How I’ve Prepared Myself for the End of Life

Samuel Kirton avatar

by Samuel Kirton |

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The day you’re diagnosed with a chronic illness is generally a day you won’t forget. The words from my doctor, Steven Nathan, made sense in the moment. They also became a collection of sound bites. They fall into three distinct categories: 1) you have, 2) you can expect, and 3) you should.

“You have idiopathic pulmonary fibrosis” was what I heard on Jan 31, 2017. “You can expect to have two to five years to live” following this diagnosis, he said. Today, I can still hear my diagnosis and life expectancy like they were yesterday.

It was the third category, “you should,” that surprised both my wife, Susan, and me. The full sound bite was “you should get your affairs in order.”

Sound advice

More than 10 years earlier, I’d created a trust along with an advanced medical directive to ensure my desires for the distribution of my estate, along with resolving any questions about my medical care.

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My Post-transplant Life Is Well Worth the Cost

While this is adulting at its finest, it had been more than 10 years since I’d reviewed the documents in earnest. They desperately needed to be updated. These were living documents that needed to be updated on a regular basis while I was still living.

During the preceding 10 years, my employers had changed, some homes had been sold, and my home for our retirement years had been acquired. This was my responsibility, and I hadn’t maintained it properly.

On a positive note, revising both the trust and the advanced medical directive were not daunting tasks. It wouldn’t have been an issue at all had I taken the time to review these documents on an annual or even regular basis.

Final wishes

I wrote in an earlier column that before my bilateral lung transplant in July 2021, we were certain I was not going to make it to Christmas. Planning my own final arrangements was a very sobering experience.

Much of the information required for making those final funeral arrangements was on a form that offered a menu of options. I plan to be cremated, eliminating the need to select a coffin. There’s an option to simply rent a presentation casket to be used during family visitation and a funeral.

Other choices had to be made as part of the process, including selecting a final resting place. While Susan and I made these choices together, it wasn’t lost on me that this was a future burden that Susan wouldn’t have to deal with when I passed.

We formally executed the final wishes documents with the funeral home during the height of the COVID-19 pandemic. My youngest brother, Wayne, who has worked in the funeral business for his entire adult life, assisted us in selecting a funeral home. He reached out to the home in advance of us signing the final documents and paying for the services in advance. He had alerted the representative about my condition and that I was immunocompromised.

The representative brought all the documents to our home. When he got out of his car, he proceeded to don a Tyvek jumpsuit and mask before approaching. The gesture was greatly appreciated.

Back to the present

With my transplant, I was gifted another chance to continue living. I’m now more thoughtful about ensuring these documents are maintained. The need for them and my final arrangements is no longer looming. I’m glad they’re current so that when the days come when they’re necessary, they’ll take some of the stress away by providing my wishes. It allows me to make every breath count.


Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Dev avatar

Dev

Your post was very helpful. Best of life to you Sam.

Reply
Samuel Kirton avatar

Samuel Kirton

Dev,
Thanks for reading the column this week. I am glad you found it helpful.

Sam ...

Reply
BrianPatterson avatar

BrianPatterson

Thank you for sharing your journey with us. Much of what you write applies to me and inspires me to take the steps required to simplify my family's burden when the time comes!

Reply
Samuel Kirton avatar

Samuel Kirton

Brian,
Thanks for reading my column. I am glad you found some inspiration in the column this week. Good luck on this journey and come back to let me know how you are doing.
Sam ...

Reply
Paul Polidano avatar

Paul Polidano

Sam - Your article, though seemingly confronting at first, has certainly given me something to contemplate about as I continue my IPF journey which started with my own diagnosis in early 2020.
Thank you for sharing.
Stay Safe
Paul -Melb Aust

Reply
Samuel Kirton avatar

Samuel Kirton

Paul,
Thanks for your comments. You will determine the proper path for you and I am glad you are considering it as you continue your IPF journey.
Sam ...

Reply
Karen Carns avatar

Karen Carns

Thanks Sam for this important message. We recently met with our financial advisor and we discussed this same subject. We also have done nothing with ours for 10 years and have plans to take care of it in the near future!
Always look forward to next weeks subject!
Karen

Reply
Samuel Kirton avatar

Samuel Kirton

Karen,
Thanks for following my column. It felt good to get it done.
Sam ...

Reply
Darlene Cochran avatar

Darlene Cochran

Sam, I really appreciate your bringing this subject to the table. It is one that most people do really not want to deal with. I agree that it is a relief to know that all will be handled and handled well. Your article was very timely, as I need to update documents and the trust as well. Thank you for the gentle reminder! With the overall scheme of life, it is easy to procrastinate on the unpleasant tasks however some such as end of life plans are needed if we are going to live with grace and die with grace. So, thanks for this reminder of grace! (your word)
Breathing Easy
Darlene Cochran

Reply
Samuel Kirton avatar

Samuel Kirton

Darlene,
Thanks for reading my columns. I am a world-class procrastinator when it comes to the day-to-day tasks of being an adult. In a critical situation, I can absolutely make a decision and respond. Getting this done was necessary.
Sam ...

Reply
Tim J Jackson avatar

Tim J Jackson

Sam, I agree with everything you said. I've done the same. I would also suggest to guys in this situation that you should also train your spouse to the extent necessary, if you have not already done so, to take over how to pay the bills, where to find a copy of all of your passwords, how to do the small repairs often necessary, where to find various things, or how to do them if she doesn't already know. One of my daughters suddenly lost her husband and I witnessed the problems she had because he had not done any of these things including how to get their financial affairs in order after his passing because he had not bothered to prepare her in case of his sudden passing and thus
she had to figure out how to do them in the midst of also dealing with her grief.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Tim,
Thanks for reading my column and for your comment. I could not agree more. I also created my wife Susan a house book. Susan's House Book is a collection of step-by-step instructions for regular tasks such as changing the water filter to the formula for an organic weed killer. That might be a good future column.
Sam ...

Reply
JeanneLloyd avatar

JeanneLloyd

I have IPF and COPD. I was diagnosed June 2021,
And have increased my O2 from 2L to 3L and to 4L when exercising. I would like to read your blog (posts) regularly.
All topics would help me learn more
Thank you. Jeanne Lloyd

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Jeanne,
Thanks for reading my column and for sharing a little about your diagnosis. I hope you do come back every week.
Sam ...

Reply
Randall Thornton avatar

Randall Thornton

Hello. After reading your column about death, I had done the same thing a couple of years ago. I had been thinking about death and how to end it all when the time comes.I have heart problems plus had emphysema. I have always decided on cremation, I just cannot see spending all the money on a casket and ground just to be buried. So after my diagnoise of IPF in 2020, I decided it was time to do something. I met with the funeral/cremation company here in town and got everything written down and paid for. We are using a rented casket for the ceremony and then I will be cremated. From there, don't know where I'll end up. I also filled out a will with all my wishes so my wife doesn't have to worry about anything. She only has to live.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Randall,
Thanks for reading my column and sharing your experience. I hope you come back often to let me know how you are doing.
Sam ...

Reply
john kevin murphy avatar

john kevin murphy

Very interesting thank you, i am 75 with ipf my wive devoced last yeay any tips on what i should do in my situation?

Reply
Samuel Kirton avatar

Samuel Kirton

Hi John,

Thanks for reading my column. Unfortunately, I am not familiar with the process in the UK. I would suggest you seek an estate attorney to help with preparing the necessary documents.
Sam ...

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