Over the past few weeks, my mother Sally has shared the story of caregiving for my father who was diagnosed with Stage IV cancer in 2003 and then suffered a massive, debilitating stroke in 2008.  He requires ’round-the-clock care which she provides exclusively.  If you missed her recollections, you can catch up here:

Before we move on to another story, I thought I would offer some reflections from my vantage point as Sally’s daughter.  When my mother and I started her guest posts, we did so because we believed that there were people out there who could benefit from knowing they are not alone in their journeys.  Being a caregiver can be so solitary and alienating, and we wanted to reach out a hand even if it was just an online one.  I hope that my reflections can do something similar for others as well.

So, here are my reflections, or some of the lessons I have learned through my parents’ journey:

The Doctors Cannot Tell You What Is Going to Happen to Your Loved One

Shortly after my father was diagnosed with Stage IV cancer, one of my best college friends gave me what I now know was the best piece of advice anyone offered me during that time.  Her mother had gotten a terminal breast cancer diagnosis some two decades prior and, despite all the odds, had beaten the disease.

“Kristine,” she said, “The doctors cannot tell you what is going to happen to your father.  They can give you probabilities and statistics but they can’t tell you what will happen because they don’t know.  Now, that can be bad because lots of cancer patients end up dying even though their statistics were good.  But it can also be good because he could end up beating the cancer despite all of their really bad numbers.”

It was a great reminder that although things looked and felt dire, we had no idea what would happen next and that we were best served to take all of it one moment at a time.

Even After Your World Gets Turned Upside-Down, You Find a New Normal

If you have dealt with a devastating illness, accident or death, I suspect you know what I mean here.  You go through tremendous shock, pain, grief, etc.  You may reside in an emotional hell for a period of time.  But one day, you wake up and realize that your worldview now encompasses your new reality.  Instead of the incident or illness being something outside and foreign, it has become part of your experience and who you are.  You still feel pain, perhaps, and that pain may still be very acute.  But it is no longer something foreign or new.

When Your Loved One Requires 24/7 Care, You Cannot Be a Sprinter

Loving someone with brain damage is not a sprint.  It is an endurance event of the most unusual sort.  Early after Dad’s stroke, my siblings and my mother and I would jump with every new symptom, every new issue.  If he went in the hospital, we were there.

We obviously still care about his well-being, but for the sake of our health and families, we have had to dial down our responsiveness.  I can’t speak for my siblings, but my touchstone now is whether my being there would be helpful to my mom.

Losing Someone Slowly Is the Most Difficult Way to Lose Them

Have you ever heard of the term “ambiguous loss?”  I’m not going to lie – I first heard the term on the TV show “Pretty Little Liars.”  But the idea is that losing someone partially – like to a stroke or dementia – presents challenges that losing someone entirely does not.  (I am not “ranking” pain here – just saying that our situation presents unique issues.)

I lost my Dad four years ago.  The man who raised me is gone, and he’s never coming back.  There’s a new person in his body and I love that person very much.  But I have a different relationship with that man than I had with my Dad.  This new man is more childlike, and I have almost a maternal relationship with him.  It may be that because so much of his behavior tracks with the behavior that my children exhibit, I just naturally fall into that role.  I try to not resent the situation, but instead just live in it and accept it for what it is.

But then Father’s Day will roll around.  Or he will have a birthday.  And I’m stuck in the card aisle crying, because how do you buy a card for someone who can’t really do anything?  I mean, all of those “Dad” cards are about grilling or golfing or bowling or drinking beer.  My Dad doesn’t do anything anymore.  He can’t really read, anyway, so it just feels like a waste to buy a card.  But not buying him a card feels worse.  It feels like a denial of his humanity, as if because he isn’t who he used to be, he isn’t anyone anymore.

A few holidays ago I started donating money to a golf tournament and scholarship fund in memory of his best friend who died suddenly.  My mom can tell him what I’ve done, I know that the pre-stroke and post-stroke Dad would both appreciate the effort, and I am using my money for a good cause instead of buying him things he can’t use.

