Monday, September 7, 2009

How Much Should the Well, Caretaking Partner Share with the Ill Partner?

Here's a question that some comments caused me to ponder:

How much should the well, caretaking partner share with the ill partner?

The ill partner is suffering from body pain, or fevers, or headaches, or cancer, or from the side effects of treatments. He or she has had to give up full engagement with the world and can no longer do his/her old job or hop into a car to visit friends or go to the movies. Spontaneity has been derailed by the medication regimen. Freedom has been shrunk to fit within the boundaries set by the illness. And, as if this weren't enough, the ill partner is, understandably, depressed over his/her symptoms and limitations.

The well partner has assumed more and more of the couple's dealings with the outside world. He/she does the household chores, negotiates with the insurance company, oversees the kids, tries to stay on top of bills & budgets, and goes to work. And, as if this weren't enough, he/she also takes care of the ill partner. He/she helps the ill partner with the daily living activities the ill partner can no longer perform solo. This can include everything from monitoring medication to waking up 4 times a night to help the ill partner get to the commode.

The well partner is physically exhausted and emotionally bone dry. He/she is so busy every moment of the day that he/she can't stop to spare a tear for his/her own sorrow and worry. In those limited moments when there is a brief respite from the storm, he/she starts to feel choked by stress. It is a physical sensation -- as if all the air has been pulled from his/her lungs.

The well partner doesn't know how he/she can go on another minute and at the same time, he/she knows he/she will find the strength somewhere, some how, to continue. He/she doesn't talk to the ill partner about his/her depletion and anxiety because he/she is afraid the ill partner can't bear it -- that it would push the ill partner over some ill-defined edge into full bore breakdown.

This scenario may fit yours, or it may not. Whatever your circumstances are, I'd like to know:

If you are the well, caretaking partner, how much do you share with your ill partner about your situation? What are your choices based on?

If you are the ill partner, how much do you want to be protected from your well partner's state, and how much would you want him/her to share with you? What are your wishes based on?


Anonymous said...

There was a time, early in the illness, that I kept most things private. Fears, worries, stresses. But, since we've been at this for 10 years, I realized we were missing out on more and more "normal marriage intimacy" because of it. I began gently sharing, and was surprised when my husband could understand. It's helped us reclaim some aspects of the marriage relationship. We've all been robbed of so much.....none of us can get through it alone, and keeping things from him was killing me. We will never go out to dinner, make love, walk hand in hand (he is bedbound at home), but he is still my life partner and best friend. Sure, things have changed. Do I share EVERYTHING?? No, but I think we all keep some small secret thoughts and feelings to ourselves, healthy or ill. Maybe that's part of what keeps us separate beings while still being one. I have found that NOT talking often breeds imaginations running WILD. Sharing has kept our relationship close in spite of the very difficult realities of disabling, progressive chronic illness.

Daphne said...

This post spoke to me today, when I'm having a very hard time with my partner once again bedbound and depression creeping in. I fight off my own despair and longing for something resembling a normal life and choke down my envy at others' ability to do things like grocery shop together, or even (imagine!) go away for a weekend.

I don't share much of my own despair because I find it compounds hers, and that is even MORE difficult for me. I know that sharing is better... but sometimes I wonder. Maybe I should just share with a friend, not my partner. I do think it's too difficult for her to bear it when I'm feeling so stressed, worried, scared, disappointed, angry, tired and fed up. She really truly doesn't want to hear all that.

And yet I listen to her depression.

Bad day. Sorry. Glad I found this blog.

Barbara K. said...

Anonymous and Debbie - thank you for your honest comments. This is such a difficult area, and I don't think there is any right way to do it. I do think that the load a caregiver carries is big and complicated, and the emotions that go with it do need expression, somewhere.

The habit my partner and I developed is for him to tell me he has some things to share and ask if this is a good time to do it. On better days, I am happy to hear about his experiences and emotions. It helps me feel like I am giving back to him a bit of what he gives to me.

Anonymous said...

It's even harder when your partner suffers from a mental illness. When I have reached my limit with my husband's negativity and distorted perceptions, I try to choose my words carefully and tell him, "No more, please. I can't handle it."