Alzheimer's update/problem

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Alzheimer's update/problem

Postby Pepper Pig » March 27th, 2018, 4:34 pm

OH has usually been fine when I've left him for a couple of hours but obviously things will deteriorate. Today I shot off to Hackney but when I returned I was greeted at the front door by a young man who was leaving. :o :o :o In fact it was innocent enough. A double glazing company had phoned the house (I had forgotten to put on the ansaphone) and asked if they could come and do an EnergySmart vaulation. Mr Pig had said yes and ten minutes later the rep had turned up.

Now I am not happy on so many counts, the major ones being these..

1. He has been told not to answer the phone or let anyone in. But he has
Alzheimer's so not his fault.
2. In the old days he would have sent them packing and certainly not let them in.
3. Who is to know who the hell they are?

I dialled 1471 and got the firm who were intensely apologetic and got the rep to phone me as well saying that our double glazing was indeed fine and he had indeed told Mr Pig that there was nothing needed doing. Full marks to the firm who have removed us from their list.

But of course he could have let anybody in. :shock: :shock: (And 6 months ago we got scammed for £400 for roofing repairs because he'd let someone go up there and I wasn't around).

I have ordered one of those video doorbells that work in conjunction with your iPhone, I have applied for Attendance Allowance. This is not a great path to be on.

I apologise because I know I am very, very crabby a the moment but I am inhabiting unknown territory and I don't like it one bit. Thank you to those including Pat who have sent me dementia literacy to read. You are stars. 8-) 8-)
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Re: Alzheimer's update/problem

Postby Busybee » March 27th, 2018, 4:56 pm

PP - it’s understandable that you are feeling crabby, it’s uncharted territory that doesn’t have an awful lot of hope attached. So have a few of these :hug: :hug: . Whilst I can’t help on a practical level in giving you some respite I can listen and be a safe ear when you need to vent.

I’m sure you have read loads, and whilst your OH is your focus don’t forget about you. Be kind to yourself, is there any close friend or family who can give you some regular ‘ me ‘ time?

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Re: Alzheimer's update/problem

Postby Pepper Pig » March 27th, 2018, 5:03 pm

I have the me time with the early morning swimming and dog walking because he is still in bed, but yes, I need to get all those who have offered support to commit when I want to go and do a flashy lunch. Thanks BB. :tu:
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Re: Alzheimer's update/problem

Postby Gruney » March 27th, 2018, 5:17 pm

I rarely, if ever send these, Pp - but :hug:
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Re: Alzheimer's update/problem

Postby Chinchilla_lady » March 27th, 2018, 5:23 pm

I really feel for you PP, not going to help you at all but we reached the point with Mum where even when we thought she was in bed asleep one of us had to be on duty as she would get up and start to wander, we had to resort to a lockable gate at the top of the stairs which was far from ideal but at least we could get some rest. Take up any offers of help you can get, we didnt, until we were desperate and by that point being with a new face (even one she had known before) caused so much distress it eliminated any pleasure from our being out. Is day care an option in your area?
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Re: Alzheimer's update/problem

Postby suffolk » March 27th, 2018, 5:44 pm

Difficult times :hug:

Have you been signposted to these people? https://www.harrowcarers.org/older-carers/
“One cannot think well, love well, sleep well, if one has not dined well.”
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Re: Alzheimer's update/problem

Postby Zosherooney » March 27th, 2018, 5:56 pm

You must be living a bit on a knife edge PP may I offer a virtual 'there, there' too
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Re: Alzheimer's update/problem

Postby Prettykiwicrazy » March 27th, 2018, 6:06 pm

Are there any local daycare centres or groups that your husband might attend ?

https://www.ageuk.org.uk/ . AgeUK might be able to offer some support and access to services for both of you . Look at your local surgeries websites or community centres. A lot of places offer support groups for carers.

