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Caregiver spouse

By June 22, 2016 - 11:22am
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My husband of 20 years has been home and disabled for the past 9 years due to ME/CFS. We have 2 teenage children. I feel guilty because I Do not know or want to live in this situation because it is making me so unhappy. For years, every conversation was about his illness. I already suffer from anxiety/depression and feel I am fighting a sinking ship all the time. My husband tells me to live my life and that I should be grateful for my health. I do live my life but I am lonely. We do not socialize or even do anything interesting together. I had two sisters who died from ALS years ago. He reminds me how would they feel if their husband left them while they were ill. I think that is an unfair but true statement. It breaks my heart but do not feel a connection. Does anyone have ideas to help me? Am I just completely selfish? Anyone have similar situations ? Thanks.

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HERWriter Guide

Hi Joanna H

Thank you for reaching out to EmpowHER!

You're not selfish at all, you are totally normal. Caregiver stress is a real thing and many caregivers have it. Feelings include stress of course but also anger, sadness, guilt, disappointment and even anger at the ill spouse. All normal. And funnily enough - your spouse probably feels all these emotions too as well as physical pain.

Your mental health is very important. Most cities and towns have caregiver support groups that I highly recommend you find. It's a great way to express how you feel with no judgement because people in the group feel the same way but like you, can't really express it to those who don't really understand.

A google search will find groups for you pretty easily. Even if you have to travel for one, it might be worth it.

Talking to a counselor will also help - especially for feelings of anxiety and depression. You should be grateful for your health of course - we all should be. But you need to get out and socialize on your own with friends and family. Spend quality time with your children, they may be under stress too.

You really do need a life outside of caregiving; for everyone's sake and especially your own.

We have a very busy thread for caregivers and spouses of the chronically ill - please take a look at it here and you will see you're not alone by a long shot: http://www.empowher.com/community/ask/living-and-possibly-leaving-sick-spouse-heartfelt-story-reader-looking-advice

Let us know what you think.


June 22, 2016 - 12:09pm
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