Sunday, March 25, 2012

when caregivers get sick – do you glow?

"Families may be one accident, injury, or diagnosis away from bankruptcy." U.S. Senator Sheldon Whitehouse (D-RI)
As EOB (explanation of benefits) statements began to appear from ever more sophisticated and expensive tests I realized cancer was going to be expensive even with medical insurance. Our family resources had already been swamped living with a quarter century of one major diagnosis, Multiple Sclerosis. Can any family survive two?

Blinded by MS tunnel vision I had never noticed how many stories in newspapers recounted the collateral damage of cancer such as a family hosting a fundraiser at a local church to try and raise $6,000 just to pay their yearly medical insurance deductibles for their son’s cancer treatment.

Why was I keeping it all to myself? - Almost 15 years ago my Dad died of Pancreatic Cancer.  He chose to keep it hidden as long as possible, dying less than a month after friends and family were told. Like father like son I originally chose to keep it secret.

Keep in mind I physically felt great. Caregiving was a comfortable masquerade focused on Patti. Glancing back at this blog from that time, I was writing about outings with Patti and even - exercise, fitness, caregiving for Multiple Sclerosis.

More importantly - what about Patti in the now, today?

Megan, our daughter, brought Patti home from her care facility for dinner earlier this week. She had not seen me since our outing the previous week before surgery. Though Patti’s parents had visited and ‘broke the news’ the night before, Patti remembered nothing. In response to Megan telling her while driving she only asked "he's not dead?" and when I personally recapped the story again later, she focused on x-rays and radioactive scans, asking only "do you glow?" J

When questioned about me the next day, after two days of memory reinforcement, she responded "I think he had lung surgery".

I remember sharing Patti’s diagnosis of Multiple Sclerosis, almost 27 years ago, surrounding her like a sentinel. Decades of MS has robbed Patti of physical and mental abilities. Long term caregivers will have no caregivers. That's just the way it is.
(to be continued … since its inception Caregivingly Yours entries have courteously not exceeded 350 words)
continued ...
when caregivers get sick – man plans, God laughs Mar 26

from caregiving to survivorship Mar 28

when caregivers get sick - lung cancer Mar 24

Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. Not that I know anything, because I don't, but I think in a situation like yours, Patrick, I think it is good that you chose to say something about your diagnosis and subsequent surgery etc rather than not share it as your father chose to do until nearly the end. I think, again my not so humble opinion, that you would need support of family and friends, albeit even if it may "just" be online friends that your unique situation would prevent from getting from a spouse. I'm sure you probably don't have it, but I'm sure a community of people to help do things for you while you are recuperating and regrouping would be so beneficial. It just saddens me with your last statement, it just doesn't seem right yet I know of no way to make it right.

    I applaud you in your diligence to caretake for Patti but please also be kind to yourself and take care of yourself the best you can with what you have to work with.


  2. Thanks Betty however due to the blessed hands of a not only gifted surgeon but a patient oriented surgeon I walked out of the hospital amazingly 'able' both for the future and in the present. Our daughter has filled in the necessary gaps such as errands, heavy lifting, even picking Patti up for outings, etc during recovery with a wisdom and compassion beyond her years. I am blessed and grateful.

  3. I do not like the UK and do not live there but one thing I know they have right is free healthcare at time of need and payment through taxation- it was brought in because there was a million workers trained in arms discharged from the 1939-45 war and not willing to go back into grinding poverty like the 1930s - it is not "socialist" as some people say but it was a big concession to the workers and has taken a big fear from peoples lives.

    1. No question that affordability of health care too often dictates people's health options in the US.

  4. Patrick - I'm glad your surgeon has done so well for you. I'm sad that you don't have someone like you to be there and surround you in care now. But still, the 350 word limit is really getting to me!

    1. Cranky how many time have you like myself and I suspect most caregiver wished we could clone ourselves. :)


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