Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

wynken, if you go to your local council you can get a sticker for your mums fron door saying "no cold callers", it does put a lot of them off

There's one up there SSD, we've got one too, people ignore them. Neighbour didn't say she'd had them at her door too do my brother and I think she sent off for them to come from a leaflet or an ad in the paper.

She did say to me recently that there isn't enough info around about solar panels. Brother rang her and she said I'd rang her and been short (ran out of things to say when she said no they hadn't been . She told him no one had been. Oh well.

I've got one too, they still come to my door too.

I went out to my mums once, she was in hospital but forgot to take anything with her...so I went out to get her things. I found a big box of Victoria Principle anti ageing products my mum had ordered from QVC. She couldnt remember anything about it, lost the receipt. Getting it sent back was murder. Another time a lovely man came to hers and almost sold her a brand new stairlift. I was shouting down the phone DONT SIGN ANYTHING when I realised what was going on. She told me later he heard me shouting on the phone.!

People are desperate to rip off older people, its immoral.

BTW she didnt have dementia, she was just old

you know, at the end of the day we just need to keep fighting for our mums and dads, no one else bothers and they just get passed along

so very very hard I know

Thanks SSD. We're lucky with the neighbours, they let us know if someone comes. Really ironic, not that long ago she wouldn't open the door to anyone.

Try contacting trading standards. Our local dept has a vulnerable persons dept and are excellent with these cases and getting money back

Thanks Fridayfreedom. She does have a dementia diagnosis which I'm hoping will help. It's just I don't know which company it is and if she's signed anything. I would have sworn she wouldn't but now I don't know.

The POA came through recently do I am legally obliged to protect her financial interests. Thing is although I've gone into the Bank with it I haven't received confirmation it's been done as it had to be sent away. Her building society were much better..If I ring the Bank tomorrow do you think they will talk it me and can I ask them to do something like ring me if any large cheques have been written and if any new direct debits have been set up ?

I'm tempted to say it her tomorrow someone saw a Solar Panel Company takin photos of her house and say it was a parent form DS's school or something as I don't want to grass the neighbour up. I knew the few days of calm we had last week wouldn't last.

Might be better to go in in person and take a copy of the PofA with you. Trading standards put a block on the phone for cold calls for one of my patients. There are also some devices you can plug between the socket and phone which block most of these numbers. Don't know the name as I only just learnt about them. Try google.

Thank you, will Google. I'm going to ring the lovely lady I saw when I went in with the POA the other day. I'm going to the Chelsea Flower show (massive treat for me and friend whose Mum died recently) this week and have stacks on.

No wonder my dose of blood pressure meds had to go up.

Enjoy the flower show.....

I've been here. Not workmen, as my mother was always reluctant to allow anyone into the flat, but TV, phone and mail selling. Up to 20 pieces of Junk mail a day, lots of phone calls mainly from the Philippines, a spare room full of 'stuff' still in boxes. So more advice if it is OK. (I realise I can sound bossy.)

1. Get a mail redirect form and get your mum to sign. (Probably quicker) Or use the POA section. Door to door salemen need to write offering a cooling off period. These people are leeches and sell details on. If your mum is financially vulnerable it can escalate fast and causes huge anxiety.
2. Sign her up for the telephone preference service and the mail equivalent. It wont do much for things she has asked for, eg by not ticking the box saying details should not be sold on, nor for things origionating from overseas but it is a start.
3. Speak to the local Citizens Advice /Consumer Protection people. They were very good at helping me draft a letter to the people who sell satellite 'protection'.

Control of finance has been the biggest area of conflict between me and my mum. DB contacted me again last night saying she was complaining she did not have any money. (Not true. She puts it in a safe place and then cant find it. Plus there is more locked up with her pills that she resents having to ask for.)

This is the one area where I have really put my foot down. It is complicated and time consuming, as you are discovering, to unravel poor decisions made by a financially vulnerable person. The satellite protection was multi year and would have bled her dry. She must have spent £000's on Vital Nature pills. Given the level of conflict I have been very careful to check with ebery professional we come across and they all confirm I am taking the right approach. She has lost the capacity to look after her financial affairs even if she does not recognise this. As POA I have an obligation to protect her.

Not much fun. This role reversal thing is horrid. And I do wish DB would engage brain. He feels he is protecting her by listening and passing on her complaints. I realise she is upset but dont have much option. He would certainly complain if I allowed her to be fleeced by faudsters.

Wynken, hope you are having a lovely day out at the flower show.

Needmoresleep, would you like to bash your brothers head against my brothers? The stress relief for us would make more contribution than they've managed.

Todays thing is that mum, having always slept fine, is now waking dad up in the night - but is sleeping anywhere in the day and unrousable. And isn't eating - everything 'tastes horrible' or 'my mouth doesn't like it' and the food just gets flicked. He's at the end of his tether as he takes all the things she says personally. I've told him to phone the GP and get an appointment to talk about it all. Hopefully he has, but will check in later.

