What if death and life were not opposites? What if they were both parts of reality? If that was true, would we still hesitate when needing or wanting to talk about death and dying? How can we make these conversations more organic, more natural?

When you live with someone who has an incurable, degenerative disease that comes with an endless list of symptoms and side effects, you might keep waiting for the other shoe to drop. Waiting for the end, wondering how it will be.

Such is my life with my husband who has had Parkinson’s disease for the past 19 years.

Expecting Without Waiting

When the doctors made the diagnosis all those years ago, we didn’t know what the life expectancy was for Parkinson’s. Even if we had known, though, this disease is so individual that predicting such a thing would be practically futile.

Thankfully, his attitude is positive, he has remained active, and he has very few other physical problems. Hence the 19 years!

At first, many could not even tell he had PD. He didn’t even feel like he had a disease. So, we didn’t talk about death. We didn’t plan for it for the first few years.

But now, besides having PD, we have reached an age where all our friends are writing their wills and getting their affairs in order to pass to their children and grandchildren. So, it is time for us to prepare.

The Need for Having the Conversation

Several of our friends with Parkinson’s disease have passed away in the last year. Three, to be exact. The first of the group was a close friend, which sparked serious conversation.

Over these last 19 years, every time the topic of death or dying has arisen, we have talked about it casually with no guilt, no fear, no dread, just wondering how it will be. But after our friend’s death, we decided to be more intentional in our thoughts and plans.

We even went so far as to roughly plan our funerals. In a casual conversation on a road trip, while I was driving, hubby was taking notes on his iPad. We asked each other what we wanted at our funerals:

  • Burial or cremation?
  • Location for remains
  • Music – pre and post
    • Sung by special artists
    • Sung by congregation/attendees
  • Speakers/ministers
    • Special Bible passages
    • Special poems/readings
    • Family members to speak or to NOT speak
  • Memorial service vs. funeral
    • Casket present?
  • Open or closed casket, if appropriate
  • Pall bearers, if casket present
  • Graveside service?
  • Flowers or money donated?
  • Organ or tissue donor?

When we arrived home, we transferred these notes to our computer, and we have given a copy to our attorney and our daughters.

It’s All About Preparation

Since that day when we made the list, there have been other times when one of us has spoken of our funerals or end-of-life issues. We speak of these things calmly, naturally, and with no worry or fear.

We feel confident that the wishes of the one passing will be carried out by the survivor. That is a comforting feeling. I attribute most of that to the natural way we have treated the dying process.

The widow of one of our close friends who passed away this year told us about the seemingly endless paperwork and details she had to attend to after her husband’s death.

We hoped we were more prepared because we had already written our wills and advanced directives about 10 years before. But we weren’t sure if the laws had changed in our state, or if we were missing some vital information.

So, we visited a law firm that handles elder care, taking our documents with us. The only thing they needed to change was the wording on the deed to our house, so that in the event of the death of one of us, the ownership of the house would automatically go to the other. Now we feel secure that we are legally prepared for that time.

The timing of the end of life is so uncertain, even when having an incurable disease like Parkinson’s. We do not know WHEN death will come, nor do when know HOW. So, we need to be prepared.

We have found that the best time to talk about end-of-life issues is when they arise, when the subject comes up naturally. If we shy away from it, we may never know the wishes of our spouse for that important time.

How to Breach the Subject of Death

Here are some suggestions that might help when talking about death, dying, and funerals:

  • Do it organically – when it comes up.
  • Speak calmly and without panic.
  • Let your loved one express his/her feelings and wishes without judgment or show of disagreement on your part.
  • Take notes. Due to the emotional component of these conversations, you will likely forget many of the details they share with you.
  • Assure them you will do everything possible to comply with their desires. If they suggest something outrageous, don’t worry about it right now. They may amend this later.
  • If your spouse is averse to talking about this, don’t press them. Perhaps the timing is wrong. The topic will likely come up again, and hopefully, it will be a better time.

Having these conversations in advance helps both of you feel more prepared when the event takes place. This is true for life issues and for death itself.

How have you and your spouse prepared for the future? Do you know each other’s wishes? If you are single, whom have you trusted with your will and directives? Please share any advice you have found helpful!

Let's Have a Conversation!