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Susan Steen: ‘Helping hands’ always pave way for final steps




Steen

Steen

“Our ultimate goal, after all, is not a good death but a good life to the very end.” ― Atul Gawande, Being Mortal: Medicine and What Matters in the End

It’s been over 20 years since my father died, my “Daddy.” My husband and some of our friends pitched in to take care of things at home and with our children so I could spend the last month of his life in the house with my mother and with him.

It was the most beautiful time, and it was the saddest time. A girl saying goodbye to the first man who loved her, sharing meaningful conversation, wanting to not miss a minute of what I knew would be his final time on earth.

I learned a lot during that month, and Gawande’s words say much of what I feel we miss — our goal should be to live a good life to the very end. I’ve learned a few important things along the way, and I’d like to share them.

The past few days have found me hanging out on the third floor of a nearby hospital as an elderly relative has been dealing with a broken hip that needed repair. Like raising kids, it wasn’t until I was in certain situations that I discovered how different things might be from my “understanding.” Remember how I said recently that it’s important to be willing to admit when we might be wrong? This is one of those times.

We’re born. Most of us learn to walk and talk, to drive, to cook a meal, to do laundry. But as we get older, there are things to consider that we just don’t know about until we know about them. Makes sense, I think. Like the fact that once our children are 18 years old, we no longer can speak for them or make decisions for them.

While that’s great if they want us to mind our own business, it isn’t great if they are in an accident and need some healthcare decisions made for them. Every one of us, married or single, old or young, needs to give another person power to make decisions about our lives if we are unable to make decisions for ourselves. It is called a Medical Power of Attorney (POA). It does not give someone permission to control your choices. It protects you from having strangers make decisions regarding your life. Check your state to see what permissions your partner or spouse legally has to be sure and get things in order for the rest of your family, especially anyone not married.

Whoever your POA is, you need them to know what your wishes are. If you are sick or in a bad accident, would you want to be kept alive no matter what? Would you want to be kept alive with a ventilator, and if so, for how long? Would you want a feeding tube used if you were unable to sit up and eat? If you will prepare a Living Will or Advance Directive while you are in a healthy state of mind, it tells those people deciding later what choices you would want made when you can no longer say it on your own.

And this leads me to push you to have the hard conversations. My mother and I have talked quite a bit about all sorts of things, but it still took me by surprise when she said to me during a conversation, “We need to talk about something.” I questioned what it might be, and she said, “Well, I’ve never done this before, died.”

She isn’t near dying soon, but it was such a moment to catch my breath and be so grateful that she would address some things which don’t normally come up during a normal visit. Have the hard conversations with your family members. Our kids should have those conversations with us, so they know for sure what we would want or not want if something changes in our life circumstances.

And in those conversations, we can make the future and the end more pleasant or more difficult. A few years ago, we had a friend who was dying and someone asked if we had spoken with the Palliative Care team. I had no idea what they meant. I checked with the nurse and discovered there was such a team, but I still didn’t understand who they were and what they did.

This past week, I’ve had some good discussions with the Palliative Care group at the hospital, and I want to yell it from the mountain tops. Palliative Care is not the death squad — they are medical professionals who come in when there is a serious illness in order to help the patient and the family get through it all. They ask about goals and focus on meeting those.

It’s been only in the last decade they’ve been a real presence in health care, and I encourage you to look into how they might help you or your family. They work alongside your current medical team. They focus on your goals, not on the end of the line. It’s a big plus to add them to your team.

And then there’s Hospice. They also are not the death squad. I think because so many have benefitted from their presence at the end of life, everyone thinks calling in Hospice is a death sentence, but it is not.

Please ask your medical provider (doctor, nurse practitioner) to help you enlist their help when it is appropriate. They will help you know when Palliative is a better choice and when Hospice is.

Talking to Nurse Hailey M., I heard an important statement in response to my question, “What keeps more people from reaching out for help from Hospice (or Palliative) care. Her answer? Get ready. “The families. It’s the family members who think that by not calling for assistance from Hospice they can get them to live longer.” Don’t stand in the way of a beautiful exit for the people you love.

Quality should be more important than quantity when it comes to life. If you are looking for quantity so you can bank one more Social Security payment, make a better plan. Ah, yes, a plan. Have one. Make one today. Talk with your family. Fix a big pot of coffee and ask questions and share wants and desires. We all will die. But how will we die? I hope it is just after we have lived a good life to the end. Look at wills and trusts while you’re at it.

Put yourself in control now so your family doesn’t have to question things later.

Susan Black Steen is a writer and photographer, a native Tennessean and a graduate of Austin Peay State University. With a firm belief that words matter, she writes and speaks to bring joy, comfort and understanding into each life. Always, she writes from her heart in hopes of speaking to the hearts of others. She can be reached at stories@susanbsteen.com.

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