Ask an Expert: Does Caregiving Ever End Well?

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Ask an Expert: Does Caregiving Ever End Well?

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autumn-226450_640Dear Denise,

I have a burning question that came to me in the last couple weeks and I can't seem to dismiss it. I thought you may have some insight to offer. Does caregiving ever end well? I really am curious.

Signed,
Hoping for a Happy Ending

Dear Hoping,

I think we all can have a happy ending in all experiences. I think it's being open to a new way of defining a happy ending.

During a caregiving experience, we can hang a happy ending on a recovery, a cure, our caree lives. The difficult part of caregiving is that it ends with a death after we've spent so much time (years, really) trying to avoid death. And, yet, I've never met anyone who's lived forever. We all die.

I think even when death is the end we can have a happy ending. When we have few regrets, when we know we loved well, when we know we have wonderful memories to comfort us, we can have a happy ending.

We might believe that death steals our happy ending. I believe the biggest thief of our happy ending is denial. Denial keeps you stuck in the past, which means you miss out on the present. When you deny the inevitable, you lose the moments right in front of you--the right-now moment to connect, to witness, to share, to love, to be.

So, during a caregiving experience, how do you balance a hope that better will come against the reality that death will arrive? On a regular basis, communicate with your caree, with your family, with your support system and with health care providers you trust to tell you the truth. Ask health care professionals the tough questions like, "What can we expect to happen next month, next year?" Ask your caree the toughest question: "Given the prognosis, how do you want to live?" If your caree has a cognitive impairment, then your knowledge from past conversations about wishes will help you balance the scale.

Understanding the reality of a caregiving situation means you have discussions with your caree about end-of-life, about death and about your life after your caree's death. I am fortunate in that I spend time with former family caregivers and listen as they share regrets they now have. Most regrets involve denial rearing its ugly head. It's what fear takes and never gives back: The chance to have meaningful conversations, the opportunity to be, the wisdom to keep a healthy and realistic perspective.

We can have a happy ending every day during caregiving if we simply allow a new definition of a happy ending. A happy ending is showing up when you would rather hide. A happy ending is speaking up for what's right when your knees knock so much you shake. A happy ending is ensuring your caree's end-of-life wishes are followed, regardless of how scary that feels to you. A happy ending is swallowing your pride so you can be vulnerable, whether alone with yourself or in a crowded room of strangers. A happy ending is speaking with your caree about his or her fears as you disclose yours. A happy ending is understanding that a zealous desire to cheat death can rob you of life. A happy ending is letting go at the very moment you so hope you can hang on. A happy ending means you speak with your family members about your future and your end-of-life wishes. A happy ending means you respect your health and your blessings and you do all you can to keep them. A happy ending is trusting the cycle of life and believing in the sacredness of life and death and all that happens in between.

Of course, during these moments--when you face your fears, when you show your vulnerability, when you let go--you've reached your life's worst moments. With the gift of time, you will see these worst moments as your bravest.

Life gives us test runs every day to create happy endings. I've learned that my days' happiest endings involve being honest, composed, open-minded and steadfast in my purpose. When I'm a bully or irate or operating from tunnel vision or steered off course by another's purpose, I don't have a happy ending at the end of the day. I have regrets.

We all die. Living with a fear of death keeps us from living well. When we aren't afraid of death or our future, when we keep the faith, we can have a happy ending.

When we can sleep at night, we have a happy ending. We give ourselves that peace when we stay present in our reality, which means we remain courageous, forgiving and gracious. Think of all those family members and friends who disappeared because they said they were "too busy" or they prefer "to remember him when he was healthy." These excuses are simply code for: "OMG! I have no idea how to cope with this." Those who performed a disappearing act will most likely lose, or at least misplace, their happy endings.

A happy ending during caregiving involves tears and sadness and very lonely moments--all that comes with mourning and grieving. It's the absence of lots of regrets that will bring the happy.

A happy ending isn't about an external outcome. It's about our internal peace we receive when we know we did our best during a horribly challenging time. It's about moving through your autumn and winter seasons because you know spring will arrive. It's about looking back with pride at your bravest moments.




Stumped by an on-going struggle? Searching for meaning in your journey? You’re not alone! Family caregivers ask Denise M. Brown, Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.

If you or your caree are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.

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Casandra Porter

I was very glad I read this today. It's been weighing heavily on my mind with our current situation and I think about all the good times we've had even during our caregiving days and the good memories far outweigh the bad... the bad ones are just longer and more expensive. It was a great question and equally a very great answer. Thank you.

Sue

Beautifully said, as usual! :)

Susan

What a beautiful and optimistic way of looking at this situation! Well Said!!