Monday, April 3, 2017

Jane: The Diagnosis

“The results of your PET scan are consistent with early stage Alzheimer’s disease,” says Dr. P, soothingly and solemnly.

“Thank god,” I say to myself. “I’m not going crazy. There is something wrong with Sky.”

I place my hand on Sky’s arm, and watch his deer-in-the-headlights look blossom. 

These words might be soothing to me, but they sure as hell aren’t soothing to Sky. He claims he remembers little from that day, but with significant short term memory loss, what can you expect? Can’t say as I remember that much either, some questions and answers between Sky and the doctor. “No, we can’t predict anything.” “Probably you have six to eight good years, maybe more, maybe less.” Not really answers, then, mostly statements that could be said to anyone.  Some discussion of medications, pros and cons, and whether it’s worth trying one.  Then we leave.

We leave to go home after holding hands on the way to the car, in the car before Sky starts driving, and most of the way home. Luckily, it’s not far. Sky makes three phone calls — to his oldest friend, to his sister, and then to his daughter. He will tell his son later that day when his son gets home from work. I try and give him privacy for those phone calls. I stay in the house, alternately crying and rejoicing.

You may think it’s cruel that I’m rejoicing. I’m happy — thrilled, even — that after several years of knowing something was not right, I now know what the problem is. For me, knowing gives me the opportunity to do something about the problem. Not knowing leaves me constantly wondering, fussing, trying this, suggesting that, only to leave both Sky and I confused and no closer to an answer.

Not that there is really anything for me to “do” now. This isn’t a treatable disease like cancer or heart disease where one can research treatments, make changes to lifestyle, look for a second opinion or the best research hospital. There is nothing to be done here. I don’t even need to educate myself about the disease as I spent several years working in a memory care unit in a nursing home. I know about Alzheimer’s and other forms of dementia. I know the kind of care that is necessary as someone reaches the stage of needing institutional or full time help.

So, for right now, all there is for me to "do" is to learn patience. It won’t be easy.


  1. My two brave friends. So proud of you both. Sending love and courage.

  2. Jane, where do I find the words. You are right, it won't be easy. But deep in the woods there will be some pearls. At least so it was with my mother. I learned a lot in caring for her. When I thought I alone was giving, she was still giving, too. One day at a time. One day at a time, and remember to breathe.

    Much love,

  3. Much love to you both. It will be a long journey. I am so pleased that you are helps myself and all your friends and family feel like in some small way we can take it with you. And if at any time you need help just ask.

  4. I totally get it. Being a nurse is such a double edged sword - you know about, and/or have seen, the worst of just about every diagnosis. When it's a loved one all you (okay, I, maybe you're different) can think of is that ONE patient that really stood out, for whatever reason, but usually not in a good way, and you think - oh my god, will that happen to ____? And then, because you're a nurse, everyone expects you to already know everything there is to know about the diagnosis. The thing is, there really is new stuff happening every day. Fortunately, as a nurse, we're better able to look it up, interpret it and make sense of it.
    Sending love and support to you and the whole family. And don't forget, when caring for Sky, to take time out to care for you. <3

  5. So Jane, I have said it before, and will say again. Please call on me to be whatever support I can be.... I guess you know what kind of support I can give.

  6. I love you, Sky and Jane. Sending hugs and light.