Neurodegenative Disease Support

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This community is a gathering place for all those affected by neurodegenerative diseases. Patients, family, friends and caregivers are welcome. Share info, ask questions, or vent about your day. Whatever you'd like to talk about, we're here to listen.

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founded 2 years ago

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ZenGrammy

Practical solutions for caregiver stress (www.mayoclinic.org)

submitted 2 years ago by ZenGrammy to c/neurodegdissupport

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I hope everyone is taking care of their physical and mental health today.

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[–] ZenGrammy 1 points 2 years ago

Yes, it is so important to just have an honest dialog with the doctor. We know the diagnosis and have the internet available to us.

I am planning to have a meeting with my mother's nursing home in the next week or so to get an update on her progress medically and sign new end of life instructions. I just need to find out if my brother wants to come with me or if he would rather not do it. It's hard for him and legally I don't need him there so I leave that up to him.

So far they've been very honest about how she is doing and what to expect. She is not eating very well anymore and mostly repeats the same thing when we try to talk to her. They knew it was likely the not eating would happen so they put some weight on her by giving extra desserts when she was first admitted. They seem to really value my opinion and advice when it comes to struggles she has and don't sugarcoat things when they give me info.