Monday, January 14, 2008

Care for the Caregiver

I always thought that I'd rather be the one suffering the illness rather than the partner witnessing and feeling helpless to make it all better. Even though Richard, my partner, went to extraordinary lengths to make my life as comfortable as possible, his quiet tears fell daily because even his most heroic efforts could not stop my pain. Luckily, he had a brother, friends, and business partners who sustained him.

I recently was informed about a caregivers' support organization: Well Spouse which is a national, not for profit membership organization that, for a nominal membership fee, gives support to wives, husbands, and partners of the chronically ill and/or disabled through support groups and information on a wide-range of practical issues facing spousal caregivers.

Richard didn't use a support group, and neither did I. I'd be interested in hearing from caregivers about what support you found helpful; and also where were you disappointed in seeking support. If some of you check out Well Spouse, please let me know about your experience.


Anonymous said...

I just came across your website and have already profited greatly from it. My wife was recently diagnosed with a neoplasm of the thyroid that needs surgery to determine if it is benign or not. The angst I feel is deeper than the normal concerns about the outcome of the surgery and diagnosis itself. It goes to nature of our relationship and the feeling of loss that something has changed between us because of this medical condition. It is like a third party who suddenly interrupts the intimacy of couple’s relationship. And it’s a third party that invites in a whole lot of its friends, in the form of doctors and concerned relatives who are focused on the patient and forget about you as a couple. You also put in words something I had been feeling strongly but could not articulate, when you said that one of the sadder casualties of illness is our image of our partner. I hurts greatly not to be able to look at my wife and see the same person I’ve known for 20 years instead of the “gray profile of disease.” Luckily for us there is hope that this will all be over soon once she has the surgery and her lump turns out to be benign, as about 80 percent do. But until then, and should the illness go on longer with more treatments needed, thanks for putting into words what I am going through right now.

Deb said...

I am going to link your site. I think there is so much here that can help others.

And yes, it is so hard for the well spouse. As a society we tend to medicalize people, so we see only the ill person. Not the caretakers who love, care and grieve.

Barbara Kivowitz said...

Anonymous - you express your sense of the multiple losses illness inflicts on the relationship so eloquently.
thank you!

Deb - thank you for linking. I think your blog is terrific - and I'll link back to you.