I had a friend in UK who was looking after her mother with early onset dementia, she even escaped from the unit where she went to give my friend some respite care.
In the end she had to be locked in her room, which had been thoroughly checked whilst my friend worked from home nad did the cooking etc.
She was allowed out when someone had the time to sit with her and for meals.
It sounds drastic, but it worked and she could watch the tv to her heart’s content.
@JaneJones Yes been there, she was a very slow driver so when she disappeared out of sight down a long hill (I was following in the car she had taken me to collect) I knew something was wrong. I normally went down that hill in low gear but would have to keep braking behind her, and sure enough round the last bend there was the Saxo nose down in the ditch with the rear left wheel in the air.
She said she was blinded by the sun, but there were no skid marks in the gravel and grass verge and I am convinced that she fainted. There was a funny side. She was more worried about the airbag suffocating her, the first man on the scene started panicking because he could smell the explosive charge from it, and the 2 dogs in the back, totally uninjured or distressed but poor little Sami, the Springer Spaniel, was jammed with his arse under the back of the front seat.
The car was written off and she has agreed, and has not, driven again since.
@Jane_Williamson That at least is something I think we don’t have to worry about. The speed at which she moves would preclude any escape. We can laugh about it, this morning I took Jules for a walk though forest and field, did the rounds of the garden with the bucket, retrieved my towel from the veranda, stripped off and walked up to the pond, did 6 lengths then skimmed the leaves before coming back down to dry off and replace the towel in the veranda. And she was still in the bathroom that she had entered before Jules and I had departed. Emerging from the bathroom door, which is between the kitchen sink and the electric kettle point, she did not hinder me at all. As I said to her at the time ‘others might think that you halted to allow me to pass back and forth, but as we both know, you were actually in motion the whole time and hadn’t noticed me at all’. We both collapsed in each others’ arms in helpless laughter. 
I call her Buster Keaton, The Great Stone Face because the funniest of jokes or situations completely pass her by, but now and again, something strikes a chord and hysteria ensues. 
Only way to get through, innit?
3 Likes
I admire your caring, fortitude - and the retention of your sense of humour David.
Dementia does have it’s funny moments. I remember particularly a kitchen conversation between my Mum - who had dementia - and my Dad who was her main carer.
Mum set fire to some toast under the grill and we all rushed in to sort it out. In due course…
Dad: ‘Why didn’t you use the toaster?’
Mum: ‘We haven’t got a toaster.’
Dad: ‘We have, it’s just there.’
(We all look at the toaster, which is standing on the bench right next to the cooker).
Mum: ‘We haven’t used that for years!’
Dad: ‘You made the toast in it this morning…’
Etc…
1 Like
Went with a friend (who understands quicker what is said in French) to the doctor this morning and got a very sympathetic hearing.
She understands now that Fran’s mental decline is accelerating and indeed is markedly worse than the last visit only a few weeks ago. Examples are, asking me if we are staying here (house? village? country? no idea), trying to light a cigarette from the bars in the electric oven with a cut off strip from a kitchen towel, this had the knock on effect of delaying our meal last night because I didn’t realise that she had turned the temperature knob to zero, and insisting on wearing her mask in the house long after our return.
But we came away with ordonnances for creams for the rash, Fortimel for food boost. anti depressants, treatment by the foot specialist and daily visits 7/7 from a nurse to supervise her ‘toilettage’ and medicine taking.
Our wonderful, non English speaking, French neighbour has been on the phone this afternoon talking to several people mentioned by the local cabinet in order to set several balls rolling. Not entirely clear but someone is coming round in the morning to assess the situation. There is a hint too that, despite her ‘longue duree’ 100% category, there may be something to pay on our part for some of it.
Maybe we’ll know more in the morning but in the meantime Marie-Paule has more phone calls to make on her behalf. Nothing is straight forward.
The value of good neighbours is without price, and to some extent we are reaping what we have sowed in the past, helping them both financially, at a very bad time, and emotionally, taking their dog for her final journey when they were so overcome with grief that they couldn’t drive.
