Dreading Christmas ☹️

[Battack75]

I’m really dreading Christmas this year, I can’t seem to find anything to be joyful for or to look forward to. All I see is another year of painful deterioration of my poor dad as we all struggle on through this journey with no happy ending! Some days all I do is want to cry and remember how his life used to be before all of this......I feel so alone sometimes and feel that no one wants to know or talk about it. I know I’ll get through it because what other choice is there, but I really fear what is coming and have no idea how we will get through it all x

[Yanno]

I’m so sad for you as I can so clearly see the frustration you feel as someone you love deteriorates in front of your eyes. I sometimes think of when Jax first got her diagnosis and the anger we felt with the world that just as she was taking early retirement the beast of MSA robbed us of the future we planned.

We’re not at the stage of your dad and thankfully we can still take so many pleasures out of life but I still so feel for you.

The great thing about this group is they all understand and share the huge frustrations you feel.

Try and be strong for you dad, sometimes all we can offer is a smile and a holding of hands.

Take care, Ian

[Battack75 in reply to Yanno]

Thanks Ian, his deterioration has been rapid which makes it so hard to bear. I often read your replies to others and am inspired by your positivity. Take care and thank you!

[Hidden]

Hello. Yeah, I feel like grief and frustration walk with me all the time. Sometimes it just hurts to see my Dad how he is. I guess over time I've developed an ability to tuck those feelings away in my handbag for a while- as it were- when I need to live life too. Or when I need to have a happy day with Dad, and his amazing kick-ass resilience. I hope the bleakness eases up for you after a while. If not, keep reaching out. There's good carer support centres around too. Kx

[Hellebelle]

Hi, I can really understand how you are feeling. My dad has also deteriorated so much over the last few months and he is now totally dependent on my mum and his carers. I have also cried as I remember the strong, proud, kind and gentle man he has always been. It has made me angry at the world about the unfairness of it all. However, I have decided to be with him as much as I can to just hold his hand and remind him how much he is loved. At these times he seems comforted. I also read to him and he enjoys this. I also found that he enjoys a hand and foot massage. I know my dad is still in there even though he is retreating into his own world. I am crying as I write this because it has been the most upsetting and distressing journey for us all. All I can say is that you are not alone and that sometimes, the most important thing you can offer is your love.

[chester2107]

I feel for you , my dad has got worse in the last year, he still has his sense of humour but his speech is so bad and my mum struggles so much with him

It is so sad as you say when you think about how they used to be

We are going to my brothers this year so hoping he will enjoy time with the family x

[Graham612]

Hi I can relate to your messages. This is my first time writing. I was diagnosed 18months ago. Not long after my 50th birthday. I already have a feeding tube and can not walk unaided. The question is have is anyone having a hard time focusing with there eyes for even short periods.

[Startreckersdaughter in reply to Graham612]

Hi graham my dad is suffering with he’s eyes he can’t seem to look down anymore my dad has PSP aswell as msa google the symptoms they are so close and eyes are part of that