I need to vent/rant!!

[peri17]

My Mum has AD and is slowly getting worse. I don't live with her, my elderly Dad does and so is her primary carer I suppose. Unfortuately he is not the most patient person, and is the sort who 'always knows best' even when he doesn't. We live in France which makes everything a lot more difficult - they don't speak French, I do although not not completely fluently. I live alone with my pets on the other side of our small town. I go and clean twice a week, take Mum to see medics etc.

Everything seems worse because of Dad's attitude. Mum has taken to waking in the early hours of the morning and thinking she is 'going home' - to England I suppose. She wanders around the houes and goes into his room waking him up. I know this is hard for him, I do have some compassion, but sometimes I could strangle him.... here's one reason why...

About 2 months ago I was in the morning woken by loud knocking on my door, which turned out to be 2 gendarmes. They toldme that my Mum had been found wandering in the road and they had taken her to the nearest hospital after trying to get hold of my Dad by knocking on his door, ringing the bell and also phoning him. Did I have a spare key so they could enter and see what was going on?

As you can inagine I nearly needed taking to the hospital myself, imagining all sorts of things, but as I went back into the house to throw some clothes on I rang him, and he answered. When I asked did he not hear the noise he said huffily 'I don't get up that early' which made me think he HAD heard and just not answered.

Anyway as we went to the hospital I wondered how it was that Mum had got out, as she normally goes in to see him, not leaving the house. He replied that he had put a bolt on a door between the part of the house with his room in it and hers (they don't share the same bedroom) so she wouldn't disturb him. He had left the keys in the front door, and I assume that she tried to get hold of him, couldn't, and then got dressed taken her bag (which has her name and adddress in it, luckily) and left the house.

Later, when we had established that apart from dirt down her nails from falling in a ditch and legs black and blue from the knee down, she was OK, I had words with him about what he had done. I really tried not to yell or be nasty about it, but said that he had made a mistake and not to do that again. He started yelling at me, swearing and calling me names and generally behaving like a b*****d. I was a bit on the upset side, as you can imagine.

Anyway I made peace as I can't go up to the house and not be speaking to him, but lately she has taken to wandering in the night again, having hallucinations that there are people in her room, so he is talking about locking her in her bedroom....

I asked about giving her a sedative of some kind at night, but our 'GP' says no, as she is very unsteady on her feet and something like that would make her groggy and at greater risk of falling.

Is there anything that can be done to stop this night time roving????

Sorry for the long post but although I have vented to pals over here, they don't quite have the same grasp of the worry and guilt and despair that all this causes me, and the horrible feeling of how much it could all get.....

[Canadian Joanne]

Hi Peri and welcome to TP.

Is your mother on any Alzheimer's drugs at all? They can help with behavioural problems and shouldn't make her drowsy. Is she under the care of an AD specialist too, not just a GP?

Perhaps if the gendarmes had spoken to your father, he might have taken it a little better. He does need to understand that things like this could recur and there could be a tragic outcome. Do you have keys to the house?

Sorry, I have lots of questions.

[Lucille]

Hi Peri

Welcome to Talking Point ... you sound like you have your hands full, so vent away! I think there are two problems here (sorry!).

Firstly, your mum's illness and how she is cared for and secondly your dad's approach to caring for her.

As Canadian Joanne asked, what provision is in place with your mum's GP and/or consultant in terms of her AD? What support can they provide? Presumably you've had a formal diagnosis and I'm assuming they haven't left you high and dry ... I think you (I'll say "you" and not your dad for now) need to persevere with the doctor(s)- assuming they'll talk to you - and see how else they can help. (It took me 12 months and four visits to my mum's GP before they would even refer her and then the inevitable wait, yada, yada, yada ... so I know how wearing it can be.

Secondly your dad. Oh dear. I can relate to his "approach". IMHO he can't cope. Can't cope with your mum becoming ill, can't cope with the fall out from the illness, can't cope with anyone trying to help - because this in itself means he has to face up to the reality that she has a degenerative brain disease. The danger, if I can call it that, is he in turn could put your mum at risk - bolting doors? Seemingly knowing she will go out and leaving her to it? But I can believe someone would do this, because I have experience of a similar instance (though not as serious) with my mum. And when I read your post, I thought, "ditto that!"

