Monday, April 8, 2013

Caregivers

Not too long ago, I read a post someone had written taking umbrage with the viewpoint that sometimes the caregiver of an advanced stage or metastatic cancer patient has a difficult time.  I agree that it is the patient who is staring death in the face and has to deal with the personal changes and personal hell of getting treatment.

But, I also think it is difficult for those who love us and are watching us go through this, and wanting to help...but not knowing quite what to do.  Partly, I think it is because there isn't much of a support system for the caregiver.  The attention is focused on the patient...and rightly so, but that doesn't make it easier for the caregiver.

Don't get me wrong...some spouses, significant others, etc. can be....well....real douche bags and idiots.  They take their fear out in the form of anger at the patient....or meet it all with denial, expecting the partner to continue to do everything as they have before diagnosis and treatment.

My own experience has been a husband who tries to be supportive but is scared spit-less ...who sometimes cries because he knows that in all likelihood  I'm not going to pull out of this one and time is limited.  Not to mention the other stuff he has to deal with...no job...how are we going to pay for this....a kid in college....blah blah blah.  I have taken the viewpoint that there's a heck of a lot I can't do anything about...so while I am concerned about those things....I'm not going to spend any time worrying about it.  Maybe it is silly...but why bother? I can't hire him.  I can't do anything about any of that....but I can try to straighten out my own messes, sell stuff on ebay, etc.

Sometimes I overhear things in the waiting room in the cancer center.  Some of it is really touching.  A couple of weeks ago, a woman who had gotten some treatment at the same time I had the week before was there with her husband to get her blood work done.  While they were sitting there, the husband was trying to figure out where he was going to take his wife....he was talking to her about Lourdes, or to Fatima, Portugal to get help for her....She was largely ignoring him.  It was obvious to me that he felt helpless and didn't know what to do, so he seized on what he could.....asking for help from God at the two shrines.  She was rather irritated with him...and was speaking rather sharply to him.

I felt sad for both of them.  We are in uncertain areas....it is hard to know what to do...and whatever we can try seems to be worth it.  I often get notes from friends or acquaintances with a new miracle juice, diet, or cure.  I try to look at all of this as what it is...people who want to help...people who love me and want to see me well.  And that's a good thing....

7 comments:

  1. Please pass along Marie's painting to all cancer survivors or families of victims. Her last request was to continue passing it along. https://www.facebook.com/photo.php?fbid=234583486601606&set=o.208847489127715&type=1

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  2. Hi Lisa,

    About consciously choosing to not spend precious time worrying about things that can't be helped - not silly - but plenty wise. Thinking of you and appreciating your always thoughtful and well written blog on this gray Sunday noon. There is a sometimes glimpse of sun peeking through, and some bulbs have made it up into beautiful tiny flowers. I guess that's the flip side, as some happiness lies in noticing the pleasurable things we can't will into being and had little to do with creating... I hope you have some bulbs blooming too and I know you are noticing some perennial favorites in your garden coming out of dormancy. xxx Jean

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  3. Well said. I've been on both sides of this cancer stuff. I've been the caregiver and I've been the one getting care. Both side are plenty rough. I don't think you're silly at all choosing not to worry about things you can't change or fix. I also think you're very kind to think the best of people when they send you those "miracle cures" and such. Thanks for the post. It's important to remember the caregivers too. Uncertainty is hard from all vantage points.

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    1. I think what distresses me the most is that many cancer organizations/centers ignore the need for separate groups for caregivers...Hmmm....fodder for another post!

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  4. thank you for your clear voice and real words..you are being heard!!

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  5. I really feel this post in my heart. I went through the painful lost feelings when caring for my terminal niece who was 14 when she passed away. It is very hard on those that can't figure out what to do or where to turn. Stay strong for your husband and well as yourself.

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