Instead of the events that we would normally host for Carers Rights Day, this year we’ve decided to showcase some of the many inspiring and moving carer stories that the carers we work with have to tell.
These are just the merest handful of the amazing stories that our carers can tell about their lives. If you would like to add your story we will find a permanent place for these and would love to be able to add more. We might feature them in Choices as well. Please get in touch with the Engagement Team.
My carer history – Judy
Originally from Canada, I emigrated here with my husband and our son to my husbands home in Bingley in 1987. He was quite unwell and wanted to be near family.
I left my nursing career and started out on our new adventure: In 1989 I started the first Carers Support Group in Bingley and got involved in Carers National Association. This led to my being asked to join the National Users and Carers Group set up by the Dept of Health, looking at Community Care provision, or the lack of it, in our area.
I was also invited to join the Sounding Board and Committee that drew up the very first Carers Act and we have come such a long way since then.
A place for carers
Within my work was our lobbying Parliament for a place for Carers to ring, get information and advice from, and support one another. I’m proud to say that Carers Resource Centres fulfil that role amazingly well. My role led to us as a family being interviewed in the media and my being invited to speak at various groups including Social Services, Care Providers and Carers Groups.
Hope you like looking through this bit of my carers’ story – I’m very proud to be able to share the small role I had to play in the provision we now have for carers in our District. I still care for my son, who is now 46, and Carers Resource has been a big part of my caring life.
Thomas packs a punch
“Thomas loves his new punch bag. It gives him something to call his own and provides him with an outlet when he finds the strain of being a Young Carer overwhelming. It’s a great way for him to release tension and stress and also offers a great way to exercise when it’s not always possible to leave the house due to his brother’s difficulties. Thank you, Young Carers.”
Young carer story – Thea
Thea is a very intelligent, sensitive and thoughtful young girl who lives
with her mum, dad and younger sister on the outskirts of Keighley. Her
younger sister who is three, has a very rare genetic condition. She is tube
fed and has complex health needs that impact on the family significantly.
Thea’s mum told us: “Thea started Young Carers a few weeks before lockdown. She was so excited to go as she knew it was her time to enjoy other things, away from her sister. For me, looking after a child with special needs is hard, but Thea also needs attention. Having the virtual groups really helped. The activities helped her wellbeing as she felt part of something. She enjoyed meeting at Cliff Castle which gave her the boost that she needed.
“Thea needs to feel a sense of belonging and Young Carers and the staff make her feel good. During the lockdown Thea has experienced some challenges at home but has dealt with them so well considering she’s so young. She wants to learn and share her experiences with people and I think this is acceptance that her sister is different. Since returning to school Thea has become very anxious about a lot of things and is constantly worrying so the little groups as and when can help her.”
Thea said “Young Carers is amazing. I like it because it’s about me. I miss the group as I made new friends. I am so excited that one day we may get the teddy bears picnic. In lockdown Carrie came round and brought me pizza making things I decorated a box and called my pizza shop Pizza Thea. I made silly faces.”
A carer story – connie
I am nearly 80 years old and have osteoporosis and wear pain-relieving patches to make life bearable.
My caring journey began in 2014 when I was tidying a toy cupboard upstairs and found a carburettor. When I asked my husband Don what it was he just stared at me and said he didn’t know. Normally he would have known which vehicle it came from having spent most of his life repairing his own cars and motorbikes.
We had a battle trying to get his chainsaw off him. In retaliation, he cut down a greenhouse-full of fruiting tomatoes.
I had a big pile of crosswords on the mantelpiece but came home one day to find the charred remains of them on the wood-burner.
Another time when he was angry with me, he cut off the wires connected to my emergency pendant base station. I caught him dropping it in the bin.
We found he’d spent £800 on lottery tickets from Carers Allowance. He said he didn’t need it!
For about a year he lived on fish and chips – he got a good deal from our local fish and chip shop. High cholesterol made him switch to Cornish pasties – making a 7-mile round-trip each day to get them. He’d eat the centre and throw the pastry to the birds.
Later he changed to eating only trifle, 3 or 4 times-a-day. I enriched these with children’s vitamin drops, two eggs in each batch of eight, puréed peaches, two tablespoons of ground almonds and topped each trifle with fresh whipped cream. Sometimes I’d come home to find Don had thrown his trifles on the garden to punish me.
Don always loved driving and maintained he was still capable of doing so even after being told he couldn’t any more. His driving licence had already been revoked, but he continued driving round for five days. We had to get the local police to come and take his car keys from him.
For about 18 months we had a wonderful set of volunteer drivers who would take him on exactly the same 45-mile route four or five times-a-week.