In my mum's case, the person involved would not listen to anything that was said about her illness, exaggerated the problems she experienced, and sometimes made up stories, said she should be "put in a home" and that she was "wandering round in her nightie". That latter comment hurt because it was, and still is, so far from where mum is with her illness. They say a little knowledge is dangerous and he tried to use what he had. Mum still lives in her own place relatively independently. I think, looking at from his pov, and this might apply to your dad, is that it's a generational thing and your dad, perhaps, can't deal with a mental illness? I do understand how you feel. When I suggested to my mum's friend that he might benefit from some help by way of talking to someone (his family; a counsellor, his GP). I was told it "it's not me who has the problem." So there you have it. As you say, "behaving like a b******d!" I came to the conclusion that nailing jelly to a wall would have been easier!

Please do pursue other avenues for all your sakes. It would be very sad that as well as losing your mum to this awful illness, you lost your dad because of it too.

Post back and let us know how you get on. (BTW: We did have someone on TP called Michael E who was based in France and although he doesn't post much any more, you might gain some practical information from his past threads - just a thought).

Take care.

[peri17]

Yes she has a diagnosis, and is seeing a geriatric specialist who has tried to be helpful. She was on Aricept but this has been changed on our last visit to Ibixa (I think that is the correct spelling.

I told both our GP and specialist what happened and they both have talked to him. The specialist is a doll - I explained to her that he doesn't listen to me so she repeated everything in front of him(with me translating) in order to try to make him understand. Our last visit was 2 weeks ago. The specialist is concerned that Mum is very underweight at 40 kilos, and needs to get more protein. She suggested that he give her rich between meal snacks to help with this, he says it 'spoils her meals'. She explained it would be better to give 4 or 5 little meals, he hummed and ha'ed. Immediately we were out of the hospital he said that the Dr was 'completely impractical' that he feeds Mum a balanced diet etc etc etc.

He will not brook any criticism or advice. We were given very useful diet ideas - eg stir egg yolk into mashed potato, add chopped ham and egg to rice, - he won't separate the eggs as 'he can't afford to be wasting food.' So he has simply not done any of the things the Dr said and carries on as before. The GP has told him that Mum should not be left alone or be able to get out. Yet he goes out shopping and leaves her, not telling me so that I can go up and Mum-sit.

He has always been a control freak, and now can find even more reasons to control everything. He taken the incontinence pads and pants away from Mum and doles them out because 'she was using too many'. When I go to clean I have to ask him to get out clean sheets as her bed smells. He raves at me about how he can't afford to be washing everything all the time. I can't get the sheets myself as he keeps them in his bedroom. As for being hard up - anything he wants he buys for himself, latest is yet another new sound thingy for the TV as the 2 year old one he had was apparently not good enough.

What makes it particularly hard for me is that a lot of people we know over here just do not believe me when I moan about all of this, as in public he can be fairly charming. He sits and holds Mum's hand when we have a coffee on market day, and buys her a jumper or something - and makes sure people see him giving it to her. What they don't see is what goes on at home. . .

Anyway I think I have sorted the locked door stuff. I told him how difficult it would be if something happended to HIM during the night and Mum was locked in and unable to call me or anything. He seemed to take that in! I also sugested that he lock the front gate (there is a tiny yard at the front of the house) so that she can still use the outside loo in the morning (he won't buy her a commode and the upstairs bathroom has steep stairs). She can't get out of the front yard at all so no more escape atempts.

I have thought myself that a lot of this is because he actually is afraid to really face the facts, coupled with his underlying bullying personality.But how can one make someone face facts and take action when they just will not do it? Nailing jelly to the wall is nothing in comparison...

And on top of this I miss my Mum who was my closest friend and confidante. I feel so very alone here without her. Oh dear now I am tearing up and feeling sorry for myself, which does nobody any good. And some days Dad is in a better mood than others, and some days she is a bit better as well. Maybe the gloomy weather has got to me me this week....

