Why Write?

A friend took me to task for writing a blog about my husband.  She felt it invades his privacy.  Instead, she suggested that I write about myself. I spent a lot of time reflecting on this…questioning what I’m doing,  asking myself if I am, in fact,  invading the privacy of a very private person.  Should I stop writing?

But he will not know about this blog.  When I started writing,  I did it to inform family and friends because when they called,  I couldn’t discuss his condition in front of him.  “We’re just sitting here together on the sofa,”  I’d say knowingly, and they would understand that I couldn’t talk.

Here, I can tell stories that show what is happening in our lives.

But I have concluded that this blog also achieves a different purpose.  It not only informs our friends and families, making it so much easier to answer the question, “How is he?” but it also helps us understand the progression of the disease, how it gradually robs him of judgment, memory and life.

And at the same time, I feel that if I can help just one person who is going through this awful hell,  I have done something good.  Having a loved one with Alzheimer’s is an incredibly lonely life.  I’ve been very gratified over the six years to hear from a number of strangers that they find my blog comforting.  This has made it worth writing.

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19 Responses to Why Write?

  1. Christine Fuller says:

    I have so appreciated your candid writing. When my mother-in-law was dying, I apologized for what sounded to me like complaining. A friend exclaimed that not only did I think I should do everything I could think of for her but I also should enjoy it. Your willingness to share so many facets of the journey has been helpful, even to us who have not experienced this specific disease. We never know when it will strike us ourselves or a loved one. I admire you and I thank you. I have missed your posts in the past month.

  2. dianne says:

    I responded on FB….write on….think of you and pray for you and BO everyday…..

  3. Katrina says:

    I believe you taught your students the many purposes of writing, but most importantly the introspection and therapy writing can provide. You are a wonderful writer who expresses herself as seamlessly as you speak. Please continue…for yourself, your husband who cannot write and all the rest who are touched by it.

  4. Ruth Geddes says:

    Hello,
    By telling only of your own experiences, etc. it would lack total dimension. As Alzheimer’s wives, our lives and stories are inextricably connected with those for whom we are caregivers. Please continue to share your thoughts, feelings and experiences with us as you have done so to date.
    I, for one, really appreciate your honesty and openness in telling of your journey.

  5. Pauline Koch says:

    I agree with all of the previous comments and feel that your blog has been of great value to share your experiences with others who are or will experience this or a similar experience at some point in their lives. I also think that expressing your feelings also helps you to cope with this horrendous disease – so important for a caregiver and spouse! I have so enjoyed the self reflection throughout expressed so beautifully! Please keep the blog going. You are amazing, Nancy!

  6. Maureen says:

    No one knows what you ‘re going through unless they walk a mile in your shoes. Thanks for sharing.

  7. Colleen McLean says:

    You have helped one person. After finding and reading your blog, I began writing a daily journal on my iPad as I rested when Harry was asleep or could not sleep at night. The time from Harry’s official diagnosis to his death was only 8 months. My journal records for me to recall that we did enjoy living and being together even if in patches. Writing it helped.

  8. Cheryl Simone says:

    Nancy,
    Never stop writing! It is what you enjoy, it is who you are, and it has taught all of us how to treat our loved ones with dignity and compassion. You neither denigrate nor demean Bo with your beautiful writing, but rather you honor him for the man he was and chronicle his current journey in life.
    Keep on writing.

  9. Rose says:

    Writing is therapy. You need to keep yourself in a good place to help keep Bo in a good place. Keep writing! It is accomplishing more then you may know.

  10. Nick says:

    I am one of them! This blog is very important to me. It’s out of anyone’s control whether we develop disabilities, but this blog for me is really about the love you have for Bo and how much you care about his needs and his experience. It encourages me extremely to read about such a solid heart in you, Nancy. Thank you for writing.

  11. Arleen Stolzenberger says:

    Keep writing! Your sharing is not only helpful to you but to others as well. I’m sure Bo would support what you are doing with this blog. It is not only a sotry of a diffiuclt journey but it is also a true love story.

  12. Pat says:

    Nancy, how can you separate you and Bo? You can’t. At this point your feelings are intricately entwined with Bo and his condition. Keep writing and sharing; and know that you are not only helping people,but that you are an inspiration to anyone dealing with a difficult situation. Love you. Pat

  13. thom sweeney says:

    Nancy, It has meant so much to me to have you share your experiences with those of us who live in parallel universes. It really helps knowing what OTHER people, such as you, are going through, and how you are handling it. It makes me feel much less isolated to know that “If Nancy can do it, then I can do it.” Keep up the good work, kiddo. (And it IS good work!!)

  14. Lori says:

    I must whole-heartedly agree with the previous comments. Please continue to express your thoughts because you can never know just how many people you touch. Caregiving is such a difficult subject and so emotionally wrenching for many people. It helps greatly to know that others also share in the anguish, joy and struggle and that we we not alone. Bless you for being a loving, caring supporting spouse for your beloved husband. Thank you for always sharing.

  15. Ruth says:

    Nancy, personally, I feel your writing is not only helping those who are caregivers, but enlightening all who read with actual specifics of this disease. Maybe it will ultimately be a tool in advancing research on ways to prevent or control it. I agree with all the above statements. Please continue writing freely without guilt because I’m sure Bo would want you to make this your mission. Clarify and expound on the problems and progressions. Humanity needs to figure out how to erase this disease. You are not denigrating or belittling in any way, so there is no trespassing on dignity.

  16. Patty says:

    Your writing is a wonderful tribute to your husband and a beautiful reflection of your love for him.

  17. hazkempton says:

    Thanks for sharing, we all need an outlet and way to express ourselves x

  18. Paula Kaye says:

    I am glad that today I found your blog. You should not be at all concerned that you are sharing your husband’s struggles. It is meant to be. I am caring for my husband with end-stage Parkinson’s and he also has Lewy Body dementia. Not a dementia at all like Alzheimer’s but it is hard on us never the less. I write about my journey for me. And for those who want to read and share the journey with me. I am adding you to my Feedly. God Bless You

    http://smidgensbitsandsnippets.blogspot.com/

  19. I would imagine it also helps you to be able to discuss it elsewhere. Sending hugs x

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