My mother was diagnosed with vascular dementia in 2010. This is a blog about coming to terms with her absent mind.

Tuesday 18 October 2011

On being a full-time carer

No one will be surprised at me saying that being a full-time carer is demanding. Of course it is. Looking after someone else's welfare 24 hours a day, 7 days a week is incredibly hard work. Ask any parent.

Caring for an adult who is no longer able to make informed decisions or keep themselves safe is doubly difficult because they believe that they can still make those decisions and do not take kindly to being guided, helped or often prevented from doing so. Do not become a carer for someone with dementia if you can't take the insults, rage, dislike, hate, physical violence and selfishness along with the smiles and the fun times. Also remember that you will have to help with personal hygiene at every level from nose blowing to bottom wiping. And do all this on continual broken sleep. Even babies sleep for a decent length of time eventually.

I've just spent a couple of hours being told I'm nasty, uncaring and selfish. Had to endure rage, tears, sobbing, blame and dismissal. Babies believe the world revolves around them, trust me they have nothing on a dementia sufferer. I've been awake since 3am due to her sitting in the hall in her coat, constantly trying to telephone her friend Mavis. The phone will be unplugged tonight. It won't stop her doing it, but at least she won't set off the pager every ten minutes.

Everyone tells you it isn't personal, it isn't the person you know or knew, it is the disease. And I'm sure this is quite true. But let me tell you that it is bloody impossible not to take things personally and to be hurt and overwhelmingly upset at times. I'm only human.

I've written this at a moment of extreme distress and will probably be overcome with remorse in a while and delete it. Writing it down with force and speed helps (although the keyboard may not agree) and I shall now go and make a cup of tea.

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I've had a lot of messages of support from people, thank you so much. I've been asked by quite a few not to delete this post, so I won't. The silly thing is, I had an absolutely lovely email yesterday from an old friend saying how much they enjoy reading the blog etc. and now I feel as though I've let everyone down.

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What's up Mum?

I'm scared

Why are you scared?

I'm scared about what will happen when you leave.

I'm not leaving, don't worry.

Ok I won't then. When is Peter coming?

On Friday.

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What time are you going?

I'm not going anywhere.

What time is Peter getting here?

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Will you drop me off on the way?

I'm not going anywhere.

Oh. I thought you were. Has Peter gone out?

He's not here until Friday...

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8 comments:

  1. Do leave this posting online Bee - you're expressing fluently and with passion the feelings and thoughts of thousands of other carers. It may help someone else experiencing exactly the same hurt, anger and frustration as you to feel not quite so alone when they read it.

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  2. Dear Bee - I really do feel for you, I think you are doing an absolutely thankless task without any support

    Don't delete your post - its how you felt when you wrote it

    Here's to a better night tonight

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  3. No, please don't delete it Bee, it's all part of the caring experience. I personally couldn't do it, but I find your blog very, very interesting. And sad, for both of you. Hoping for a better night.

    A

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  4. Aw, so sorry to hear that you've had a bad day, Bee. :( I can understand how hard it is for you. I mean, Grandma is nowhere near as bad as your mum, but her personality is changing and her behaviour is becoming erratic and it is hard to take things that are said and things that are done on the chin.

    I also agree you should keep this post up. There's absolutely nothing wrong with venting your feelings and getting it off your chest. :)

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  5. Bee, are you listening? You are absolutely not, repeat NOT letting anyone down. As the last person to post said, it is all part of the caring experience, which at times can be soul-destroying. In bringing humour to your posts (fabulously well-written, I might add) you are making Alzheimers more palatable, more readable, ergo bringing it to more people’s attention. This is extremely important. The humour is part of it. And those who are carers are glad of the relief that you bring. They smile and laugh along with you. The rage and anger, of the care and sufferer, is also, sadly, part of it. Carers do not often have a voice. You are giving them one. Be proud. Never, ever be disappointed in yourself – even if you end up screaming blue murder. It is allowed!

    OK, that's my rant over :) Stiff drink, hon. Hope you are able to get some much needed sleep tonight. xx

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  6. Please don't delete Bee, its a great post that lots of other carers will benefit from. Mums just been diagnosed with terminal lung cancer so I'm caring for her full time now, I read your blog daily as its reassuring to know I'm not alone. Keep doing what you're doing Bee you're doing a great job, with your Mum and your blog!

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  7. What Sheryl said......

    DON'T YOU DARE DELETE IT!!

    XXX

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  8. Thank you for sharing this, it gives me an insight into what my Dad went through xx Over from #BlogMissionImpossible

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