A Tale of Two Journeys - Send Kerry to Mongolia
Donation protected
Hello, my name is Kerry Hine,
Thank you for taking the time to read my story.
What are the funds for?
I'm raising funds for a healing journey for myself to help me recover from caring for my beautiful late husband, Charles, full time for three and a half years, beginning during the Covid-19 pandemic. Charles was diagnosed with Lewy body dementia in 2020, during the pandemic. 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. At least 10-15% of all people who live with dementia have Lewy body dementia. Lewy body dementia is a complex and frequently misdiagnosed disease that affects memory, thinking, movement, sleep and behaviour. Most people have never heard of 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
- 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 of caring on my 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. Now I am neither.
He became my little boy, and by the end, he was my baby.
I need to recover, work out who I am now, and rebuild my life.
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.
Why is this journey important?
- Charles and I really enjoyed watching BBC Human Planet in 2011, especially episode 5 Mountains - Life In Thin Air. I longed to go to see the eagle hunters and nomads. The expedition is led by Timothy Allen, the photographer & filmmaker for BBC Human Planet, with the original support crew. Charles and I had also enjoyed the photographer's work in Travel Photographer of the Year exhibitions in London.
- Feeling trapped at home during the pandemic and feeling trapped due to caring for Charles 24/7 renewed my dream of visiting Mongolia. Later, the last 10 weeks of Charles's life (5 weeks in hospital with Charles, sleeping next to him on a camp bed, and 5 weeks in the nursing home) only intensified my longing to escape to a place of complete freedom.
- Being completely away from Western civilisation in remote Mongolia, experiencing a completely different way of life, will help give me a new perspective on life.
- Travel boosts cognitive functioning by building new connections between neurons. My own cognitive functioning has been depleted through sleep deprivation; lack of socialising due to pandemic shielding and caring; grief.
- It will be an opportunity to re-assess what is important in life, my values and goals. Hopefully it will be a journey of self-discovery, helping me to process my thoughts about my own identity, helping me to find a new purpose in life.
How will the funds be used?
I’ll transfer funds to my personal bank account and they’ll be used straightaway to pay for:
- expedition fees via Goyo Travel US$ 7295-00 (£5,850 in GBP) (I have already paid £1,462.50 of this, which was the 25% deposit)
- international flight £83.08 (London to Frankfurt)
- international flight €794.63 (Frankfurt to Ulaanbaatar & Ulaanbaatar to Frankfurt) (£701.93 in GBP)
- international flight €166.57 (Frankfurt to London) (£147.14 in GBP)
- insurance £267.31 (NIB Travel - 'normal holiday insurance') & £264.64 (Hotspot Cover - as visiting two restricted access areas requiring permission from Mongolian military & due to remote location)
- Rabies vaccination £74 x 3 = £232
- Hepatitis B vaccination £52 x 3 = £156
- Tick Borne encephalitis vaccination £65 x 3 = £195
- visa fees (tbc)
- hotel room for extra days either side of the expedition (tbc)
The running total so far is £7,897.10 (of which I have already paid £3,509.60 which includes the 25% deposit, the international flights, the insurance & vaccinations).
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 the recovery journey for me
Prefer not to donate to an individual?
Consider Journey 1 on GoFundMe to raise funds for the Lewy Body Society. There are only two Consultant Admiral Nurses for Lewy Body Dementia for the whole of the UK. One of these is Rachel Thompson, who was the first Consultant Admiral Nurse for Lewy Body Dementia.
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's post is funded by the Lewy Body Society .
If you are unable to make a financial donation, you could still support me by sharing 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 be writing a blog to update anyone who is interested. Why not pop back?
Organizer
Kerry Hine
Organizer
England