MY JOURNEY

Barry died on November 21, 2016

It has been almost two months since Barry died. During this time, I have found myself very busy trying to avoid the fact that he is gone. First there was a Thanksgiving dinner to host, a quick trip up north, a funeral to plan, a Christmas tree to put up and decorate, kids flying in, speeches to write and many dinners out. Then there was Barry’s memorial service, my youngest son’s birthday, Christmas morning with Swedish pancakes, kids flying out, babysitting and finally a quick trip back up north. And now I am home in an empty apartment with pine needles still
littering the floor and dead plants lingering around from Barry’s service.

I am a master at avoiding thoughts about anything uncomfortable. I could get a PhD in avoidance. One feeling I avoid is sadness. Am I sad about Barry being gone or am I sad for me? Who am I now that I am no longer Barry’s wife? Who am I now that I am not the long- suffering spouse of a very sick man? Do I really want to know the answer to these questions? I had been working on thank you notes and noticed what I wrote on quite a few: “I will miss Barry but I am thrilled he is finally free.” I was surprised and embarrassed that I wrote the word “thrilled” instead of relieved or thankful. For a moment, I wondered why I wrote that, but quickly avoided thinking any more about it. See how that works?

Since Barry died, I have been feeling at loose ends. I was in a panic right after his death, rushing to start planning my new life. To figure out my next move. Where will I go? What will I do? Should I take a trip? Should I move up north? I felt I should figure it all out immediately. I was up north now and decided to postpone writing any more thank you notes and planning my new life in favor of a long snowshoe outing. I chose one of my favorite trails, the same one I was on when I heard Prince had died. That day was sloppy and warm. I really had to concentrate so I wouldn’t slip in the mud and the snow that was still in shady spots along the trail. That whole hike I thought about Prince. Why can I think about Prince’s death but not about my own husband’s death?

But on this snowshoe trek, Barry pushed his way into my thoughts. I started to imagine what he would have thought about this trail, and it made me feel sad and lonely. It was then I realized that I was avoiding thinking about him because the thoughts made me feel sad and lonely. Idon’t want to feel sad, and I really do’t like to feel lonely. But I also concluded that is unfair to Barry to push him out of my mind. He deserves to be remembered. As I hiked and thought about him, it dawned on me that I was no longer remembering him as sick. The skinny, dying Barry overcome with FTD was beginning to fade from my memory. The old handsome Barry was emerging and that felt really good. Why would I avoid thinking about him when my memories are now about him healthy and whole? I also realized on the hike that I could not plan my entire future right now. I had to take a deep breath and slow down. When I finished the trail and returned to the house where I was staying, I wrote a note to myself that said: “Take it slow, remember, reflect and make no rash decisions. And, damn it, get back to work!”

After a few days up north, I decided it was time to visit the Care Center where Barry had lived for so long and give them a donation from Barry’s memorial fund. I had been avoiding the place for two months. As I drove up, I felt sad that Barry had been there for so long. Yet I felt an odd sense of excitement to see everyone. Did I actually miss coming here? Rather than avoiding that thought, I had to admit that I did miss it.

When I walked in, the same people were by the front desk in their wheelchairs. I greeted the same lady who had always asked who I was visiting. But this time she did not ask me. I went to Barry’s floor and was greeted with hugs from the staff. Someone else had moved into his room. I wanted to look in, but the door was closed and that meant the person in there was dying, too. I walked down the hall to see who was still around and discovered that almost everyone was still there.
barrygone
Barry’s nurse, the one full of wisdom, gave me a hug and said, “Go now and live your life. You did all you could. You were a good wife.” Then he added, “Look at your children because Barry lives in them.” I am glad I didn’t avoid going to the Care Center because I needed to hear those wise words. I also needed to admit to myself that the place had been a huge part of my life and it will take time to not feel the loss of visiting there each day.

I will take the nurse’s advice and live my life one day at a time. I will let myself remember Barry. And I will feel happy when I look at my kids and see Barry shining through in them. When I got home I felt that the huge weight of avoidance had lifted. Am I thrilled that Barry is finally free of FTD? Yes! And now that the old Barry is back in my memory, I feel closer to him than ever.

Thank you to everyone for your support during this journey.
Peace for the New Year!

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22 comments on “MY JOURNEY
  1. So good to read your dear, heart-full words! You can do this.

  2. Many people feel guilt and confusion at this stage of things. Two months is hardly enough time for you to realize that he is gone. This year it is ten years (will be in September) since my husband died. I have come a long way and do not really feel guilty. I do still miss Paul. It is very difficult to be the wife of someone so sick. It is a heavy burden. When they die you feel relief that the burden is gone, probably as much or more relief than what you feel because their suffering is over. For me, that is what the guilt came from. But you do not need to feel this. It will pass. Take time to grieve and do not rush to “get over” anything. What is is what is. What will be is what will be. A book called Mindful Grieving is the one which helped me most. Be well, dear Nancy. Do not forget to breath.