Also the Alzheimer’s society https://www.alzheimers.org.uk/info/2004 ... yourself/2
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 27th, 2018, 6:14 pm

suffolk wrote:Difficult times :hug:

Have you been signposted to these people? https://www.harrowcarers.org/older-carers/


Not yet. I’m 64.
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Re: Alzheimer's update/problem

Postby suffolk » March 27th, 2018, 6:26 pm

Oh 'eck ... don't want to wish your life away but ... :rolleyes:

Right, the same lot of people have a Carers' Health and Wellbeing Service ... contact them https://www.harrowcarers.org/chws/

As I used to say about my families ... we have to support the carers 'cos if they can't care any more we'll have to find someone else to do it and that'll cost a lot of money ;) :hug: and it's why I insisted that my families accessed all the support they could get ... :hug:
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Re: Alzheimer's update/problem

Postby Ratatouille » March 27th, 2018, 6:30 pm

PP :hug: :hug: :hug:

I'm afraid that really sums up the support I can give you except to say please access every last bit of help you can, I seem to remember that your husband is a church goer - even if you aren't there may be support there - you can always ask.
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Re: Alzheimer's update/problem

Postby liketocook » March 27th, 2018, 6:40 pm

PP :hug: :hug:
Latterly my Mum used to switch off the phone ringer when she was going out so my Papa wouldn't answer it. She also put a note on the door reminding him not to let anyone in. It did help though appreciate it might not be an option/ suitable for you. Hopefully you can access some support.
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Re: Alzheimer's update/problem

Postby StokeySue » March 27th, 2018, 6:53 pm

PP :hug: :hug:
Think the video door bell is a great idea, be interested to know how you get on with it

Nothing really to add to what others have said
I am actually surprised he has got more open to letting people in rather than hiding from them, which has been my experience, with luck this couldbe a phase, but evryone is different
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Re: Alzheimer's update/problem

Postby StokeySue » March 27th, 2018, 6:55 pm

Canyou re-route the home phone to your mobile? I have a nasty feeling it is easier the other way, but check with your supplier?
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Re: Alzheimer's update/problem

Postby smitch » March 27th, 2018, 7:19 pm

Nothing useful to add but :hug:

My brother in law has one of the doorbells, he installed it after a nasty break-in in the run up to Christmas and after an unpleasant run in with a mystery neighbour over a parking space I’m considering it too. I would think in your situation it would give you some peace of mind. As others have said, access all the support you can, my mum cared for my grandad for a while when he had dementia and it was a very isolating experience.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 27th, 2018, 8:00 pm

Ratatouille wrote:PP :hug: :hug: :hug:

I'm afraid that really sums up the support I can give you except to say please access every last bit of help you can, I seem to remember that your husband is a church goer - even if you aren't there may be support there - you can always ask.


I wish! He is almost the youngest member of the congregation. :o

Thanks for your ideas everyone. I will process them all tomorrow. 8-)

(The doll’s house I won on eBay is great). ;)
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 27th, 2018, 8:15 pm

Gruney wrote:I rarely, if ever send these, Pp - but :hug:


Thanks Gruney. ;) 8-)
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Re: Alzheimer's update/problem

Postby miss mouse » March 27th, 2018, 8:35 pm

Pepper Pig wrote:In fact it was innocent enough. A double glazing company had phoned the house (I had forgotten to put on the ansaphone) and asked if they could come and do an EnergySmart vaulation. Mr Pig had said yes and ten minutes later the rep had turned up.


You were lucky. As I understand it, if a rep visits by appointment (eg the telephone call) there is no ten-day cooling off period if a contract is signed. Do you have POA or other legal stuff I am not familiar with in place?

Prettykiwicrazy wrote:Are there any local daycare centres or groups that your husband might attend ?


I hope so. All closed in my area thanks to 'Austerity'.
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Re: Alzheimer's update/problem

Postby Amber » March 27th, 2018, 8:44 pm

Please check your front door security...but not for the reasons you think. My mum had a habit of dead-locking and bolting the front door, and then there was no way we could get into the house, via back door/garage etc.

Take care of yourself. Like lots of others have said, make sure of ‘me’ time, and always have something, no matter how small, to look forward to.
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Re: Alzheimer's update/problem

Postby aero280 » March 27th, 2018, 9:05 pm

I've just come to this and seen that your situation has escalated.

The difficult thing is to accept that things will continue going downhill, and your independence will be severely curtailed unless you get some permanent help. When my mother started on the dementia route, my father looked after her in much the same way that you are trying to do. It's to my eternal regret that I didn't realise how bad mother had become, and how much stress my father was under. So please don't try and do too much yourself out of "duty".

