Sunday, July 25, 2010

Dual-Illness Couples

It can be all consuming to deal with one's own illness. What happens when both partners are sick?

Cindy had been living in a cloud of ill defined, mercurial symptoms for years. Sometimes she felt too exhausted to comb her long brown hair. Sometimes moving or being touched made her retract in pain. Sometimes she ran a low fever for days without any apparent reason. In fact none of her symptoms had an apparent reason to her doctor. He prescribed Prozac, exercise, and a referral to a psychiatrist.

Cindy suffered her symptoms with fear and bravery; but her doctor's negation of her reality, his condensing it into a ball of dismissal and tossing it to a shrink crushed her. It was her husband, Bob, who mustered the energy and rallied Cindy to keep searching. They did, and found the right doctor who could give a name to her condition - fibromyalgia. Being taken seriously was as important to Cindy as was finally having a treatment path laid out for her. Cindy focused on taking care of herself, while Bob loved and encouraged her, did most of the chores, and worked full time. Things seemed to be working out for the first time in 4 years.

Then Bob got injured on the job. A piece of heavy equipment fell on him and he suffered serious injury to his back. He had two surgeries and grueling sessions of physical therapy. His love was there for Cindy, but his energy and ability shifted to attending to his own care.

Cindy and Bob did well when only Cindy was impaired. Now that they both had serious limitations and pain, their world bounced off its axis, and there was no one else around who could reposition it properly.

House chores were undone. Laundry, dishes, and all kinds of clutter filled the rooms that used to be tidy and inviting. Luckily Bob still received disability payments and insurance from his job.

Pain and fear made them both short tempered, and the only target for the spillover was the other partner.

Eventually, a friend suggested they consult a care manager to help them put resources in place - home health aides, visiting nurse, meals on wheels. This friend also organized a visitation rotation list among members of her synagogue so that twice a week Cindy and Bob were visited by someone who could bring new social energy into the house.

Cindy and Bob still struggle. They miss their old life and bemoan their current one.

Do you have any suggestions or advice for Cindy and Bob? Have you been in the situation where both partners were ill? What was that like for you?


cinderkeys said...

I have no advice for Cindy and Bob, just a thought and a question.

A couple I know became environmentally injured at the same time by mold. By the time I met them they had been doing much better on treatment, but they still weren't well enough to work full-time jobs, and they still had to work their lives around their chemical sensitivities.

As odd as it seems, I always thought that they probably remained stronger as a couple than if only one of them had become sick because they were going through the same thing. Chemical sensitivities are very difficult for a healthy person to truly understand. (I don't have MCS, and while I sympathize with someone who's completely undone by another person's cologne, I don't have any idea how that feels.) My friends understood each other.

Bob and Cindy's predicament is a little different because they've become disabled in different ways. To an extent they can share frustrations about new limitations, but they're not the same limitations.

Now for the question. Where can people find these care managers? As far as I know, Medicare helps cover skilled nursing (blood draws, physical therapy, etc.), but if you need attendant care (help going to and from the bathroom, someone to cook for you), you're out of luck.

Pink Doberman said...

I love lists. I know for me that really helps me take the emotion out of things and deal better with the reality.

They have both gone through a loss. She the loss of her caregiver, and partner, and he the loss of his mobility and the ability to care for his partner.

I think for me just understanding the depth of pain I feel to return to my former life, and the amount of energy I had found myself putting toward that direction, could make a person out of their mind.

Realizing I am where I am and finding the good things about it and focusing on what does still work and what I am still able to contribute have become an intricate part of keeping not only my sanity but also have helped me to not push others away.

When both people are hurting and have loss, the emotional side of things easily gets overlooked. In fact it needs to be paid more attention to. In my feeling anyway. You can easily push away not only family members and friends, but doctors and caregivers who make their money treating you.

It seems that the sane and logical thing to do would be to make a list see what they are each able to do, see what they can work together to do and go about loving not only themselves but each other, with out blame or trying to decipher who feels worse or place blame back and forth.

Being in chronic pain is bad enough with out shoveling out more pain to others just because you are hurting.

This coming from someone who really has to work hard to be a pleasant spouse and patient. I bite my tongue and say the other is right, even if I believe I am. I would rather live my life eating the humble pie, than to live it with out my partner family, friends, and medical care.

I am not always able to do this gracefully, but I really do try, and I am very familiar with the words. I am sorry.