I like the idea of this thread, and I'm sure exclusion wasn't intended. We could just as easily call it a caregivers thread. But I do think there are some unique aspects for those of us who are wives or partners and I like the idea of sharing with people in the same situation as me. I have learned a lot about this disease on this board, and have especially benefited by reading posts from people who are the patients. It helps me to maybe understand what my husband is going through. But, being able to identify another wife/husband/partner in the same situation as me provides me a connection, some commaraderie, and knowledge that I am not alone in this. My best friend is gay and he has a partner of many years...and I would NEVER want him excluded from the benefits of this type of thread just because they're not married, or because he's not a woman. I didn't start this thread, but knowing the kind and loving people that are on this board, I'm fairly certain that no exclusion was really intended.
Now, back on topic. I, too, am the spouse of a Stage 4 patient, and it's new to me like many of you. So, I'm very thankful to find this larger community, but also to find this community within the community who might understand the feelings I have. I think we spend so much time worrying about our partner and what is down the road and, god forbid, what life would be like without them that
we forget ourselves. We can get swollowed up by it if we are not careful. Although it's never far from my mind, I've found I've just had learn to compartmentalize this whole thing. My husband was laid off from IBM after a long career there, and then learned of his cancer (yeah, 2010 was a crappy year!). So...I'm the only one in the family right now with a job and I need to keep it!
I work for a large medical institution, so they've been absolutely fantastic at being supportive, but still I recognize how important it is to keep doing a good job. And, I direct about 25 people, so I couldn't let them all down either. Compartmentalizing is the only way I can see to function at this point. I'd love to hear more from others about how they keep living a "normal" life...or as I call it - the new normal.
Anji! I do the same thing. I'll just rest my hand on his chest in the middle of the night after I wake up...to remind me that he's still here. He almost died last month, so everytime I look at him I think I'm on borrowed time with him. I have to make sure I'm squeezing every good moment out of our life together that I can.
I've also decided to get certified in Reiki massage. I take my first class this weekend and am excited for that. I've read a lot about how it can help cancer patients in their healing - in a complementary way. I know we could hire someone to do Reiki, but I thought it would make more sense if I was the one doing it for him. Has anyone used Reiki?
Anyway...I'm rambling too. I think, like most of you, we could all write volumes. Thank you for being there...friends.
Namaste,
Julia