Monday, January 28, 2013

The Tough Talk: End of Life

Christopher MacLellan (aka, 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 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 “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 -
He thought it would be funny to play dead!
Chris and his partner, who he refers to as “The Little One,” recently discussed end of life issues on Your Caregiving Journey with Denise Brown.  A blog post of his followed as did a Twitter discussion (search for #carechat to see the discussion). 

In his blog post, Chris relayed five questions created by Denise and described in her recap of the radio show to help family caregivers 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 the questions Denise created 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:

“No, I want to be buried next to George Washington.  Haha.  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 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.


June Skalisky Gillam said...

Wonderfully rich! Funny and touching together--thanks for this, Trish, and for all you do.

Unknown said...

I love this post...for so many reasons that have no words. xxx

Trish Hughes Kreis said...

June, Thank you for your kindness. Robert continues to amaze me with his view of life - I could learn a lot from him!

Trish Hughes Kreis said...

Gina, You're so sweet. I'm happy it touched your heart. xx