The Tough Talk: End of Life

Chris (aka @thpurplejacket and The Bow Tie Guy) cares for his partner, Richard, who has esophageal cancer and was given three to four months to live – 16 months ago.

Chris is an inspiration to me in so many ways; he is a loving caregiver to his partner and is an avid advocate who created his blog The Purple Jacket to focus on “LGBT Seniors and the struggle of aging in a straight society.” Chris is also a “healthy caregiver” having lost 100 pounds and being one of the creators of the Caregiving.com “V-Ride” – a virtual bike ride meant to inspire caregivers to move even if they cannot leave the house to exercise.

Robert a few years ago - Playing dead for laughs!

Robert a few years ago – Playing dead for laughs!

Chris and his partner, who he refers to as “The Little One,” recently discussed end of life issues on Your Caregiving Journey with @Denise. Denise posted a recap of the show (A Caree Shares His Thoughts About End of Life) and moderated a Twitter discussion last night (search for #carechat to see the discussion). In the recap, Denise suggested five questions to help get the usually difficult end of life discussion started.  After discussing my husband’s wishes with him, I turned my attention to Robert.

After all, Robert has lived long past his expected expiration date. That may seem like a cavalier attitude but believe me, after numerous surgeries, life-threatening infections, too-many-to-count concussions, a coma and serious accidents due to seizures causing falls – I know how lucky we are to still have Robert around and consider each day he’s alive a “bonus” day. Even after all of these close calls, I realized I hadn’t had the end-of-life conversation with him. I do have Power of Attorney for Robert and he agreed at the time to a DNR (Do Not Resuscitate) but I hadn’t really talked with him about his wishes when he died.

I guess I thought the conversation would be difficult not only because it’s a touchy topic but because Robert has intellectual challenges. He thinks, well, simply and I wasn’t sure how the conversation would go. I was inspired by Chris, Denise and the chat on Twitter so my husband and I talked with Robert.

I used Denise’s questions as a guide to the conversation and started by telling Robert I knew he was very religious. I then asked him what he thought would happen to him after he died.

Robert’s answer was matter-of-fact: “I know I will go to heaven.”

There must be comfort in such conviction.

I continued:  Do you want to be buried in same place as mom and dad?

Robert said, “Yes.” Then followed that up with a joke: (typical)

“No, I want to be buried next to George Washington. Ha ha. Only joking. Only joking.”

He continued (I suppose in case I didn’t know he was joking), “I want to be buried next to my mother.”

Is there anything else special you’d like to have happen after you die?

Robert:  I want to be buried next to my mother and step-dad, George.

I asked if it was okay if he was buried next to our dad (but close to Mom and George) since I thought there was more room by him and Robert said that would be fine. (My dad wanted to be buried next to my mom since she died first but since they had such a volatile relationship in life, we didn’t want to create any problems for mom in the after-life. He’s in the same cemetery but just out of throwing distance. Believe me, it’s for his own good.)

My next question to Robert was, “What’s a good day like for you?”

Robert looked at me like I just asked him something crazy and said, “Just about every day is excellent.”

Duh! What was I thinking?

I then asked Robert if there was anything he wanted to do before he died and his only answer was that he would like to read the bible more.

Have you lived a full life?

Robert: Yes.

I tried again: Do you want to do anything else before you die?  (I don’t why I kept asking this – was I expecting him to say he wanted to parachute once or go to Disneyland one more time?)

Robert: I want to do my word search puzzles.

I continued (obviously, this question was more important to me than him): How do you want to spend your time before you die?

Robert: I want to call Judy to get my leather jacket back. Also, I have some shoes there. (Robert lived with his companion, Judy, for many years before we realized he needed more care to stay healthy and safe. He continues to talk about a leather jacket Other Brother gave him for Christmas one year and is certain it is still at Judy’s house. I think I might actually have to check with her to see if it is indeed at her house.)

Moving on from the leather jacket and any big end of life plans he might have, I asked, “What do you want from me and Richard before you die?”

Robert: I don’t need anything. Just your love.

Richard (aka @kreisler) and I shared a “aw, how sweet” moment with this answer.

So far, Robert had no problem answering the questions and didn’t seem uncomfortable at all.  I was curious about one more thing:

Do you think if you were sick and going to die, would you want to die at home or in the hospital?

Robert: Probably at home.

Richard asked him, “Do want machines to keep you alive?” Robert didn’t quite understand this so I explained that it would be like if he was in a coma and not able to be awake again.

Robert: I’d like to pass away then.

Do you have any questions for us?

Robert: Is it about 8:30 in Modesto?

Oh boy. I know where this is going. No you can’t call Judy right now about your leather jacket.  I’ll call her for you another time and see if she has it.

Robert then reminded us he was about ready for his Rocky Road Ice Cream.

End of life discussions difficult? Ha! Nope, not according to Robert.

The difficult conversation is going to come if I can’t find that beloved leather jacket.

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Avatar of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

6 thoughts on “The Tough Talk: End of Life

  1. Avatar of DeniseDenise

    Hi–I think this is just awesome. How do you feel today about the conversation?

    I’m wondering if the original jacket is not found… What would you think about you, your brother and Robert heading to a store to buy a replacement jacket? Perhaps an outing with the two of you to get another jacket would make a very good day for Robert. :)

    Reply
  2. Avatar of ChrisChris

    Hi Trish! Thank you so much for your kind words and encouragement. I sent ‘TLO’ your blog post and he was moved to know that through the radio show, he has had a positive effect on others. However, the real credit goes to Denise. Denise has this soothing style about her that just makes one feel comfortable when chatting with her. I know TLO was quite comfortable chatting on Saturday with Denise and felt like he had known her for years when actually, that was the first time they had talked.
    ‘ELO’ discussions are never easy, but so meaningful. I appreciate you sharing your story and I appreciate you including us. TLO sends his best regards and well wishes, too!

    Reply
  3. Avatar of KathyKathy

    Security of the believer is so simple yet we try to make it complicated. I’m glad he has a peace about his life after death. :)
    And I’m glad he was able to convey his feelings about life support.
    I so loved this picture of Robert when you posted it the first time! It cracks me up and I can almost hear Robert cackling with laughter. Has it really been that long ago?

    I also enjoyed the caregiving journey with Chris and The Little One. A topic that everyone can relate to and at some point everyone will face in one way or another. I appreciated TLO sharing his feelings.

    So what’s the verdict on the jacket? I agree with Denise, perhaps a shopping trip is in order!

    Reply
  4. Avatar of ejourneysejourneys

    I love Robert’s answers! :D Simple, concise, and to the point. I imagined asking my partner those questions and I admit I got into a wee fit of the giggles. :-) I hope the leather jacket turns up.

    Reply
  5. Avatar of TrishTrish Post author

    Thanks, everyone! I will keep you posted on the jacket. I appreciated TLO sharing his feelings on the show, too, and am happy he was able to read this post. @ejourneys, Robert has sent me into giggles plenty of times with his answers to my random questions. :-)

    Reply

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