Dementia Action Week 2018

It’s Dementia Action Week, something that is very important to me. My dad had the disease. He died a year ago.

The Alzheimer’s Society’s social media feeds have made for some pretty depressing reading over the last few weeks. Although I’m now slightly removed from what is going on in that world, it feels like change is still happening too slowly, if at all. The only change I see is the increased number of people with the disease – it seems to be all around me.

Forget-me-nots – the symbol of the dementia community

How many more people have to go through this before change actually happens?

The Alzheimer’s Society’s latest report talks about needless hospital admissions for dementia patients. In the last two years of his life, dad was admitted to hospital five times. Had I received some training and support, this could have been avoided. His death could have been avoided. The report made me angry and frustrated at the same time. So many of the quotes in it could have been given by me. There is so much injustice, lack of understanding and discrimination against people with the disease, and their carers.

In my version of Word, ‘carer’ is underlined in red – it’s not a recognised word. Ain’t that the truth! People who haven’t been affected by the disease really don’t have a clue about it. It is so much more than about forgetting things. Not long after I gave up my job to look after dad, someone asked me how I now enjoyed being a lady of leisure. I ignored their comment, but it has always stayed with me. Believe me, if you’re a carer of someone with dementia, it’s a 24/7 job, with a pitiful allowance that doesn’t even cover your bills. There was nothing rewarding about it. I could have told them about the disturbed nights, the constant worry, and about some of the horrible things that happened on a daily basis, but I still don’t think they would have understood.

Why is dementia treated so differently to other diseases?

The Government is fixated on making people with dementia pay for their care. If you have a disease like cancer, you get your care for free from the NHS. People with dementia are not treated like this. Dementia is a terminal brain disease. It’s not a natural part of ageing. The symptoms can mean that a person will eventually need help with everyday activities, such as washing, dressing, eating and drinking. Support for this is provided through social care, but only if you fit the criteria. The majority of people will need to self-fund their care costs. This is completely unfair. We should ALL have to pay a little bit more to support people with this disease.

Even though it’s been a year since dad died, Alzheimer’s continues to punish me. I will always have to live with the painful memories of what this cruel disease did to him. I am now struggling to find employment or at least a job that I’m willing to do, that doesn’t pay peanuts. When I do return to work, I know that I’ll be taking a big drop in salary.

It’s really important that we keep talking openly about dementia so that we remove its stigma. It’s not so long ago that cancer was only discussed in hushed terms, now you hear about it all the time. We need to do this with dementia and help those with the disease, as well as their carers, feel a little less alone and a lot less abandoned.

 

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