Of course this is personal for us, but I hope also of use in answering, as we go along, some of the questions posed in @strudball’s OP.
11 Likes
That is wonderful, so glad they are moving so quickly David. my thoughts are with you and your wife xx
You are having a hard time and I am so sorry.
It is worth its weight in gold having good neighbours, especially for us here in France without our families close at hand.
Thank you @Jane_Williamson and @toryroo , you beat me to it, I was coming here anyway with an update.
The first nurse came and said she and her team were just for making sure she took her meds, anti-depressants and Fortimel. The toilettage would be the reponsability of others. Marie-Paule finally managed to get someone there who wanted us to fill in a dossier but didn’t seem likely to help as they were under so much pressure and in any case, despite her longue duree 100%, we would have to pay. In view of the fact that she needs this attention morning and last thing at night (which to her means midnight but takes an hour and a half on average) and as I doubt they would turn out at that time and I am managing the morning session (with great difficulty because she resists getting out of bed and then cannot follow the simplest instructions). She nearly blocked the system the other day by using far more of the cream than necessary and, with a handfull of kitchen towels (yes, not bog paper). One night she didn’t close the hot tap fully (it is stiff) and it dribbled all night long.
So because of that I cancelled the toilettage help and it was suggested after 5 days, but I was already thinking along those lines, that the pill nurse should finish as she is only here for 2 minutes to watch her taking a pill and starting to drink her energy drink. Both of which I can do easily once I have got her up.
As no-one seems able to give a rdv time, only a ‘between midday and 2’, I am effectively imprisoned for 2 hours every day not knowing when they will come. This means shutting the dog in so I can leave the gate open (it is difficult to operate).
Mentally she is worse every day. In so many ways though we do have a laugh in between times.
Good news? Yes, of course. Marie-Paule has arranged the foot doctor to visit here to attend to her toenails on Monday at 5pm. The good thing about M-P sorting everything is that she can direct them to her more easily than I can to us, so everyone initially calls there first. 
And, on Tuesday afternoon all 3 of us (I can’t leave Fran for more than an hour or so now because she forgets where I’ve gone) will be going up to St. Junien, or perhaps a bit further, to collect the lovely Dobermann, Noubia, who has had a much worse time in her 9 years than we have and I hope she will stay for the rest of it. Fran is looking forward to it as well, but I doubt she’ll know where we are going when the time comes.
It is very trying coping with this dementia, it was identified over 5 years ago but has only recently become more critical. I try very hard not to get angry, but my voice has been raised a time or three. When she nods in agreement at midnight at my suggestion that she should get undressed in the bathroom ready for me to hand her the appropriate liquid and cream, but then continues to sit there as if nothing has been said. I usually get to my own bed at around 1.30am. When it takes me at least 4 attempts to get her up in the morning (I say morning, it can be afternoon) and then only when I threaten her with the squirty bottle. At least I have managed to get her to take her day clothes off before turning in and putting on clean the next day.
I wanted to finish on the good news, but heyho, whoever thought that a visitor coming to cut your toenails would be a cause for celebration and excitement?
4 Likes
Very hard….you are coping admirably. If having someone pop in and out is not feasible for you, is there any possibility of respite care? Our maison de retraite has 16 day spaces (l’accueil de jour) and collects up groups of people with dementia to give their carers as rest for a day……At least that way she is safe.
Hopefully someone is sorting out the allocation lallocation-personnalisée-d’autonomie (apa) for you if not already done to provide a bit of financial help.
Courage…
3 Likes
I know of similar situations and, yes, a Dossier does have to be completed, fair enough.
But, once the Dossier is done, things can click-in… there are a variety of physical aides/helpers etc available… as well as financial assistance to pay for whatever…
Please don’t throw away the idea of help… for fear of what it might cost you… it might well cost you next to nothing… find out…
This is a very difficult time for you and your wife… and you must also look after yourself.
