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 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 -
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.

Chronic Pain: My Turn to Listen

My proclivity toward kitchen fires started when I was quite young.  I was no more than ten years old and baking cookies (I’m going to bet they were chocolate chip but don’t recall for sure).   The house filled with the delicious smell only chocolate chips cookies can emit (and, I’m going to also bet, my younger brothers were clamoring nearby for their share once they finished baking).

Photo Credit: Lowes

When the timer told me the cookies were done, I used both a kitchen towel and an oven mitt (I assume my fear of getting burned from the hot rack led me to double up on the protection) and the kitchen towel somehow touched the oven coils at the bottom of the oven and caught fire. 

There was a lot of screaming (mostly me, although I’m betting mom did her share once she ran into the kitchen) but I somehow managed to get the towel in the sink and douse it with water before the house burned down. 

Thankfully, the cookies were unharmed.

Nothing soothes frazzled nerves better than some delicious chocolate chip cookies. 

Fast-forward through teen years, my twenties, thirties, forties . . . you get the idea.  I have had several kitchen mishaps (okay, small fires or smoke-alarm incidents) through the years. 

These incidents were so expected within my family that I my own mother bought me a fire-extinguisher for a birthday present one year. (My mom could be quite practical).

Happy birthday to me. 

I have not actually had to use the fire-extinguisher because these all-too-often incidents don’t get too out of hand but there was one time the fire department was called.  That one really wasn’t my fault though (I was using an apparently just-cleaned oven at an apartment I recently moved into and the apartment filled with a horrible smell.) 

So kitchen “mishaps” happen but the biggest casualties are usually an appliance (or two).  A toaster caught on fire and was ruined because of an exploding Pop-Tart (it happens – look it up!).  As a poor college student, I wrote to Kellogg’s and insisted they buy me a new toaster.  (I didn’t get a new toaster but I got coupons for free Pop-Tarts which helped my almost non-existent grocery budget.) 

The most recent kitchen “incident” was probably the worst so far and we lost a microwave because of it.  I was making dinner and using the microwave as a timer.  Or so I thought.  I accidentally started the microwave “cooking” instead of timing for twenty minutes. 

Not a horrible mistake unless there’s a plastic container of frosted sugar cookies stored in the microwave. 

Yikes. 

The house filled with smoke and the smell of burnt plastic was horrendous.  Plastic melted into the bottom of the microwave and, even though we were able to clean out the inside, the smell never went away. 

This time the cookies (nor the microwave) could be saved and I had no company to write to asking for replacements – this was all on me. 

My husband and I shopped for a microwave on our next date night (I’m obviously as practical as my mom was) and came home with a gorgeous stainless steel microwave. 

This was the best result of a kitchen fire ever!

While deciding on the microwave, my husband made the comment that we should pay for the install (of course, I had fried the above-the-stove microwave and not a cheap countertop microwave).   Richard was envisioning the lifting and drilling and more lifting.  I was envisioning saving a few dollars.  When the salesperson came over to assist, he assured Richard the install was easy. 

My husband has serious chronic back pain issues.  He is also inclined to do more than he should so when he says we should pay someone to install an appliance, I really should listen to him.  He does not say these things lightly. 

However, I wasn’t really thinking and we both were easily swayed by the salesperson’s insistence that the install would be easy.

Helping my husband lift the very heavy old microwave out of the cabinet and install a new, only slightly less heavy microwave, was enough to make me bang my hand against my head asking, “What was I thinking?!”

Richard was able to install the shiny new microwave but paid for it with increased back pain for the remainder of the day – and the next.

I have learned a few things from this experience:

1. Don't use the microwave as a timer (the risk is too great);
2. Listen to my husband (at least when it comes to his back pain);
3. Always, always save the cookies . . .
   
   
   

CareGifters Book Series: Caregiving Love Stories Needed!

It is hard to believe but we are already moving into our second year of the CareGifters Book Series!  With Caregiving.com as the publisher, caregivers and their carees (and others involved in caregiving) as contributors and me (Trish Hughes Kreis) as editor, we published four books in 2012: Help, Comedy, Forgiveness and Gifts. 

Our next collaboration will be Love, due out in time for Valentine’s Day (noting my usual disclaimer: barring any caregiving emergencies).   

Because I know how caregiving can get in the way of the best of intentions, I am flexible with the deadline and the deadline to submit has been extended to January 28. 

The Love book will include your stories, poems, photos or artwork about love and caregiving.  Love has its ups and downs, challenges and rewards when caregiving – sometimes we even wonder where the love goes!  This book will explore as many shapes love comes in as possible.  Whatever love means to you or the one you care for will be shared with other caregivers. 

An added benefit of sharing our caregiving stories through these books is seeing we are not alone. 

What we experience, others experience. 

What we share helps us (because it’s good to get it out!) as well as others – in more ways than one: the money we raise through the CareGifters Book Series, goes toward the CareGifters Program which helps caregivers in need. 

Please see below for complete submission guidelines from Caregiving.com:
 

1. Your submission must be 1,500 words or less.

2. Your submission, in the form of an essay, short story, narrative or poem, must be related to the book’s theme of “Love.”

3. Your submission is, in essence, a donation. With your submission, you acknowledge you will not receive reimbursement upon the book’s publication.

4. We may not be able to include all submissions in the book. We will notify you whether or not your story will be included by January 29. Each published submission will feature the author’s by-line, bio and website link (if applicable).

