Wednesday, July 02, 2008

caregiving: "people have real issues with the logistics of life"

Parent caregivers of special needs or chronically ill children, I have long held at the pinnacle of caregiving. 


In this morning’s Boston Globe is a story of parent caregiving unraveled. Our US media is only going to report the ‘dramatic’. Who knows how many families succeed daily, but we are not going to read about them.


Yet out of the text of this tragic story leapt Dr. Robert Sege, medical director of the child protection team at Boston Medical Center.


Yes, I would stereotype a Yale University graduate with both a PhD from MIT and a MD from Harvard Medical School as an academic blueblood. Yet, Robert Sege not only “gets it” but “teaches it”.


"people have real issues with the logistics of life - with transportation, with child care. Life doesn't stop just because you have a chronically ill kid."


Caring for an ill child is no easy job, he said.


"Families with healthy kids and working parents are stressed out as a baseline, and add to that going to multiple doctors' appointments, keeping track, being on time, making a child take a medication they may not want, and sometimes with chemo, the child is uncomfortable. All the chronic diseases of childhood are really difficult for families."


Is anyone listening? Families, friends, neighbors what can you do? In this story fingers get pointed and legal claims may one day assign ‘responsibility’.


Divorced parents battling, a child fights for his life


From a caregiver’s perspective perhaps the finger should point at all those who never lifted a helping hand.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")


  1. Patrick,
    I always take these situations with a grain of salt. Who knows what the real story is? I'm sure my ex- has a few horror stories about me as well. I also had his parental rights removed from him... because he did not show up to fight for them. He did not pay child support after taking me to court in order for him to 'support his child'.......... and only got him 3 times after winning.

    I'm sure there are more than a few details missing from this story.


  2. I'm tending to agree with what Jackie mentioned in her comment; I think there were issues in play here not only involving the child's sickness but relational issues with the divorced parents. I think unfortunately the poor kid was just a pawn between his parents and their dysfunctional behavior. He is truly the innocent victim here; perhaps mom didn't continue treatment out of spite against ex-husband; who knows the whole story here?

    regardless of this story, though, I know caregiving to kids is hard work; emotionally draining and time consuming with all the other demands of life; those that can help should make themselves available to help (present company - me - included); need to look into that to see if there is a volunteer respite agency here to give parents a helping hand

    thanks for posting this Patrick; I know its hard to deal with care giving every single day

    in any event, I hope you and Patti are enjoying some summer outings and have some good plans for the Fourth :)


  3. (((((((((((((((((HUGSTOYOU))))))))))))))))))))))How can I help a Caregiver?I have helped my friend who passed sevral years back,He was in a wheel chair an bound in His room all day long.I wouldgo over  there and help Him,not as muh as I would love to.

  4. respite for a caregiver is important by all means........but knowing what to do for an ill child is another sooooooooooo sometimes vacumm the floors, doing the dishes, bringing over a simple meal for the family, or reading to the child while the mom puts her feet up ( but is still nearby), folding laundry, picks up the groceries, take the car in for servicing, so many things I needed help with...........anyone can help a caregiver that just don't have to be a caregiver to give respite.

  5. wow what a pandoras box that story has. taking care of a sick child is hard but that dad something doesn't seem right. any way hope you and patty have a wonderful 4th



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