My dad died on Wednesday.

If you recall from my mom’s posts about being his caregiver (see below for links to these*), my dad was very sick for a very long time.

He was diagnosed with Stage IV nasopharyngeal adenocarcinoma in September 2003. The diagnosing physician at Vanderbilt University shook his hand and asked if he’d like to speak with a grief counselor. She offered no treatment plan.

Unwilling to give up so early in the game, Dad went to MD Anderson Cancer Center in Houston where he was treated for months with what amounted to experimental doses of radiation to blitz the tumor that sat at the base of his brain, adjacent to his carotid artery. The doctors removed the tumor successfully.

But not long after treatment cessation, Dad started experiencing nerve pain and after imaging, realized that the radiation had begun to kill healthy brain cells. “Necrosis” it’s called, but we likened it to his brain being burned from within. (Because it was.) He experienced excruciating pain and was given intense medication that caused both physical and mood changes.

In May of 2008, Dad suffered what the physicians at Vanderbilt’s Neuro-ICU termed, “a massive stroke.” It impacted the right side of his brain, thus the left side of his body was affected. Most of the necrosis had impaired the right side of his facial nerves, so he was left with precious little hearing, difficulty speaking and swallowing, and the inability to control the left side of his body, including his leg and arm.

As I sat with him in the hospital after his stroke and in the weeks of recovery both in the ICU and the rehabilitation hospital, I was hit with the realization that my father, as I had known him, was gone.

As I have written before in this space, having a loved one “leave you” before he actually dies puts one in a strange place emotionally and socially. As I described then, I suffered an “ambiguous loss,” and, as Pauline Boss, Ph.D. notes:

Ambiguous loss freezes the grief process and prevents closure, paralyzing couple and family functioning.

It’s a strange limbo, this place of existing where you feel such a profound and devastating loss but have no external validation of your grief. “At least you still have your dad,” people would say after the stroke. Trying to explain that I really didn’t was wasted breath and made me sound ungrateful.

Dad’s fully and completely gone now and I’ve experienced a profound relief in the unambiguity of his departure. It’s not just because he’s out of pain, although that’s hugely important to me, of course.

Rather, I am finally able to grieve the man who I lost those seven years ago. The memories and photos that people are sharing come from a time when he was able-bodied and active, funny and generous. I get to remember him and I get to do it in the context of family and friends who remember him as well.

It’s an odd thing to try to explain, and I’m just beginning to process the many complex emotions churning around inside. I suspect those whose loved ones have suffered traumatic brain injury, Alzheimer’s and other neuro-debilitating conditions will understand my sentiments better than most.

What I have walked away from this experience with is the affirmation that grief is a profoundly, profoundly individual experience. We bring to it not only our relationship with the person we’ve lost, but our own emotions, expectations, spiritual context, and extinguished hopes and dreams. My hope in sharing my experience is that someone similarly situated might find the words to express and comprehend their own “ambiguous loss.”

Be gentle with yourselves, friends.

* * * * * * *

*My mom Sally’s posts about serving as my dad’s caregiver can be found here:

“The End of My First Husband”

“Life As I Knew It Was Over”

“Normal Becomes a Beautiful Word”

“My Second Husband”

“The Death of a Brain”

15 Responses to “Unambiguous Loss”

  1. on 18 May 2015 at 7:37 amSamantha Renfro

    Your blog brought tears to my eyes. First for your loss (those many years ago), but more so for my brothrr-in-law’s last year’s and his wife who was his caregiver. We lost him about a week ago, but we really lost him several years ago. The funeral was a surreal experience as most of us just felt relief that he was out of pain (metastatic bone cancer) and that his wife could lay down her burden. However, it has been a strange week for me with bouts of depression, lethargy, and tears. After reading your blog, I got in touch with what is bothering me. I have been experiencing ambiguous loss for 35 years since my daughter had her traumatic brain injury. I love the “new” Debbie, but grieve for who she was and how different her life could have been. Thank you for sharing your feelings with all of us readers. Recognizing my feelings will help me to get back on board.

  2. on 18 May 2015 at 8:17 amKristine Rudolph

    I’ve thought about you and what you’ve endured with your girl many, many times over the past few years, Sam. You are a caregiving warrior.

    Your line about loving the “new” Debbie … I talked about my “new Dad” a lot. Do you find that it makes people uncomfortable? The reactions I got were mainly mixed but seldom of full comprehension.

    Love and hugs as you process your recent loss.

  3. on 18 May 2015 at 8:34 amMartha Brice

    The first thing I did this morning, the day of your dad’s funeral, was reread all of Sally’s posts. The love, lost joys, pain, strength, and determination are astounding. I so admire your mom and family. How wonderful to have such stalwart role models in your life!