I watched someone try to care for her OH on her own… and eventually carers of various discriptions came morning noon and night…
Yes, she had to be there, but some of us took turns to sit with him, just now and again, letting the Carers in and out … thus allowing her to be away, for an hour maybe two.
He hated her being away, but she needed breathing space.
I know that finances were strained… thus I know that financial aid is available.
I wish you the very best of luck.
5 Likes
What Stella said and I wish you strength and fortitude. It is very hard.
Yes, thank you both. It wasn’t the prospect of paying that put me off but the thought that with the then pill nurses tying us down for 2 hours a day, if the toilet ones came up with another 2 x 2 hours at each end of the day, it would all get a bit too much.
Indeed, I might still get a bill for the pill nurses as the first one checked her CV and said she wasn’t 100%. Pharmacie put it in the machine and said otherwise, the doctor too, so all a bit up in the air on that score.
Just seen a very puzzling message on the right of my screen:
This topic is clearly important to you – you’ve posted more than 25% of the replies here.
It could be even better if you gave other people space to share their points of view, too. Can you invite them over?
What’s that all about? How can I be stopping other contributers from posting? Who am I going to invite? If they are interested, they’ll come. 
2 Likes
No problem, it pops up for me too… when I’m in full flow (as we are with this topic).
Just ignore it…
1 Like
The format of this forum is different to any other I have seen, takes a bit of getting used to sometimes. 
2 Likes
I think it’s just a little check on personal arguments developing between 2 or 3 people, which exclude others- it certainly doesn’t relate to your important and moving posts in this thread David.
13 Likes
Our medical centre, in a very small village, also has accueil de jour, mainly for elderly but I believe for handicapped of all ages too.
My good wishes to you to keep on a bit longer. I think you need to go along with any care plan offered or assessment for now. I would accept everything they suggest and try to get the next appointment arranged (even sometime on a half-day or a 2 hour window) before they leave.
Your task now is to get your wife into the “help system” as you really can’t do it on your own any more. Nor will you be able to do it on your own again. You need her to be kept on the radar of carers. The more so since you’re detecting they’re under pressure.
I know this may take adaptations and for now restrict your own freedom but you need a care plan. I would engage with everything - you can see if there is room to adjust once you’re firmly on their radar.
Especially, I wouldn’t let anything you’re told could be chargeable put you off. When you’ve got a plan then you can decide things or seek further advice and help including any issues with charges.
Please keep posting aa you work through this.
Thanks Geoff, I’ll bear it in mind for the future. My first reaction was that it was a criticism. Does seem a bit knee jerk though.
And thanks to you Karen too, wise words and I will nip next door to recover the dossier and complete it in the morning. As to the pill nurses, they are still in the picture no doubt, it was obvious to them that they were no longer needed at this point, and asked my permission to withdraw, but will be there I am sure when needed again.
PS I know you’re not going to like this and can guess it could be a nightmare implementing, but…your aim is to get permanently onto the radar of carers now and into the “system” of care. Then later sort out any issues with charges and any adaptations needed (I’m talking about your ability to sort out some freedom for you here once a care plan looks like taking shape and keeping her on carers regular rounds).
The suggestion is… is it worthwhile tackling the midnight problem by accepting services earlier evening or even very late day depending on how late carer can provide? For one thing trying this may convince the help providers you really need the help (can combine with pills?)
Again you are right. Already I have noticed a downside of the pill checkers not visiting. With the threat of their pending arrival I had no ‘stick’ to get her out of bed with. Yesterday it was purely what I want which cancelled her motivation and as a result the pill and drink were taken much later. This meant that her morning washing, with special liquid soap and cream treatment, went by the board.
I made sure that the ‘before bed’ one was done and, if anything, the missing of the morning session encouraged her to be more compliant. Swings and roundabouts.
1 Like
Yes, you get the same when some automatic ‘brain’ says that your posting is similar to others, which clearly aren’t.
This really needs addressing as it is extremely annoying, as is the rule which says you have to use five letters to reply when all you want to say is No or Yes.
2 Likes