Losing Someone Slowly Is Also the Very Best Way to Let Them Go

When my father had his stroke and was barely alive in the Neuro ICU, I held his arm and said everything to him I needed to say.

This past summer, while on vacation, he had my mom call me into his bedroom so that he could tell me what he wanted me to know before he passed.

I feel so damn lucky for those moments.

I’ve lost people suddenly and tragically before.  The gift of saying goodbye … I wouldn’t trade it for the world.

Sometimes You Just Have to Feel Sorry for Yourself

It would be super easy to never let myself feel pain or resentment because, after all, my Dad and Mom have things so much worse.  But here’s the thing – when my Dad had his stroke, in some way, I lost both parents.  My mom is amazing and she does more for all of us than most people who aren’t caregiving do.  But, still, it’s difficult to ignore the things she can’t do.

My parents can’t come into my house unless my husband is here to get my dad in the door.  When my second and third babies were born, I didn’t have a mom who could help out the way she and I would have liked, because my father required her first and foremost attention.  We don’t get to go on mother-daughter weekends or have spa days together.  She can’t even stay overnight in my home because it’s not compatible with his needs.

So, even though I am nearing forty, a little piece of me gets childish and resentful and angry sometimes.  I let myself feel whatever I’m feeling, cry if I need, then move on.  I won’t shove my negative feelings down because I “shouldn’t” feel that way.  I feel what I feel.  I just try to keep a little perspective and be grateful for what I do have and that helps me maintain my balance.

Watching A Parent Care for Her Spouse Teaches You More About Love Than Just About Any Other Experience Could

If watching Mom care for Dad has taught me anything, it’s that when hunting for a spouse, we shouldn’t ask ourselves, “Can I spend the rest of my life with you?” but instead, “Are you the one I want around when I die?”  Because those vows may say “for better or for worse,” but most of us go into the institution pretty confident that the better will far outweigh the worse.

That’s not guaranteed.

My parents have shown me that love lives in actions.  Love is commitment.  And, commitment is showing up every day and every moment.  Love is not beautiful in a romantic, Hollywood-sense.  It’s being there for the ugliest, darkest days that your relationship brings, and then staying there and living in those moments.

When my father called me into his bedroom on vacation to say what he needed to say to me, one question he kept asking me was what I would tell my children about him after he died.  “Stories,” I said.  “I’ll tell them stories about you.”

Despite all of the ugly memories and painful experiences the past nine years have generated, I know that I have been witness to a breathtakingly beautiful love story.

I think that’s what I’ll tell the kids, Dad.

 

19 Responses to “The Caregiver Series : Reflections from a Daughter”

  1. on 10 Dec 2012 at 9:03 amMonica

    So very beautiful, Kristine. Thank you.

  2. on 10 Dec 2012 at 11:34 amJulie

    I related with every word and your last point was one for everyone — whether in this situation or not. So, so wonderful.
    Thanks so much for this,
    Julie

  3. on 10 Dec 2012 at 12:02 pmNancy H

    Kristine (It’s still hard for me to call you that!), I am sitting here with tears rolling down my cheeks after reading this beautiful post. I identified so with your frustration over choosing cards for your dad and with the changing family rolls that have made him almost like your child. I experienced that with my own dad. You do have the most amazing mom ever! I have watched her “handle” this tragedy — and , yes, it is tragic — with such patience, love, and grace. She is one gutsy lady and the best example I can think of for one who has made lemonade from life’s lemons!

    P.S. When I read that you will tell your children “stories” about your dad, I thought of a wonderful and hilarious personal story I must share with you about your dad when I see you.

  4. on 10 Dec 2012 at 12:06 pmMary Fisher

    Kristine,
    I look so forward to your Monday postings. You and Sally are so wonderful. I know this will help so many caregivers out there……it helped me in more ways than you will know.

  5. on 10 Dec 2012 at 12:50 pmAmber

    So beautifully wriiten and true. Thank you.

  6. on 10 Dec 2012 at 12:57 pmKathy

    I am sorry for your loss, Kristine. Thank you and your mom for sharing your story, it was so moving.

