She’s Gone.

She’s gone.

After more than 10 long years of suffering, and 12 days of being largely unconscious and not taking food or water, my sweet mother Michele Mousley Weed passed away this morning at about 6:00am PST from complications of Early Onset Alzheimer’s disease. She developed the disease in her late 40’s, lost herself to it piece by piece through her 50’s, and died today at the age of 60.

I keep reading that paragraph over and over, crying.

I was able to fly out last week and spend several days by her bedside. I will always treasure that opportunity. 
 
 

This picture is the day I said goodbye, which was Sunday. Before catching my flight home, I kept saying my last goodbye and then going back to her bed to kiss her forehead and say goodbye again. I kept saying “how do I just walk away? How do I walk away from her?” It felt so gauche, so crude, to leave her there in that bed so I could get on a plane. I finally gave her one last kiss, then made myself walk out the back door of the care-facility because I knew it would lock behind me and I couldn’t get back in. The urge to run back to her was overwhelming and primal. My sister Jenni followed me out, and she and I just held each other sobbing (she was saying goodbye then too). I still feel it now, that urge. I still somehow regret I didn’t run back to her, though there had to be an end, a separation, at some point.

That moment felt so arbitrary.

As the days continued to pass, it started to feel like she might never go. Denial set in, telling me that she would forever be in that bed in Idaho, receiving morphine every three hours, stirring occasionally, largely peaceful, her body still warm and living, her spirit still inside of her.

And now, she’s gone.

She’s gone at last.

She’s gone decades too soon.

She’s been gone for a long time.

I will forever be grateful to my father, Stewart W. Weed, who stayed by her side until the end. He promised her he would never leave her side when they got the official diagnosis and she was very afraid. And he kept his promise at great cost. He retired early, sold his home, and moved to a remote town he’d never been to in Idaho so he could afford to live with her in a care facility. His health began to fail in the last year due to the extreme stress. He nearly died himself, keeping that promise. His love and devotion, and ability to stand by his word even at incredible sacrifice to himself, is the greatest example I’ve ever seen of true love. It is something I will treasure all my days. It is the example I will follow.

It’s now time for me to walk downstairs and tell my daughters that their grandma, whom they never knew without this horrible disease, has died.

And yes, something has to be done about Alzheimer’s. Something has to be done about this terrible disease. It is vicious–more vicious than most people realize. I had no idea, myself. And we need to realize it. We need to understand that it is about so much more than forgotten names and missed appointments, and repeated stories–that is so much more horrifying than old grandparents saying funny things that make no sense. It is more degrading, heart wrenching and debilitating than one can even imagine, and the number of its victims increases every year. We need to be doing something about it. We need to be finding a cure. I have more to say about this, but I will have to say it another day.

Today, I will be with my tiny family, and I will cry a lot, and will write down memories, and I will help plan a funeral for the best person I’ve ever known.

Love to all.

44 Comments

  1. My condolences for your loss. You said it so well that "she's been gone for a long time". She is at peace, free from this horrible disease that robbed her of her memories, her family, her life… Hugs and prayers for your family at this time.

  2. My heart hurts for your loss, you have suffered along with her. Your dad who has sacrificed so much for her is selfless example to us all.
    My mother is in the early stages and I am angry that she has to go through this awful disease. I am sad that my children won't remember the amazing woman she was. But her true self will be kept alive through our memories.
    Hugs!

  3. Prayers to you and your family, Josh. What a beautiful testimony of your father's selfless devotion. That kind of love is a small glimpse what our Heavenly Father must feel for us as his children. That devotion of never leaving our side…especially when we are very afraid.

  4. Oh Josh, I am so sorry. Through your writings I feel I have come to know your family on a personal basis. This news strikes me surprisingly hard. I'm crying on behalf of your heartbroken family. I hope my tears can somehow take a few from you. You have changed my life and someday I will tell you how. Take care.

  5. My deepest condolences. It is a bittersweet event, the passing of someone so close, who was in pain for so long. It's been almost a year since my dad passed away from EO Alzheimer's, at the age of 61. My husband and daughters never had the chance to know him before the disease. We look forward to the day we see him again!

  6. I've never written about the day my mom died of the same disease in the same kind of facility. Thank you so much for sharing and putting to words the way it felt. My sympathies for your loss and your families loss. Moms are the best. Grandmas are needed. My prayers for you and yours for peace and comfort, and your inspiration for writing and creating a way to help this terrible cause of loss and death.

  7. You don't know me but I know your dear father . He has been a good friend even brother to my husband . My heart goes out to you and yours for this excruciatingly difficult journey your mother and family has gone through. Your family abundance of love is so very evident. She is with you, you heart never said goodbye . She will always be a part of your life. God speed and comfort and lift you and your family . May your wreary hearts find some solace and through the tears some light.

  8. My deepest condolences Josh. I am so sorry you and your family had to go through this. I didn't know you mom, but your dad was my institute teacher while I was in grad school. Again, I am so sorry and wish you family peace during this time.

  9. I send my deepest sympathy for your loss. Your post was very touching. Please be kind to yourself, grieve as deeply and as fully as you need to, and remember there's no "right way" to grieve nor a time table. So very sorry for your loss. I trust our Lord will comfort you.

  10. Sending my tears and condolences. Thank you for posting your raw experience with so many conflicting emotions wrapped up into one. As of yet, I don't know what it's like to lose a parent. But I know it will happen. Maybe soon. Hopefully not.

  11. I am so sorry for your loss!! While it is a relief in some ways to know that she is no longer suffering, is totally herself and is with you in spirit, it's ALWAYS hard when the moment finally comes. I have lost two sets of parents, and it doesn't really get any easier. Take care. We are all thinking of you.

  12. What a beautiful tribute…. and I was so glad to see you, your dad, and sister today – wish it had been under better and happier circumstances though! we sure love you and your family.

  13. My heart breaks for you and I am so, so sorry for your loss. I lost my grandfather to Alzheimer's when I was 7 years old and I still remember, 23 years later, how awful the disease is. I'm praying for you and your precious family. Allow God's grace to carry you through this difficult time. Your father's love for his wife is an inspiration to us all. <3

  14. I have read your blog for a long time, but never commented. I am so impressed with your strength and ability to write so eloquently. I know too many young mothers, women who have been taken too early from their families, called back to their Heavenly Father. I can't help but feel these women are extremely important and the Lord needs them on the other side for reasons we can't comprehend. Im so sorry for your loss. I pray you will continue to feel comfort at this difficult time ❤️

  15. So many things you said about the time before your Mother's passing are similar to what I experienced recently. My Mom was diagnosed with cancer in January this year & by April the treatments weren't working. I spent the first week of May with my Mom in a hospital in Utah, where she was walking & talking, warm & alive. I reluctantly returned to Oregon for a week, only to rush back to Utah to help my brother care for my Mom in his home. She slowly stopped speaking, to nodding, to no response. I spent the last week of my Mom's life sitting by her bedside giving her morphine. I clasped her arm as she passed on May 23rd. She was 69.
    Thank you for sharing your story & your grief. We'll include your family in our prayers, especially your faithful Dad.

  16. I am so sorry. It is not easy to lose a parent, and this was a particularly painful and not easy process. My mom also has dementia (not Alzheimer's, in her case), but she is 84 and I had the real her for a long time. God bless all of you.

  17. I am so sorry for the heartbreaking ordeal that you, your family, and most of all your wonderful mother (whose character shone through in the words you've written about her) had to go through. It absolutely is cruel and unfair, and I hope the legacy of love she left you can help you and your loved ones weather your grief.

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