    • Mary Beckman Woodward says:

      This is beautiful ! It’s been 10 long years and at this writing Harry and his very damaged mind may outlive me since I’ve had 3 kidney failures in 6 mos. So I want you to ENJOY THE FREEDOM and CELEBRATE YOUR LIFE. One thing my sisters and I have done when someone close dies is donate Tiffany Lamps and music of various faiths and eras . It makes us feel better and it’s been so comforting when someone we know or their relatives have had them in their rooms. Fly free Nancy – enjoy!! Love, Mary

  3. Shannon Smead Samuels says:

    Aw, I love that you are cherishing your memories of the healthy, happy Barry, and that the ill Barry memories are taking a back seat. Isn’t that wonderful? Thank you again for your open and honest sharing of this journey, Nancy. I don’t think you will ever know how many lives you have touched. xo

  4. Lisa Ventura Olson says:

    Please enjoy your new life as much as you enjoyed your old one – before FTD crashed in on your family’s world. Your future trail will have some ups & downs & some surprises around the bend but you will just fine because you have a good heart to guide you! Sending gentle healing hugs & prayers to you Nancy. Love, Lisa
    Now get back to work since we need more of your wonderful books!

  5. Karolyn Lee says:

    I absolutely love your writing. I would love to meet that nurse. He gave such great words of wisdom. I look forward to you getting back to work producing wonderful books! Enjoy your new life…..bless you!

  6. With every post, you touch my heart. Sending love to you, my courageous friend.

  7. Tim Moodie says:

    You write so well and your message is so powerful. This needs to be a book, it could touch the lives of so many who deal with FTD and Alzheimer’s. We are so sorry we couldn’t be at Barry’s Memorial, I’ve heard nothing but good things. We love you Nancy, you are the best role model I know. We have to get together so I can buy you a beer.

  8. Christine bekiares says:

    Thank you for sharing. We will all pass through this time in life. Happily, the happiest memories remain strong. Hug those children and grab those pencils!

  9. Jane Hall says:

    Very touching and loving.

  10. Ellen says:

    It has been a gift to read the story of your experiences– difficult, vulnerable, honest, true. Thank you. I know you’ll get your life figured out. Be good to yourself.

  11. Laurie Anderson says:

    Nanee what a beautiful blog to read. It was as if I could hear you finally exhale. I choked up at what the nurse had to say to you because it is so true. You did do all you could do. You were an excellent,caring, loving and devoted wife. That nurse is very wise. I am so happy that the healthy Barry has emerged and you can now have happy memories of your life together. I think your kids will help keep those memories in the forefront as well now that you have been able to reclaim them. Your posts throughout the last few years have been so inspirational and have put so many things in perspective for me. Thank you for writing posts that touched so many of us so deeply.

  12. Laurie Anderson says:

    Nanee what a beautiful blog to read. It was as if I could hear you finally exhale. I choked up at what the nurse had to say to you because it is so true. You did do all you could do. You were an excellent,caring, loving and devoted wife. That nurse is very wise. I am so happy that the healthy Barry has emerged and you can now have happy memories of your life together. I think your kids will help keep those memories in the forefront as well now that you have been able to reclaim them. Your posts throughout the last few years have been so inspirational and have put so many things in perspective for me. Thank you for writing posts that touched so many of us so deeply.

  13. Ann hustad says:

    Wow a really powerful message today.. it (you) touch my soul! You are not alone complete with amazing children and grandchildren! Hugs!!

  14. Ann hustad says:

    Wow a really powerful message today.. it (you) touch my soul! You are not alone complete with amazing children and grandchildren! Hugs!!

  15. Anne G. Lewis says:

    Dear Nancy,
    I watched my mother slowly die of dementia, but afterward, when I thought of her, I remembered not the tiny, ‘-absent’ person but a hale and hearty woman in her fifties or so. Now I am 72, and I still envision her in her (late) prime. Our minds are wonderful, aren’t they. The best of luck and good wishes as you continue on.
    Anne Gillespie Lewis

  16. Judy Peterson says:

    Thanks Nancy for being so open in sharing your thoughts through all of this. Please continue to post…a new journey is beginning!

  17. Marcia Meier says:

    What a beautiful part of your story. Thank you for sharing it.❤️️

  18. Edie Pierce-Thomas says:

    Thank you for sharing your journey with us Nancy. It is moving and good to hear that people can live through and make it though difficulties in life as you have done. Go live your life!!

  19. claudine coughlin says:

    Dear Nancy, I just finished reading your latest post “Put One Foot In Front”. What a beautiful testament of your last two months. I am so happy that you are able to fill your mind with healthy Barry! Thanks for sharing! Like so many have said, “Go live your life!” Fondly, Claudine

  20. Moira Rummel says:

    Adjusting takes time ,more for some than others. Your art and writing will be a tonic.
    Enjoy his freedom,thrilling is fine word for long time caregivers as we have lived their devastating decline in our spirit. Don’t look back. Live for today…

  21. Janet Cruse says:

    Thank you for being so open with us, Nancy. I hope your writing has lifted you as much as it’s inspired me. Living is expansive. How wonderful for it to include giving and being loved.

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