cindyz wrote:It's amazing what a few days will bring, and how things can change on a dime...for better or worse. I'm not used to posting in this capacity without a "Stephen question," and my new definition is awkward. I'm not really a caregiver anymore, not right now, and I'm feeling a little lost. I've been thinking about how I could continue to help anyone here, mainly because I want to give back some help that I received so often.
Cindy, can I add that I think you posts going forward from this point of view have the potential to help many people, patients and caregivers alike.
I thought I would post something to the caregivers who still have loved ones living with cancer. I have been very deep in thought/reflection since Stephen's death on May 9th, and of course there are regrets and second-guessing that I suppose come with the grieving cycle. ... So, here goes. One of the biggest changes I think I would have made during Stephen's illness is getting off the internet. I researched all the time, obsessively. I wish now that I had put my computer down and just given him an extra massage. Or just talked to him. Or whatever. Anything with him. I was so busy trying to save his life that I didn't live his life with him as fully as I now wish I would have. I don't blame myself, but looking back I realize how sacred our moments were together. I DID realize that then, just not to the extent that I realize now. Maybe I should have only researched when he was sleeping...things like that cross my mind.
Cindy, most of the responses so far have focused on telling you the 'you did the right thing' - and what I hear in them is that people aren't listening to your epiphany in the way you intended. I'm hearing you say that a little time and a little chance to reflect outside of the crisis has given you the chance to realize that the are things you would change - and 'researching all the time, obsessively' is something that you would re-prioritize so that you'd spend waking time, alive time with Stephen. I'm hearing you realize that all the computer time in the world can't give you another five minutes with Stephen, and this realization that "I was so busy trying to save his life that I didn't live his life with him as fully as I now wish I had."
I believe you when you when you say that you would make different choices - and as hard as it can be to say, I do hope that others can learn from this. People may regret that they didn't find THE thing that would turn care around for their loved ones - but in my experience, they regret more that they don't have that extra five minutes. When the cancer patient is alive, it's very difficult for a caregiver (and sometimes for the patient) to hear that message. It's too easy to convince yourself that obsessively researching = knowlege is power = the best thing you can possibly do for your loved one, or for yourself if you're the patient.
I don't hear in your words that you want to be reassured that you 'did the right thing.' I hear that you know at the time you made the right decisions, but that looking back, you have the strength to realize that you could have made a different decision with your time, and had some of those five minute bits that you can't get back. I'm hearing that you're not second-guessing yourself - but that you're being incredibly brave in trying to point out to others who may be in your situation you can make the choice to spend those five minutes offline and with your loved ones...and that maybe that's a better investment of time.
I'm okay with this, I don't beat myself up about it. However, I do wish I would have had the foresight to know this ahead of time. It's a very difficult balancing act, but being away from the constant everyday-ness of it allows me a certain clearer perspective. Maybe that will help someone here...I hope so.
And I sincerely hope that the hardest folks to reach, the people who are caught up in obsessive Googling disorder (OGD), hear the truth in your words, and take a look at their own time investments now, while they still can. Time is the one thing you can never get back - and I greatly respect your bravery in being willing to recognize that the most important thing might be to spend that time with your loved ones while you can.
Be well, Cindy - and be in the moment, but here's to not letting the moment control you.