Holy Feedback, Batman!


After yesterday’s blog post I received a number of emails, along with a few online comments, relating similar situations in families all over the world. I don’t know what surprises me more, the number of issues our parents have or the number of professionals who have issues with families’ decisions. And to think, I was sitting here yesterday afraid of hitting the “publish” button because readers might judge me.

(Insert sigh of relief here)

What this tells me is that none of us are alone, even if it feels that way. Apparently, such struggles are part and parcel for end-of-life care whether it is related to dementia, cancer, or another disease. This feedback further illustrates why I tend to get so frustrated with “professionals.” I can’t help but wonder how much of this disapproval falls under the category of CTA (covering their a$$e$) in the hopes of avoiding a lawsuit later. That sounds cynical because, well, maybe I am. On the other hand, my father might say I’m realistic about what happens when we live in a litigious society.

I honestly believe it comes down to each family collecting professional opinions and expert information. Then, all of that can be paired up with the loved one’s wishes and what the family can handle financially, emotionally, and logistically. What is right for your family may not be right for another family. And what works for your family may be contrary to professional opinions.

There is something to be said for quality of life, too. This is such an important concept, but each family and each profession may define that concept differently. I believe my father’s definition of quality of life would include having his faculties, but he made choices that prevented that from happening. So, what’s he left with? He’s left with being able to go out on his own terms. Chocolate and whiskey are part of those terms.

Professionals don’t have to live with the patients. Professionals aren’t the ones hoping to have a decent relationship with an ever-changing personality. While we pay them for their opinions, that doesn’t mean we must agree.

Besides feeling judged by professionals, it’s easy for you to judge yourself, question your decisions, and wonder “what if.” You are the one who has to look yourself in the mirror every morning. You are the one who will live with regret or satisfaction regarding how you handle the remaining time you have with your loved one. It’s your loved one. It’s you.

I seriously doubt I will ever regret sitting with JHP, JR while he has a night-cap and  listens to Big Band music as his granddaughters dance around his room with the dog. His smile, his calm, and the look on his face when he decides if he likes the beer I brought him tell me he’s okay with his life in that moment. These nights will forever remain with me as good memories, and as a sign that his alcoholism no longer controls my life. Maybe the memories created through forced sobriety would be nice, too. I guess I’ll never know. And I’m okay with that.

Good luck to you on your journey.

Lucy
Jerome’s Daughter

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2 responses to “Holy Feedback, Batman!

  1. As I said yesterday, I’ve had other professionals disagree with me that this was a good decision. But I have defended it, and will continue to defend it, regardless of how other professionals might view my support of your decision. You are absolutely right that it was the best decision for your family, while acknowledging that it might not be right for every family.

    We are taught in social work school to leave our own values at the door, but for some that’s a really hard thing to do.

    • Thank you, Kim. I find it interesting that so many of the private comments I received reflected a lack of support and an abundance of judgment from professionals who don’t handle the end-of-life care. Many felt their loved ones were being punished, as if when they finally couldn’t stand up for themselves, people charged in to decide they’d live the way somebody else wanted them to live. I find this extremely interesting.

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