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Peggy was accepted into hospice in late November

GothicGremlin
GothicGremlin Member Posts: 870
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in I Am a Caregiver (General Topics)

I have so many mixed feelings about this, but overall I think it's been good for Peggy (so far). It's all a little overwhelming so I haven't posted about it until now. I now know why people here who have called on hospice love them so much. These people are amazing.

What prompted me to call them and get Peggy evaluated is that she's lost over 50 pounds since this last June, plus we've never managed to get her agitation under control. I've been worried about the weight loss and I've been really afraid she's going to get kicked out of memory care because of her screaming.

Now that we're a couple of weeks in, I finally feel like we're starting to make some progress in calming her enough so that she's not screaming. She's still not eating very much so I've added in Ensure as a test - I don't know if she'll drink it. We only just started it, so I don't know yet how it's going.

My hope is that Peggy stabilizes and then goes off hospice until she needs it again. I mean, I guess I hope that? And I don't know if she's not eating on purpose - I don't know if she has that much will left in her. But maybe she does. I just keep hearing her say "I can't do this anymore."

Comments

  • Jeanne C.
    Jeanne C. Member Posts: 841
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    I'm sorry Peggy and you are going through this. I remember hospice being a blessing for my MIL and so many people here have said the same. Hang in there and let us know how she's doing.

  • Jgirl57
    Jgirl57 Member Posts: 511
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    I am glad you have the support of hospice. Hugs to you and Peggy and the team. Hopefully hospice can guide you on the nutrition/Ensure . From what I’ve read here, watching your LO no longer accept food is very hard on the family . I hope the MCF is supportive of you and Peggy’s care team/hospice.

  • CatsWithHandsAreTrouble
    CatsWithHandsAreTrouble Member Posts: 370
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    Gothic I'm so sorry to hear of your hurt and am glad hospice is helping Peggy and you.

    Mom really liked the Ensures we gave her and sometimes we would mix in milk, ice cream, hot chocolate powder, or a little bit coffee on occasion.

    It may or may not be a moot point but what flavor of Ensure are you trying out? In most stores around me they sell two kinds, chocolate and strawberry, and then a third one that's either vanilla or a "fun" flavor. Someone came by a while ago for an assessment of mom and she mentioned that the wearhouse club store near us sells a larger variety. Maybe Peggy would like a different flavor if she first doesn't take to it.

    I hope you and the hospice team can continue working together to care for your sister and keep her comfortable. Hang in there, you're doing your best. Lots of hugs and perhaps a warm beverage of choice.

  • M1
    M1 Member Posts: 6,788
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    GG I'm glad you have the help , no matter the outcome. You have always been a fiercely loving sister caregiver. Happy holidays to you, for what it's worth, and all the best for the new year-I wish that for all of us....

  • forbarbara
    forbarbara Member Posts: 188
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    GG this must be so hard for you. How do any of us know what someone else really wants? Trust your instincts and be at peace.

    BTW, This might be a good conversation to have with someone at Hospice since so many families have to decide what palliative care means for their LO.

  • Emily 123
    Emily 123 Member Posts: 831
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    GG I'm glad that hospice has been such a good support for you and Peggy. I don't think I'll ever NOT second guess the decisions I make for my mom. It takes a lot of soul searching to pick a way down the caregiving path, and we do the best that we can. I think you're doing a wonderfully, and Peggy knows in her heart that you've got her back.

  • harshedbuzz
    harshedbuzz Member Posts: 4,582
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    @GothicGremlin

    This is a bitter milestone on the journey. It's a difficult thing to accept when it happens but hopefully her team will make her quality of life in the now as good as it can be.

    I found both dad and my aunt very receptive to any sweet treat-- I brough him a milkshake whenever I visited and she was able to self-feed cookies longer than any other kind of food.

    HB

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,558
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    edited December 2023

    GG- I been trying to come up with something helpful to say- and I can’t other than to tell you I feel for you. It seems to me Peggy has advanced down this path rather rapidly this year ( just like Toolboxexperts’ wife). And now you have your partner’s Mom to consider too. I’ll be thinking of you.

