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heading into a Sunday night <strong>with</strong>out sleep. <strong>My</strong> mom said the best thing was for me to rest<br />
and return in the morning. I went <strong>with</strong> her request and decided to try to sleep and drive in<br />
very early on Monday morning. <strong>My</strong> thinking was that the best thing I could do was arrive<br />
ready to relieve my mom so she could sleep. If I drove home right away, my mom and I<br />
would both be going into Monday <strong>with</strong> no sleep, and if things continued to worsen, we<br />
might both start to have our function impaired by lack of sleep some time in Tuesday's<br />
early morning hours.<br />
It was the worst feeling I've ever had going to sleep. I was going to sleep knowing that my<br />
dad might pass away before morning. I had two dreams that I can recall that night. In one<br />
of them, my dad called to say hi and I stopped him after a few sentences and said "dad,<br />
you're ok!". In the other dream, it was morning and my dad had stabilized. I woke up well<br />
before the alarm and was gripped by a need to know how my dad was. The phone hadn't<br />
gone off during the night, so my worst fears hadn't been realized. I hoped that my dad<br />
had stabilized enough that my mom was able to sleep for a few hours. I didn't want to<br />
wake her, so I painfully waited for an hour before calling her.<br />
I know that the portion of the story I just told is entirely unlike the other blog entries -- it is<br />
told from my perspective, and focuses on the experience of trying to react when a loved<br />
one is hurting. It is one thing to say that you should expect to make hard choices, have<br />
ambiguous feelings about the choices you make, and force yourself to do what you think,<br />
on balance, is best for the well being of your loved ones even if it is hard for you. It is<br />
quite another to live the experience. I laid out my decisions, the reasons for them and the<br />
ambiguity because even if I got it wrong or others would have done it differently, I think it<br />
is important for people caring for people in my dad's situation know that they aren't alone<br />
in making decisions that reflect their best guess, based on limited facts, about the right<br />
thing to do. Had the worst come to pass while I slept, I would surely have felt guilt that I<br />
made the wrong decision. I was lucky, or (I hope) rationally reached the right decision in<br />
that I arrived sad but rested and I was able to provide the love and support that my<br />
parents both needed after a truly awful night. Caregivers, you are not alone in repeatedly<br />
rethinking the decision you made that you thought 60% likely to be the right one. Be<br />
guided by your love for others rather than your own needs and at least you can tell<br />
yourself "I honored the wishes of my loved ones, and took the path I thought was most<br />
likely to do right by them."<br />
I jumped a bit ahead in my effort to keep contiguous the portion of the post about the<br />
decision to return sufficiently rested to help rather than return 8 hours earlier. So I'll<br />
rewind to Sunday evening. I had held it together really well, talking my mom through<br />
some of decisions she faced, trying to figure out the right thing to do, even packing up so<br />
I could leave <strong>with</strong>out delay in the morning. Dana had been offering to hug me for hours<br />
but I just needed to talk <strong>with</strong> her, and we talked until I'm sure she was well past the point<br />
of exhaustion -- but she is an angel and never let on. I was talking to Dana when midsentence<br />
I said "I need that hug now", she held me in her arms, and I cried. I wish I was<br />
better at crying when I need to, because it really helped. Dana made it safe to cry and I<br />
did. I realize now how strange it was that my ex-wife was holding my daughter and crying<br />
together about my dad probably at the same time as my current wife was holding me and<br />
crying together about my dad. Strange, but in a positive way.<br />
While I was driving home, I talked a couple of times <strong>with</strong> my mom. She told me of the<br />
harrowing night they had. Essentially, she was up <strong>with</strong> my dad all night. They finally got<br />
him settled in the ICU and transfused him <strong>with</strong> 2 units of whole blood, at which point he<br />
improved a bit (the platelets they gave him earlier in the process may have helped, but if<br />
<strong>My</strong> <strong>Battle</strong> <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> <strong>Cancer</strong>
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