In Memory of Tina Sharp 1966 -october 2021

nightjars

So, on the 17 October, it will be three years since my sister, Tina Sharp passed away at 55yrs . Whoever said time is a great healer, was wrong, as my grief for her, is stronger than ever. People do not understand how difficult it is to lose a disabled loved one.

I was 5yrs when Tina was born, with quadruplegic cerebral palsy. She became the glue in our family, keeping us altogether and busy! I watched how my parents fought tooth and nail,for things for her. When our parents passed away, I kept my promise to look after her, but you know it was not enough. It was so hard watching her, for the last time in hospital, the responsibility was humongous. Tina had kidney stones galore. a huge hiatus hernia, and she was so underweight. A feeding tube was put in for the last few years, but she got chest infections from it, and honestly , I would go with caution , when having these in severely disabled people, even a surgeon told me the tubes themselves were of bad quality. I was angry she had got so thin and put some of the blame on her care home.

Tina was lucky to have Scope (spastics society} , look after her most of her life. Despite Tina being close to family, our mum thought it best that she went to Craig-Y-Parc school, it was in Wales ( believe it still is) and from Watford, it was a bit of hike. Tina was educated there, and got a great understanding of English by using the the bliss symbol . possum and finally onto a light writer, which was so useful during the pandemic, as she could text to my mobile, and I knew what was going on with her.

After several colleges and now having her electric wheelchair, she became so independent and very sociable, something she would not have got, had she been kept at home.

She finally ended up in Princess Marina Center five miles away, so we would see her all the time. Her problems started when the home closed down and the residents were moved to Chesham in a new build. Not fit for purpose, really. The worse thing was they now had no central cook and the care staff had to cook as well as other care. Tina undoubtly suffered, losing more weight, her fave sunday dinner was not available and encouragement to eat. Indeed one person was feeding two residents at the same time, as well as her own dinner! I believe this started Tina on a slippery slope.

Then the worse thing, Scope was going to change. This new clever name does not immediately shout"physical disabilities" and people are confused at what it is. It seems to be a far cry from when S Society was formed, by some parents of cerebral palsy children.

Still we cant thank " Scope" enough for the support they gave us through the years, and lucky for Teen, she had a supporting family.

I miss Tina running over my feet with her wheelchair and coming out with swear words on her voice machine, crashing through doors that were were supposed to open, her mad sense of humour and true grit and determination to make the most of her life.

I thought I would grow old with her but it was not meant to be, I try to think that she had done all she could in life ,

and that in fact it was complete.

Rosie_Scope

Hi @nightjars, thanks for sharing such a touching tribute to Tina. I'm sorry her care wasn't always the best and that you didn't get more time together, she sounds like a fantastic lady. I can just imagine her sense of humour from how you described her and that beaming smile in her picture.

Grief can be a really tough ride and while I can't pretend I can fully understand what you're going through, I can imagine that the feeling of loss never fully goes away when you've lost someone so special to you. I'll be thinking of you and your family, I hope you have lots of happy memories of Tina to reflect on as the anniversary comes up ❤️

Rachel_Scope

Thank you for sharing @nightjars. It's such a wonderful picture of her looking so happy. I love how she would swear through her voice machine and crash through doors! It sounds like she had such an amazing spirit and I'm sorry you didn't get more time with her.

Doris_Scope

Hi @nightjars

Thank you for posting such a wonderful picture of your sister. From your description, she sounds like she was a wonderful person who hit life head on. It is always so sad to lose someone you love and it sounds as though you were very close, so it must be so much harder.

Take care ❤️

@Doris_Scope

Bluebell21

I am so sorry you lost your Special sister @nightjars You never really get over losing such a special person in your life. You do adjust because you have to, but there will always be a big hole in your life that nothing can ever fill. You never lose them completely as they are always in our hearts.

Thank you for sharing you tribute with us. Take care.

nightjars

Thank you for taking the time to read about Tina. It goes a long way to comfort me.

MW123

@nightjars

Thank you for sharing this poignant story. It is deeply saddening to hear about the difficulties Tina faced toward the end and the shortcomings in her care that contributed to her decline. Your experience highlights the urgent need for better support and resources for individuals with disabilities and their families.

I can only imagine how profoundly her loss has impacted you, especially knowing that you had hoped to grow old together. Tina's life and the care you provided for her are a testament to the power of family, love, and determination in the face of adversity. Take care x

SaraC_Scope

What a wonderful tribute to your sister Teen @nightjars Thank you for sharing it with the community. As each anniversary of a loved one approaches, our thoughts and feelings about that person, both happy and sad come to the surface. You've written such a clear image of your sister and her photo shows how bright she shone in your life.

Best wishes

Sara

Jemima_Scope

Thank you for sharing your sisters story with us @nightjars, I'm so sorry for your loss. It sounds like she was a beautiful and wonderful lady and so important in your life.

Take time to care of your needs during this time

Best wishes,

Jemima

Family Adviser Scope

Sandy_123

@nightjars thankyou for sharing, Tina sounded a great person with a super personality

Rosie_Scope

Thinking of you and your family today @nightjars ❤️

nightjars

Vikki66, I am so sorry to read you lost a brother. Yes you are right, I will grieve Tina till the end now. In fact this year it was so much harder. I had been caring for our mother the last few years and she was a rock to me in our Tina loss. Maybe I have saved my grief till when mum also went last year. I did go down to Tina s grave this year, I almost want to whisper it, in case she can still hear me, as I know she would not want me lolling about in tears. A few months before Tina passed , after finding her not well at her care home and realising that this wasnt going to end well, I said" Oh god Teen what will I do without you if you go", she was furious with my negativity, in my stress, I went to go outside, and have a smoke, but in a flash , she snatched the packet and crushed it with one hand, she detested smoking. So I am torn with my emotions, the very thing that makes me sad, is the same thing that makes me get up everyday and say Ive got this….for Tina x