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Type 1 diabetes, vascular dementia - stage 8.

midge333
midge333 Member Posts: 566
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I have told bits and pieces of my DW's story. I will tell her story now for the chance that we may be able to help others in similar circumstances. She developed type 1 diabetes when she was 8 years old. In 2012 (age 56) she suddenly developed dizziness and lost excecutive function. She underwent physical therapy and her dizziness improved but her executive function did not. In 2015, she had another sudden decline and lost even more executive function. In 2016 she was diagnosed with vascular dementia. I retired to care for her. In 2016 we met with our attorney and changed all our documents to reflect this new reality. My DW added a clause to her advanced directive that stated her insulin should be stopped when her dementia became severe. I asked her what criteria I should use to stop her insulin. She told me that when she no longer knew who I was, she wanted the insulin stopped. She continued to decline in a stairstep fashion over the next 9 years. In January 2024, she became increasingly agitated and we had to treat her with seroquel and citalopram. In December 2024, I placed her in a MC facility. She received excellent care and I visited her nearly every day. In March 2025, she began to not remember who I was. Over the ensuing months I began to feel increasing guilt for not honoring her wishes. I procrastinated, hoping that something else would cause her death and I would not have to stop her insulin. I discussed the situation with our kids and my DW's sisters. I decided to proceed with stopping her insulin. I met with her palliative care doctor and hospice was consulted. I met with the director and nurse of the MC facility as well as hospice. We stopped her insulin on the evening of 8/25. Hospice started her on a low dose of morphine. She became unresponsive on 8/27 and died on the morning of 8/28/25. My wife was a solid stage 6. She never experienced a single day of stage 7 and for that I am extremely grateful. She has been my girlfriend since 1978 and wife since 1979. I am sad but relieved. Some of you may not agree with our approach and that is ok. I share our story with the hope that it will help someone. I am glad we had an advanced directive and I am glad we consulted a palliative care doctor. I am glad my wife and I had very difficult discussions early in the course of her dementia so I would know how to best help honor her wishes.

mary & steve.jpg

Comments

  • harshedbuzz
    harshedbuzz Member Posts: 5,631
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    @midge333

    I am sorry for the loss of your dear wife. That's a great picture.

    Honoring a LO's wishes is a gift even if it isn't easily done. Wishing you peace and strength as you navigate stage 8

    HB

  • cdgbdr
    cdgbdr Member Posts: 244
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    My deepest sympathy to you and your family. You and your family have been strong and brave in your approach to her care.

  • sfrsythe
    sfrsythe Member Posts: 18
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    sending love and hugs as I am so impressed with your strength to handle this situation! Blessings!

  • CampCarol
    CampCarol Member Posts: 238
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    @midge333 - I am so sorry for the loss of your DW, but I’m happy to hear that you made plans early on and did this on her terms. I cannot imagine how hard that must have been. Sending thoughts and prayers as you transition into Stage 8.

  • wose
    wose Member Posts: 236
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    So heartbreaking for you. I’m so sorry for your profound loss. You were an amazing caregiver for your wife. Thank you for your story and very insightful words. I’m sure it will be very helpful to others. You and your family are in my thoughts. That is such a lovely picture.
    With Deepest Sympathy

    Rose

  • Chance Rider
    Chance Rider Member Posts: 55
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    I’m so sorry for the loss of your dear wife and for your ability to carry out her final wish.

    Thank you for sharing your story. Hugs and strength as you navigate the next chapter.
    ~Eve

  • Kat63
    Kat63 Member Posts: 160
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    So sorry for the loss of your DW. Thank you for sharing your story. I wish you strength and comfort going forward.

  • CindyBum
    CindyBum Member Posts: 498
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    Thank you for sharing your story. I am so sorry for your loss of your wonderful wife. To be able to honor her wishes is a gift, indeed.

    xoxo

  • Metta
    Metta Member Posts: 34
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    Very sorry for your loss. Thank you for sharing to help others. Wishing you peace. 💜

  • Vitruvius
    Vitruvius Member Posts: 397
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    I understand the very difficult path you and your DW took and greatly respect your honoring your DW’s wishes. I recall our exchanges a few months ago about how to deal with late stage care choices and appreciated your input. You may recall my DW has been in the very last stage, Stage 7f, for some time now and I am agonizing about what steps to take to see a peaceful end to her suffering.

  • Jgirl57
    Jgirl57 Member Posts: 702
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    Hugs to you and your family. Thank you for sharing

  • Michele P
    Michele P Member Posts: 30
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    I am so sorry for your loss. You did the right thing as hard as it was to honor her wishes. We are making our big decisions now. Legal documents are in place. 🙏

  • Gator1976
    Gator1976 Member Posts: 72
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    just so heartbreaking on many fronts. We all will have different but commitment similar stories sometime in the future. You did the right thing, she didn’t want to be a burden or trouble to anyone. Be at piece with yourself knowing she is at rest and smiling down on you.

  • SDianeL
    SDianeL Member Posts: 2,079
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    I’m so sorry for your loss. Praying for your comfort in the days ahead. Thank you for sharing your story. I understand how difficult it is to make that decision. My DH developed aspiration pneumonia in late stage 6. I knew his wishes. I made the difficult decision not to treat the pneumonia. He passed in August 2024. The greatest love we can show to our loved one is to honor their wishes and not allow them to suffer. 🙏💜

  • JulietteBee
    JulietteBee Member Posts: 219
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    Such a strong testimony in favor of having the difficult conversations. Thank you for granting your wife her wish. I pray God will cradle you in His loving arms & comfort you while you grieve.🙏🏽

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more