Those First Important Steps
My father died of cancer 16 years ago, leaving my mother with chronic depression and a diagnosis of vascular dementia, clearly needing additional support.
My older brother walked away, and I found myself in the position of primary carer, PoA and chief punchbag.
It wasn’t a role I had planned for, and I wasn’t prepared. It wasn’t like any other caring role – years of facing into the anger and isolation my mother was feeling, whilst trying to negotiate the disjointed social services, and health services, took its toll…my mother refused to acknowledge her diagnosis, which meant I couldn’t get easy access to services and I continue to have ‘side bar’ conversations…trying to negotiate and make judgements on her behalf.
I had a demanding job, a husband, a son and friends….they were not getting the time or patience they deserved….and dementia became the biggest thing in my life… I felt trapped, resentful, guilty…..with bouts of frustration and sadness…15 years of dementia…and still counting…
I got to breaking point and decided to make some changes in my life. I formed a small local community organisation called Carron Kith and was delighted to receive some funding from a local windfarm project – Todhill. This gave me the confidence to apply for additional funding from Life Changes Trust Peer Support Grant, which I was delighted to receive.
My husband didn’t understand why I would commit to something new when I was already overloaded, but it helped me to feel valued. I built a website (www.carronkith.org.uk) and create newsletters and online sessions for carers, which has been a hugely positive experience and required new skills!
Why I joined tide
Joining tide taught me that my experience is valuable and I can use my skills to make a difference.
I was glad I found tide – you are not treated as ‘a carer’ – you have skills and experience beyond your role as a carer. The Carer Involvement Leads understand the impact that dementia has on family life and the importance of having a strong network in place – to help with those first important steps!
Tide will invest in you as a carer, giving you access to a network of members who are always willing to share their experiences and give advice and support that will help get you started on your own journey.
"It wasn’t a role I had planned for, and I wasn’t prepared. It wasn’t like any other caring role"