Friday, February 28, 2014

Does the CareGiving Ever Stop?

An article about end-of-life caregiving triggers this post.  It's an old article, but I just read it today. .  Evidently a frequent question is: "Is there life after caregiving, and if so, what is it like?"  Kind of like the question "Is there life after losing a spouse, and if so, what is it like?" 

End-of-life caregiving can be 12 days, 12 weeks, 12 months or 12 years.  It will leave its mark.   There a website for former caregivers.  I'm going to explore it .  

If you were fortunate enough to have warning of your mate's death, and engaged in end-of-life care giving, what sort of mark did it leave on you?  I've participated in two end-of-life care giving periods.  They couldn't have been more different.  What was end-of-life caregiving like for you?  I'd love to hear your answer.  Below is my answer, a revised version of my comment to the article.

"My two end-of life care giving periods transformed me. The first period was for my mother, who had her problems.  Never warm and fuzzy, she grew nastier as her Alzheimer’s progressed.  She viciously turned on her caregivers like a cornered animal.  My tri-weekly visits were difficult to absorb and recover from.  Her death released me from pain and obligation.  Once finished, my husband and I bounced back with a well earned vacation.

The second period, for my husband, began two years later with his diagnosis of advanced stage Multiple Myeloma. I was told by his health team early on, that his needs must be my priority 24/7/365, if he was to survive at all. The burden and the opportunity of end-of-life care were mine.  We could have hired live-in help, but I feared my own end-of-life welfare would be jeopardized if we spent too much money. So we 'only' hired outdoor help, cleaning services and counseling. 

His 'good' death three years later left me with both extreme fatigue and profound self respect for his and my success against all odds.   Maybe my new confidence helped me deal with care giver exhaustion, because I didn't pressure myself to recover too quickly.  Maybe it helped me attack that anchorless feeling of grief we all know. I don't know.  I began a period of soul searching.  I created a blog of musings to sort my life out and choose my next step.

After many many many steps of recovery, I'm opening my heart again and maintaining an inner zone of safety and comfort.  Well, on good days I choose this.  End-of-life care giving was transformative in a good way ultimately.   From the compassion I gained caring for my husband in his most vulnerable condition, came a new depth of concern and appreciation for a motherless and partnerless woman - me .  I am indeed lucky."

Care giving doesn't stop.  It only transfers its target.


  1. Interesting website you found, I need to check it out in more depth.

    I blogged nine years of my 17 years of caregiving experiences. (Five with my dad and 12 with my husband). I honestly don't know what else to say about it other than it did transform and define me. Now, I am working on redefining myself and it's not easy. Caregiving definitely imprints you.

  2. Goodness! That's a long, long time. Your Dad and your husband were fortunate men. I wish I'd carried on conversations with you back then, when we were both caregivers. Though my end of the conversation might have been a primal scream.

    I value the way we validate each other's 'coming out'. Always more to be revealed...

  3. For me the difference between those years and now is back then I never had a minute to myself. I was always too busy. Now it's just the opposite. I have too much time to myself. The contrast is ridiculous!

  4. AMEN! It's the new 'normal'. But it reasons... In this stage of life I'm unapologetically picky about who I spend time with.

    Add in the fact that my interests can be indulged without the comfort of a friend or a bodyguard, and you come up with A LOT of time.