I just needed somewhere to say my stuff

Hi Bowfell,

I feel your pain mate. I truly do.

I was my late wife's carers for 7 1/2 years and I struggled at various times with pretty much everything you've written down; the changes in personality (Steroids, I'm looking at you.), the arguments, the upside down body clock rhythms, the work-home conflict, the constant stream of visitors, the absolute lack of visitors (this will happen) - the whole she-bang.

One method I used almost every night was to give myself 10 minutes alone to go back over the day in my head. I'd go through all the things I had gotten done that done, all the little things I was able to do for Marg. The more I ticked things off, the more I realized that I'd done everything I could and Marg had survived another day of my ministrations (LOL). If something had gone pear-shaped that day, this was my opportunity to examine why it went wrong, what I could do to prevent it happening again and how I could moderate my reaction to something going tits-up.

One thing this mini-break was not for was to be an opportunity to put myself down for any failures or shortcomings.

It was all about what I had done.

Every day can become an opportunity to amaze yourself.

If you're going to try this method, tell your partner what you're doing and why you're doing it, so she is aware that this is YOUR time for HER benefit. Margaret used to enjoy chatting with me after I did my nightly mini-break. She liked finding out what tasks I'd gotten he most pleasure out of and which were the greatest challenges - even with cancer, she was looking out for me. Mind you, this was when she wasn't berating me for making her tea too hot or too cold, not making the bed the "right" way or not getting out the right clothes for her. I was never able to work out which colour "I don't care" is, but it sure wasn't the colours I picked. EVERY.DAY. :-)

Feel free to put your brain scrabble up here. I found it very comforting to find others who could truly appreciate exactly what I was going through. Although there will be times when you feel isolated, you're not alone.

Hang in there bud.

Peace,
Ewen :-)

I am so very sorry to hear about your difficult situation.

You are both living with a lot of tension and worries right now.

Her way of dealing with it seems to be not to allow any moments of relaxation - like sitting with you watching TV or doing other things you previously shared - and by being focused on her hospital appointments. This reminds me a lot of my late husband who, as his illness progressed, seemed to find it more and more impossible to sit down with me and relax; and I came to the conclusion that he couldn't because, if he did, he would feel his suffering or discomfort too much.

It is sad that she has nobody else to share herself with. But please don't feel bad for having to go to work. There are only very few who are lucky enough not to need to go to work to keep their family going.

I am sorry to hear about you two arguing a lot. But that, too, is all too familiar to me. My husband and I had arguments too when I tried to suggest things that might help him.

Please don't feel bad for feeling the way you do. As a caregiver you are still a normal human being with your own dreams and wishes and desires and needs. You cannot forget about yourself.

If writing on here helps you, then please keep writing.

I would hope that some day it will be possible for you to tell her, in a calm moment, how you are feeling and that you wish you could spend more time together and that you, too, are thinking about the hospital appointments and the illness but that it would be lovely to have some quality-time too, especially because you don't know how long this will be possible for.

Lots of love, Melanie