My kindred spirit

Sorry long post I’m afraid. Go for a pee and grab your baileys or tipple of your choosing, on the way back and settle in, we may be awhile.x

I have just celebrated 2 of my firsts without my brother. He passed away on the 27th of Dec 2022.

He was such a small person with a huge personality. He had been living in a care home for the last year as during covid he was diagnosed with early onset alzheimers which is common for people with his condition. He had Downs syndrome and global learning disabilities.

As my parents were both disabled and elderly, and after several falls and hospitilisations during covid, ( they are not fun, him and I spent 7 weeks 24/7 quarantined in a private room together as he needed someone with him constantly reassure him and be his voice) Thank god for facetime. Eventually he was admitted into a local care home and was recieving palliative care with expectation of not making Christmas 22. Well he blew that expectation out the water as he did with everything he did, with lots of laughter hugs and cake .

Well what can you expect from a Hulk Hogan wrestling fan. Being in the care home surrounded by lovely young ladies who loved him as soon as they met him he thrived. We got to have him for a whole more year and we made some amazing memories.

I visited everyday for 3 hrs, worked fulltime (shiftwork), cared for my parents and my own children who although are adults were having some issues that needed support for. I ran myself ragged for that year to make it amazing for everyone so they all had some great memories even though he was ill. Even on the day he died he was surrounded by us all and he gave us smiles.
I took alot of time of sick from my job due to his death and my health, I was medically dismissed in aug from a job i loved. I cared for disabled children in a residential/respite setting. That was a major blow.

The 1st day of firsts was his 55th birthday on the 16th Dec 23.
The day was not as bad as i expected. I arranged for us to go to his favourite cafe and have cake all ten of us sat happy sad crying singing happy birthday, whilst we had tea and cake. His favourite thing to do. It was good.

Then came Christmas and he loved Christmas so much. I had memory bears made for each adult from his favourite clothes and Dr Who bedding, and put together a photo/scrapbook of him, throughout his life, a book to look at a smile or cry mostly both, for my parents.
It was a good day tearful but good.

The worst day is tomorrow. ( or later today by time i finish this)

The day we said our final goodbyes to him and saw him off in his tardis ( he had a tardis coffin). I have not planned anything with anyone. I’ve flooded our family group chat with silly videos today of silly things interspersed with talk about grief, links to online resources about grief and how to cope with it and with the firsts and memorial poems for family to read if they want to. I’ve done this throughout the year. My dad says it has helped him alot.

I’ve offered to be there for family but have not made plans. I just dont know if i want to be with them or be on my own. I’ve been so tearful today whilst trying to help them all.

I’m tired and just lately feel constantly angry, about the fact he’s gone, my job, my health everything, and I’m trying so hard to talk to me like I’d talk to my family, and to give myself grace and kindness but its so hard.

I hate myself for feeling anger at them all for leaning on me, for needing me constantly to keep them going, when all i want to do is scream at them and say when can i greive, whose going to show me its ok to fall apart.

I know i can fall apart in front of them and they would be there for me but i just feel like I’m the glue holding us together, the one whose keeping us afloat. I am also self aware enough to know that how I’m feeling is not just about my brother, I’m also greiving my job, my loss of income, my loss of independence and my sense of self worth and my health.

I know what im feeling is normal but knowing that doesnt make it any easier.

I’m so dreading getting through the day later.
I have this sense of doom building up, like a pressure building and im scared about whats going to be the trigger to make it blow .
I just not sure if being with family is going to be the way forward or just to stay home and be, in my pjs with my doggos.

Well I’ve rambled on so much, it must be time for a top up.

I’d like to hear how you plan on coping or how you did cope with the 1st day of the funeral annivesary.

Again im sorry its such a long post xx
Much love to you all
Hoping I’ll sleep now ive gotten that of my chest xx

Thank you so much for sharing your story with us, @Pookie. I’m so sorry for the loss of your brother. It sounds like you’re being so strong but you deserve care and support, too. It’s okay not to be strong all the time.

If you feel like a space just for you might be helpful, we offer free Online Bereavement Counselling which is held via video chat. If you click the link, you can find out a little bit more.

Hopefully someone will be along to share their thoughts on coping, but I just wanted you to know that you have been heard and you are not alone.

Take care,

Sounds awful for you. On the first anniversary of my sister’s death we organised a family meal so we could all be together. We toasted her and reminisced.

On the anniversary of her funeral my husband and I visited my parents so they didn’t have to spend it alone ( they live apart). My sister was full of energy and as she died of cancer we knew it was coming and she told us ‚ no mourning ‚ so we do our best not to be too miserable but it is hard

1 Like