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My husband had Alzheimer’s diagnosed in 2015 after waiting for six years to be referred to the Memory Service. We were married for 52 years and lived in the same house for 50 years. I was his carer 24/7. Before lockdown he required constant supervision as he had forgotten how to put his clothes on and fasten buttons and zips. He didn’t know how to shower and clean his teeth. During lockdown he deteriorated rapidly and no longer recognised me. He didn’t remember where the toilet was so would pee on the floor. I had to help him get into bed as he had forgotten how to get his legs in. He was the kindest man imaginable and sweet natured but he developed night terrors so I had to calm him down. I was usually having 2 or 3 hours sleep a night so I became wipe out exhausted and my rheumatoid arthritis became much worse. I began having falls which has left me permanently disabled . He died 2 years ago after 52 years together. I was unable to have the help I needed to care for him and to support me. It would have made a difference if we had had an earlier diagnosis and more help.

My husband developed Dementia after a stroke in November 2005. I cared for him for 11 years till he became too much for me to care for. He then went into the amazing Clifton House Dementia Home where he had the best care possible. He was motivated to get up for breakfast and walk down to the dining hall. Deena one if the carers cared for him well and really got him to do things for himself. Was very grateful to them and our visits were good. Tea or coffee and munchies Amway there for us if we wanted them. Thank you Deena and Clifton House Dementia Home. I ran Care for Carers in Seaford to help other families cope with their caring problems and got some good advice from others from their caring rolls 💜💜

My mother was diagnosed with Alzheimer’s in 2017 and quickly deteriorated soon becoming non verbal which was hard on all the family. My Dad was her main carer and I popped in most days on my way home from work and supported Mum at the weekends. In 2019 Dad had a fall and broke his hip and died in hospital just as COVID hit. I moved in to support Mum when Dad was admitted into hospital and lived with her 24/7 for over 2 months. If I’m being honest I know how Dad did it for so long. I found I couldn’t cope on a long term basis so found a lovely care home locally.
Not being able to hold her hand and sit with her during COVID killed me and when we were able to visit she couldn’t understand why it was through a window.
As Mum’s illness progressed it was so hard seeing her slowly disappear in front of my eyes. Becoming a different person; a person who couldn’t smile, eat, drink etc. A person I loved wearing a mask void of any emotion. It was utterly heartbreaking….. 💔
We lost Mum in December 2022 and I miss her so much. 😢
Looking back I feel we weren’t supported by social services. Mum self funded all her care home fees apart from the last month of her life when a friend told me to ask about being Fast Tracked as she’d been admitted to hospital on numerous occasions in the last 3 months of life. I had to ask 3 times before Continued Healthcare was granted! She’s paid her taxes all her life and free care should be automatically provided when required. Families shouldn’t have to ask or fight for free fees at such an upsetting and worrying time.

My husband and I watched both of our father’s pass away a few years after being diagnosed with Alzheimer’s. When death came for them it was a relief as they suffered so much. We had a different experience then with my mother who had vascular dementia with Lewy body. She was diagnosed early and offered medication to help. We moved in with her and were her carers for 10years. It was still tough at times and tiring but a big difference was that we felt we hadn’t lost her, she was still there. When she passed we didn’t feel relief, just immense loss and grief.