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Hospice opinions

I put my DW on hospice about 5 o 6 weeks ago. I’m glad I did but I’m curious about people’s experiences. I’m a retired engineer so I know I can be a pain. But I feel like my primary nurse, although knowledgeable, is a little all over the place sometimes. I also have a hard time with the doctor, who will never meet my wife, making medicine decisions on 2 hand information from the nurse. I already had to waive them off of moving to Valium based on miscommunication between me and the nurse. And today was really the first time the nurse has seen my wife in her true state simply because of an out of cycle visit. Also she’s very nice but not super compassionate. Anyway, is it just me or have others had similar experiences. I always feel exhausted after we meet.

Comments

  • Victoriaredux
    Victoriaredux Member Posts: 152
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    Sounds like you need to come to an understanding just what the goals are - cures aren't happening , just comfort and assistance. What tasks can they perform during visits? What treatments do they think will help provide the comfort and assistance?

    As in a prior post , reconsidering their suggested Valium if they think it will calm your wife and you [insert smile emoji]- what's the realistic downside - your wife already has the incurable disease and your nerves are frayed at time - making things easier for you both why not try at low doses until you see improvement or if a problem you slowly taper off. I get you don't want to "make things worse" but haven't we all already been thrown in the deep end , I'd try any water wings they suggest to stay afloat . You trying may make them more compassionate too if they see you are open to trying new approaches - with caution.

    Or you can try another hospice for a better fit.

  • persevere
    persevere Member Posts: 198
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    Thanks. I appreciate you doing that. I don’t think I’m at that point yet to make any changes and I’m sure I share some of the blame. Going to change my mindset a bit and be more attentive to how they want the information.

  • persevere
    persevere Member Posts: 198
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    You’re not wrong

    you’re not wrong Victoria. I need to readjust how I communicate with them on the level they need. And as for the Valium I’m not ruling out anything. I just don’t want to skip steps. I think we had a misunderstanding on that one. But we may wind up there in the end.

  • jfkoc
    jfkoc Member Posts: 4,973
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    My experience…

    I kept the neurologist on the team

    Fired the first Hospice

    Loved the second one.

    While there is a mandate for all Hospices the staffs make a difference. I think you can switch once within a 90 day period. Hospice does not mean training in caring for perons with dementia!!!!

  • persevere
    persevere Member Posts: 198
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    edited December 2025

    You know I think you hit it jfkoc. Training is part of this Hospice's program. The company is Vitas. Not that that's necessarily bad but that seems to be the focal point. Sometimes she'll keep referencing what memory care does for some reason even though she told me it's so much better to keep her at home. She even recommended padding my entire bedroom floor for falls - which I'm never going to do. I don't know, that's an interesting statement you made. Did you mean to say 'that is not strictly what hospice is for'. I dunno

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