Hi Nouce, 
Welcome to our community - I am glad you found us. Here you will find others who can understand and support you.

Caregiving takes a toll on people – I can fully understand why you are ‘worn out’. Mary M. on the thread New Here  is also caring for her husband at home. 

You might find the article Caring for yourself  helpful. There are a couple of ‘Canadian specific’ pieces of information, but I think for the most part it could be of benefit no matter where you live.

Can you tell me a little more about yourself Nouce.  Do you have family close by?  Do you and you husband have the support of healthcare providers who come to your home?

Katherine

Thanks for the article on caring for yourself. I find this a really struggle.

We have a very supportive church community, and our two daughters and their families also care a great deal, although they both live at a distance.

Right now we are enrolled in hospice, but because of the long nature of our journey with this disease, we are always at risk for being discharged (US Medicare pressure is to get people out of hospice). It will be much harder if we do not have the nurse and social worker to help us strategize.

My fear is that folks will tire of this story, since it is so long and slow, and they can't see the little steps of decline I see every day. I also wonder about my stamina to walk alongside if my husband's illness lasts for another year, or longer.

But I'm so glad to have found your site, glad you let US-ers read it, and it gives me a sense of not being along.

Nouce
 

Dear Nouce,

Thanks for coming onto this site and being open about your difficult journey. I can only support the info in the posting Caring For Yourself. It is critical for you to find appropriate support resources for you to get the amount of respite that your body needs. Many cities have Paliative Care volunteers that come in on a regular basis to give you a break. Home care services may also be there for you. You may have this discussion with the Social Worker at your husbands hospital. Just do not feel guilty in persuing this aggressively. As you have sensed, you can burn out and end up not being there for your family. Please keep us updated as this community cares about you and wants to give you moral support. Blessings,

Brayden

Thanks, Xenia,

It's been my experience, first giving care to both of my elderly parents who died within the past year, and throughout that whole time for my husband, that my own physical situation can be really problematic: headaches, back pain, a celiac disease diagnosis. Sometimes it seems my body is screaming at me (or with me!).

I'd also welcome hearing how primary caregivers relate to family. I have two adult stepdaughters. I try hard to keep them informed, and have asked them to come and help from time to time (they both live five hours away). They do want to help, but I don't think they understand what is really happening (or perhaps it's too hard for them to accept).

Nancy