On Healing 10/26/2009: Caretaker needing to care better for herself

We first met Trish on these pages in March when she described how her husband, Rick, was in a car accident and paralyzed from the shoulders down, needing extraordinary care. Contrary to doctors’ recommendations, she took him home instead of placing him in a nursing home. Now she works full time, cares for her husband, and is raising their children.

In her first letter, she said she was angry at almost everybody. Besides all her jobs, she still had to battle with the health-care system, nursing agencies, and her insurer. Trish had been in crisis mode for years and was exhausted but felt she had no options. Mostly she was worried about her ability to do all her jobs effectively.

I recently heard from Trish again, but this time she is not just looking outside to understand her suffering:

You mentioned earlier that I must feel so very alone in this process. I do. And now I wonder if my husband and I have sort of a drug addict/enabler relationship. My husband doesn’t have to deal with anything. If his battery charger stops working, I have to figure out a solution. He sits back and says: “Trish, what are you going to do?”

Since the accident, I’ve made all the medical and legal decisions because he couldn’t. I hired a contractor to remodel our house. I hired, trained and supervised caregivers. I found his doctors and his medical suppliers.

At some point, I wanted him to help manage his life, but that has never fully happened and maybe I don’t allow it. If he doesn’t do something that is required, I swoop in and make it happen because I worry something serious will happen if I don’t.

Today he was going to a new doctor. He screwed around all day yesterday playing on the computer, reading and watching movies while I worked at my “away job” and then came home and did my home job. After I got him to bed, he had the nerve to ask me to type up a medication list for his new doctor.

I was a little angry and tired, but I did it, because I wanted the doctor to have the right information. Am I an enabler? I want to stop. I want him to take care of the things he can, but he never does, so I do it.

Talk about feeling alone. I feel as if I am the only one worrying about this stuff.

When we were growing up, I saw how my mom made my dad so helpless. To this day, he can’t (or won’t) make a sandwich for himself because he is so used to my mom doing everything for him. He owned a large manufacturing company until he was 70 but he can’t use a microwave, a washer or a stove. Except for the fact that he can walk and use his arms, he is nearly as paralyzed as my husband.

So now I think I have become my mother, but how do you change things now?
– Trish

Dear Trish,
This issue arises in almost every caregiving relationship. Of course you know the answer or you wouldn’t have concluded your letter the way you did. But before I begin, I want you to answer one question. Are you willing to change? Don’t read any more until you think about that question for a few minutes.

If you can answer that question with clarity and integrity, you will probably feel better. Even if you are unwilling or too scared to change, then make a conscious choice to continue things as they are.

That choice doesn’t change anything on the outside, but it does change your relationship to your life. By making a choice, you are taking a more powerful position than feeling like a victim of his spinal cord injury, your mother’s genetics, or your own neurosis. You’ve made a difficult choice.

But electing to change is also a difficult choice because then you have to confront many of your greatest fears. Clearly one is whether your husband could survive if you gave up control. I also wonder if this role of “the responsible one” has become part of your identity. I suspect that you have been doing this much of your life.

Change is difficult and takes two things: devotion and practice.

You must be devoted to the process regardless of your anxiety or how long it takes. In my work, I find that is the single most important factor in whether couples stay together or people improve – a devotion to get through it no matter what.

Now let’s talk about practice. We know that the demands of your outside life help keep you stuck. But another factor is your “habit” of self-sacrifice.

So here is what I ask to begin your practice. Take 20 minutes every morning, sit comfortably in an erect position with eyes closed. Once you have settled, track your breath. Just notice every in-breath and out-breath as best you can. Your mind will race away, because that’s what minds do. But when it does, gently return it to the breath.

And here is how this practice is a wonderful way to begin to change your habits. Every time you bring your mind back to your breath, you let go of something. It could be the thoughts, emotions, or the stories you tell yourself about what needs to be done, etc. Whatever it is, each time you return to your breath, you are letting go of your narrative.

We will talk more about first steps to set boundaries with your husband, deepen this practice of letting go, and care for yourself better. But for now, take 20 minutes a day to simply breathe and let go of your thoughts and be devoted to the well-being of the person you are.

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