Take all the advice you can. Age Concern were good for us, but it was a few years ago now. You need all the legal stuff in place. Power of Attorney. Removing your husband's name for any joint accounts etc. He must not have any signing powers, credit cards, etc. Change any direct debits and standing orders that have his name on them. It's a bit brutal, but the alternative could be costly.

This looks a good place to start, if you haven't found it already https://www.alzheimers.org.uk/info/20046/help_with_care

I'm a bit out of date with all this, but happy to pass on my experience.
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Re: Alzheimer's update/problem

Postby Herbidacious » March 27th, 2018, 9:39 pm

Oh PP. :hug: :hug:

A friend of mine is going through this with her husband too. She's about your age too. So difficult and stressful, and so many other things...
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Re: Alzheimer's update/problem

Postby StokeySue » March 28th, 2018, 12:32 am

miss mouse wrote:As I understand it, if a rep visits by appointment (eg the telephone call) there is no ten-day cooling off period if a contract is signed. Do you have POA or other legal stuff I am not familiar with in place?

Seems it's the other way round - no cooling off period if you visit them
https://www.which.co.uk/reviews/double-glazing/article/how-to-buy-double-glazing/your-rights-when-buying-double-glazing
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 28th, 2018, 4:20 am

Thanks again all. The Power of Attorney was applied for at the beginning of February so should be through any day now. He has started a course of Donepezil. Does anyone have any experience of this?
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Re: Alzheimer's update/problem

Postby miss mouse » March 28th, 2018, 5:28 am

"If you enter into a contract away from the trader's premises (unless you've already discussed the contract at your home and later agree to it). This is called an 'off-premises' contract. Under the Consumer Contracts (Information, Cancellation and Additional Charges) Regulations 2013, you have to be given a minimum of 14 days as a cooling-off period, within which time you can cancel."

This part is what I was referring to. If a dodgy sales person makes an "appointment" by telephoning or cold-calling to 'book' that appointment even if the appointment is ten minutes later it doesn't count as cold calling and the 'cooling off period' does not apply.
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Re: Alzheimer's update/problem

Postby PurpleLuv » March 28th, 2018, 7:04 am

Hi PP :hug:

It may/may not of helped following a phone call appointment but please contact your local station, they should give you something like this & (hopefully some further advice).xxx
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Re: Alzheimer's update/problem

Postby Sloe-Gin » March 28th, 2018, 7:41 am

I'm afraid there is nothing I can add either, except :hug: and wishes that I lived closer to lend you a few hours x
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Re: Alzheimer's update/problem

Postby jrc » March 28th, 2018, 8:53 am

PP I have PM ‘d you :hug:
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Re: Alzheimer's update/problem

Postby aero280 » March 28th, 2018, 9:09 am

I will pass on the best bit of advice we ever received. That was “never get cross” over constant repetition. It won’t stop it happening and it will just increase your stress. Treat every question as if it’s the first time you’ve heard it.

However, in the early stages of dementia, a furious row over an issue can cause the memory to stick. OH is one of the helpers at the Alzheimer’s group that organises singing and exercise. It’s been found that music and the accompanying lyrics are stored in a different part of the brain, and is less likely to be affected by memory loss. People with Dementia can remember tunes and sing along. If you have a furious row that shocks the recipient, the info can short circuit the bad bit of the brain and go into that bit of the subconscious that still remembers. It might help with some issues.

An example of the above. We persuaded MiL to stop driving as she was getting unsafe. Later MiL asked us to remove the car as it was a reminder of her difficulties. After this had happened, we found that MiL was telling everyone that we had stolen the car. OH had a “strong word” and the comments apparently stopped.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 28th, 2018, 9:22 am

One less thing to worry about is that the Lasting Power of Attorney came through in this morning's post. 8-)
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Re: Alzheimer's update/problem

Postby suffolk » March 28th, 2018, 9:27 am

I absolutely agree Aero ... with Alzheimer's it's mood that is the most important ... if you can keep the person happy, even if it means agreeing that black is white and the moon is made of green cheese, your life and theirs will be so much better.

