with the sickly evergreen air freshener she used to mask the shameful smoke odor -- blast!

No hand holding. No mushy names for each other. Just the binding routines of taking care of a business and a family, which substituted for marriage.

As they got older and physically impaired, the animosity grew worse. He, once the boss of a manufacturing plant, only had her to control. She, once the supervisor of the office pool in that plant, only had her own tiny tasks left to organize. He griped at her for not getting the mail on time. She expanded her silence.

I think he really did love her and was clueless about how to ever show it in a way that could touch her. He felt his inadequacy, was defeated by its weight, and retreated into TV and food. I don't think she ever did really like him. She resented him for not being enough and punished him with her indifference.

Age and illness did not undo them as a couple. All the fractures had been there for decades, growing wider and deeper. Age and illness just represented a new terrain. It constricted the bounds of their world and gave them fewer distractions and places to hide from each other.

I loved them both. Admired them both. Not for who they were to each other, but for who they were to me and to the world. They were good and kind. They gave ceaselessly to anyone who needed their comfort or benevolence. They were smart and funny.

I often wonder what it would have been like to have had parents who knew how to love each other.

Do you have (or had) parents who are good to each other? What is that like? Are your parents more like mine? What's that like for you?

Does Illness Make You Wiser?

Does suffering make you wise, or just cranky? Does illness teach you to be more compassionate, or impatient?

I'd like to believe that one of the lessons my pain gave me is to appreciate the small things that are exquisite and to let the big things that are really small just flow over me, like a passing shadow.

And I'd especially like to believe that the love and care Richard showed me as he helped me every day is a gift I treasure and return every day.

The truth is a bit of everything, as it often is.

I am wiser for having suffered. I learned about what was hidden in the inner recesses, and I learned not to be afraid of that or of anything, except more pain. I learned to accept unconditional love and unselfish caretaking -- a harder task than I imagined it would be. And, most days, I do remember that nothing is life or death, except, well, life or death.

But I do sweat the small stuff. The neighbor's car parked too close to the driveway. The colleague who oversteps his bounds and acts like a jerk while thinking he is being magnanimous. Even the remote control that's out of synch with the TV and will change the channel or adjust the volume, but not do both.

And I get cranky and impatient with Richard when he steps around the bin of recycles instead of taking it out to the curb. Or when he reads a piece of my writing and corrects the grammar instead of telling me how elegant the concepts are. I do love and appreciate him even day - just not to the exclusion of getting annoyed at the small stuff.

I wish I were wiser and more compassionate. I keep trying. I guess illness gave me potential, and the rest is up to me now.

What have you learned from your illness?

Loving After Cancer

Excerpts from an article in the Jerusalem Post about a subject that rarely gets addressed. The whole article is worth reading.

The article refers to the work of two clinicians: Prof. Sharon Bober, a clinical and research psychologist at Harvard Medical School’s Dana-Farber Cancer Institute and Dr. Rivka Klein, a Jerusalem-based clinical social worker and sex therapist who received her PhD in social work at the Hebrew University

How to bring the loving back after cancer

By JUDY SIEGEL-ITZKOVICH

It’s unfortunately an “unmentionable” subject that even makes many physicians blush – and many others avoid raising the subject at all. But as growing numbers of cancer survivors want to resume intimate relations with their partners, raising awareness of the problem and offering clinical help need to be put on the agenda.

... Returning to one’s previous level of intimacy can often be a problem, because surgery, chemotherapy, radiotherapy and hormonal medications may cause a lot of long-term side effects that interfere with sex.”

Sexuality, she says, is an experience at the junction of mind, body and relationship, and cancer treatment can affect all of those elements. From the first session, she tells patients that sexual dysfunction deserves as much attention as any other quality-of-life issue; that the problems should not cause embarrassment or shame; and that there are treatments that really work.

Cancer treatment may result in heart damage, kidney problems and disruptions of both male and female sexual function.

Men can become impotent, while women who had ovarian cancer can be propelled into early menopause. Other types of cancer can also have side effects.

....the example of one 38-year-old woman who suddenly lost her ovaries to cancer. “She hadn’t been told about what would come next in her life. She wasn’t ready for it. Her doctors told her she should be happy to be alive. But she and her partner suffered from her hot flashes, vaginal dryness, fatigue, dramatic loss of estrogen and lack of libido. She was depressed.”

Usually, either the patient is ashamed to raise the issue or afraid to embarrass their doctor – or the physician doesn’t know enough to raise it or afraid to embarrass the patient.”

The longer patients wait to undergo rehabilitation of their sexual functions, the harder it is to preserve.

“There are a lot of people who specialize in sexual medicine, but only a small subset who work with cardiac and cancer survivors and medical illness. Even younger cardiologists and oncologists may feel no obligation to talk about sexual function with their patients or don’t like to discuss it themselves. We have studied primary care doctors, many of whom weren’t prepared for broaching the subject.”

