Every Journey is different

[6FNAUTICLUB]

We really don't know what stage in Mum's journey we are - every journey seems different - a month on from Mum's hospitalisation - she has been assessed by SALT and her diet put back to puréed food and thickened drinks. Her swallow is not good and she has weak lip, tongue muscles etc, this appears to have worsened in last week - at SALT visit, I was taken out of the room and asked about the future as this damage to swallow, speech etc generally progresses quickly - complete loss of ability to swallow, speak etc and generally at this stage most sufferers are not aware but Mum is - she doesn't understand implications but knows something isn't right and knows because of poor cough reflex she cannot clear chest.

Over last two weeks - at times she looks so vacant, struggles for words etc and her speech becomes very quiet and more slurred than normal, and like I say everyone's journey is different and we take each day as it comes - speech and swallow seem to be part of the later stages but because Mum is aware, still know us etc - none it makes any sense - I'm not posting this for definitive answers but just to see if anyone else's journey is the same as Mums and we can perhaps see where we're heading and how to prepare x

 

[Grannie G]

It sounds so upsetting 6FNAUTICLUB, especially as your mum is so aware. I hate the thought of someone being unable to cough to clear their chest.

Do you think these symptoms justify sedation of some form, just to reduce the torment your mother is suffering.

 

[6FNAUTICLUB]

It sounds so upsetting 6FNAUTICLUB, especially as your mum is so aware. I hate the thought of someone being unable to cough to clear their chest.

Do you think these symptoms justify sedation of some form, just to reduce the torment your mother is suffering.

Thank you, I don't think it's at that stage yet, Mum is trying so hard to be the woman she was six weeks ago and sadly, that is very unlikely xx

 

[cragmaid]

I'm sorry to ask but have you discussed DNR or ECHP ( Emergency Care Health Plan) with Mum's GP? It is a hard thing to do, but sadly it needs to be considered.
With regard to the eating problems, the team may want to discuss options such as Peg Feeding. Perhaps you could do some reading up.
Although my late Mum had some awareness, she was ready to die and asked and begged for death many times. Although this was hard to hear at the time, it actually made it easier to accept things when the time did come.

 

[6FNAUTICLUB]

I'm sorry to ask but have you discussed DNR or ECHP ( Emergency Care Health Plan) with Mum's GP? It is a hard thing to do, but sadly it needs to be considered.
With regard to the eating problems, the team may want to discuss options such as Peg Feeding. Perhaps you could do some reading up.
Although my late Mum had some awareness, she was ready to die and asked and begged for death many times. Although this was hard to hear at the time, it actually made it easier to accept things when the time did come.

Hi - yes DNR was discussed when Mum came out of hospital back to CH. SALT discussed future with regard to feeding and said that nasal tube or peg feed was available but it comes with its own problems with dementia sufferers - but I guess that decision will be made when time comes.

I think if Mum truly knew what lay ahead, then she would give up and be ready to join Dad but at the moment she's a fighter and wants everything available to her to make her well, but hasn't the strength to fight, if that makes sense. xx

 

[DollyBird16]

Hi
Apologies I have no experience of this stage, I didn't want to read, without letting you know I am thinking of you all. XX