It was no good contradicting Ma; nicely explaining that the man in front of her was my son and not his father would confuse and upset her and the confusion and upset would remain all day. Agreeing that he was whoever she thought he was and moving the conversation gently on resulted in happiness for all. The short term memory isn't working well so it really doesn't matter what you say ... it's how you say it. :)

I tried writing notes and reminders for Ma but they didn't work because she forgot she'd got them in her handbag, and if I used Post it Notes she didn't read them because 'they weren't for her'.
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Re: Alzheimer's update/problem

Postby Seatallan » March 28th, 2018, 10:14 am

I'm glad the POA is through PP. If there are problems with his Attendance Allowance claim do PM me.

I can't add much to what has already been said/suggested apart from, in addition to the above, having a visitor's book near the front door with a note for any callers to please sign it. I know this won't help if he lets in anyone unscrupulous but at least if any professionals or similar call round unexpectedly when you are out you'll know about it.

So sorry you have this burden to cope with. It's very hard no matter how much you love the person.
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Re: Alzheimer's update/problem

Postby miss mouse » March 28th, 2018, 10:25 am

Seatallan wrote:So sorry you have this burden to cope with. It's very hard no matter how much you love the person.


Yes, it is very hard.

Are bank accounts secure? You & Yours had an item about some poor confused soul who was withdrawing large sums regularly and the children could not stop it despite having POA. It is a minefield.
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Re: Alzheimer's update/problem

Postby aero280 » March 28th, 2018, 11:37 am

I think that the risk with any regular payments only applies if they are made from a credit card. Those can only be stopped with the agreement of the card company. Normal direct debits from a bank account can be stopped by you without any other party involved.

If you have any regular payments from credit, you should identify them, speak to the credit company and move the payment across to a bank account.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 28th, 2018, 12:51 pm

He doesn't use credit cards at all. I think I've covered all the outgoings now but I will have to keep going through everything. He had an email with our Council Tax bill on this morning and he can't remember how he pays that. Harrow are notoriously stupid to deal with so I'm saving sorting that one out until tomorrow.
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Re: Alzheimer's update/problem

Postby suffolk » March 28th, 2018, 1:04 pm

If he can't remember maybe he set up a Direct Debit ages ago so doesn't remember? That's how we pay ours. You can simply check the DDs on the bank account so maybe no need to tackle Harrow :)
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Re: Alzheimer's update/problem

Postby miss mouse » March 28th, 2018, 1:05 pm

Pepper Pig wrote:Harrow are notoriously stupid to deal with so I'm saving sorting that one out until tomorrow


My friend in Brent would argue that one. If you get no joy from them cancelling payment might get their attention.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 28th, 2018, 1:23 pm

But I think he pays once a year. Probably by cheque. I need to talk to "a person" to find out. Almost all Harrow services have been outsourced and the Civic Centre is, like Brent's old Town Hall, a home for schools which are being enlarged/modernised/updated. Although I retired over 2 years ago now I was still having trouble with the Teachers Pensions Service because of mistakes Harrow made in not contributing the correct data. That department has been outsourced to Bucks CC who sorted it out within days.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 28th, 2018, 1:24 pm

suffolk wrote:If he can't remember maybe he set up a Direct Debit ages ago so doesn't remember? That's how we pay ours. You can simply check the DDs on the bank account so maybe no need to tackle Harrow :)


Believe me, he won't have done. DDs are on a long list of things he doesn't believe in. Including smoke alarms. :evil: :evil:
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Re: Alzheimer's update/problem

Postby suffolk » March 28th, 2018, 1:30 pm

Oh dear! Good luck with Harrow then ... I suppose you could check back to last March/April's bank statement and see what big cheques went out then ...
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Re: Alzheimer's update/problem

Postby Amber » March 28th, 2018, 9:01 pm

We used a diary to record when people had been to visit my mum. It didn’t help, she either refused to look at it, or refused to believe it was a true record - because she didn’t remember them, therefore they hadn’t visited.

You asked about medication, please make sure you see him taking it. My mum used to pretend to take it, or maybe accidentally drop/hide tablets (or build up a collection of them :shock: :shock: ). It made it very difficult to judge how effective new medications were.

There’s a very good ‘clock’ being advertised on FB (maybe not for now, but in the future).

