Hi Newbie - altho posted the other day but it has not appeared

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Flowerpot

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Hi All

My Mum has recently been diagnosed with ALS and bulbar aged 78. She is currently in rehab care and will shortly be moving to a nursing home. She has been given a prognosis of 5-6 months but her MND nurse says she should never have been given such a deadline ( if you will pardon the pun ! )

Over the last 6-8 weeks she has really deterioated and we are so worried she has not much time left.

Sorry if I have posted incorrectly beforebut would really like some contact with you all

Thanks

Flowerpot
 

BethU

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I am so sorry about your mom. There are many wonderful caregivers on this forum who will be able to answer questions about your mom's care. I hope the nursing home care will help to slow her prognosis and give her the best possible quality of life.

Blessings,
BethU
 

Al

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Hi Flowerpot. Welcome but sorry about your mum. Most Doctors won't give a prognosis timetable because they are just guessing. There aren't too many definites with this disease except the outcome which I don't think anyone can predict. Feel free to ask what you need to know.

AL.
 

Flowerpot

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thank you both

There is just me and my sister looking out for Mum - brother and eldest sister are not interested.

I think what we find hardest to cope with is the rapid reliance on us in the parent - child role reversal and the awful swings in mood between hysterical laughter and all consuming grief she experiences. We are both patient and tolerant people but struggle to make her feel calmer. Any ideas ?

Mum is adamant that she does not have treatment to slow progression but i am worried what will happen when she cannot eat or breathe or communicate with us. the MND nurse has been great in reaasuring us - but in the cold light of day it sounds just awful

Sorry to blather on , when so many of you are showing such resilience in your own personal battles

kind regards

Flowerpot.:?
 

BethU

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the awful swings in mood between hysterical laughter and all consuming grief she experiences. We are both patient and tolerant people but struggle to make her feel calmer. Any ideas ?

Those mood swings between laughter and grief are a part of the disease, and neurologists usually prescribe medications that allow the patient to express normal emotions in a normal manner. Ask the doctor about prescribing some medications to help with her "emotional lability." This will make both your mom and you and your sister feel better.

Hang in there,
BethU
 

Al

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Flowerpot you are not blathering on. We wouldn't be here if we didn't want to try and help by listening.

AL.
 

Flowerpot

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Thank you all so much for your postings - I have been rather bemused by the technicalities and diagnoses of previous threads but am heartened that I have had some kind and straightforward suggestions.

Some people seem so informed but I rather find that adds to our confusion/ still -learning state.

Good wishes to you all

Flowerpot:)
 
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