Our Last Day with Lewy

As it turned out, Day 120 was not the worst day – Day 121 was.  And it was the last day of mom’s battle with LBD.

Mom passed away around 5:30 pm on 23 Feb 2012 – very quickly, very quietly, and with little pain or suffering on her part, beyond the suffering the disease was already causing her.

I was with her at the end – touching her, talking to her.  She just stopped breathing.  I suspect that mom, always extremely sensitive to drugs and drug withdrawal, had a reaction to the Sinemet that no one, including the doctor, could predict or recognize, based on his PAs response to her reaction to the drug.  It is hard to see it as a blessing, but at this point, it probably was a blessing considering the way most people with LBD end their life – slowly and agonizingly.  Still, it was far too soon, but I am glad I was with her and she wasn’t alone or with strangers.

If there is one thing I have learned from mom’s illness and death and from my husband’s illness and death, we are our own best physicians and we should use doctors as advisors in our own health journey, not as dictators or godlike creatures.  Doctors have a tendency to see patients on a bell curve – simply because the health insurance system they have to live within demands the shortest possible time with each patient and it is more expedient for them to place patients right in the center of the bell curve rather than on either end or completely off of it.  Mom never was in the middle of a bell curve and neither was my husband.  Both went undiagnosed and misdiagnosed for far too long.

Make doctors stop and listen to you.  Too many times I have had doctors refuse information that I had gathered about mom and my husband because they just didn’t have time to process it.  Get angry if you have to.  Doctors don’t expect patients to stand up and take charge of their own health.  They don’t expect patient advocates to say “no” to treatment.  They tend to sputter and get angry if questioned.  Not all of them, but most of them.

Take what they tell you as ADVICE not as absolute truth.  Take charge of your own health or your loved one’s health if necessary.

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition.”  – Steve Jobs

Category: LBD Journal  Tags: ,
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