Today marks the fifth anniversary of my father’s massive stroke.  (For backstory, you can read my mother’s thoughts on caregiving for him starting here.)

Amid the many, many emotions and thoughts today is the realization of just how changeable “normal” can be.

In my parents’ relationship, normal used to mean two independent people, lives intertwined but separate, committed to living and loving together.

In their new “normal,” my mom makes every single decision, from what Dad will eat to how to invest their money.  She handles every household  task, from cooking and cleaning to changing lightbulbs, from taking out the trash to investigating when things go bump in the night.  Although she absolutely discusses his care with him, ultimately the decisions about how and when to treat the various issues that crop up reside with her.

It’s a lot of responsibility.  But it’s become “normal.”

When Dad had his stroke, family and friends rushed to Vanderbilt.  We put our lives on hold despite pressing issues at home.   For weeks we held vigil, spoke with doctors and nurses, updated relatives who couldn’t travel.  Our children, our jobs, our lives at home, they all just had to pause.

Gradually, as Dad went into a rehab hospital and ultimately came home, the nature of the situation shifted from being an acute source of stress to being a chronic one.  No longer do I have the stress-induced headache, the constant stream of tears and the upended schedule.  The crisis – for now – has passed.

But, in the intervening five years, while Mom and Dad have settled into a new “normal,” the stress has become chronic.  Mom has the strain of caregiving and that strain is real, intense, physical and emotional.  Her kids have the strain of trying to support her from afar and the guilt of not being closer and more helpful.

We have the unique stress of having a family member present, but not.  We include him in as much as we can and our kids have a relationship with him.  But he can’t throw a ball with my son, or dance with my little girls.

Our family gatherings – birthdays, holidays, Grandparents’ Day at school – they all revolve around how to either accommodate him or deal with the absence of my parents.  And although the accommodations are something we absolutely choose to make, they are a source of added stress and strain.  On the other hand, having my parents not there is just awful.

Five years ago, as I drove my very pregnant self five hours to be at my dad’s bedside in the Neuro ICU, I was prepared emotionally and mentally to say goodbye to him.  I am not sure I was prepared for that farewell to take such a long time.  This time together has been a gift and I wouldn’t change a thing.  But there is a unique pain in watching someone slowly drift from life.

The stresses are no longer acute.  They are chronic.  And while they are our new “normal,” and they feel normal to us now, they’re still there.

On top of the chronic strain is the ever-present reality that we could enter an acute situation again at the drop of a hat.  Pneumonia, a fall, another stroke, a cancer recurrence – it’s all just looming out there.  And while anyone can have something terrible and tragic happen at any moment, somehow it all just feels more pressing with Dad.

The reason I began The Caregiver Series was because I felt like there were so many issues related to physical and emotional wellness bound up in the act of giving care to a loved one that we as a society don’t discuss much.  I think chronic stress is one of them for a few reasons.  First, a caregiver may fear seeming ungrateful that her loved one survived if she complains about the strain or stress of caring for him.  (“You should just be lucky you have a husband!”  “Well, he could have died, so you should feel blessed to care for him.”)  Second, the caregiver often puts her needs aside because of the realities of her day-to-day work.  And third, like the proverbial frog in the pot of boiling water, caregivers may not recognize the strain because it’s not of the acute, intense variety they’ve already experienced.

If you are a caregiver to someone who is ill, how do you cope with the chronic strain and stress of giving care?  Do you feel supported by your family and friends?  What could others do to help ease you on your journey?

4 Responses to “The Caregiver Series : Five Years”

  1. on 06 May 2013 at 2:38 pmTova

    Thinking of you – and your sweet mom – today…

  2. on 06 May 2013 at 4:32 pmCarl Peterson

    Vanderbilt is where I have a friend (actually he is marrying one of my good friends from here in Loveland) who is a professor in the nursing school, or hospital or something like that. I will look him up, but he has been there for over 10 years and we have just gotten to know him, but am very impressed. Do not really know what his responsibilities are but he has done a lot of work lately with health care reform, and is an amazing guy. Maybe the families paths have crossed, but he does speak highly of the school and hospital there.
    I was fortunate in one way, and unfortunate in another, as my dad (Lauren-Del’s brohter), passed away in his sleep on Father’s Day, 2001. The unfortunate part was Mom was alone for over four years, and never could talk here into coming back to Colorado. She had a rough last four years, even thought I got back several times a year, and the family did too, she was just too far away. She had a few friends, but they all lived in town( Dad and Mom) had moved to an over 55 community but it was four or five miles from town. Of course the town was Sonoma, California, so visiting her was a fun thing thing to do. Not sure where all this is going, but I guess bottom line is even though your Mom is the care giver now, cannot forget that she needs TLC now and on and on, too.

  3. on 06 May 2013 at 7:21 pmCourtney M.

    Kristine, First, I want to say how much I adore your posts. I just find something deeply meaningful in every single one. Second, this post resonates with me so much. My Mom is in the late-stages of terminal breast cancer. She was a 40-year social worker, and has always said “these things are most difficult on the family.” She is in a good hospice care home, thanks to an insurance policy which she bought years ago, after watching her own mother suffer the after-effects of stroke. She was always one to look out for the welfare of the whole family. My father took on the initial care, with the help of a day nurse (so that he could have some sort of “outside life” with friends, the gym, etc.) He openly admitted that he didn’t feel he was able to care for Mom, as soon as the Stage 4 diagnosis was given. I feel guilty that I haven’t been able to take on a greater role in her care, as I live 5 hours away and have small children, but the truth of the matter is that, for her, she is in the best scenario for her circumstances. I have learned lesson upon lesson in this life stage. Self-care is so important, so that we can provide love and light to the ill person; I never want to impose stress on Mom, only a calming, accepting and caring force for her. Thank you~

  4. on 06 May 2013 at 8:44 pmKristine Rudolph

    Thanks for reading, Courtney. Your words are just beautiful, and your mother’s outlook is so inspirational. My husband’s grandmother died recently. She had been diagnosed with cancer and, accepting that this would end her life, she opted to decline treatment. She died at home under hospice care, surrounded by her family. Her acceptance of her situation was so courageous and your mom seems to have the same kind of courage. Good for your dad, too, for knowing his limitations. Over and over again, I see so much suffering in the denial – denial of what is happening, denial of what we’re feeling, etc. I am always so heartened to hear of people practicing the opposite.

    Thanks again for stopping by.

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