BlogHer - My Spouse, My Caregiver - Comments

You're Welcome!

apietrangelo — Mon, 01 Sep 2008 10:56:24 -0500

SpondyGirl,

It always helps to know that you are not alone and that there are other people who are where you are.

It's difficult at any age, but to be 26 years old and to suddenly become dependent on your husband is a shock. You may not be the "fun new wife" you wanted to be, but together you will discover things about yourselves that you never knew and your relationship will be stronger for it. "In sickness and in health..." are powerful words, aren't they?

If you're intereted, my husband writes a "caregiver/spouse" blog. He deals with MS, but his words ring true of any condition:

http://www.healthcentral.com/multiple-sclerosis/c/95808

Best of luck to you both. Stop by anytime.

Ann Pietrangelo

My Website: AnnPietrangelo.com

Thanks...

SpondyGirl — Mon, 01 Sep 2008 00:18:51 -0500

I think I needed to read this. I'm in a rebellious phase. My husband and I have only been married for a year, and while I've always had chronic back pain, it's recently become so debilitating that I am looking at a spinal reconstructive surgery in a few months, at the age of 26. Upon doctors orders, I'm not even allowed to vacuum anything. But even though I know I make both our lives harder, sometimes I get so frustrated by not being the fun, new wife that I had planned to be that I'll just pretend that my pain and limitations don't even exist. And then we both pay for it for days, because I've wiped myself out and I can't even do the few things that would normally be permissible.

Anyway, sometimes it makes such a big difference to see these things put into words by someone else, someone obviously wiser and more experience in this area.

My Spouse, My Caregiver

apietrangelo — Fri, 29 Aug 2008 10:55:06 -0500

It’s a fine line, when a spouse is also a caregiver. When I received a diagnosis of MS, I had NO choice in the matter. The man in my life DID. Imagine the task of having to weigh that issue and actually choose. No, he never hinted at his thought process and, no, he never showed the slightest sign of indecision, but I have to assume there was some wrestling going on there. We were married the following year.

I have Relapsing/Remitting MS, so much of the time the role of supportive spouse is sufficient and I take care to maintain my independence. I want him to think of me as his wife, not his patient.

Sometimes we’re in that middle ground, and I’ll ask him to carry something, or I’ll leave a chore or two undone. We’ve worked out a silent system of sorts. If I leave the laundry basket full of clean clothes at the bottom of the stairs, he’ll pick it up on his way by and so forth. We hum along like a well-oiled machine in this mode.

When we reach that full blown relapse, however, he becomes the caregiver. Without much fanfare, he takes over my chores, the driving, the shopping, shuttling me to the doctor. He’ll call my office and let me sleep in. When I shower, I’m aware that he’s got one precautionary ear tuned in for signs of trouble. He’ll load and administer my daily injections when necessary. Several times a day, I’ll hear his voice coming from our home office, “Hey, Babe…how’re doing out there?”

MS is clearly OUR issue, not mine. While I carry the load of the physical manifestations of MS, my husband carries the load of the on again, off again caregiver and spouse. Together we share the burden of medical and health insurance woes and working our lives around the relapses. It is a challenge we accept and share as a couple. He does what is needed without hesitation or complaint. In return, I show my appreciation whenever and however I can.

Whether it’s your spouse, your parent, your sibling, your child or a friend, be aware of the silent burden of your helper or caregiver. I sometimes keep symptoms and frustrations to myself because I don’t want to complain too much. My guess is that my husband does the same. Show your appreciation. Pay attention the little things as well as the obvious things that are done on your behalf. Imagine how you would feel should roles be reversed. It’s not so easy to watch someone you love struggle.

Have you hugged your caregiver today?

Living with MS: Caregiver/Spouse Blog

Previously posted on the blog: MS Maze