A big up to Waitrose though - he's been staggering round with his walker, and the nice lady on the welcome desk called him over last week and suggested someone could wheel him round in a chair with attached trolley, get all the things he needed down, bag it up and put him and shopping in the car. And he's accepted that help and has been doing so since.

Just popping in to say hello. Sympathise with the selling to old people stories.

Dad has just started answering the phone again after his stroke & Mum says it is a nightmare. He has now a small repertoire of phrases: "yes, indeed", "lovely", "of course", "I think so" etc. None of them mean very much and he can't string a sentence together, but at the end of the phone with a salesman, he sounds functional. They've already had an issue where British Gas phoned to change their tariff & he somehow agreed to a worse deal then they currently have. Mum has taken to sprinting like a 78 year old whippet to try and get to the phone before him, as she is terrified of what he is saying "yes, indeed" too. As soon as he has puts the phone down he has no idea who he has spoken to or what he or they said.

We are going to ask BT to make them ex-directory. Does anyone know about how you get yourself on some kind of non-telephone marketing phone list? I'm sure I've heard about this, but can't remember what it is called or how you do it.

Its the Telephone Preference Service.

Would a cordless phone help your mum? Then she could just carry the handset around with her in the house so she wouldn't have to run, and he couldn't access it

Thank you CMOT - will be looking at that preference service.

Cordless is a possibility. I'll run that by Mum too.

Thank you, that is hugely helpful. I'm not with it, Flower show's tomorrow. Today I am doing a good impression of a headless chicken. Called Mum and said someone at school had seen solar panel company outside her house taking photos. She claims she knows nothing about it. Called neighbour who said there is a small chance it was next door the other way but she had seen him walk down the side of Mum's car, had parked outside her house (door number very visible to road). Other neighbour's drive is not next to Mum's if that makes sense. Wherever he was he for about an hour then came out and looked like taking photos of Mum's house though apparently is conceivable it was the other neighbour's . Neighbour who alerted me is going check if they did go to other neighbour and let me know later.

Brother convinced it was the other neighbour as said we both spoke to her and she's adamant she knows nothing about it. Wish I could share his confidence but experience has taught me to be sceptical. It's the fact she said there isn't much info on solar panels available a few weeks ago which worries me. Rang bank and they want me to sign to say she isn't mentally capable once they heard diagnosis of Dementia. No way will be brother go for that yet though if it transpires solar panel guy wasn't at neighbour then he'll have to rethink. On plus side POA now set up and bank card on its way. Mum now thinks the Carers are telling people she is on her own so they know where to call. Wants to change care agency to one people say are good. That is the one where she sent the co-ordinator out nearly in tears last summer and rang to complain about toe nail lady. I suggested she speaks to SW if she wants to swap.

Then Dad rang to say he's broken his little finger, has an increasingly dodgy hip and my Aunt is in hospital with breathing difficulties . Maybe the brothers could have their own thread to complain about annoying sisters ?!

Sorry I have splurged again and thank you all for listening.

What is it with these brothers. Mine appears to be in a state of denial, actually not too hard if you simply allow her intelligent sounding conversation to float over you. But she has no short term memory, forgets things she was told 10 minutes before, and loses any or everything. Dementia is a disability, but a weird one because the person only has limited awareness of what is happening.

WBN - I lost it as well when I reached the reference to the toe-nail lady. There are so many strands in taking charge of someone else's affairs, but I had not thought of feet. However I have the optician coming in tomorrow.

The Waitrose service sounds great. Customer services at my mums Tescos keep a list of people who might get lost or confused with their names and addresses. One other tip I was given if you have one near you, and your DP can still use an oven or microwave is Cook. www.cookfood.net/order/ The person who told me said she found it a good way to get her 90 year old mum to eat a wholesome meal every day, without using the stove top. Not cheap but probably cheaper than buying individual ingredients for one.

The firms that prey on the elderly are quite shocking. These include some charities who must target older people and send them all sorts of stickers, pens and cards in the hope of obtaining donations. We did a bit of research and discovered several of the companies offering TV, domestic appliance or satellite "protection", different from "insurance" as you don't get FSA regulation, were actually the same company. I got another to admit they had bought my mums name from a third party - presumably a specialist list of vulnerable people who can be conned.

I drafted a pretty fierce letter listing the avenues of complaint I intended to pursue. I did not get much money back, but all decided not to enforce the full three year agreements. PM if you want a copy.

My attitude on finance/administration has been that I either do all or nothing. I don't think you can really just "help". Not if someone is vulnerable, and wont admit or remember what they have done. (I recognise the odd clues which indicate something is wrong, plus the unwillingness to admit that you have been pressured into buying something. It is difficult for someone who was previously competent to admit they have been taken for a ride. In your place I might see if I could find any correspondence.)

