My Lovely Dad passed ❤️

[Hayley1418]

Monday 13th Jan after 2 weeks in hospital my lovely Dad passed away. Dad was about 8 years into his MSA journey initially diagnosed with Ataxia but last 2 years diagnosis changed to MSA. Dad had pnemonia & this time was just not strong enough to fight. I am so proud of my Dad he struggled everyday but he carried on as best he could. I had been told that generally MSA suffers typically pass quietly in their sleep - unfortunately this was not the case for Dad - on Sunday they were putting tubes up his nose down into his chest & Dad was upset with the pain. Dad became non verbal & I found that really hard - I missed his voice - he would mouth words to use which we could sometimes understand. Dad is now at peace but I missed him so much - miss caring for him - speaking to him xx We have collected the death certificate today MSA is on there - good the profile of this awful illness needs to be raised - we were at times having to explain to hospital staff what MSA is xx It’s awful & I will forever be proud of the fight my lovely Dad put up xx 💔

[mandg]

Hayley, I totally understand, my husband had a similar end, we thought the tubes may be the answer to helping, but the distress it caused was worse, for both of us, and that he couldn`t communicate was horrible. Its been just over 9 months now for me, and everyday I re live those last few days and cry. I wish I could have him back. My thoughts are with you x

[Yanno]

My thoughts are with you. Jackie died last April with pneumonia and so I understand what you and your dad went through.

I know Jax wouldn’t want me to be unhappy, we were always so positive about life and yet I miss her every day.

Well done Haley for getting MSA on the death certificate, as you say the profile of MSA needs to be raised when we can

Take care, Ian

[Hayley1418 in reply to Yanno]

Definately need the profile raising - we would explain to one nurse - she would change shift then we would have to explain it all again to next set of staff … the care Dad received was generally good - when we first arrived at the hospital they said Dad was unresponsive & very poorly - they took us to him & I knew straight away he was not as bad as they said - I told them I have seen him worse than that & I then had to explain he’s not unresponsive he’s got MSA!!!

[Gill-C]

I really appreciate both you and mandg sharing your experiences with the forum. It’s very brave of you both, especially as your loss is still raw.

You clearly tried your hardest for your loved ones in an impossibly difficult situation. It is a reminder to all us MSA sufferers to support our carers by planning for the worst in the end stages of MSA whilst hoping for the best and to discuss as much as possible ahead of time with those we love.

My thoughts are with you at this time

Gill x

[Hayley1418 in reply to Gill-C]

What a great summary ‘plan for the worst & hope for the best’ . To be honest we did not plan in advance very much Dad never seemed to acknowledge he was as poorly as we all knew he was - he was forever hopeful . 💔

[Whitefeather1]

My thoughts are with you at this hard time. I'm glad MSA is on the certificate.

My lovely friend Mag passed one year ago on the 13/1 from pneumonia, I miss her each and every day.

Take care of you now xx

[Ovx823k]

Sorry for the loss of your da. My wife passed away in March 2023 with MSA after about 5 years with MSA.Lets hope they find a cure soon.My wife did not want any flowers at her grave side she wanted donations to the MSA Trust. So friends and family raised nearly £1100 instead of buying flowers.

[chester2107]

oh so sorry , i lost my dad 5 years ago , still miss his lovely smile and how positive he was

sending huge hugs and treasure all the memories you had with him xxx

[Jolanes]

So sorry about your lovely Dad xxx

[Hayley1418 in reply to Jolanes]

Thank you for your kind words xx

[Derkie54]

Hello,

So sorry to hear that news, our thoughts are with you at this sad time.

You all did your best for your dear father, remember the good times and take care.

Derek

[Blessedfool]

You'll never ever lose that missing feeling. Every difficult time you encounter difficult period in your life, he'll be right there, you'll be thinking of him.

I realise it's so hard losing someone, I lost my dad and wasn't able to be by his side even, in fact none of the family were, he wasn't in a comfortable hospital bed, this is difficult because I always feel pain knowing he didn't even see the faces of his family, even though your father could not talk, physical presence accounts for a lot more, your eyes and face, his eyes and face, say it all.

I wish you peace in the coming days and months, reflect and enjoy your times, and keep crying, let emotions out. he'll live on in your heart. Blessings.

[Hayley1418 in reply to Blessedfool]

♥️

[star_fan]

Hi Hayley,

As I was reading your post I was saddened to hear you were experiencing the same pain and grief as I was on Monday 13th. My husband Jon died in hospital from pneumonia after being in ICU for nearly 2 weeks also. Just like your Dad, Jon was 8 years fighting this condition and was also diagnosed with ataxia for the first 6 years. Your experience was almost identical to mine and I agree whole heartedly we need to raise the profile of this horrific condition.

Thinking of you and your family during this horrible time x