The Journey Moves on ….

Almost three weeks ago Bo left us,  and since then I’ve been thinking about this blog and  whether to continue it.  I’ve decided to  — for a while, at least — because there are things left to say.  Thoughts to share.

I’ve made this decision for several reasons.  First,  the kind words of some of my readers who have told me that they, too, are caregivers and I have helped them in some way;  and second, others who aren’t caregivers but who have told me that  they learned about Alzheimer’s from our story.

It’s such a cruel disease.  We know the outcome, but the journey there is unpredictable and  exhausting, and even though the Alzheimer’s Association  and websites like Mayo Clinic describe the “stages” of the disease,  we still don’t really know what to expect.  Each person’s regression is different.  The average duration is sometimes listed as eight years, yet each person varies.  There are those who decline rapidly, but others, like Bo, whose decline was gradual and slow for at least nine years.  What we don’t know is how long the patient has the disease before it becomes evident.

I used to go back to the “stages” chart to see where I thought Bo was.  I know there were  times when I was in denial.  Maybe what happened was just a fluke.  Maybe he’d be OK tomorrow.  You see,  the really odd thing about the disease is that it’s not consistent.  He would do one thing that was a sign of the disease yet say and do others that were perfectly normal.  Such a reasonable and sensible man: how could he possibly intentionally pour a glass of water over my computer keyboard? or try to drink the water from the flowers on the kitchen table?

In truth, he slept most of those nine years.  There was nothing else to do — hobbies, interests, household tasks, reading, television all gradually disappeared until only boredom  remained.  This ennui was deadening.  The purposeless life.

But there are stories left to tell,  so I will move forward with from time to time with a new post.  Thank you, all, for your sympathy and support.


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12 Responses to The Journey Moves on ….

  1. Mary Smith says:

    I’m so pleased you are going to continue to post on your blog. My reasons are entirely selfish. I value your thoughts and writing but more than that I don’t want to lose contact with you.

  2. Annamarie says:

    I’m happy to hear you’re going to continue. You’re such a talented writer and help others more than you realize. And, those of us that are close friends feel better knowing how you’re doing. We hope to hear you’re out there living every moment to the fullest! Lots of love, Annamarie

  3. MCI Alice says:

    Am glad you are continuing. Your voice and perspective are so valuable to those of use caring for our spouses on this journey

  4. MCI Alice says:

    Plus I would miss you!

  5. Arleen Stolzenberger says:

    I’m glad you will continue with your writings. It can help others and also help you in your grief

  6. Scarlett79 says:

    Blessings to you and I am so glad you are going to stay around…<3

  7. Pamela says:

    Thinking of you in this new stage of your journey and looking forward to catching up in person next week. 💗

  8. Thank you for continuing to blog for awhile. Of all the Alz blogs I read, yours is the one I relate to most. You have helped me to plan for my loved one’s decline, and have shown me a unique way of keeping your husband at home with you for the duration. I too intend to keep my husband home, and will consider having someone live with us if possible. I know we won’t find a family like Jon’s, but I have hope of finding appropriate help when the time comes. There are so many commonalities in this journey despite each person’s journey being different. Thank you again. Sara

  9. booklovermoorestown says:

    I too am happy you are continuing to write as I so enjoy reading your blog. You are an amazing writer. I wish you the best.

  10. Mary Ann says:

    Please stay with us
    Your insights are quite valuable
    The way you described the boredom of existence
    Helps me as I tolerate each day
    Probably now as you look back your insights
    Will be very interesting to those of us still doing this

  11. Boo’s suffering had come to na end. Your help and loving care was so important, May God bless you and give you strenght to carry on.

  12. Maddie says:

    Oh Nancy, I’ve not been here for a while, I’m sorry to hear of Bo’s passing. Hugs to you.
    I too though must add my voice to those who are glad you are staying.

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