One of the many things that I have realised in retrospect is that I don't - and should never have - give a damn about my mum's neighbours - all of whom have moved now anyway. Unless your loved one is actually threatening people - or being really offensive - or appearing naked - then damn the neighbours, people opposite/round the corner/at the shop. Who cares? they're no-one to you, are they? So, who do you really care about? No-one, I’m told is ever ‘demented’, only ever dementing, so the original person is in there somewhere. So the only person to care about is your loved one. Not Soc Services or the council or even the police. They're nobody to you.
Yes, a lot of behaviours can be ‘annoying’ and time consuming, but hey, does that person really deserve to be put away for life for being annoying or needy? I know it’s an individual thing – how bad is it and how much do want to take, but I wish that I hadn’t listened to third parties telling me that I had done enough, going there every day, washing and cleaning, shopping etc. I was worn out, but the alternative has proved much worse for me. I’d give anything to be stopping on my way home from work to mop up today’s spills, clean mum and persuade her into pyjamas so that I could put today’s dirty clothes in the wash. Missing every weekend in my real life, going to hospital a dozen times a year etc – I’d do it gladly now if I had the chance.
Until there is a cure for this range of ailments, which we presently lump under ‘dementia’, we have to accept that it is a ‘rest of life’ problem for sufferers. Dementing people tend not to live that long once ill, so it is unlikely to be rest of life for carers.
I do wonder why so much dope is prescribed – particularly ‘depression’ meds. Certainly vascular dementia is a physical thing – not psychological, so what use is it to block serotonin? It does stop thinking and reduce cognitive abilities, but is that what we want for our loved ones? SSRi’s don’t just block ‘bad’ thoughts, paranoia or persecution, but all thoughts are dulled. All, including recall – specifically short term recall, so why is it that they are prescribed to treat a condition that includes problems with short term memory? As friend, whose mum is also a sufferer put it to me ‘I’d rather have her mad than a zombie’. Other dementia meds are known to cause loss of balance, incontinence, speech problems, hallucinations – and to induce paranoia – even psychosis. Really want to add those nightmares to someone already in distress?
How weird is your loved one? In comparison with their old self, maybe pretty weird – but lots of people behave strangely and no-one feels that everything has to be treated. If the behaviour isn’t dangerous then so what? Who would want to be so stoned that they couldn't be bad, even if they wanted to?
I do have a massive guilt about the things that have happened to my mum, in truth, she was as happy as she could be, in her own home, with the things that she had worked to buy, in her own company. As she put it to me recently ‘how long could you stay in here, (the CH), surrounded by sick people, unable to go outside when you want, to eat when you’re hungry or drink when you’re thirsty?’ “Not long” was my rather pathetic reply. ‘No one wants to be in here.’
I shouldn’t have cared that the SW said ‘when they’re this bad, they really should be on care’. Stuff that, there was a lot of ‘out of sight, out of mind’ in that statement – and also, ‘I’ve got too much on to spend any real time on individual cases’. So much that was promised never materialised – or was just pathetic (to include those 5 minute home visits, short because the home carers weren’t paid for travel time etc.). You don’t want to complain because that flashes up warning lights with the various agencies involved.
If I could go back, I wouldn’t tell anyone that mum was ill, I’d just do my best to deal with whatever came up as and when – and tell a lot of nosey-pokes to clear off. I would do more and moan less.
‘She’d be dead by now’ I’m told. Really? And? Would that be so much worse than being incarcerated for years with nothing, stoned out what’s left of your mind? I know what I would choose for myself.
That’s my point, really, what would you choose for yourself? To struggle on or be put away? Try to apply that to your loved one, if it’s still possible.
Ed
Yes, a lot of behaviours can be ‘annoying’ and time consuming, but hey, does that person really deserve to be put away for life for being annoying or needy? I know it’s an individual thing – how bad is it and how much do want to take, but I wish that I hadn’t listened to third parties telling me that I had done enough, going there every day, washing and cleaning, shopping etc. I was worn out, but the alternative has proved much worse for me. I’d give anything to be stopping on my way home from work to mop up today’s spills, clean mum and persuade her into pyjamas so that I could put today’s dirty clothes in the wash. Missing every weekend in my real life, going to hospital a dozen times a year etc – I’d do it gladly now if I had the chance.
Until there is a cure for this range of ailments, which we presently lump under ‘dementia’, we have to accept that it is a ‘rest of life’ problem for sufferers. Dementing people tend not to live that long once ill, so it is unlikely to be rest of life for carers.
I do wonder why so much dope is prescribed – particularly ‘depression’ meds. Certainly vascular dementia is a physical thing – not psychological, so what use is it to block serotonin? It does stop thinking and reduce cognitive abilities, but is that what we want for our loved ones? SSRi’s don’t just block ‘bad’ thoughts, paranoia or persecution, but all thoughts are dulled. All, including recall – specifically short term recall, so why is it that they are prescribed to treat a condition that includes problems with short term memory? As friend, whose mum is also a sufferer put it to me ‘I’d rather have her mad than a zombie’. Other dementia meds are known to cause loss of balance, incontinence, speech problems, hallucinations – and to induce paranoia – even psychosis. Really want to add those nightmares to someone already in distress?
How weird is your loved one? In comparison with their old self, maybe pretty weird – but lots of people behave strangely and no-one feels that everything has to be treated. If the behaviour isn’t dangerous then so what? Who would want to be so stoned that they couldn't be bad, even if they wanted to?
I do have a massive guilt about the things that have happened to my mum, in truth, she was as happy as she could be, in her own home, with the things that she had worked to buy, in her own company. As she put it to me recently ‘how long could you stay in here, (the CH), surrounded by sick people, unable to go outside when you want, to eat when you’re hungry or drink when you’re thirsty?’ “Not long” was my rather pathetic reply. ‘No one wants to be in here.’
I shouldn’t have cared that the SW said ‘when they’re this bad, they really should be on care’. Stuff that, there was a lot of ‘out of sight, out of mind’ in that statement – and also, ‘I’ve got too much on to spend any real time on individual cases’. So much that was promised never materialised – or was just pathetic (to include those 5 minute home visits, short because the home carers weren’t paid for travel time etc.). You don’t want to complain because that flashes up warning lights with the various agencies involved.
If I could go back, I wouldn’t tell anyone that mum was ill, I’d just do my best to deal with whatever came up as and when – and tell a lot of nosey-pokes to clear off. I would do more and moan less.
‘She’d be dead by now’ I’m told. Really? And? Would that be so much worse than being incarcerated for years with nothing, stoned out what’s left of your mind? I know what I would choose for myself.
That’s my point, really, what would you choose for yourself? To struggle on or be put away? Try to apply that to your loved one, if it’s still possible.
Ed