Chronically ill spouse
Any time I have tried to look for support for the caregivers/spouses of chronically ill spouses I get "how to care for the ill". I have been married to my husband for 10 years and I have to say it has been hell. Financially we have been ruined, our children have heard, "Sorry, we can't today because daddy isn't feeling well" more than I care to mention. Not to mention EVERY bit of the responsibilities of married life have been put on me now. I am mentally and physically exhausted. I work two to three jobs, one full time the others part time, just so I am able to do for our children. I come home to a filthy house, because he is too sick to help and after working 70 hours a week I just can't keep up. I constantly have to hear how terrible he feels, whether it be from him or his family. It's come to the point where I just wonder how much more I can take. I didn't get married so when it gets hard I can just leave. I don't want a divorce but I am not happy at all. I cry myself to sleep more than one night a week. It's as if I am in a bad dream I'll never wake from. I need help. I have no family close by. If I hear the words, "I am hurting" anymore I think I'll scream...I know this sounds like the most selfish rant ever. But where is the TRUE help and advice?
Tisha, I decided to read and respond to your post because it looked like no one else had responded to your cry. I want you to know that I hear you. My husband has been chronically ill for 18 years, and it IS hell. I have thought of walking away, but then I was always stopped by "But who would take care of him?" And the answer was always "no one" because I would never allow my grown children to have to take on the burden of their father unless I was no longer alive.
I, too, work more jobs than I want to, just to cover medical bills and everyday expenses. I am nearing sixty now and it is not nearly so easy to do. Ron's parents have never really been supportive, but it seems to be that way with the parents of the ill partner; they just want to pretend it's all okay. And I know what you mean about financial ruin. We still own a home, but I will never be able to pay off my student loans that I took out to get two graduate degrees in the hopes of a better job. In today's economy, degrees are no guarantee.
Still, we muddle through. I write about it and that helps me. I self-published a book recently Crazy: A Dairy, and while I will never get rich from it, I hope it might help other well spouses to know that survival is possible.
My true advice is this: Your husband is still the man you married. Try to find those pieces of him as you care for him. Give yourself permission to keep something just for you (in my case, I love to knit and buy beautiful yarn!). And when you feel you need to scream, go outside and just pour your heart out to God.
Dr LindaJuly 26, 2015 - 12:23pm
I am so sorry that no one has responded until now - it is a shame there are not more people using this website. I strongly encourage you to check out this site: patientslikeme.com where you can find other people who deal with similar issues - it is a site for patients and for caregivers alike and is usually pretty active. Best of luck to you! Hugs!August 2, 2015 - 12:47pm