  7. on 10 Dec 2012 at 1:06 pmcarmen

    Kristine these posts are very well written and I can see that they come straight from the heart…

  8. on 10 Dec 2012 at 1:21 pmKristine Rudolph

    Thanks so much, all, for the feedback. I appreciate the fact that you took the time to read, so having your kind words is gravy.

  9. on 10 Dec 2012 at 3:58 pmJenny Williams

    Kristine, this was so beautiful and left me with tears and hope. It seems strange to say hope but your honestly and beautiful reflections show that there is hope in even the darkest and most painful times. You and your family are a blessing and I am honored to have met your parents.

  10. on 11 Dec 2012 at 8:09 amvictoria

    Absolutely wonderful words.
    A few years ago, you wisely told me my own journey having a parent with cancer was a marathon, not a sprint. Those first words from you were among the most helpful in the initial shocked moments, to the tests and surgeries and waiting. I have since passed them on. Thank you.

  11. on 11 Dec 2012 at 1:41 pmAmy West

    Beautiful. I’d never heard of ambiguous loss (as a term) until I read this…I’m passing this along to a friend I know will relate. <3

  12. on 11 Dec 2012 at 2:06 pmKristine Rudolph

    Amy, you have to watch really high quality TV to be exposed to such things. 😉

  13. on 11 Dec 2012 at 8:11 pmJoy P

    Kristine, this is a really beautiful post. Thanks.

  14. on 11 Dec 2012 at 11:04 pmKristine Rudolph

    Thanks, Joy. Thanks for reading.

  15. on 12 Dec 2012 at 11:41 pmMcClain Wills

    So beautifully written, Kristi. Heart wrenching and heart warming. I am going to share this with a friend dealing with some of these same issues now.
    Thank you for sharing,
    McClain

  16. on 14 Dec 2012 at 1:51 amSheri Goff

    Oh, Kristine, I had no idea that your Dad, my cousin, was affected so greatly by his stroke. Nor did I know that he had brain damage from the cancer treatments. I did not realize that your Mom is a 24/7 care giver. Tears just ran down my face as I read your Mom’s posts and then this one. I love the honesty that you both show in expressing your feelings. Your story will be a great help to others dealing with similar situations. Your Mom is truly amazing! I do hope she has continued to let someone else come into their home now and then and give herself some time away.

  17. on 27 Dec 2012 at 11:37 pmSusie Nee

    Like my sister, Sheri, I had no idea what your family has been dealing with the last nine years. I read every post aloud to my husband, Bill, and we both cried and held each other a little closer last night just thinking about what your parents are going through. Keith is very lucky he married somebody so much like our Grandma –strong, loving, kind, brave, positive, and patient. Grandma loved Sally and would be so proud of her for taking such good care of your dad. I know you and your sister and brother are a great comfort to your mom and what joy she gets from all of your children. Thanks so much to both you and your mom for sharing your stories. I’m sending it to several of my friends who are caregivers for their husbands. Sometimes it helps to have someone put your feelings into writing for you and you and your mother have done it eloquently.

  18. on 27 Dec 2012 at 11:57 pmKristine Rudolph

    Thanks, Susie, for reading, commenting and for passing it on to others.

  19. on 08 Feb 2013 at 8:34 amSusan

    Kristine,
    Don’t know how I missed this post in December but so glad I just read it. I was in a very similar situation with my sweet Daddy (who was also a physician) for years as he had chronic leukemia and then dementia for the last years of his life. He passed away in October of 2012. My mother was also his 24/7 caregiver until she became paralized from the waist down 2 years before his death. I too, will always share their love story with my children and grandchildren as it was a story of commitment, patience, love, endurance and grace. I am honored to be their daughter.
    The thing that you wrote about the roles changing really resonated with me. I remember thinking that I got to experience my dad as he would have been as a child and I loved getting to know him from that perspective. He must have been a very sweet, compliant, funny little child as that is how I got to know and love him during his last months of life. I will always treasure that part of our relationship just like I treasured our relationship as a “Daddy’s girl”.
    Hang in there, Kristine and Sally, as the Lord will bless the love you have for Keith. You are in inspiration to everyone around you and I pray these last years with him will be full of blessings.
    Hugs to both of you!

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