Hi all. I lost my mum recently to what looks like it was a rare variant
of MND. She had been getting weaker for a year or more, speech was
severely affected and eventually swallowing and breathing. She never
actually got paralysed tho, and until 10 d...
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Hi all. I lost my mum recently to what looks like it was a rare variant
of MND. She had been getting weaker for a year or more, speech was
severely affected and eventually swallowing and breathing. She never
actually got paralysed tho, and until 10 days before she died she was
still living independently, but struggling more than she let on. I was
her carer and visited daily, driving 40 mins each way. We had been going
to every doctor to try get help, but between Covid and the fact that on
paper she was still functioning she was never taken very serious, and
was never seen by a neurologist until it was too late. I knew she was
sick but we all thought she would get answers and get better. Death cert
says MND but they still have doubts about it, but either way the ending
was the same. The things is I can’t get past the anger. I’m 32, have 2
kids, plus now also my teenage nephew who my mum was raising before she
died. I have a great partner and home, so I need to keep going, but I’m
so damn angry about it all, and then I swing between anger and bawling
my eyes out. It breaks my heart every single time I think of how scared
mum must have been, how she just wasn’t ready and she didn’t deserve it
and how helpless and vulnerable she was on that hospital bed. I’m not
angry at the doctors as I think if she had been diagnosed her last few
months would have been even more horrible, I’m just angry at how she
must have felt. I’m keeping busy with my horses, doing the things with
them I didn’t have time for before, I’m seeing a councillor and focusing
on my family but nothing is helping. My mind keeps saying what’s the
point of trying anything in a world that’s just so evil and unfair. It’s
changed my views on everything about life why bother being a good person
when good people get punishments like that, my mum just have to others
her whole life. It’s not her death I can’t handle, it’s the cruel ness
and suffering of MND I can’t get out of my mind. She was almost
childlike by the end and so vulnerable. And I stayed with her day and
night in hospital and had to authorise sedation and that was hard. Not
sure what other coping methods people may have who have been through a
loss to MND or any cruel disease, I just need some honest words maybe,
so I can stop the urge to beat everyone who comes near me with a stick
so I can sit and sulk alone ha thanks for reading this so far, not sure
how much sense I’ve made.