5. To enter a submission, email your story by January 28 to love_story@caregiving.com. Please only attach Word or .txt documents (no PDFs). Include your name and phone number in your email.

I look forward to including your stories in our book! 

Guest Post: Caroline McGraw, Author, I Was a Stranger to Beauty

I am honored to be able to bring you a guest post by author, Caroline McGraw, who recently released a Kindle Single through ThinkPiecePublishing called, I was a Stranger to Beauty.   Caroline describes herself as “a would-be ‘childhood paleontologist’ who digs for treasure in people” and, as she says, she “writes about finding meaning in the most challenging relationships” at her blog, A Wish Come Clear.  

Author, Caroline McGraw

Congratulations are due Caroline as her KindleSingle debuted last week at #3 in Special Needs Memoirs and Special Needs EBooks category on Amazon!  Her book price is only $1.99 and 5% of proceeds from the first month's sales go to L'Arche Washington DC, a caregiving organization that provides homes for life for adults with special needs.  (To purchase the book, please visit here).   

Let’s help push Caroline to the #1 spot!

Caroline has shared an excerpt from her book for caregivers, Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive) and Caroline is graciously offering a complimentary copy of the book via email.  Please visit Caroline's blog for caregivers, A Wish Come Clear, for your copy.  

Caroline’s excerpt will also be included in the next Caregiving.com CareGifters book, Love.  (Details on how to submit an essay, poem or artwork to the CareGifters book can be found here).    

Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive)
Pitfall #7:  Holding On

I’m not a parent, so I can only imagine how difficult it must be:  letting a babysitter watch your kids, letting them go off to school, to college, to the wider world. Add to that a child with a physical or intellectual disability, and the letting-go gets even more difficult. To let go, to trust another person with your child or sibling? It may seem impossible. Yet, it’s also extremely valuable, both for you and the person you love and care for.

I remember riding with my parents the first time we dropped my brother Willie off for a respite weekend. He’d be spending two days with a group in a local hotel, going to game nights and swimming in the pool. I knew that Willie would have a great time. Even so, I felt a rush of protectiveness and near-panic as he exited the car. I kept feeling a need to check on him, to make sure he was all right. I could tell that my mom felt this need even more than I did. Though she’d met the staff and talked to my brother extensively and prepared long lists of Willie’s routines and double-checked his food, clothes and medication supplies, she still felt anxious. She’d done all she could, but it all felt so insignificant as he disappeared from our sight. We all wanted to hold on to him as we drove away.

After that experience, I understand why one woman I know literally left the country after her brother came to L’Arche [a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life in community, where I served as a caregiver for five years]. She knew that, if she stayed within driving distance, she’d be sure to meddle with his care. As my mother did for my brother, this woman made extensive preparations to ensure that her brother would be well cared-for. However, when the moment to let go of her brother’s care came, she felt a strong temptation to hold on.

I’ve met other families who have held on to their children tightly over the years. They continue to treat their adult sons and daughters as children. These parents are holding on to their role as primary caregivers, even as their sons and daughters are trying to make a new home and new life for themselves. It’s always difficult to watch this dynamic, and even more challenging to be a care provider in the middle of it. The adult child in this situation has a choice: they can either rebel against their parents’ holding on, or comply with it...and feel guilty for feeling stifled. Most people choose the latter.

To parents, it can seem as though holding on in this way will keep their child safe. When I watched my brother walk into the hotel, I wanted nothing more than a promise that he would be all right. I wanted a guarantee, even though I know better. There are no guarantees. We can only know that, by holding on too tightly to those we love, we are not loving them as we should. As Martha Beck writes in Steering By Starlight: “The goal of real love is always to set the beloved free.”

We cannot wait for a time when we feel perfectly safe to open our hands.

I cannot thank Caroline enough for sharing her excerpt here.  I’d also like to share an overview Caroline writes of her new book, I was a Stranger to Beauty:

How can you keep loving someone who seems to be destroying your family? And how can you separate a beloved person from their terrible actions? I Was a Stranger to Beauty invites readers to walk the road of loving people as they are ... a narrow, challenging road that leads to vistas of unimagined splendor.

Writer Caroline McGraw shares her arduous (yet joyous) journey toward acceptance of her only sibling, Willie. Willie, a young man on the autism spectrum, struggles with self-injurious and aggressive behavior. Caroline and her parents do their best to offer help and support, but Willie’s behavioral challenges continue. In the face of this seemingly-insurmountable difficulty, can they find a way to carry on as a family?

I Was a Stranger to Beauty follows Caroline as she makes an unexpected transition:  from angry sibling of a young man with autism to full-time caregiver for adults with special needs. After graduating from top-ranked Vassar College, Caroline takes a detour from her plan to write professionally in order to become a live-in direct care worker at a L’Arche home. L’Arche, a faith-based non-profit wherein people with and without intellectual disabilities share life together, is Caroline’s training ground for forgiveness.

As she forges new relationships at L’Arche, Caroline  finds herself  at  the  threshold  of  a  new  space  –  a  space  of  simplicity,  small  wonders,  and  overarching peace. In her work as a caregiver, Caroline falls in love with people with special needs, and begins to see the kind of things that only they could show her … namely, how to love, and not fear, her brother.

Beautiful. 

Thank you, Caroline.