Sunday, May 29, 2005

define and guard your own Thermopylae or Alamo

Something unique will sustain each caregiver. I must stress this because I‘ve found no formula for success through nearly two decades.


I couldn’t help but notice and feel honored by the kind comments to the previous post. However I must express caution to any reader.


“Love” I do not believe is enough. Maybe I just avoid the word as a manly-man but I think emotions are too unstable for a foundation. I can hear Tina Turner’s scorching lyrics, “What’s love got to do with it …


I always caution looking at the picture from how you feel about the person in need. Progression will change that person, especially in cerebral functions. Caregiving will change the dynamics of the relationship.


Caregiving can be more often like trench warfare. It is often too difficult to even see a higher purpose or meaning.


It’s only natural to wonder if some one can make it or be depended on. I believe the answer is more in the character of the person.


Not everyone is capable of a Stoic indifference to his or her own existence.


In a sense, you define and guard your own Thermopylae or Alamo, a stand that cannot be won. Except unlike heroic moments in time, caregiving is just trying to get through the day, day after day, knowing that the future holds only progression. 


Even more difficult is eventually knowing your limitations. The safety and well being of the person in need can be muddled by caregiver pride and or hobgoblins of 24/7 care. Help must be a door left open not closed.


Every story will write itself differently. Our story was focused on raising a daughter and trying to keep a family together. MS made Patti a dependent in that story 15 and a half years ago and progressively ravaged her abilities physically and mentally.


For example that focus must shift with our daughter finishing junior year in high school, Patti is lost in all the college search and application mumbo jumbo. The caregiver hat needs to shift to parenting.


Every caregiving situation is unique.  ...  I applaud every caregiver who tries!



     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              



  1. I think there is a lot to be said of character.  My mother recently widowed went every day for almost three and a half years to visit my step-dad.  She could not see to drive so she hired someone to take her.  She missed 2 days in that 3 1/2 year period.  Those were icy snow days.  She gave up her own interests, her own desires, her own health even to make that trip every day.  Before the nursing home she took care of him herself, finally the doctor said no more, you must have 24 hour help or the nursing home.  It was a difficult choice.  

    There was love, character, loyality to vows, determination, 42 years of togetherness, I never saw a great show of affection.  But about a week before he passed he told the nursing aide to go get Louise, ( she was helping in the dining room) tell her I want to give her a kiss.   She kissed him  everyday when she arrived and left, but this was special, a moment to remember on the dark days.

    Caregiving is more than love, it is more than passion, it is more than affection, it is a deep sense of loyality and caring beyond the normal sense.  And you either have it or you don't.  The patient will know.

  2. I think the thing that scares me the most is that I WAS a caregiver for three years and know what it is like.  My fiancee died of pancreatic cancer 7 1/2 years ago and I kept him at home like he begged me to do.  Gosh it was hell.  In ways too horrible to even talk about.

    I really admire you, not just because I have MS but because I too walked a road of caregiving.  My road was as long as your's and that is what I most admire about you.  I know it isn't about love....but yet isn't it true that love is the one thing that keeps you sane thru it all?

    I like the trench warfare concept and fully agree.

  3. The progression of illness, the denial of handicap, the insistance of independence ring so true.  I just lost my husband who was ill for 20 years and refused to let it slow him down. I accidently ran across your journal while searching for places to advertise a large van with a wheelchair lift. My husband would only resort to the chair if absolutely necessary to fullfill his motto of "I can hurt just as well there as I can here, woman, go get in the van and let's go."


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