I was also his Carer and he lived with me for the past 15 years part time, until last year when he moved into a nursing home due to his condition worsening.
The grief is horrendous. He was my favourite person in the whole world.
Yet I am also grieving my job. I have been unemployed since June last year. I am an artist which is something I started as a sideline 3 years ago but I’ve lost all motivation/inspiration for that too.
I know I’ve isolated myself. I don’t care to be around people because when I am, my mind drifts anyway.
I know I am mentally exhausted and attacking my self esteem which is low. I feel ugly I feel like my heart is broken physically.
I just miss him terribly. I miss his kindness and his warmth. I miss the connection only we had.
I am doing my best to be there for my family, my folks especially but I find that difficult when I feel this way.
I’ve lost my identity as caring for him was a huge part of that and I feel very confused about who I am now.
I want to honour his memory. I just don’t know how to do that. I know when I find that, I’ll be ok and I can get back to helping people.
Thank you for so bravely reaching out. I’m so sorry to hear about brother. I can hear the love and pain in your words.
You are not alone. You might want to connect with @BenSmith11. They recently posted this thread where they shared their experiences of sadly losing their brother who had a learning disability. You may understand some of what each other are going through.
You mentioned losing your motivation for art, and wanting to honour your brother. Maybe there is a way to combine the two. You could create a memorial portrait. Or is there is an arts charity you could fundraise for? These are just some ideas that you might want to explore.
The community is here for you, whether you want to chat, ask advice or just get something off your chest.
I have a special needs brother whom I love so much. The word special was invented for them as they really are.
My brother is unaware of the world around him and thankfully escapes the heartache it can bring but I am grateful he is relieved of that. He does however know who I am and his visits are probably my only happy moments. As long as he has his chips, cake, chocolate and music he is content in his world.
It is such a special bond and my hearts goes out to you as no one could ever replace that relationship.
If you feel up to it tell me about him. I am sure there are many happy memories to share.
Aren’t we blessed. I will always feel that way about him. Right now I just miss him.
My Brother had Down Syndrome and a very childlike essence. He was 33 when he passed and I am 12 years older. I have always cared for him but for the past 15 years I did that in a paid capacity from home where my living room became a hospital room for 3 days a week. I was respite for my folks.
Last year my job ended as his health got considerably worse and was moved into a nursing home. He suffered pneumonia 14 times since he was 20 and had lung failure but had other complications, sepsis is what took him.
He was the absolute light in all of our lives. I’m one of eight siblings. He was my favourite and the others know it. Just as I’m sure he was theirs.
His impact on me is most certainly one of kindness and his strength of character was also unmatched. He loved his food and I barely cook now as he’s the only one who appreciated it. My Daughter has Autism and my Husband is a fussy eater too. My Brother loved what I did. Good home cooked meals. My culinary skills are wasted now.
Every song I hear reminds me of him. He loved music and film and had influence from me and my siblings. His funeral playlist was 10 hours long. He was a massive UB40 fan. I find it brings comfort to listen to now, although it was never my taste, I’m more a Marley fan.
I find it difficult that I’m not on high alert now for medical emergencies. That the joy feels like it’s been sucked into a void. (I know we create our own yet I don’t feel like it, it’s not the same). there is a kind of love you receive from someone like my Brother that is effortless and pure. Completely unconditional. That’s what I miss.
Thank you for responding to my post. I appreciate you.
I am a resin artist. I have been creating pieces of art for my family with my Brother’s ashes in. I’ve always turned memorial asks away but it was important to my family so I did it.
I have been gifting pieces of art to a local mental health charity since before this happened. I will continue to do so. I also leave little pocket hugs out in the world for people to find too.
I have sold at craft fairs but I’m currently looking for somewhere to sell my pieces on a permanent basis and it’s tough. Caring for my Brother was my full time job. I’ve been living off of my redundancy and now it’s all gone. So it’s official, I’m a struggling artist with zero income. I digress! I am still doing my best to make something out of what I do.
it’s 6 weeks on and it’s quiet. I am home alone most of the time and just floating. Friends have stopped calling. I’m usually upbeat and I’m currently suffering with a chest infection so feeling sorry for myself and not able to do much. It’s times like this when it hits us more.
Forgive my essay, I enjoy writing. Thank you for caring.
I write often on social media. I enjoy telling stories and have been constantly nagged by my family to write a book. Yet I have the attention span of a gnat.
I could talk about him all day. My life was so full of him. Our crazy antics. My outlandish missions of getting him spectacular things (like video messages from celebrities, to his own radio show). I was never shy about asking for things for him.
Do you think it’s okay to sit with the sadness for a while? I’m an advocate for not living there but from time to time, that’s okay.
I have no idea how I ended up on this site. Floodgates are open .
Lost my brother with cerebral palsy in January, funeral was the day after my birthday.
It’s been a struggle to get to where I am now, and I still grieve. I took a month of work, went back and was struck down with some type of flu!
My brother was lucky enough to live in a house with 2 other lads who have similar needs and they have 24 hour care. I found going there and helping them out from time to time helps
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