Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Monday, January 24, 2011

"Extreme Caregiving" . . . defining the undefinable or not

       Various bloggers, as well as yours truly, have recently bandied about the words "extreme caregiving"   (a word which my precious spell checker refuses to acknowledge).  We use the term to differentiate ourselves  as parents of severely disabled kids from those who provide care for typical kids or typical elderly parents, whatever typical connotes.  The words are difficult to define and perhaps more difficult for others to comprehend.
       Certainly, "extreme caregiving" cannot be defined how many hours are committed daily, nor by how many years are committed over a life time.  Could it be defined by the severity of need of the recipient or by the numerous medical complications.  Perhaps, the level of assistance provided, the amount and nature of resources required or the depth of abandonment by family and friends?  Or could the ability to take a break, a vacation, go on a shopping spree or sleep a full night without disruption be factors that could be calculated in determining "extreme caregiving".  Could it be defined by the depth of love, by the support or by the absence of a spouse or by some religious overtone which places our care for our severely disabled in the realm of the extreme.  None of these or all of these?
       Once again, I find myself with many questions and an inability to answer,  The closest that I could come to a possible definition is:
        "A master in the art of living draws no sharp distinction between his work and his play; his labor and his leisure; his education and his recreation.  He hardly knows which is which.  He simply pursues his vision of excellence through whatever he is doing, and leaves to others to determine whether he is working or playing.  To himself, he always appears to be doing both."  Francois Rene Auguste Chateaubriand (1768-1848)
       Extreme need gives us (male/female ... excusing the 18th century paradigm) the opportunity to unite our play and our work into a definition of extreme caregiving.  Maybe the words should be left undefined, but then how would the world understand?


  1. Dear Phil, I Love all of your posts, I can't remember the website but Blogbook rings a bell, I think makes a book out of your posts with photos...
    I saw your post 3/4 way through our manual ABR and well I have been mulling over your post as I'd come to one conclusion to then self argue with myself to another. I waited for the Luxury of typing on my keyboard rather that tapping away on my phone.
    Well the spell checker was written by a person who didn't have a physically challenged person in their lives.
    I think it was all of those, I think "extreme caregiving" is anything that one does for someone else not because the recipient chooses it, but without the "help" they or their health and well-being would dramatically diminish.
    As for Chateaubriand, apart from being a very tasty dish (Only joking!)...
    Well this was the one I was arguing with myself over, as I think his definition is sound and I like it,for anyone who has a certain level of passion their life vocation, like an athlete or someone like Gandhi or Mother Theresa or a doctor who goes and helps a remote village for little/no pay. They eat, sleep and breathe their vocation and dedicate their entire life to it. But then that is a choice (unless you are the Williams sisters - Tennis).
    Is being an Extreme caregiver a choice? I read one ladies blog who adopted children with special needs and I've also met an ABR family who did the same which is admirable, amazing and fantastic, but then they have chosen that path and it is very altruistic thing to do, so don't think I don't think it is amazing and super as it is... I take my hat off to them.
    But then what about people who as you've put beautifully in one of your previous posts, an "accident" happen to a member of their family, that isn't a life choice but, it is a consequence of living.
    So I think that Extreme caregiving has it's levels, all the people under the umbrella wouldn't survive without someone elses assistance throughout the day, but it's the level of assistance that the caregiver has to provide which gives the ends of the spectrum to me.
    It came up today, someone asked if I could switch volunteering shifts as for one of our kids activities the parents are volunteering at a casino day/night thing to raise funds for the kids club they belong to. They wanted me to switch the middle of the night for the day... and well I didn't mind, but I couldn't... Oatie can go to school for 2.5 hours as it's a short burst and I'm usually within 5 minutes walk away, and they are trained in pre-school children and multiple adults are in the room, for support for Oatie. Could I leave Oatie with "a friend" for the day? One of my very best friends, maybe but a bit too much of a burden to ask. So the only other person who could look after Oatie for the day would be Oatie's Dad. You see with my older two I'd have people chomping off my arms to have my older son or daughter for the day, they would eat what you gave them including sprouts, and when they are out they put on their bestest manners and behaviour ever to the point I'd have to double blink like is that really them? Oatie is just a sweet as his siblings, but the offers to have him for the day, would not be counted on one hand.

