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Linda's blog - turning the tide


How are you?

We ask the question, but do we really want to know the answer.

I’m as guilty as anyone, moving on before there is chance of an extended reply, we are only really being polite and have enough problems of our own to add some one else’s too.

Okay, we say, and apparently nowadays it is ‘Okay to not be okay’ but who really notices or cares?

I sometimes know I ignore how I really feel, just get on with it, push through and with any luck it won’t be as bad as it feels. Usually it’s a tactic that works, and my head always bobs up above the water again even when I think I’ll drown.

Talking to other people in your situation is the best way to not feel alone. Living with dementia can be a lonely place whether you have the disease or not.

It was our regular monthly zoom meeting last night with ‘tide’ the charity that supports Carer’s, who support loved ones with dementia, the focus being for once me, not Ken.

It’s a small charity that has to fight for funding with the ‘Dementia Giants’ and despite its efforts you may not have heard of it.

As members of tide, we all have the same issues, circumstances may be different but the core situation is replicated, everyone is welcome.

I’ve learnt a such lot I didn’t know simply by listening to the stories of others.

I’m involved with a zoom group specifically for those affected by YOD. As I’ve made clear many times the problems and issues are very different from elders.

Our focus and understanding has important factors rarely considered by dementia charities and public in general, who tend to expect older people to be affected.

The monthly meeting is an opportunity to say ‘I’m not okay’ and to be supported by peers who DO want to listen and often contribute their expertise and experiences making problems appear shared and smaller. I’ve had help on all kinds of issues from Ken’s separation anxiety to support with the minefield of benefits I wasn’t even aware of. Advice where I should go to get help.

I know I can ask anything, and regularly do.

It’s not all doom and gloom though. I’m often inspired by others. Positive things, funny things, tips that work well. In this world there is a mutual understanding that doesn’t need to be explained, we have a strong connection.

It has taken some time, but I have slowly built a network of familiar faces that I’d like to call friends.

We may be at different stages of our dementia journey, but we all want to pass on the knowledge we have, to make the path for those who follow less arduous.

From diagnosis to death everyone has a contribution. Not many places would you find such an extensive knowledge of hands on information about the reality of dementia 24/7.

These virtual zoom meetings with acquaintances from all over the UK have become an important date, the first Tuesday each month. Here honesty and frustration can be shared, but also the inspiring acts of dementia friendly kindness. (Well done to ParkRun in Rutland. We heard all about you last night!).

I’m lucky and also have special some local carer friends I can chat with. But I know from our zoom meetings not everyone is as fortunate as me. Some people are very isolated.

It is very interesting, discussing the regional discrepancy and post code lottery of available dementia services throughout the UK. All or nothing it seems, why best practices can’t be universally adopted is galling.

I probably wouldn’t share some of the difficult things I feel with family. Though you will usually get the tone of my thoughts in my blog. Getting things off one’s chest in a safe secure environment is important to everyone, especially when there are so many responsibilities and a life partner that can no longer contribute.

Thank you tide for being there, facilitating and coordinating, so that Carer’s like me have somewhere to go to care and share. You help us all give our loved ones the best of who we can be.

Funding, financing, often detracts from the work that charities want to do. But money makes things possible.

It’s not an easy task passionately fighting the Carer’s corner and shouting out so we aren’t forgotten. Explaining to others that Carer’s are an important part of the picture and need supporting in their own right.

Most Carer’s are just to busy caring to involve themselves in politics and policies, perhaps that’s why we need a voice like tide, working in the best interests of us who juggle the balls.

Put simply tide brings us together.

You can read more of Linda Barnes blog here.

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