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Much too fast, much too slow

When we adopted our son as an infant, a wise friend told me that no matter how long we had waited and how hard we had tried to have a child, I was still allowed to wish he would just hush up and go to sleep!

I think that’s true for all of us with our PWDs. No matter how awful it will be, we’re allowed to sometimes wish for the end. We may not ever say it out loud but I think it’s okay to think about every now and again.

But then each time someone in this community loses a loved one, it seems like such a nightmare. My heart goes out to each one. Yet still . . .

Comments

  • Emily 123
    Emily 123 Member Posts: 831
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    Well said, Barbara

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    @forbarbara ❤️

  • SusanB-dil
    SusanB-dil Member Posts: 1,204
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    agreed. ((hugs))

  • harshedbuzz
    harshedbuzz Member Posts: 4,578
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    @forbarbara

    All three reflections are spot on.

  • SusanB-dil
    SusanB-dil Member Posts: 1,204
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    oh @mommyandme (m&m) ((hugs))

    We cannot know. I'm so sorry.

    Sometimes we have no way of knowing what's real and what isn't with a LO. and you being so sick on top of it, trying to deal with everything... no shame.

  • forbarbara
    forbarbara Member Posts: 187
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    Thank you so much for sharing this. It means a lot.

    There’s no shame in being human - please put down the heavy burden you’re carrying and be gentle with yourself.

  • harshedbuzz
    harshedbuzz Member Posts: 4,578
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    @mommyandme (m&m)

    I am so sorry you are carrying the pain of this. You were human and struggling. Of course, you wish it hadn't happened, but don't let one incident of being a mere mortal detract from the reality of the ongoing tender care with which you treated your dear mother.

    HB

  • M1
    M1 Member Posts: 6,788
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    Agree entirely. What could you have possibly done differently? Nothing to be ashamed of. It happens. Respiratory infections--whether covid are not--are frequently the last final common pathway. Urinary, falls, pneumonia--the things that actually take us out are pretty easy to name.

    I am sure what you are grieving at base is that you wish the end could have been different. But you have to remember that there was no good outcome....if it hadn't been this infection, it would have been the next.

    I still pray every day that I will get the phone call that my dear partner has died in her sleep.

  • forbarbara
    forbarbara Member Posts: 187
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    @M1 , thank you for saying it out loud.

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    Thank you… I’ve figured out that Covid wasn’t anything to shame myself for… it’s the fact that instead of listening to her as she tried to speak to me, I shut her down instead and in turn, never heard her sweet voice again. That is haunting me.

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    Thank you kind friends. The regrets are hard to reconcile for sure. I have a couple of them, including the one described above. I believe saying it “out loud” has already helped. Thank you for this forum being safe to do so. I expressed it to possibly help alleviate some regrets for others as we travel this horrendous path. I do understand that our LO dying from something else prior to the final breath of dementia is a blessing…thanks mommy…I say thank you a lot to her these days. I also wished for a peaceful death while sleeping for my ma. It is only natural and human to want our love ones and ourselves to be released from the pain and suffering.

    I do want to apologize for my dramatics. Sometimes my thoughts pour out like a broken dam. Someone on this forum responded to me awhile back that they had been following my “productions”. I never mean to be theatrical with my thoughts, shares and support. I’m not sure anyone really wants attention for their plights with this painstaking journey, well I don’t anyway. Sorry if Ive ever come off as annoying.

    I do know that when mom was in her last days I vented deeply here about what I was going through. Thank you again for all your support and wisdom, I’m humbled often here. And…thank you forbarbara for putting out here that we often wish for…just rest… Please care for yourselves too.

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 704
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    Thank you all for this.

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    @mommyandme (m&m) I'm so sorry you're carrying this burden. I understand why you feel this way, but we're not superhuman, and we don't have powers of precognition. You couldn't possibly have known.

    Daily dementia care wears us down. It's only now, just a couple of weeks since my sister passed away, that I realize just how worn down I was - and Peggy was in memory care! You had your mom at home.

    You were an amazing caregiver, you always did your best - and I learned so much from you. I always admired your creativity.

  • ButterflyWings
    ButterflyWings Member Posts: 1,755
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    (((@mommyandme (m&m) ))) Adding my hugs and encouragement to please not beat yourself up for doing the best you could while yourself suffering from COVID. It is hard and maybe human (at least how we are socialized) not to focus on what seems like "fails" more than our "wins". There is so much angst anytime we don't do things perfectly and we too often overlook or undervalue what we ARE doing.

    Just imagine how many, many minutes, hours, days, weeks, and months of caring moments that she fully understood you were providing throughout the years including pre-dementia. And we know you were a truly amazing caregiver dealing with this terrible disease. I'm glad I did not see that comment about "productions". Maybe that poster had a language issue. Dementia is full of drama that is for sure. Sharing here should never be judged, not even subtly. Anyway, I am sorry for your pain over this. Please try to let it go as others urge.

    It may be that through no fault of your own, not understanding the meaning of her words may have been the blessing she needed at that time to escape this terrible prison of a disease. I am actually hoping that I don't later regret giving oral antibiotics again - as we are currently doing for my LOs suspected UTI and to help clear up whatever is triggering his asthma exacerbation. What if not knowing (as you did not), and not treating would actually be the kindest way to help him right now? Thanks @forbarbara for posting.

  • LisaLH
    LisaLH Member Posts: 40
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    I say to people all the time...I wish he would fall asleep and not wake up. This is my father I'm talking about. He would hate hate knowing he is living like this. I do not feel bad about it at all.

  • SusanB-dil
    SusanB-dil Member Posts: 1,204
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    @LisaLH Understood. My MIL would hate this shell of herself. 'this' certainly isn't her.

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    Thanks again you kind and supportive people!

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