When the Ill Partner Has to Become the Caretaker

For over ten years I have been the sick one.  The one with a pain condition that is sometimes so quiet, I think it has just crept away.   But then it slides back with a build up of pinches and pulls; or it just steps right in with an hard slam to the gut.

I'm the one who is at the center of the life we've created around pain.  I get comforted.  I get spared the onerous household tasks when pain is on deck.

We know how to live this way.

Now, the tables have turned; the arrow is pointing in Richard's direction. Richard is going to get heart surgery.  We've known this was coming, any time between now and five years from now.  We just didn't think now really meant now.

My pain has no meaning in this new terrain.  In fact, my pain is a stressor to Richard and needs to be kept quiet, on a back shelf in the closet.  And if I have to be somewhat stuporous and slurry tongued to keep pain away, so be it.

The tables have turned and fallen right over and landed on their bottoms.

Richard doesn't really know how to let himself be taken care of.  And I'm not sure I really know how to be strong, the way I used to be in the before time.

So we're going back to the basics -- talking and holding.  I ask him questions.  "How do you feel?"  "What do you want?"  "What will happen?"  "How can I help?" And when the talking brings us too close to an edge, we just link arms, hold hands, or hug until the tremor subsides.

Have you been in the situation where the well partner became ill, for a while, and you had to invert your relationship, with the ill partner becoming the primary caretaker?  What  helped you both?

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?

Caretaker Stress Affects Health of Partner with Heart Failure

From an article by Nicole Stodard in EmpowerHer

A recent study that appears in the July/August 2009 issue of Heart and Lung affirms in a broad sense what anyone in a committed relationship, particularly a marriage, already knows from experience: one spouse’s mental or physical health ailments can, and often do, tax the other spouse.

This study is particularly concerned with the implications of this dynamic when one spouse has some form of heart failure (HF), a chronic progressive condition that occurs when the heart muscle can’t pump enough blood through the heart to meet the body’s blood and oxygen demand.

The study found that a spouse’s distress had substantially greater impact on the HF patient’s overall health and the course of the patient’s illness than the reverse scenario. Considering the fact that 5.7 million Americans have HF and well over half a million new cases are diagnosed each year, this is concerning.

Palpitations

Richard, my sweetie, started having frequent heart palpitations a few weeks ago. His cardiologist discovered that he has a bicuspid valve where a tricuspid valve should be. His blood was sloshing back and forth where it should have been flowing unimpeded to its next destination. His heart was working harder and growing bigger. And while I always thought of his heart as boundless and inexhaustible, in a medical sense, a big heart is not a good thing. The concern barometer is now turning in Richard's direction. The words heart medication and cardiac surgery have entered the landscape of our relationship.

I was used to being the patient. My body and its slips and slides had been the gating factor determining when Richard and I could travel, visit friends, go to a movie, and do the things "normals" do without calculation or consequence. My chronic pain had become the fulcrum on which our relationship balanced. Richard would look up at me and ask me, "How are you doing?" which was code for "Are you having any pain? Because if you are, I will know how to modulate my part in this relationship. I won't bring up heavy issues or suggest a hike. I will postpone my needs until you are feeling better."

This is how a partnership of equals devolved into an distorted triangle where pain came first, me second, and Richard a distant third. Did I enjoy the privilege pain afforded me? Yes and no. Luckily, Richard cared unconditionally and wanted to do things to make a smile appear on my strained and melancholy face. My needs ruled. But the power pain afforded me also stripped me of a sense of real competence. Weakness, vulnerability, and inability became the cornerstones of my authority. And while they offered me control in the external world, they cost me my identity as an intelligent, worldly, empathetic, capable and funny person. Not a very good deal.

And now, Richard is moving into the patient realm. He is still fully functioning, but he gets disturbing heart flutters. When this happens, we both freeze and fix our attention on his chest like hound dogs pointing at wounded prey. I need to be thoughtful, rational, and adaptable. My patient persona is of no value in this new equation.

Couples, especially long term ones, are so intertwined in practical, emotional, and magical ways. We finish each other's sentences. We phone each at the same moment. Like a ballet duo we dance through household routines without bumping into each other. I can tell by the way Richard breathes what is on his mind. He can understand what the slightest tightening of my face signifies.

Richard stayed strong and healthy while I was the sick one. Now I am doing pretty well, and he is having distressing cardiac symptoms. When I was sick, Richard discovered emotional capabilities he didn't know he had. Is it now my turn to polish my tarnished identity and become a healthy, competent adult again?

Maybe in our next phase we can learn to dance again as we did before pain, as equal partners, complementing each other, sharing the load, without illness as our mediator.