Home > Living with Lewy > Heather’s Story
My partner Chris was diagnosed with early-onset Lewy body dementia at the age of 60.
Chris is a very active campaigner, gives lots of talks and is an ambassador for several charities, including The Lewy Body Society. I want to support her to do these things and live her life as she wants to, but the support she requires has significantly increased since the pandemic.
Chris has gone from being a person being able to travel to meetings on her own and giving talks, to now needing much more support to do this. She needs someone to accompany her and needs reassurance.
Chris was classed as clinically vulnerable and wasn’t allowed to leave the house for significant periods of time, not even to have a walk. Due to this her mood and symptoms have declined, and she has lost confidence. This directly impacts on the time I have to look after my own well-being.
Covid meant the pharmacy no longer put her medication into dosette boxes. This meant I had to purchase our own boxes and still have to take on the extra responsibility for sorting out all the medication into correct time zones. She is on about 30 different tablets per day and I have to prompt her to take the tablets.
I get less of a break as I am far more worried about leaving Chris for longer periods now. Not only does she forget to take medication, but she struggles to prepare food and eat meals without reminders.
I have little to no confidence in getting the support we will need in the future from official sources and expect to be heavily reliant on support from charities supporting those living with dementia and carers groups. We will probably have to use all our savings to pay for care, and I fear we will live out our last years in poverty. I don’t understand why dementia is classed as a social care problem. As a terminal, life-limiting brain illness it should come fully under health care. We urgently need the Government to do something about this.
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