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My mum has end stage ms I need advice

Hi I’m so worried for my mother she is 46 and severely disabled by ms. She lives in a nursing home 20mins form me ( please don’t judge I couldn’t manage hoisting her ect ) she is peg fed she can’t move her arms or legs. She is on patches for the saliva and has no antibiotics available to her (last time she had a infection iv antibiotics didn’t work ) she was discharged with advanced care plan and she is not for hospital admission. The hospital made a best interest dession she isn’t for resuscitation neighter. She has done well but a week ago well 9days to be exact she has been on oral Antibiotics through the peg because she has become weak and cold symptoms so they covered her 4 days in and in bed her face dropped so she seems to have no control of her right side of her face. Yesterday she choked but quickly recoverd later that day I had a call to say her chest was bubbly I sat with her for a few hours and in this time she became rapidly worse and a her tempture spiked and she was struggerling for breath on and off for over a hour. No help was the nursing home I managed to get a out of service gp but by the time she came mum had settled down temp was normal and no crackles where found on her chest. The gp said she must of had a aspiration and couldn’t clear it her self. ( no one in the care home was trained to use the suction machine and everyone just shrugs there shoulders) I’m wondering if the face drop has made her throat and swallow even weaker twice yesterday she choked and is a matter of time peninoma is on the cards but this time with no antibiotics that will be strong enough to help. Although the out of hours gp did change her oral antibiotics to help cover the fact she may get penomia. It was generally the most scariest thing I’ve ever seen it’s not the same as hospital where they have proper doctors and machines. Do I over ride my mum’s wishes and send her to hospital ? I don’t want to watch this again I don’t want her to choke. Has anyone lost some one to ms? Do you think she is close to the end I don’t think I can watch and do nothing. I love my mum i visits her every day what do I do Any advise please I’m under no delusion what is coming I just can’t seem to find anyone who is wear I am now my mum’s just keeps going and her suffering is like no other Sorry for the long blog I really am lost I’ve cared for my mum since I was about 5. Thanks so much jade xxx

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Oh Jade

Your situation is so sad. I’m really sorry that I have no useful experience or advice to offer you. It does sound as though this is the end stage.

It must be breaking your heart to see your dearly loved mother suffer so much.

But as to whether to send her back to hospital, really that’s a decision only you can make, with the help of the staff at the home and the medical professionals.

Thinking of you at this time.

Sue

Hi Jade,

If I’ve understood you, the hospital has made a “Best Interests Decision” and that your Mum doesn’t want to be resuscitated. Is that right?

I think that you may be in for the hardest part of being a loving daughter. Your Mum is approaching the end of her life and the best thing you can do is to ensure that she spends her last days in comfort and dignity. If I were you, I’d make a fuss and tell the people who are running the nursing home what your Mum needs, if she has trouble swallowing.

I don’t know what the MS Nurse can do but perhaps she can talk to the nursing home as well. When resources are in short supply the person who shouts loudest gets all the attention.

I hope that your Mum knows what a wonderful, giving and caring person you are. Your love will be her greatest comfort.

Regards,

Anthony

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Hi Jade I am so sorry that your Mum’s condition is making it difficult for her to swallow. It is unbelievable that no one has nursing training enabling them to use a suction machine to keep your Mum comfortable. They are not difficult to use as I used to have one at home for my son which I was shown how to use. Does a physiotherapist visit the home as they are the experts with suction machines? Have you considered a hospice where standards of care are usually superior to nursing homes? Perhaps you could discuss this with the GP? My thoughts are with you. Sue xx

Hi Jade,

I’m afraid that I don’t have much advice to offer you, but just wanted to echo what others have said; you are clearly a very loving daughter and your Mum would be so proud of you.

My Mum is also in a care home with advanced MS so I know that we have all of this to come in the not so distant future.

I really hope you have the right support around you to help you get through this situation.

Will be thinking of you.

x

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an appalling situation - if someone ‘isn’t for resucitation’ it shouldn’t mean they are just left. Is there a hospice near you - they may be able to advise.

This is horrible Jade, you need support at this time as well as your mum. Krakowian is quite right, she should be given hospice care. A nursing home is not equip to cope with these situations, if it is possible & you have a hospice near you, contact your GP & request that they make a referral, she will be given dignity & the best care & you will be supported as well.Take care sweetheart xx