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Father with MS

My father was diagnosed with MS 13 years ago and his condition has rapidly deteriorated during this time.

Three years ago he was forced to stay in bed, fed through a tube because he could not swallow anymore.

Sometimes he recognises me, sometimes he doesn't and if he talks to me, or at least tries to talk to me, he quickly forgets what he was talking about.

He can barely move, barely talk, gets an infection after another. This spring he spent a month in the hospital with pneumonia.

I know there is no way for him to get better, I just want to know what could happen after this. 

Is this the last stage? Can he get any worse than this?

I just want to prepare myself for what comes next.

I have MS

Oh how sad Bertha. 

I’m so sorry, I don’t know what comes next. It’s one of those situations where you know that a final end to his suffering would only be humane. But that doesn’t help you when it’s your father. 

I don’t know you or your father, obviously, I can only imagine that visiting him, however much you love him, is heartbreaking every time. 

Is he living at home? With your mother (or a partner)? How hard must life be for them. Have you talked to your fathers neurologist, MS nurse or carers about a prognosis? Do they have any expectations for the future?

As I said, I have no answers, but you have my sincere sympathy for you and your family’s pain. And he has my empathy for his. 

Sue

He's living at home but there is always someone taking care of him, either a nurse or a carer.

My mother is still living in the house, but she does not really share with me any detail on the situation. 

I know the doctors have stopped with any treatment because there was no point in keep trying, they are just fighting infections as they come. 

Thank you very much for your comment, it's hard to talk about these things to people who don't really understand the illness. 

I honestly don't know for how long his body can keep fighting. I don't know if it's a matter of weeks, months or if he can keep living like this for years. 

Hi Bertha

everyones experience of MS and it’s end stages will be somewhat different.

i sent this same message below yesterday for someone asking the same kind of question.

Hi

I’m so sorry to hear of your situation.

I unfortunately lost my dad 3 months ago.  

He had PPMS and COPD.  He also suffered with UTIs and chest infections.

he spent his last 6 months predominantly in bed and had a number of hospital visits.  He was essentially on end of life care with palliative nurses administering morphine for his pain.  His doctor advised us that there was a limited amount of time left for him as his body was tired of all the fighting.

Although the hospital staff were beyond fantastic they struggled to care for him in terms of his MS needs.  

In their defence he was in there to be treated for UTI / Sepsis.

He went in on a Sunday (blue lights and all) and he was really agitated and clearly wanted to go home.  We made a family decision to take him home on the Thursday and give him his wish to pass away at home with his family.  

He died on the Sunday.

I never knew how I would deal with the inevitable grief of losing my dad as we were a really close family but in truth, seeing his pain etched on his face subside at the end made it a lasting positive memory.

 

sorry if that was all a bit morbid.

 

all the best