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I believe CALS begin grieving from the day of diagnosis.

It's the same here, once registered with palliative care, death at home is totally dignified and in your full control.

I do remember when it was explained to Chris though he made me interpret his comment to them which was: So she could smother me with a pillow one night and no one would ask any questions? (he was serious, gotta love FTD)

Palliative care gave me brilliant phone support, but no one asked me to keep any record of what meds and how much I gave him when. They just kept supporting me on how to keep him completely comfortable and without any fear.
 
>Google Five Wishes. That template gives an excellent and thorough discussion of end-of-life matters to act as your guide.

Ditto that!
 
Yes, hospice participation eliminates the "investigation" step. I made that distinction in my original post. I was posing the "worst case," to make the point that the "investigation step" is not overly burdensome if, as in our case, you do not wish to participate in hospice.
 
Thank you all so much for your insight. I knew I wasn't alone. I just needed to see it. Seems you are all on the same chapter real close to the same page. Since I am in a different town I will check here for grief support.
 
The gift you all have given me is priceless. My biggest fear at diagnosis was for my spouse & children, after the recent passing of my mother in Nov '14 and their step brother a few weeks later, having to tell them of my diagnosis (& I can't tell them, I can't speak) in writing it gives them the same opportunity (in writing) to express their concerns & love. A biggie for me is, at least we can grieve together today no matter what tomorrow brings. With the suggestions from all of you it can be less stressful for all of us. This is all new to us, not knowing where to start is overwhelming. Thank you for a starting point.
My thoughts on the original question is, I am in the same place, unable to speak & I find that sometimes it's easier not to type it out, not to share the feelings. But if I was pinned down I would cooperate fully. Now realizing I'm avoiding the inevitable & the sooner I get this done the more fun and life we can live.
Kat
 
Kat,
I'm glad it has been a fruitful thread for you. Your attitude seems exactly right for the circumstances.
 
Kat that is beautiful.

My Chris could not speak for so long, though he tried, and refused to use technology. What a loss for all of us as his thoughts were all there inside him, but we couldn't share properly.

It is overwhelming at this beginning point, and you will be overwhelmed at times, but we all support each other to help not be pulled under :)
 
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