Mum living with MND in nursing home - I feel that every day is a battle
Hello everyone
My Mum was diagnosed with MND in March 2016. My father died in September of that year not having been able to understand her diagnosis or condition as he had dementia. Mum continued to care for him until that time. She struggled on her own at home until February 2018 when her legs just gave up one day and was taken at very short notice into a nursing home, where she still is today. Mum has the "slow burn" version of MND; her legs were affected first and her upper body is only now showing signs of the condition advancing. We could not afford to have care at home for mum and, in any case, her bungalow was too small to be adapted in any way - we did ask, but a preliminary agreement to an assessment didn't arrive until 5 months after she had applied, and two months after she had gone into the home. We sold her little house and all her funds have now gone into having paid for her care for three years, so we're climbing the Social Care funding mountain at the moment. Mum isn't sufficiently incapable to qualify for CHC funding (don't even get me started on this!!).
Getting to the point.....
I don't feel that ANY general care/nursing homes necessarily understand, nor can can cater sufficiently for, MND sufferers. Frequently my poor darling mum, who never complains, has to tell the agency staff what is wrong with her and explain why she can't "just move her legs a bit" or "wiggle into the hoist a bit more". The mattress situation took a year to sort out (as in getting one that didn't make her sore); the recliner chair she has is too big and she sinks down into it; the wheelchair she has is too uncomfortable; the food at the home is getting cheaper and more unpalatable.... It seems that literally everything is an uphill struggle and battle that we could both do without. WHY? When is this, or any other, government going to acknowledge the impact of being given this diagnosis. Why do I have to beg for everything to be made better? Why do I have to complain so frequently to her home? I have recently had to put in a Safeguarding alert to the CQC following the poor handling of Mum.
Yes, we now have an allocated Social Worker who is trying to help, and we have the support of the local hospice team, but I personally feel very alone as the support calls in which I take part are with other MND carers who all seem to be caring for their loved ones in their own homes. We never had this opportunity.
Is there anyone out there in this community who is experiencing the same as me? Has anyone else won the fight to get CHC funding? I have written to my local MP to point out that the Scrap Six Months campaign has apparently been forgotten amidst Covid.
Sorry - I know I'm rambling.
I'd appreciate any help/advice.
Thank you.
My Mum was diagnosed with MND in March 2016. My father died in September of that year not having been able to understand her diagnosis or condition as he had dementia. Mum continued to care for him until that time. She struggled on her own at home until February 2018 when her legs just gave up one day and was taken at very short notice into a nursing home, where she still is today. Mum has the "slow burn" version of MND; her legs were affected first and her upper body is only now showing signs of the condition advancing. We could not afford to have care at home for mum and, in any case, her bungalow was too small to be adapted in any way - we did ask, but a preliminary agreement to an assessment didn't arrive until 5 months after she had applied, and two months after she had gone into the home. We sold her little house and all her funds have now gone into having paid for her care for three years, so we're climbing the Social Care funding mountain at the moment. Mum isn't sufficiently incapable to qualify for CHC funding (don't even get me started on this!!).
Getting to the point.....
I don't feel that ANY general care/nursing homes necessarily understand, nor can can cater sufficiently for, MND sufferers. Frequently my poor darling mum, who never complains, has to tell the agency staff what is wrong with her and explain why she can't "just move her legs a bit" or "wiggle into the hoist a bit more". The mattress situation took a year to sort out (as in getting one that didn't make her sore); the recliner chair she has is too big and she sinks down into it; the wheelchair she has is too uncomfortable; the food at the home is getting cheaper and more unpalatable.... It seems that literally everything is an uphill struggle and battle that we could both do without. WHY? When is this, or any other, government going to acknowledge the impact of being given this diagnosis. Why do I have to beg for everything to be made better? Why do I have to complain so frequently to her home? I have recently had to put in a Safeguarding alert to the CQC following the poor handling of Mum.
Yes, we now have an allocated Social Worker who is trying to help, and we have the support of the local hospice team, but I personally feel very alone as the support calls in which I take part are with other MND carers who all seem to be caring for their loved ones in their own homes. We never had this opportunity.
Is there anyone out there in this community who is experiencing the same as me? Has anyone else won the fight to get CHC funding? I have written to my local MP to point out that the Scrap Six Months campaign has apparently been forgotten amidst Covid.
Sorry - I know I'm rambling.
I'd appreciate any help/advice.
Thank you.
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