A bus around the Dales
During his last summer we went each Sunday on an 80-mile bus journey into the Dales. He knew what was round almost every corner.
I had wonderful help and support from our local pioneer projects. I was able to discuss our problems and gained knowledge from other people’s experiences.
I cannot thank the NHS for all the help and support we received.
My Baby Girl ------------ I can’t imagine life without you The laughter and the fun The shopping trips to Liverpool Exhausted we’d come home With shopping bags of shoes and treats And a gift for Dad, the sourest of sweets. We’d talk and laugh, recall the times, Of the things you did in your dancing days The mischief, heartbreak and the tears you cried Home sickness strengthened your character in ways, That prepared you to be who you are today My baby girl, whose hand I held Is the strongest, bravest woman I know And a daughter of whom I’m oh so proud And I’ll never be ready to let you go But just to remind me when the tears start to fall, A bond so strong, our friendship filled hearts, What we had was amazing and you gave me it all Just know in my heart we will never be apart Carol Beardmore 7/7/20
A carer story – Carol
I am a carer for my 35-year-old daughter who has Down’s Syndrome and early-onset dementia.
But the last 2 years I have been caring for my youngest daughter also who was only 32. In January 2019 she was diagnosed with stage 3b advanced cervical cancer.
After a gruelling treatment regime of chemotherapy, radiotherapy and brachytherapy, she was given the all clear last autumn.
On my 60th birthday in March this year, she was told that the cancer was back and there was no treatment this time and she was given less than 6 months to live.
From 13th March 2020, she spent 2 months in hospital, unable to have visitors due to Covid-19. She had enormous anxiety about being able to manage her pain at home but eventually she came home in May 2020.
As a family we provided 24/7 care for her at her home, with Macmillian nurses and other professionals visiting every 2 hours for pain management. With little time left, we arranged her wedding at home in her living room to her fiancé of 2 years. Friends, family and professionals were so very generous and helpful and their kindness will never be forgotten. It was an amazing, unforgettable day and we have memories of our daughter as a happy and beautiful bride.
In June she spent her first weeks in Dove House Hospice, where they organised a cinema night and an afternoon tea for the newlyweds. She was able to come home again and managed for 7 days and then she decided it was time to return to the hospice as life was getting just too hard for her. She couldn’t fight anymore.
The staff in the hospice supported myself and her husband to stay with her for the last 5 days of her life and I am humbled by the care, love and skills of the staff.
My daughter passed away at 1.32am on Wednesday 15th July. It was pain free and she was dignified to the very end.
She worried about me staying away from my other daughter, her sister, and didn’t want me to be upset, but we agreed that it was Mum’s job to worry and to care and to be upset if I needed to….. I was there at the beginning of her life and I would be there at the end too.
Her final words to me were ‘Mum’s Job, done’.
2020 will be remembered by others for Covid-19, but for me it will be remembered for my beautiful daughter.
Since losing her my creative side has been re-kindled. I have started to draw and write again. The drawing is the CD cover design of a song ‘Forever and 2 Days’ written by my daughter’s husband to raise funds for Dove House Hospice in Hull. The poem was written at in the middle of the night whilst at the hospice and it made my daughter smile when I read it to her.
It’s called ‘My Baby Girl’.
Love you loads sweetheart….. Always.
A carer story – Denise
I was Dad’s main carer until February this year. My dad had a suspected stroke. It was decided by the “powers that be” for Dad to go into 24hr care on the 23rd March this year.
Dad is in a care home and I miss him so much. Six days a week I’d been looking after Dad to the best of my ability even with my own health issues.
I decided to take up my jewellery making again as something to pass the time. One of Carers’ Resource’s workers, the lovely Melanie, has been so supportive with me through the pandemic. She has me out a lot.
Effects of the pandemic
The pandemic has got me so down. My health has declined due to all my hospital appointments been cancelled.
I was furloughed from work. Then in August my job was terminated and my P45 sent out.
I was so grateful for my Wellbeing Grant from Carers’ Resource. I used the grant to get my hair done. I am now waiting to be booked for a massage when I feel comfortable to go. I have a great-grandson who has put a smile on my face through this pandemic.
All I would love is for life to be normal again. A lot of people will soon be cut off from the outside world. Which is not good for anyone’s wellbeing.
I loved being a carer
I loved being a carer. You have to have a caring approach. And you also have to love what you’re doing. I really and truly miss looking after dad. I miss seeing him in person. I saw dad a few weeks ago. He didn’t even recognise me as its been months since I last had personal contact with him.
The government didn’t consider families with loved one who have dementia. When they’re cut off from their families they decline quicker.