    So to be an extreme caregiver, can you leave your Adam or my Oatie with "anyone" anyone being someone you would have trust Aimee with before she was an adult Or I my older two for the day? For Oatie I'd have to say no.


    So even though Oatie would come under the umbrella of extreme caregiving, he is at one end of the spectrum, unless he has croup we can sleep easy, he sleeps like a brick. We can go out for the odd evening, as he'd be ready for bed before we left and he knows his brother and sister are in the rooms next door and he likes the lovely young man next door who sits for us, the young man's sister fits in the extreme caregiving category and his mum is home next-door when he is babysitting. (we do have the wheels, the bullying, the name-calling, the prejudices, the laughter at his condition, trouble communicating, the restriction of vacations, activities, muscle control/lack of it, and Oatie has very little independence... etc but...)where as....

    I think that your family are way above and beyond what Chateaubriand said, you wouldn't be Masters, you would not even be like Jedi Council members, you would be like Yoda or even more so as what would happen to less able people in Chateaubriand's day? You don't pursue Excellence, you and Sharon exude it and take excellence to a new level. What I'm not saying very well is that Chateubriand's definition would be underselling yourselves in his definition of living, not in a egotistic way but, as I see it.

    You see as altruistic as choosing a challenging path is, accepting the one that you end up on and not only to get through it, and deal with it, you are helping others, Sharon by writing her book and you through your blog, which is really really really altruistic, as like you guys, and people like that other lovely dad who follows your blog, you guys are on the other end of the umbrella to Oatie and I may not be the world, but I do understand and one by one, we, together will make people understand.

    So I say Yes to defining the words "extreme caregiver" starting with everyone who reads your blog adding it to all our spell checkers, and let people question it if they choose, as by questioning the words or the definition they might then understand, and one day we'll have it in the Oxford English Dictionary!

    Thank you for another wonderful post.

  3. Mel...thanks for the kind words, but we are really not that advanced. I think that this is something that we work hard to do and we, like you guys, have our share of good days and bad days, days where you feel great and days of sheer frustration.
    I can especially relate to your fear of leaving Oatie alone with anyone for a period of time. We have left Adam in someone's care once or twice overnight, but we probably called a half dozen times. We leave Adam with Maribeth, one of his ABR therapists for part of the day when she is here, but she has also been with us for 11+ years. In other cases where we had a home worker, we would be reluctant to leave Adam for an hour. I just guess that from a mother or father's intuition, other people don't have a clue about reading his signals about what he needs. Warmest regards to the family!

  4. Dear Phil, I disagree, Sharon and yourself are advanced people, the type of people that others aspire to. It not just about how you care for Adam, (where's my good friend Phil to help me hit the nail on the head! Lol!) it's just how you are and your auras.



  5. Phil, great post again! I can not think of a proper definition as well. All I can say is that some people do have a choice to become "Extreme Caregivers" such as adoption. Others in our situation also have a choice, institution or "Extreme Caregiver". We had no choice, being the individuals we are (and all ABR families). We were dealt the card...I believe for a reason. For the most part it could be defined "by the depth of LOVE". If we wish, we become masters of learning on a different level than others. First we need to learn how to handle the shock of the diagnosis, then the acceptance, tons of research to learn on too many topics to mention, PATIENCE, therapies and most importantly BALANCE. Once we learn to find "our" balance we can find peace in "our" world. It is different indeed but so fulfilling.

  6. Solveig (from Norway!)January 30, 2011 at 8:28 PM

    Nice post! You got me thinking..

    (P.S. I also wrote a comment in your post "Near-drowning" Sept.- 2010).

  7. Solveig, thank you for your comments. You are right that both of our sons' conditions are similar and I am sure manifest in similar ways. I send you warm regards from the other side of our very small world.


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