Walk a Crooked Path: Talk About the Hard Things

By Saundra Stewart

It seems that life runs in seasons.  Ephesians 3:1-8 (KJV) says it this way:

1 To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
8 A time to love, and a time to hate; a time of war, and a time of peace.

We found these Bible verses to be very true in dealing with ALS.  If you pay attention, there’s a time for everything.  Sometimes you need to act quickly to take full advantage of the time offered to you.  That’s certainly the way it is when it comes to discussing the important things with your patient, be it a spouse, child, parent, or other loved one. 

It was important to me to think I was doing things the way Don would have done them, or, at least, the way he would like to have them done.  So we began to talk about the hard things.  Don had made it clear to me shortly after we married that he wanted to be cremated.  I didn’t agree with that decision, and it took some time to bring me around, but I finally saw things from his point of view.  He asked for particular songs for the service.  He wanted certain people to do particular things.  Don had said that he wanted either of our children or any of our grandchildren to be able to speak, if they wanted to do so.  They didn’t.  We had already purchased our plot at the cemetery years before, so that was one job out of the way.  I went to the funeral homes in our town and got prices for various packages and met with the administrators.  It’s important at that time of life to feel comfortable with the people you’re dealing with.  We made all the plans for the viewing and funeral that we could.  One heavy load lifted.

Don had some items that he prized.  He wanted each child and grandchild to have one of his Bibles – he had several.  So I took care of that.  Our son and daughter each received something that they treasured of Don’s belongings.  His younger brother was on the list to receive Don’s banjo, since he was the only one who was interested in attempting to learn to play it.  Don was able to know who would be enjoying his things after he was gone.  That mattered to him.

“It was important to me to think I was doing things the way Don would have done them, or, at least, the way he would like to have them done. So we began to talk about the hard things.” 

It had been made very clear to me that Don did not want any extra measures taken to resuscitate him if he stopped breathing or his heart stopped.  The first couple times I called 911, they let his Living Will (which we had drawn up years before, as well as the Durable Power of Attorney and Last Will and Testament) serve as the basis for their actions.  As time went on, however, they insisted that I have a special Do Not Resuscitate document drawn up and presented any time I had to call them.  Don and I took care of getting that done.  I had several copies made, and we kept them on file for when we needed them.  The local hospital had copies of all our documents on file.  During one particular incident, I had done compressions on Don until the EMT team arrived.  His life was saved, and several days later he was back home with me.  A couple days later, he let me know he wanted to speak to me.  When I came close he said, “Please don’t do that again!”  I knew exactly what he was referencing.  “What?”  I asked.  “Are you talking about the compressions?”  He assured me that he was.  We discussed it.  I didn’t know if I could stand by and not do anything when I felt like there was something that could be done to save him.  This was one time it was especially difficult to feel that I could fully honor his wishes.  Thankfully, we didn’t have another incident before his death on which my participation or non-participation was contingent.

Finally, we were able to talk about our life together.  What had mattered most.  What had made us especially happy in our time as husband and wife.  And, yes, we would definitely do it all again, if given the opportunity.  Our life and love had certainly been worth it!

Looking back, there are even more things that I wish I had said.  Words of love and reassurance.  That’s hindsight.  The important thing was, we said the things that needed to be said.  Having discussed all these things with Don before the crucial time was upon us was priceless.  It saved me much worry and debate when the time came. 

It may not be easy, but you can handle the time delicately.  There comes a time when the hard things must be put out there and discussed.  Sooner is definitely better than later to talk about the hard things.

Today’s blog post is part of a recurring monthly series from our good friend Saundra Stewart. When her husband, Don, was diagnosed with ALS, Saundra became his full-time caregiver for over 10 years. In her series, “Walk a Crooked Path”, Saundra shares her insights on ALS as a caregiver.

For more information on resources available to caregivers of loved ones with ALS, please visit www.alsa-stl.org.

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