To be so annoyed by 'helpful' dementia articles (long)

[adaughter0]

My mum has had dementia for the past three years. I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the anger and resentment that arises when your siblings choose to become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got kids and you haven’t, and therefore you clearly have nothing better to do.

They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home.

They don’t tell you about any of these things.

YANBU. I am a social worker for older adults, the majority of my work is with people who have dementia. I have also watched a much loved family member become as shell of himself due to dementia and eventually die and I know it hurts.

In addition to your very good points, the trouble with some information is that a lot of it is outdated. We no longer suggest that people are in stages but now recognise that people are individuals and don't necessarily follow a set path. It makes me so sad when carers/families ask what they can expect and I have to tell them I don't know. I try to be as honest as possible. Families and carers do such a difficult job, I cannot emphasize enough how much services need to support the carers as well as the individual in question.

and for you, OP. I hear you, loud and clear.

Larahusky - you aren't alone. I wonder a lot what the next terrible thing will be - when mum stopped reading (she used to have 4 books on the go, owns several thousand), when she couldn't name my son, when she told the Dr she didn't know her own surname (or mine), when she stopped wanting to talk to me, when she started to not use dads name all the time, when she started spitting - and you wonder what will be next. Fortunatly, mum has no insight at all, she'd hate herself.
I can only hope for a dignified end to it all.

Thank you OP for your post. I am dealing with this too although not quite at the stage you are at. We are five years into a diagnosis of vascular dementia and everything that has been written has rung true.

No-one really talks about it. What is there to say? I have found myself very much alone in dealing with this - and I know there is worse to come.

I have searched MN before for advice and support and found a few threads in the Health section but this is by far the one that has made me feel that I am not alone and should not be embarrassed about my mother, (when her behaviour is unreasonable) or ashamed of myself for not handling it well.

Hug to all of you living with this

Someone else dealing with this horrible disease here. Four years day in, day out caring for my Mum who is as vulnerable as a toddler. There is no let up just constant worry and guilt.

I am lucky in that she is compliant and never aggressive and I have been able to keep her in her own home with a lot of support but things are beginning to deteriorate and I am terrified of the next steps and whether there really is good care out there.

It's the having to remember every little thing for another person that drains me from washing and cutting toe nails to ordering medication, arranging flu jab.... Exhausting with no hope of improvement or let up. It is so helpful to realise there are others who know how it really is. Thank you.

Oh adaugher and everyone else on this thread. It's so hard. I wish there was something useful I could say/do.

My grandma died 6 years ago having been diagnosed with dementia about 5 years before that. She went downhill very quickly and it was frightening and upsetting to see. She lived in a home for her final 4 or so years and by the end she couldn't speak and didn't know anyone. Luckily she wasn't ever violent but it was very hard to see her decline, especially when she did seem to know what was happening and would become very upset, particularly on her daughters (my mum and her sister). When she died I was sad but I couldn't wish she was still alive.

I know a lot if people here have commented that they wouldn't want to live like that. And I wouldn't either. But I found it a very unhelpful when people said that to me while she was alive: "oh I'd rather be dead". So, what, we should kill her? I just didn't know what I was supposed to do with other people's anxiety and horror that they might end up like my grandma.

I do worry that my mum will end up the same way. And probably me too.

My DF has dementia and my DM is having to cope with it. Luckily, he is still compliant but he has so many other health issues, that he's in and out of hospital once or twice a year. Every time that happens, his dementia gets a bit worse, and his recovery even slower.

I cannot believe that 6 years ago, DF was running a company. Now all he waits for is his paper, the post, and the afternoon tv. There is no - literally - NO help for DM other than what my DBro and I offer, and a couple of days a week paid for help for my DM. (If she keels over, then we're really in the sh*te.)

It is shocking how little is spoken of the condition, and how really dreadful the effects are on the carers and families.

Just in case some are unaware, there is an Elderly Parents board in 'Other Stuff' where people support each other with dementia and other problems.

YANBU, it's shite

I'm really sorry to read you're only in your thirties too. Another thing that pisses me off is people telling me they know how hard it is because their grandparent has it. Whilst losing a grandparent to dementia is awful (been there too) it doesn't compare to dealing with a parent while you're only in your thirties.

Oh, adaughter0 No, YANBU.

On a practical note - They don’t tell you what sort of nappies to buy - using Tena pants Maxi gives a lot of absorbency, but as the name suggests, it's more like pulling up an ordinary pair of pants, rather than having a nappy.

www.ageukincontinence.co.uk/shop-by-brand/tena-brands-tena-menu.html?

YANBU but you are being very eloquent. I hear you and my thoughts are with you.

I don't know if it's because it is so intractable an illness that it's difficult to say anything constructive about it (because there isn't anything constructive to be said) but that the next best thing - being truthful about the horror of it - is too awful for many people to contemplate and therefore it's best glossed over (in the minds of the journalist/publisher anyway).

My heart goes out to you and your mum. That you feel so much for her and have so much heartbreak for her now says a lot about you and her.

This article adaughter0 was a most eloquent article that should be published nationally.

I do not think that many people actually realise out there that dementia can also occur far earlier in life; I remember all too well watching Louie Theroux's programme about the life of some dementia patients in Phoenix and that featured a woman in her late 30s who was diagnosed with early onset dementia. Her repeated failed attempts to use a mobile phone and draw a clock face were heartbreaking to see.

I was wondering what you and others on here made of Sir Ian Botham's recent comments re his father and his decision to no longer visit his dad. I would not have condemned his decision to no longer do that personally speaking.

TBH if the hospital in the near future eventually determine that my FIL has a form of dementia I will not be at all surprised.

I've been petrified of getting dementia as long as I remember.

One of the few memories I have of my great-aunt (my nan's sister) is of her asking where my father was, a wee while after he'd died. I was six at the time. Think that was the first time I was really aware of what dementia was.

She lived with it for a few years after that, and then, not many years later, my nan developed it, and now my uncle has it. So it's been around for a lot of my life. I'm worried about my mother developing it, and even more stressed about myself going down with it, as there'll be no-one to look after me.

Even now, I've started mis-substituting words and I fear this is the very beginning. And I'm only in my thirties. It's probably an over-reaction, and I'm taking the fact that I know I'm doing it as a good thing, but there's still the fact that, for whatever reason, I'll say one thing when I mean another, and it's started happening more frequently.

Am definitely going to Switzerland if the worst happens.

Cricketpitch I dont think there is a good way to handle. I think there's just a range of bad and slightly less bad ways.
rabbits I know exactly what you mean. My brain loses words and the naggong worry cones up. Im on high alert watching for symptoms in my mum. I honestly believe it's normal but for those of us who fear ad, we notice it more. I'm sure yhe same is true of other diseases and 'minor' symptoms