Sunday, August 20, 2006

Caregiving: ... family first

     Most people are only familiar with illness or incapacity in an acute situation. If you get sick then you get better. If you sprain an ankle, you may hobble on a crutch for a brief period, then you walk freely again.

     Another common bond most share is that a catastrophic medical condition ends in death.

     “Living” with a chronic illness is an entirely different universe. There is NO Hallmark “Get Well Soon” phase and there is no end in sight. Yet as long as there is life there is hope and you learn to “live”!

     I never gave all this much public thought in the beginning. Then this journal soon began to take on a life of its own. Within a year it was highlighted in Australian carer publications,, and even referenced it in an article on Medicaid planning. Questions in emails began to light up my mail box from readers of those articles.

      I share OUR story, which is all I really can share. I also share our lives because families facing the challenge of one member living with a chronic illness or disability are still families first.

     Children are raised, bills are paid, groceries bought, meals cooked and lawns are mowed. People still worry, laugh and cry. It isn’t that we do less; probably we do more than able bodied families because we have to.

     Family activities are as much a part of caring as the nuts and bolts of a wheelchair. You MUST create the time and the means for them.


  1. You have always been an inspiration to many. I am honored to have you as a member of the Healing Garden and a friend. Tammy

  2. It took my brother 3 years before he died of a horrible disease to hit one in a million...Encephalitis due to brain syndrome.....yet we prayed the whole time that a miracle would happen. I pray you get a miracle . B. Lynne

  3. so true family first:)


  4. It was once said to me by a Specialist Nurse 'don't let the illness dictate your life' and I think you've summed that up very well.  It's hard to do sometimes, but in your journal you show it can be done, and this is probably why it's featured in these places, you've done great, the whole family has. Rache  

  5. very well said, Patrick


  6. Patrick,
    You are so right about the family thing. So much more is involved in the daily life it is easy to forget or look over the fun family activities!  And they are so important!

  7. thanks for sharing your story!!!!!!!

  8. And I admired YOU and Patti, Sir Patrick.



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