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End stage ms face dropped

Hi my mum is end stage ms she is 46 and not for hospital admission she has come through so many infections recently and it was a medical best interest dession. I find everyone including myself speaks about everything that is napping as a matter of fact…then I Have days I don’t want to let her go it breaks my heart to watch her suffer and o hope it comes to a end soon but the docs shrugging there shoulders not able to do anything to help her I just want Somone to save her … She is completely disabled and can bearly hold her head up or engage in convo or no who I am even though I spend every day with her for a hour or sometimes two. Last hospital addmission I was told to say good bye she wouldn’t make it 5 times this happend she was discharged with a advanced care plan to my understanding no antibiotics available as she had shown resistance to all and they where iv. She became ill with cold like symptoms last Friday she was covered with oral antibiotics through the peg just to see what would happen…she hasn’t got worse but she hasn’t got better maybe it’s viral I don’t know 3days she hasn’t been put on her chair and since yesterday her face dropped on one side and she seems different she still has these symptoms of cold no better nut no worse the go has prescribed about 7days of oral antibiotics… The face drop is what is concerning me no one else seems worried it’s very noticeable it isn’t slightly Has anyone been on this situation anyone know some one who passed or this close With the snow I got to her earlier in the carehome but I can’t get back tonight…im so worried all the staff are bank staff and don’t know her atm and when ever I call they say she’s fine Any advise please I’m under no delusion what’s coming I’m 28 and cared for my mum since I was about 5 Xxxx

Jade, not much help I’m afraid but when you phone you could insist on speaking to the manager. When my Mum was in a care home (for different reasons to your Mum) I always asked to speak to the manager as the staff, good though they were, never seemed to know the important details. If you have your Mum’s MS Nurse contact details you could also speak to her.

Sending you hugs and apologies that I can’t help more.

Tippy xx

Hello my heart goes out to you. I have no medical advice that I can offer except to be there for your Mum whenever you feel you can. Make sure she is clean and comfortable and if she is in any pain seek advice from the staff on duty or if necessary ring your Mum’s GP and talk to them direct. I visited my Mum in a nursing home for five years until she died. I am not sure she knew me at the end as she had a rare form of dementia. I also nursed my severely disabled son at home for sixteen years until he died. I know what a difficult and painful time you must be going through. Do you have anyone to support you? Please take care and try to look after yourself as well as Mum. Sue xx

I can’t offer any advice either, might you be more likely to get a response in the Caring for someone with MS section?

Sonia x

I speak with the manager alot the carehome is pitty rubbish the manager has cancer so she’s not available atm which o understand but acting manger are only interested in turning the carehome around hence new staff ect nobody wanted to stay the carers that were there are fantastic but treated badly so left. A new company is in the process of taking it over. She has a ms nurse but they are so busy a d seem uninterested in my mum everyone does I guess because it’s the end of the road Xxx

I’m so sorry to hear about your losses xx It’s hard but she is clean and comfitable of she dosent pick up today I think I will keep her in bed until she gets .better maybe getting hoisted in and out the chair is becoming to much. It’s such a rollercoaster thanks for your kind words and support xx

Thanks Sonia Il give it ago new hear so not sure where to write xx

1 Like

Hello Jade,

If you would like to write on a part of the forum that gets more visitors then:-

select Forum from the headings at the start of the website.

Next you’ll see the five general categories which are:-

  • Everyday Living
  • New diagnosis and before diagnosis
  • Caring for someone with MS
  • Primary Progressive MS
  • MS News and Announcements

If you select Caring for someone with MS and start a new thread there, then I’m sure you’ll get more readers.

You are a very caring and courageous woman.

Best wishes,

Anthony

Hi there, Sorry to read of your distress Jade. I see lots of people far worse than myself with MS. It’s an awful disability! Thank heavens for people who care, like yourself. The advanced stages of MS can be a tricky jugling act. Stay positive & keep your mum comfortable. Keep yourself in good spirits too. I may rave on about Apple Cider Vinegar on this forum, but from personal experience. It’s been a good kick for me. With quite bad spasticity & a dropped left body. The ACV seems to wake up the circulation system. Keeping thinks circulating, seems to be the key. If I stay still for too long, the problems get worse a lot quicker. A bunch of red grapes & some B12, with some essential oils in the room is good for me. A good cool fan breeze for hot stuffy times & a fan heater when it’s cold, have been very handy. All my best wishes to you & your mum.