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nightjars
Community member Posts: 10 Courageous
Hello, My name is Jackie and I wanted to write and tell you about my sister Tina who was born with cerebral palsy. Sadly I lost Tina this October, she was aged 55. Tina has been the biggest thing in my life and losing her has left a massive gap. Ive been surrounded by disability all my life and have supported Tina for the last 20 years since we lost our dad. Tina has lived in care homes since she was 8. My family felt that it would be the making of her if she was independent and socialised with people. It was not hard for her because she had had a big wide engaging smile and a mad sense of humour. Her education early on at Craig Y- Parc school in Wales gave her a good command of the English language and although she could not speak, she graduated from the Bliss symbol ending up with a light writer voice machine, which was amazing for me, as it let me into her thoughts. I was always. the doting , serious sister and Tina was often irritated by me being overbearing. She did not do slush and grabbed everyday by the throat and tried to live it to the full. She would joke that I still went on holiday with mum (at 50yr) but she went off on her own and made new friends.
About ten years ago things started to go wrong. Tina moved care home and the situation was different regarding meals. Instead of having a resident cook who did all the meals, now the carers had to cook and feed the meals to the residents. It was not ideal. Many a time I found her feeder also eating her own dinner and trying t feed two residents at once. Tina never got her favourite Sunday dinner anymore, just boxed meals and gradually she started losing weight. Fast forward to about 2017, it was discovered that she had kidney stones. Zillions of the little blighters and one was lodged in a very awkward position so she was referred to Guys hospital in London under a top surgeon. The outcome was he could not remove it , and as by now we were in 2020, her hospital visits were without me by her side and I lost the plot of what was going on. Nurses and Drs in hospital try to do their best with disabled patients but it is just not enough. I have witnessed countless situations, where my sister has just been left on her own and not had things explained to her. I tried to send Tina with a sort of how to look after me booklet, I made it short and to the point, so they realised she understood everything and she had people back home who cared deeply for her.
I was not able to visit my sister last year in her care home during lockdown. Sad because she actually had a few good months when she put on weight with a PEG tube. Tina learnt how to text me on my mobile and friends and it opened her world up. I also spent 4 hours everyday talking over the phone, recalling happy memories. Then in august this year ,Tina was to go into hospital for the last time. It was because they thought her tube was leaking but it took the DRs three weeks to get together to work out what was wrong. It was so hard keeping her spirits up, she seemed to know that this was it. After 7 weeks in finally she texted me . I am getting my flipping operation t last. They me there was a hole in her diaphragm and it was not and easy op. When she came out of the op her breathing was laboured and some Dr from ITU told her, well we can put you to sleep or make you comfortable, she was going to die. This was not the time to be honest with her and take away her hopes. Now she s gone I am exhausted, emotionally and physically. Tina was and still is my every other thought. We all know or will know the pain of losing someone but its very hard when its your sibling and even more so when that person was disabled and you were caring for them. I have had some wonderful support from friends and people donating to Scope, who have no doubt helped us with Tina over the years. For now I am just trying to keep going in Tina s honour and hope to come on here and post some happy memories about her for you all to read.
About ten years ago things started to go wrong. Tina moved care home and the situation was different regarding meals. Instead of having a resident cook who did all the meals, now the carers had to cook and feed the meals to the residents. It was not ideal. Many a time I found her feeder also eating her own dinner and trying t feed two residents at once. Tina never got her favourite Sunday dinner anymore, just boxed meals and gradually she started losing weight. Fast forward to about 2017, it was discovered that she had kidney stones. Zillions of the little blighters and one was lodged in a very awkward position so she was referred to Guys hospital in London under a top surgeon. The outcome was he could not remove it , and as by now we were in 2020, her hospital visits were without me by her side and I lost the plot of what was going on. Nurses and Drs in hospital try to do their best with disabled patients but it is just not enough. I have witnessed countless situations, where my sister has just been left on her own and not had things explained to her. I tried to send Tina with a sort of how to look after me booklet, I made it short and to the point, so they realised she understood everything and she had people back home who cared deeply for her.
I was not able to visit my sister last year in her care home during lockdown. Sad because she actually had a few good months when she put on weight with a PEG tube. Tina learnt how to text me on my mobile and friends and it opened her world up. I also spent 4 hours everyday talking over the phone, recalling happy memories. Then in august this year ,Tina was to go into hospital for the last time. It was because they thought her tube was leaking but it took the DRs three weeks to get together to work out what was wrong. It was so hard keeping her spirits up, she seemed to know that this was it. After 7 weeks in finally she texted me . I am getting my flipping operation t last. They me there was a hole in her diaphragm and it was not and easy op. When she came out of the op her breathing was laboured and some Dr from ITU told her, well we can put you to sleep or make you comfortable, she was going to die. This was not the time to be honest with her and take away her hopes. Now she s gone I am exhausted, emotionally and physically. Tina was and still is my every other thought. We all know or will know the pain of losing someone but its very hard when its your sibling and even more so when that person was disabled and you were caring for them. I have had some wonderful support from friends and people donating to Scope, who have no doubt helped us with Tina over the years. For now I am just trying to keep going in Tina s honour and hope to come on here and post some happy memories about her for you all to read.
Comments
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Thank you so much for sharing @nightjars, I'm so sorry you've lost Tina, especially in what has been a harrowing past few years. I do hope this community will be a place to share happy memories and keep her humour and spirit alive.
A good place to find some structured support if you need it is the Cruse website. Please let us know if we can support you any further, and make sure to look after yourself.
AlexOnline Community Coordinator
Scope
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Hello Alex, That is lovely thankyou. I may well need some help, see how I go. It does help writing on here but I promise that my posts will be more upbeat about Tina next time. I know she would hate me for dwelling on things and rather I shared her funny little insights of life as a disabled person.
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You're welcome @nightjars we're here if you need us. I look forward to reading more about her, and there's absolutely no rush
Online Community Coordinator
Scope
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Want to give us feedback? Complete our feedback form now.
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