Hi all
I'm helping to look after my mum who has had mnd for three years. My step dad is her main carer. I'm currently staying in hospital with her as she cannot get used to almost any mask she's given for her nippy and we are trying to find a solution. She's had various masks since August. The best one they have found us (no leaks or alarms) still dislodges when she yawns and she's left with a trapped lip which causes her pain and anxiety that the mask isn't working. Her co2 levels are high so that's why it is a priority.
It is fine here in hospital when I'm sleeping near her but at home her husband needs to be in another room to get any sleep himself and cannot realistically sit up all night and look at her. She can't operate a bell or call loudly for help but can alert us with a quiet moan. The only thing I can envisage working is a night sitter of some description but local hospices have said none will touch the mask due to covid.
She's recently been awarded Continuing Healthcare after a painful application process but with full support from the hospice and mnd clinic and gp. However I'm alarmed to find that CHC carers won't even use the PEG let alone the nippy. It seems ironic to me that the worst health you have awards you CHC and then they won't give you the care you need. Our private carer we have does the Nippy and peg but is beginning to find it hard on her own.and won't be allowed on once we have CHC in place.
Does anyone have any support or ideas for how to keep an eye on someone with MND who can't move or speak, overnight with their mask, without becoming a zombie themselves through lack of sleep.
thanks
Charlotte
I'm helping to look after my mum who has had mnd for three years. My step dad is her main carer. I'm currently staying in hospital with her as she cannot get used to almost any mask she's given for her nippy and we are trying to find a solution. She's had various masks since August. The best one they have found us (no leaks or alarms) still dislodges when she yawns and she's left with a trapped lip which causes her pain and anxiety that the mask isn't working. Her co2 levels are high so that's why it is a priority.
It is fine here in hospital when I'm sleeping near her but at home her husband needs to be in another room to get any sleep himself and cannot realistically sit up all night and look at her. She can't operate a bell or call loudly for help but can alert us with a quiet moan. The only thing I can envisage working is a night sitter of some description but local hospices have said none will touch the mask due to covid.
She's recently been awarded Continuing Healthcare after a painful application process but with full support from the hospice and mnd clinic and gp. However I'm alarmed to find that CHC carers won't even use the PEG let alone the nippy. It seems ironic to me that the worst health you have awards you CHC and then they won't give you the care you need. Our private carer we have does the Nippy and peg but is beginning to find it hard on her own.and won't be allowed on once we have CHC in place.
Does anyone have any support or ideas for how to keep an eye on someone with MND who can't move or speak, overnight with their mask, without becoming a zombie themselves through lack of sleep.
thanks
Charlotte
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