A feature of caring for demented people in a family or related situation, rather than professionally, is the isolation the situation brings, not only for the demented person but for the carer.
I was reminded of this when an email to a far flung family member in this situation sparked off a bit of a moan and an apology for moaning. I don’t think you should ever have to apologise for having a moan about a difficult, unpaid job you are just getting on with. On the contrary, I think it’s a safety valve. I am certain that simply taking it all on the chin and saying nothing is the reason my entire digestive system is in revolt. Sitting implacably while the demented person raves and then saying something kind and nice goes against the whole of evolution. No wonder more loosely associated parties take to the hills at the first opportunity. Apart from the neighbour who delivers the Saturday paper, my mother has me and the carers and that’s it. My cousin, who so recently lost her husband to Parkinsonian dementia still rings but she is in the aftermath of her loss and quite properly attending to all her own shelved physical needs.
There is no doubt about dementia. Unless your dealings with it are recent and of lengthy duration, it is terrifying. People do not want to know. Their embraced ignorance extends to the carer. Unless your news is good, selective deafness will ensue. There have been websites for carers but the problem with them is they are run by carers; people who notoriously do not have time to run websites. I have experience of emails being ignored for three weeks and then answered with a stock response.
Available help for sufferers or carers of those with anti-social diseases are varied. When I had cancer thirty odd years ago there was no help offered and people crossed the street to avoid speaking to me because they didn’t know what to say. This is not the case now, thanks to publicity and education. I have been attending Al-Anon family groups for the family and friends of alcoholics for three years and so have had the opportunity to experience the help that a support group can offer. How long before there are fun runs for dementia, or support groups in a town near you?
A support group does make a difference. Just knowing you are not alone, isolated and struggling with something which is making you ill, even though it’s not you with the disease, is a help. It’s good to moan to people with the same problem and to hear their moans too and know you are not alone, that this and that is normal for this disease. It just helps to know you are doing all you can.
So if you are a carer and want to email me with a moan please do so. I cannot guarantee a reply but I will try and I will definitely read every whinge with absolute sympathy. Hell is other people, it really is. When the tortured soul lashes out from the destroyed brain and you are in the way it most certainly hurts. A lot. It does not matter how the destroyed brain got that way, whether from substance abuse, inactivity, an accident or any other reason, once a brain is seriously damaged it has the ability to damage many others around it and that deserves compassion and admiration for the bravery of those who stay to help.
If you are one of those who chose to live with this hell to grow your soul, good on you. Write if it gets too much and we’ll swap notes.
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