  4. on 18 May 2015 at 8:45 amKristine Rudolph

    That is so lovely, Martha.

  5. on 18 May 2015 at 10:33 amMartha Brice

    I am grateful for many things. One of them is the day of your dad’s celebration of life is the 25th and not today! So happy I will be able to attend.

  6. on 18 May 2015 at 12:32 pmKristine Rudolph

    You were not the only one with the date wrong, Martha!

  7. on 18 May 2015 at 10:48 amLillian Barnes

    Sally and Kristine, I am so very sorry for your loss. I knew Doc and loved him as everyone else did. We went thru a healthcare crisis with my beautiful daughter, Barbra. I know about writing everything down, checking meds, etc. It always seemed to me there was no communication between the people in charge of Barbra’s care. Being told different things by most, and totally wrong things by others was crazy making. Things shouldn’t be that way. This is a wonderful thing you are doing to help others. Thank you, Lillian Barnes

  8. on 18 May 2015 at 10:59 amBarb Williams

    Kristine, I have read many of your writings, but this one is my favorite. You speak of your amazing parents with respect and love. You speak of yourself with honesty and understanding for what was, is, and will be. You speak of those of us who have lost, or who are currently losing, our beloved family members with an awareness of the sadness of loving and cherishing one who is not fully present. But today is your family’s story. Know our thoughts are with all of you.

  9. on 18 May 2015 at 11:12 amNancy Hicks

    Like Martha, I too read again your mom’s posts this morning. She may be the best wife I’ve ever known! “Her price is far above rubies!” Having lost a parent to Alzheimer’s disease, I totally agree that you experience a sort of “death” when the disease robs the victim of personality, memories, and functional abilities. I recall coming home from a visit with Mom years before she ceased breathing and telling my husband that she was “dead.” I visited her “body” for many more years, but “she” was gone. What devotion your mom showed to live with such loss daily; to be the caretaker; to give up her freedom to preserve his. She is Superwoman!

  10. on 18 May 2015 at 2:14 pmCarmen

    What a perfectly written post. You have been on my mind all weekend. I can’t wait to give you a hug next Monday. In the meantime…generous love to you all as you adjust to a new and different life. Your dad was an amazing man loved by so many in this community.

  11. on 18 May 2015 at 2:36 pmKristine Rudolph

    What lovely words. Thanks, Carmen.

  12. on 19 May 2015 at 9:04 amTed Young

    I have this wonderful image of your Dad, Kristene, that makes me smile when I remember it. At the Country Club, on the driving range, Doc hitting range balls. Standing behind him were 8 junior golfers, part of his legacy, watching your Dad intently, and having a great time with laughter and smiles and conversation. One of the junior golfers says, “hit a slice, Doc.” He hits a perfect slicing ball. “Hit a hook, Doc.” He hits a perfect hook landing near a pin. “Now, hit one straight, Doc,” they said. “That could be a problem!”, Doc responded. And everyone fell out laughing together.
    He used to call it “flog” when he played bad golf — a term I get to use often playing. Thank you for continuing to share him with us, may we all be remembered as fondly as your Dad is in all circles.

  13. on 28 Jun 2015 at 11:17 amCaregivers Gift

    Kristine, first of all so sorry for your loss. Reading your article brings tears to my eyes because it took me back to loosing my mom three (3) years ago. I’m reaching out because we are passionate about helping caregivers that have been through what we went through. We’re building a home for a caregiver in need and we wish that people would support this project. It’s a wonderful project that will give a caregiver that second chance. Thank you so much for sharing.
    http://igg.me/at/asmallhomeforalovingcaregiver/x/11147468

  14. on 06 Dec 2016 at 6:07 amRebecca

    Hi Kristine, Thank you for blogging this post, My Beautiful Father had a severe stroke 4 months ago and My Mum and I feel we have also been grieving since then.
    It has been agony and the only thing that has kept me going is being strong for my Mum and my two little boys. Sometimes I feel like I just want to fall in a heap on the floor or that I’m going to wake up as this can’t be real. My Father has only hours/days to live now as there is nothing more that can be done. He has pneumonia again after so many times of antibiotics and he is also bleeding from inside. The doctors say it’s his time now. I don’t know how I am going to cope with never seeing him again, even though I know he will be free from 4 months of distress.

  15. on 06 Dec 2016 at 8:21 amKristine Rudolph

    Oh, Rebecca, I am so sorry that you are going through this. I hope that your father’s passing is peaceful. Thank you for sharing.

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