Gary's Gift of the Magi and Our Gift to Him

A Porkchop a Router and Two Pairs of Socks is the blog my dear friend Kirsten writes as she lives the experience of helping her husband, Gary, manage the devastating effects of Lewy Body Dementia (the same disease that caused Robin Williams to end his life). 

Kirsten, a Penn State grad and the Executive Director at the AIDS Resource Center near her home, is working full time while also serving as Gary's main caregiver.  Kirsten is always working to ensure that human rights, healthcare, shelter, and support are available to those in need.  A patron of the arts, a lover of Broadway, and a friend to the afflicted, Kirsten often puts others before herself.  It is my hope that we can take a moment to put Kirsten first as she walks alongside Gary on this very difficult journey. 

Kirsten has been writing about what it's like to live with Gary as he fades into this illness.  She does so with heartbreaking honesty, humor, and resolve.  In one of her entries she shared that as Gary's illness progressed, he spent a lot of their savings that had been earmarked for retirement, bills, and end-of-life expenses. 

From her post "The Gift of the Magi."
"We decided we weren’t going to spend a lot of money on gifts this year but Gary, realizing this would likely be his last opportunity to give me jewelry, bought me a beautiful and far too extravagant necklace.  The thing is…. he bought it with money from his 401k that we were intending to use for his coffin.
So now, I’m sitting here with this beautiful necklace thinking about The Gift of the Magi.  Although I haven’t given him anything, so maybe I should be thinking less about that story and more about something that solves the long-term issue created by his incredible gift to me."

When I asked Kirsten about creating this Go Fund Me to help restore the financial loss, it was something that she didn't necessarily want to do, but thankfully she graciously agreed to try.  The narrative below is from Kirsten's blog titled: "Two Questions and Three Surprises." Please read it so you can gain some perspective around why she and Gary need us. 

"Well, I've had three surprises and only one of them was good.  A few weeks ago, Gary was having chest pain.  Nitroglycerin didn't help.  Per the hospice nurse's instruction, I gave him morphine.  When that didn't work, the nurse contacted the on-call doctor who suggested we go to the ER.

Surprise #1:  It took 4 people almost a full hour to get Gary from the bedroom to the front door.  If he was having a heart attack (surprise #2 - the good one - he wasn't), the results of that delay could have been catastrophic.  I understand he has no use of his legs and limited use of his arms, but it's been so long since he was out of bed at all, I did not realize the extent to which he was totally helpless.  That came as quite a surprise.

Surprise #2: (The good one).  He wasn't having a heart attack.  They believe it was likely muscle strain from the progression of his disease. And they made that determination after we arrived in an ambulance, had a chest x-ray, 3 EKGS, and a ton of bloodwork.  After they determined it wasn't his heart, they send us back home in an ambulance.

Surprise #3:  We have received a letter from Medicare denying payment for the whole trip.  The ambulances.  The doctors.  The x-ray.  The EKGs.  The lab work.  All of it.  Why? You ask.  Well, because they are already paying for him to be on hospice.  And if they buy him a pack of pull-ups every now and again, you certainly can't expect them to pay for cardiac care.  I guess once you're on hospice, you're supposed to die.  And I guess he isn't dying fast enough to suit them."

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