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Praying for this to end

Wag91
Wag91 Member Posts: 24
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My DH is stage 7, still ambulatory, good appetite, vitals all okay...counting my blessings....is it wrong to wish he will pass before "it gets worse" I am so done with these stages, wondering what I will wake up to each day, crossing off each day on the calendar only to look at a new month with no end in sight...I'm so tired of being tired...

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  • gampiano
    gampiano Member Posts: 329
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    Dear Wag91,

    No it's not wrong. We were fortunate to have an accelerated stage 7, it was very stressful, but I feel fortunate that it passed so quickly. I wish the same for both of you.

  • Wag91
    Wag91 Member Posts: 24
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    edited February 19

    May I ask, did he ever become bedridden? Hospice tells me this is inevitable. Last month I was dealing with pressure sores on his feet because he was unable to reposition at night, and now this month he is moving fine, getting up on his own...everytime I think this is the end, he comes bouncing back. My hospice team tells me it will get worse as we go through the final stage (I thought stage 6 was hell) 🤪

  • ButterflyWings
    ButterflyWings Member Posts: 1,755
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    I don't know if being bedridden is inevitable, if something else takes them first. Aspiration pneumonia or a chronic illness seem to be the main reasons PWD LOs may not go through every single substage and loss of Stage 7.

    Here is the Tam Cummings breakdown of the 7 stage model.

  • Wag91
    Wag91 Member Posts: 24
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    Is this used for Alzheimers progression? My husband has PPA FTD and doesn't seem to follow a lot of what is on the charts...I have always been confused between all the different types.

  • Wag91
    Wag91 Member Posts: 24
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    I feel this disease is taking our whole family down at the same time...I wonder what lesson(s) I'm/we are supposed to learn, and "he" never gives us more than we can handle..

  • Wag91
    Wag91 Member Posts: 24
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    My daughter's and I were talking about this earlier too....they miss their dad...breaks my heart that they have to go through this...we pray that he passes peacefully during sleep.

  • Wag91
    Wag91 Member Posts: 24
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    This stage 7 and what you're experiencing with your LO is terrifying to me...how do you stay so strong?

  • ButterflyWings
    ButterflyWings Member Posts: 1,755
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    edited February 20

    Yes, the various staging models are used to gauge progression, or where your LO is in their disease, as best as possible. It is not an exact science. But the guidance is that once our PWD LOs show one or more symptoms from a certain stage, that is considered to be where they are.

    They may never have all the signs and symptoms from a certain stage, but it helps prepare for their worst day, not their best. And that means understanding a PWD is in the stage where they are showing any of the listed traits. My DH still has some skills that might indicate Stage 5, with a side of advanced aphasia (language loss). Yet, he clearly is now in early Stage 7 based on the rest of the signs.

    This process of applying the stages loosely but honestly identifying things that indicate progression, even if the gaps don't show up everyday -- this is sobering but also safer than underestimating their capabilities for too long. Others will come along soon and explain better.

    @Wag91 I may have misread your question. Linked below is a specific FTD staging tool from Tam Cummings.


  • Wag91
    Wag91 Member Posts: 24
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  • Joydean
    Joydean Member Posts: 1,500
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    Wag91, you are not wrong nor are you alone. I too have been praying God would take my dh before this stage 7 progressive keeps going.

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