This article is about a husband and wife; a patient and caregiver. The article begins with this question: "As a loved one arrives at the end of life, how do we know when it’s really over?"

The husband was a kidney dialysis patient for nine years. One day the husband refused to go to dialysis. His wife, the caregiver, after much tough talk, persuaded him to go. He died several months later.

As the wife tells us, "... for years now I have wondered what I had failed to understand that day."

What had I missed? Looking back, I didn’t grasp that not only was Bill sick of dialysis, but he was protesting the quality of life it maintained. He never said he did not want to live anymore, but paradoxically he also was suggesting that he no longer had the courage to be a dialysis patient. Although Bill was not talking about giving up and dying, somewhere the spirit in this brave, brilliant man was fading.

She also tells us:

I do not call myself to task for my lack of understanding. It is probably useful that I didn’t understand, or I would have gotten myself and my family into a dreadful existential tangle. But at least, looking back, it has helped me call a spade a spade and give Bill credit for what he, at least, knew. http://www.nytimes.com/2011/09/06/he...%2Findex.jsonp

This couple's experience immediately resonated with me. My Dad passed away just over ten years ago. One day about six months before his death, my Dad told me he no longer was going to take his medication. "It did not work anyway," he said. I talked him into taking it.

Years after his death, I realized in his way he was asking for help. My failure to truly listen sometimes haunts me. I did not even suggest he talk to his treatment team about the medications not helping. My Dad had endured many health problems without complaining. Perhaps his protest about the medications was an indication he too had lost the spirit to fight, especially when he was not getting the help he needed?

[lizardlady]

Byz, please don't be too hard on yourself. There's no instruction book for how to be a caregiver. And it's really easy to second guess ourselves after the fact. This one reason when I talk to people about caregiving I encourage them to have open discussions with the person they are caring for. Better yet, have those conversations ahead of time. How is the caregiver to know if "I'm tired of dialysis" means the person is ready to give up/die or means they are tired having to undergo dialysis?

[shezbut]

(((Byz)))

I agree with lizardlady.

It's a lot easier to look back and read things into what was happening then. You did the best that you could with the information that you had then. It is often tempting to look back and kick ourselves for ______, but we didn't know. Try to be gentle with yourself.

Gentle hugs sent to you..

[yellowted]

I too feel it is best to talk about the end well in advance, because when you are in the thick of it you are too wrapped up in practically/ physically caring for your loved one, dealing with your own emotions and trying to keep a 'normal' life for them to pick up on what they do not say.
once the end has come you have time after to think what if, but it really does not help to dwell on what ifs, better to put you energy into remembering the good times.

[cpdmommy]

as someone who is a caregiver and sadly someone who gets caregiving this hit me hard. I get monthly transfusions, and lots of bloodwork and recurring infections and I am so sick and tired of being sick and tired. Its pretty bad when your 3yr old wants to know why your always sick. There are so many times I question whats the point of fighting a loosing battle and then god sends me my reminder/. I have a little boy with severe PTSD and speech and articulation problems and right now he needs me. Sure I can look at it as my quality of life sucks and it does but at least today at this moment I choose to look at my sons smiling face and fight for one more day.