You don't also have the time to sort out any mess post-facto. My mum had scribbled all sorts of sad notes "I must look at this when I am feeling less confused" or "I gave them my bank details, I hope they are not conmen". She must have been very stressed.

I would tell the Social Worker about your concerns and ask if she feels that your mother is capable of managing her financial affairs. If she says you should be taking over, for her protection, then tell your brother and the bank.

Ok, well there is a good conclusion to this saga, Solar Guy was visiting her neighbour on the other side Sorry about all the drama. My brother said it would be, hate it when he's right. I'm taking bets on whether he will come back to UK for Mum's birthday in the Autumn, we haven't seen him since Spring 2009, though speak all the time.

Similar thing going on with Mum's taste. I organise Cook to deliver, though she's complaining about that. I do need to sort the finances. The POA has only been through this month so I'm in the process of sorting. After half term I'm going to go round and try to commandeer her paperwork, can't face it yet.

That is impressive of Waitrose, makes me want to go to my local one more often. I am so relieved Solar panel drama over I can't put it into words.

Another one with a brother in denial too!!!! He is good at doing the physical stuff, so will happily mow the lawn, fix things & move furniture around but just will not accept how precarious the situation for our parents is or think long term.

He always sides with my very stubborn mother, who is insistent that they stay in their crumbling, isolated, perishingly cold farmhouse. My mum thinks the sun shines out of his nether regions, so it is very difficult to get her to agree to anything that he doesn't agree to.

He also had the nerve to tell me that Dad's deterioration was much harder on him, because Dad was his role model. Given how unbelievably rude he has spent most of his adult life being to my father, I was tempted to rip his head off - but somewhat wearily suggested he should live up to his role model and go and mow more grass instead!!!!

Needsmore, I do most of the financial admin for my parents now. My Mum is still all there mentally, but just can't cope with it all. I've set up a filing system (threw away nearly 20 years of useless paperwork) and I know what needs keeping tabs on. Every weekend, I go through the mountain of unopened post that is spread all over the kitchen table and throw 80% of it away (they must be on every catalogue mailing list in England) and deal with the rest.

It's such a relief to hear all this and be able to rant and vent.

And all advice gratefully received, no one should ever be worried about being boss.

Am about to do the telephone reference for us, let alone ma. We did have it but it appears to have lapsed. And of course it doesn't cover abroad.

It's grim, isn't it.

What we did, because ma refuses to trust us, is employ someone for 4 hours a week to help her do her bank accounts, pay bills etc. It worked for a year and still helps a lot as this person works out things and ma feels more in control, though we also have a poa.

Hello all, just a quick up date ...Dad has been on his tablets about 10 days now and mum has noticed a BIG improvement in his sleep.

He has them at night and they must send him off into a wonderful land of nod ...which in turn has made him less tired during the day ?...or the "false chemicals "are doing something?

Interesting small artical in a paper the other day about sleep and Alzheimer's (oh crikey I can spell it now without having to look it up !! ) and our hospital asked mum to fill out a questionaire about dad's sleep patterns over the past 40 years ...they are doing research into it .

Mum is still low ...even though she can see an improvement she is a very negative person (sorry mum but it is the truth !) and is just wallowing for want of a better word at how it will be "at the end ..when he is really bad" (her quote not mine !)

I am going to try and organise some councelling for her but I am worried the support groups might have a more negative impact on her at the moment ?

DS1 is now talking to me again after my complete cock up of taking him to a party last Saturday. I t his birthday next week so I am off soon to book him some lanes at the bowling place to make up for it ....guilt is very expensive.

Ironic isn't it ...I "forgot "the time of the party due to dealing with dad's Alzheimer's diagnosis's !

Bizzey, the better sleep sounds great.

MrsFrederick, how did you find your mums helper? That sounds like a great solution

Well, at last, mum is going to the memory clinic for some help. Or rather, hopefully some help for dad. The GP they saw yesterday was very kind

Bless him, they both had their retinal photos done today, and you can't park at the optician. So he parked as near as possible, put her in her wheelchair, got his three wheel walker out, and pushed both along. The opticians were lovely and plyed them with tea while there and diverted mum from requesting new glasses 'because her eyes didn't work'.

bizzey, you may have said, but which meds is your Dad taking?

Mum is having terrible trouble with Dad waking at night. He is taking Aricept (or the generic equivalent of it) in the morning at the moment.

From Wikipedia

"Sleep spindle activity is associated with the integration of new memories and existing knowledge."

It seems to be a brain activity that happens during some sleep cycles, and there was some stuff recently about how the absence of such spindles might be linked to the onset of dementia. Obviously in my advanced state of dementia hypochondria this has me worrying about getting enough sleep. Nothing more certain to bring on insomnia.

Actually a new theory. We lose sleep worrying about our parents, we get dementia through lack of sleep. Then our children lose sleep worrying about us. So a pattern emerges.

Needmore - step away from wikipedia! . Your post make me chuckle though, because it evokes how bonkers trying to care for a parent or parents with dementia really is.