Above all, keep talking and asking. Lots of us have experience of dementia, but every case, every person, every type is very different. My mum had mixed AD/VD......it’s horrible but I often wonder if I’m going to develop it too. (Or maybe am already showing early signs? Or is that just old age? It’s so hard to know. But OH (not ‘D’H at these times ;) :D ) says I am getting so much like my mum... :o :shock: :D )

Another thing, my mum was very ‘anti’ strangers, can you get OH used to as many visitors as possible atm? Disguised as cleaners/gardeners/musicians etc?

And finally, my mum hated, hated, hated (!!!) any change, so if tv remotes, clocks, mobile phones, light fittings, chair cushions etc, may need changing in the near future, get them changed ASAP while he still is able to adjust.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 29th, 2018, 4:22 am

I had thought of the diary Amber. In fact I'm keeping a log which records absolutely everything - visitors, financial things, appointments etc. It's as much for my benefit as his. Yes. I was told to watch him take the tablets. 8-) Yesterday he fancied a cup of coffee - never drinks coffee. I should have made it for him because he used proper grounds and added water to it like instant. Still, he drank it. :o

The change thing is interesting. This has been happening for a long, long time. Anything he doesn't recognise goes straight in the bin. I have probably told you before about the Karcher window cleaner I bought 2 years ago. Twice I found it in the bin, still in its box. It then turned up in the shed but has now completely disappeared. :rolleyes: :rolleyes: And even longer ago than that (maybe 5 years ago) I found the contents of the cupboard under the sink outside on the barbecue.

Thanks all for the advice.
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Re: Alzheimer's update/problem

Postby Gruney » March 29th, 2018, 7:52 am

I've thought hard before posting, because I know every case is individual, and I wouldn't want you to think I was butting in - I'm only passing this on for what it's worth.

When I was faced with a similar situation, I fell into the trap of feeling I had to do everything at 100mph. It affected my sleep, and there was no benefit from what little "me time" I forced myself to have. What I do remember, is that when I did slow down, I was able to "see the wood for the trees", and make much better decisions.
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Re: Alzheimer's update/problem

Postby Pepper Pig » March 29th, 2018, 9:35 am

Many thanks Gruney. I will bear that in mind. 8-) 8-)
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Re: Alzheimer's update/problem

Postby Pepper Pig » April 3rd, 2018, 10:42 am

Pepper Pig wrote:
I have ordered one of those video doorbells that work in conjunction with your iPhone,


This one arrived on Friday.

https://www.amazon.co.uk/gp/product/B07 ... UTF8&psc=1

Younger son fitted it. It is absolutely brilliant. There are cheaper battery ones by the same firm but OH has a lot of "previous" for throwing out chargers. :rolleyes: :rolleyes:

Very expensive but not if you consider the security aspect as well. And I do love a gadget . . . :oops:
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Re: Alzheimer's update/problem

Postby PatsyMFagan » April 3rd, 2018, 10:59 am

:tu: :tu: :tu:
No-one knows if you've done your housework, but everyone knows if you've done your gardening !
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Re: Alzheimer's update/problem

Postby StokeySue » April 3rd, 2018, 10:59 am

That looks good PP
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Re: Alzheimer's update/problem

Postby suffolk » April 3rd, 2018, 11:11 am

Hope it gives you some peace of mind Pp :hug:
“One cannot think well, love well, sleep well, if one has not dined well.”
― Virginia Woolf
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Re: Alzheimer's update/problem

Postby Ratatouille » April 3rd, 2018, 12:13 pm

What a great isea PP. I hope it solves many problems :hug:
Je pense, donc je suis. - Decartes
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Re: Alzheimer's update/problem

Postby suffolk » April 3rd, 2018, 12:31 pm

The bin thing is interesting. When Ma was at The Lovely Home various things went missing ... new glasses, bottom dentures, then top ones ... we found she was wrapping them in tissue and was either flushing them down the loo or putting them in the bin. A new set of dentures was expensive ... so were new glasses! The Lovely Staff 'doctored' the loo handle so she couldn't flush it on her own (she needed help for toileting anyway) and the cleaning staff always remembered to go through the contents of the bin in her room and rescued her new spectacles on several occasions.
“One cannot think well, love well, sleep well, if one has not dined well.”
― Virginia Woolf
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Re: Alzheimer's update/problem

Postby Pepper Pig » April 3rd, 2018, 1:48 pm

It was one of the first things I noticed Suffs. He started the throwing-away-anything-new thing at least 5 years ago. :(
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