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    @Jgirl57 So far they've been supportive. It's so stressful, trying to get Peggy to eat. And honestly, I'm not sure if she's willing herself not to eat. That's the hardest part.

    @CatsWithHandsAreTrouble Thank you. ❤️ You know, I've been looking for strawberry flavored Ensure, but haven't found it. I think Peggy prefers strawberry over chocolate. She's never been a fan of vanilla, so I got her chocolate, which is what was available. I'm going online now so see if I can find strawberry.

    @M1 Thank you - I wish the same for you and for all of us! I've always tried to do the best for Peggy. If I were absolutely perfect, I'm sure there are things I could have done better, but it's a pretty steep learning curve for all of us, and we can only do what we can do with the knowledge that we have.

    @forbarbara Good idea. We've had the beginnings of that conversation. There will be more to come.

    @Emily 123 Thank you for that. ❤️ I do have Peggy's back. And I thank the universe every day for sending Peggy's friend M to me and Peggy. He's been so devoted to her (he absolutely has her back), and such a help to me. I didn't know that people like him even exist.

    @harshedbuzz Definitely a difficult milestone. Thankfully all of us are on the same page. Like you said, we are all trying to make her quality of life as good as it can be right now.

    So true about the sweets! I make sure she's supplied with her favorite cookies and chocolate candies, and M does the same. She refused chocolate the other day though. 😮 I don't think I've ever seen that in her entire life! Not good.

    @Quilting brings calm It's so hard to know what to say - I don't even know what to say. Thank you for thinking of me, I've always appreciated your kind words.

    Peggy has never really recovered since the death of our uncle last year at about this time, imo. And she really has progressed quickly this year. She was still walking in late spring-early summer, now she doesn't really walk at all. It's always been fast for her (she was stage 4 in Aug. 2018, a mere 5 years ago), but I think you're right, this year the decline has been steep and quick.

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    I’m very sorry about this new milestone you must endure and accept. It’s all so hard. You’re a true warrior and such a wonderful sister.

    Have you thought about adding some strawberry syrup to the vanilla ensure? Of course someone has to be there to do it so maybe that’s a no go anyway.

  • loveskitties
    loveskitties Member Posts: 1,087
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    Amazon has them

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    I'm going to order the strawberry syrup today. Thank you @mommyandme (m&m) and @loveskitties I would never have thought of it.

  • JeriLynn66
    JeriLynn66 Member Posts: 884
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    GG, I’ve always wanted a Sister but to have one like you would be an amazing gift ❤️

  • CatsWithHandsAreTrouble
    CatsWithHandsAreTrouble Member Posts: 370
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    edited December 2023

    Strawberry Ensures are my favorite. Good luck with the syrup! Can potentially add that to a lot of things.

    I was also surprised when my mom turned down a peanut butter cup for the first time, that is a hot commodity in my household. Sometimes I could entice her by breaking it into smaller pieces or by eating some first and offering to share when she looked interested in it. Haven't tried that lately with the candy but I got her to eat some chips that way Monday

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    @JeriLynn66 I misted over when I read your comment. ❤️

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 707
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    I just want to say that I hope Peggy is able to get some food down, and that you are able to find some relief during the holidays. She is very very lucky to have you with her on this journey.

  • DCCEPEK
    DCCEPEK Member Posts: 95
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    https://alzconnected.org/discussion/comment/191837#Comment_191837


  • GothicGremlin
    GothicGremlin Member Posts: 870
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    Thanks @DCCEPEK It's been a tough year.

  • eaglemom
    eaglemom Member Posts: 594
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    I'm very glad that you shared with us about hospice. They can be and are such a wonderful support system. It is a new chapter in this awful journey, but it can be a very comforting to both you and Peggy.

    Let us know how the both of you are doing. We want to support you.

    eagle

  • GothicGremlin
    GothicGremlin Member Posts: 870
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    Thanks @eaglemom .

    Now that we're a month in with new meds - the screaming has stopped. There's been no mention of The Lady for almost two weeks. She's been more cooperative as well.

    She's still barely eating. We're getting some Ensure into her, but that's not enough. She's lost an additional 10 pounds. ☹️

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
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