But “patients usually need psychological treatment, an integrative mind/body model. Women who have had a mastectomy, for example, usually feel very unattractive.

“It would be great if not only doctors were educated and willing to discuss these issues, but patients were also willing to hear about them,” they conclude. “There is no reason why people have to suffer in silence. They have suffered enough already."

When the Illness Tide Turns

Wait a minute. I'm the sick one here. I have the mysterious pain condition that gets me a first class ticket on the medical specialties train. You ask me how am I doing today. You notice the slightest blip in my demeanor and wonder if I forgot to take my meds again. You come to my medical appointments with me to be my buddy and my memory.

Richard got the news from his cardiologist that his heart is showing signs of enlargement. We have known he has a congenital valve issue and that some day (in a galaxy far, far away I always thought) he would need heart surgery. Over the past couple of months he has had blood work, worn a twenty-four hour halter heart monitor, had a treadmill stress test, and had a two and a half hour cardiac MRI (which experience his brother describes as akin to being in a coffin on a construction site). We are lining up the specialists for him.

The worry-vane is now being spun about by his condition. I had grown used to him being the allay-er of anxieties and the carrier of hope for my recovery. It's been a long time since I thought of him as fragile in any way. He has a damn black belt in Tae Kwon Do ! If that's not a guarantee of longevity, even immortality, then what is?

I am, of course, doing my best to show him the amount of concern he can tolerate and the level of optimism I truly feel. I am feeding him beets and spinach and kiwis and quinoa. He has, with my quiet acquiesence, taken over control of the TV remote control device. I try to make him laugh. I hold him close.

I don't like this new equation. I'd prefer to be the sufferer than the one bearing witness, helpless to make it all better. We have, thankfully, lived long enough so that the illness tide is turning, and Richard is getting swamped. In my heart, I do know that one thing we excel at is holding hands and rowing together. It's my turn to build up some calluses.

Has this kind of turn ever happened in your relationship?

Broken Heart Syndrome

Broken heart syndrome -- not just an invention of romance novelists. Takotusbo cardiomyopathy, or sudden heart failure linked to extreme stress, is also known as broken heart syndrome and is most prevalent in post-menopausal women. The heart receives a flood of stress hormones that causes ballooning of the left ventricle, chest pains, shortness of breath, and an irregular heartbeat. An especially stressful physical or emotional situation, such as a traumatic injury or the sudden death of a family member, can set off an attack.

Richard and I have joked that we want to die at the same moment at the age of 90 while scuba diving of Grand Cayman Island. Neither one of us wants to survive the other for very long. What follows is a sad-sweet story of a long-term partners who died minutes apart from each other.

"James and Marjorie Landis of Westmont, Pa., were married and inseparable for 65 years. They died this week just 88 minutes apart.

Marjorie, 87, passed away Monday after a long illness.

James, 88, died an hour and 28 minutes later of a heart attack. He was at his wife's side when she died.

"The last thing he said to her was, 'It's OK. I love you. We had many good years goether. I will see you real soon,'" said the couple's granddaughter, Erin Miller.

'I just think he died of a broken heart. I don’t think they could have lived apart from each other.'

The cause of the death of bereaved longtime spouses, the study found, can be a condition known as takotusbo cardiomyopathy or sudden heart failure linked to an emotional experience. Some experts have dubbed the condition 'broken heart syndrome.'"

What Happens When the Caretaking Partner Gets Sick?

She is in her late fifties. A financial planning executive with a successful bi-coastal business that requires frequent flying and rushed meals. While not athletic, she has always been active. In that out-of-nowhere way that illness sometimes hits, she came down with a systemic infection that flattened her and almost literally took her breath away. Sitting exhausted her, and any activity left her panting for air. She has been treated for the past six months with a combination of antibiotics, steroids, and rest. She is not who she was, and is still discovering who she can be.

Her husband has been a loving and attentive caretaker. He took charge of their interactions with the world - from grocery shopping to medical specialist hunting. When she was too exhausted to shower, he bathed her. He went to every doctor visit with her and remembered the information she was too distracted to hold onto. Her job was to rest and recover. He took care of everything else.

Then, he was clipped by a car while riding his bicycle. His ankle was broken. Now he is in pain, and his mobility is severely limited. And he feels rotten - for himself and for the ways in which he can no longer help her.

They are trying their best to be kind and loving to each other; that has always been their way. But pain and exhaustion take a toll on the best intentions.

They have a community of friends who are pitching in to help. And they have an excellent collection of take-out menus from restaurants that deliver.

Underneath the practical and emotional strains, they are strong, and they are scared. A lot - like laundry and work projects - doesn't get done. They look to the future for signs that things will get better because the present is one big ball of uncertainty and hurt.

Have you ever been in the situation where the caretaking partner got sick or had an accident? How did that affect your living situation? And what helped you cope?

Check Out This Week's Grand Rounds

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