I’m happy and relieved to say that my caregiving journey has been a very good one!  Compared to the medical tasks that many caregivers do, I have it easy: I don’t need to do anything more than giving my husband eye drops and spraying his toe.  My mother, sister and brother, however, performed some personal care tasks for my father that I’d have difficulty doing.  My role has mostly been that of a researcher and coordinator for my parents and for my husband.  As his wife, though, I have also served as his spokesperson when dealing with doctors, insurance, finances, Social Security and Medicare.  I am also his accountant, tax preparer, secretary, listener, friend, driver and bouncer: anyone who wants to talk to him has to talk to me first!  (That is because he is too tired and unfocused to deal with most things and because a wife of 30 years has earned the privilege!)  We have been a team since the beginning of his ordeal and we, as a family, were not going to allow his CRPS to destroy our life.  It changed our circumstances and threw mountains of all sizes in front of us, but nothing that we weren’t determined to overcome.

Caregiving has forced us to see life differently, to understand that some things are not as important as we thought.  We have had to separate dignity and responsibility from ability: no longer being able to go to work, to help with errands or to chip in the way he used to doesn’t mean my husband is any less important in our family.  HE needs to understand this and we as caregivers need to show him.  What we did was to find ways in which he could still contribute by using his remaining abilities as best he could.  He pays 1-2 bills at a time online, for example, but starts a couple of days early because he has to do it slowly,  when he can maintain his focus and when his hands don’t hurt so much.

It hurts to watch someone struggle to do what used to be so easy, like holding a spoon, adjusting his position in a chair or finding a word.  But I have learned not to do everything for him: it preserves his independence and keeps his muscles active (or they can atrophy from lack of use).  It’s important for all of us to be able to say we’ve accomplished something, so I don’t take away his opportunity!  We have also learned not to complain too much, as we know that things could be much worse.  That has been proven in the forums I’ve read!

I’m sure caregivers somewhere are managing all of their responsibilities.  Where are you?  I’d love to hear how you do it!  I’ll bet that you are the kind souls who answer the questions in the forums!  Thank you!  I hear a comforting message of hope in those replies; I hear alternatives and possibilities!  Caregivers need to keep hearing that there is a way to get through their trials, and they need to keep trying new ways to make things work.

Below are links that bring caregivers positive messages and encouragement, as well as information on caregiving.  If you need advice on any aspect of caregiving or you need to vent your frustrations, please visit forums, online caregiving organizations or talk to your doctor about getting help.  Often, counselors are available through the caree’s doctor’s practice, or they can direct you to outside support.  Seek help early!

CareGiving

Caring: Advice & Support Forums for Caregivers

CaregivingCafe

The Family Caregiver Forum

Workshops, Classes and Retreats