A Tale of Two Journeys: Lewy Body Society
Hello, my name is Kerry Hine,
Thank you for taking the time to read my story.
My beautiful husband, Charles, was diagnosed with Lewy body dementia in 2020, during the Covid-19 pandemic. I cared for Charles full time for three and a half years. We were isolated. It was a struggle. The last 10 weeks of his life were particularly traumatic. Charles passed away on New Year's Day 2024.
What is Lewy body dementia?
It is the second most common type of neurodegenerative dementia in older people and is a complex and frequently misdiagnosed disease that affects memory, thinking, movement, sleep and behaviour. At least 10-15% of all people who live with dementia have Lewy body dementia.
Most people have never heard of it. Most medical professionals and care workers know little about it. The death of actor Robin Williams raised awareness of it.
Some of the symptoms Charles experienced:
Thinking
- Spatial awareness difficulties
- Problem-solving abilities decreased
- Fluctuating levels of cognition (within each day)
- Difficulty with planning or carrying out everyday tasks, such as using money, phones or household appliances
Psychological & emotional
- Hallucinations
- Delusions
- Paranoia
- Anxiety
- Emotional regulation difficulties
Physical
- Problems with balance (fell over 7 times between May & October 2023)
- Temperature regulation difficulties
- Poor swallow reflex
- Orthostatic / postural hypotension: low blood pressure on standing up
- Gastrointestinal blockage
- Bladder sensitivity – particularly at night
- Constipation
- Incontinence, single, then double
- Disturbed sleep – rapid eye movement (REM) sleep disorder causing restlessness and nightmares
Impact on my own health and my identity
Sleep deprivation affected my insulin and I became pre-diabetic. I put on weight due to this, comfort eating, and only eating microwave meals for a year. I couldn't leave Charles alone for long enough to cook or wash up lots of dishes as he would become delusional, paranoid and start hallucinating if I wasn't with him to keep him grounded. I didn't have time to exercise.
From being Charles's wife, I became his 24 hour carer.
He became my little boy. By the end, he was my baby.
What are the funds for?
Why?
- They are the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia.
- They fund the first ever Consultant Admiral Nurse for Lewy Body Dementia, Rachel Thompson.
- Charles and I were fortunate enough to have Rachel support us via Zoom for 8 and a half months through the final part of our dementia journey. Rachel was the only person who knew enough about Lewy body dementia and the best methods to help the individual living with it. She was truly an angel for us.
- Incredibly, there are only two Consultant Admiral Nurses for Lewy Body Dementia for the whole of the UK. Neither is state funded.
How will my funds be used?
The funds will go directly to the Lewy Body Society.
PayPal Giving Fund, a registered charity (No. 1110538), will receive the donations and transfer the funds to the Lewy Body Society via PayPal or (if the charity hasn’t enrolled with PayPal Giving Fund) by cheque.
It is the Lewy Body Society’s mission to fund clinical research, understand the causes of Lewy body dementia, and advance its diagnosis and treatment. They have funded ground-breaking projects and worked with top UK universities since 2007.
A Tale of Two Journeys:
- Journey 1 - the Lewy Body Society supported us in the final year of Charles's dementia journey
- Journey 2 - to fund a recovery journey for me
The Other Journey
I have another GoFundMe to raise funds for a healing journey for myself to help me recover from caring for Charles full time for three and a half years, beginning during the global pandemic.
Journey to Mongolia
In late August to early September this year I have the opportunity to go on an expedition to remote western Mongolia. I will be able to immerse myself in Mongolian Kazakh nomadic culture and daily life, including going on the autumn nomadic migration and visiting three different eagle hunter families.
If you are unable to make a financial donation to either fundraiser, you could still support me and the Lewy Body Society by sharing Charles' and my story with others.
Thank you for your time and stopping to read this. Wishing you and your family and friends peace, health, and happiness.
Kerry
*I will write a blog to keep everyone updated. Please pop back!
Organizer
Kerry Hine
Organizer
England
The Lewy Body Society
Beneficiary