[Christinec]

Hi Peri 17,
Venting is good and i certainly dont feel I can give you any right answers but having faced situations like yours over many years. In the end I decided that I had to protect my Mum. As her disease progressed I visited and did what I could to keep an eye on the situation and making sure that medical and social work staff knew what was happening. There came a point where action was taken to protect my Mum from the situation in her own house.

Problem with alzheiimers is that it can affect anyone. Not all carers will start off with good relationships with the person cared for and in our case the carer had always been a bully with mental health problems who required everyone in the family to do exactly what he decides and never listened to advice from anyone. Some of your examples of behaviour are similar to my experiences.


I do appreciate that the strain of caring for my Mum probably made his behaviour and mental health worse but I did not want Mum to have to keep dealing with that. She had alzheimers and could not stand up for herself or understand his behaviour. I do not think she was safe.

It is heartbreaking and even now I question whether I did the right thing but I had to protect my poor Mum who had less capacity to protect herself than a child has.

Mum, now almost 90, is in a care home and gets the care needed. She is not left alone for hours or shouted at (I hope) or dragged around the country at the whim of the carer (she always hated travelling)and seems to be looked after well.

I hope you find the strength to keep doing what you can to help your Mum in what I think is an incredibly difficult situation. There are many brilliant carers on TP who deal fantastically well with the challenges using patience and common sense and all the resources available but not everone is able to be that type of carer.

[peri17]

Thanks very much to the 2 of you who replied - I had hoped for a bit more support from the website as I don't get very much here, but at least you both understand the situation.

I can't work out how to put a 'quote' in the text but Christine C you mention your MUm being shouted at and dragged around - both these things happen altho now finally my Dad has realised he cannot take her off to Spain or the UK in the car whenever he feels like it.

I have agonised over what to do, as I can't afford to support here (I am very hard up and just the larger heating bills would be a problem, let alone the incontinence pads etc) that's even if I could get her away from Dad, as I am sure he would fight it tooth and nail. I also feel that it would be worse for her in a home here in France as she speaks no French at all, and my experience when she is in hospital was that she chatted away in English, and the staff were worried that they could not understand her. I saw their point of view - what if it were urgent?

Some of the nurses in fact were less than nice asking 'why can't she speak French if she has lived here for 12 years.' What am I supposed to answer? It aint exactly my fault!

So I suppose all I can really do is monitor and help and try to get Stalin (my Mum and I used to call him that in happier days!) to see sense.. not argue when she hullicinates, not leaving her alone locked in the house etc etc.

It's just hard! But I think ir sounds like you did the best thing for your MUm Christine C and I am very glad that she is happpy. Don't worry about what you have done, one does have a right to look after oneself as well, (within reason obviously) and this stuff is making ME crazy - at my Dad, at the situation, at the lack of understanding etc etc... I often think I am turning into a whinging old biddy who nobody wants to listen to because all I have to say is parent-related, and it ain't exactly great dinner party chat!

Wish there was a 'wry smile' icon - take it that the sarcastic icon is nearest to how I feel!

[Val_B]

Dear peri
I've not responded before because I have no practical advice to offer but the part about missing your mum as your best friend certainly struck a chord with me asMum's abrupt descent into dementia this summer has left me bereft of my best friend, too. All we can do is adjust to a new relationship. It must be so much harder for you, though, with your dad being so difficult. You and your mum are in my thoughts ...

[Izzy]

Me too - can't help other than sympathise with you. It must be so much harder being in France. I know it's bad enough dealing with things at home. Don't know how I would cope in your situation.

I know it's hard when you don't get many replies to posts/threads. I've sometimes felt the same myself but I know that I don't always reply when I can't think of something useful/helpful to say.

Take care. Izzy x

[lesmisralbles]

Thanks very much to the 2 of you who replied - I had hoped for a bit more support from the website as I don't get very much here, but at least you both understand the situation.

I understand your situation X, and I feel for you.

I cannot give you any advice,my situation was different. We do read your posts, sorry if we did not respond X

Barb X

[Christinec]

hi Peri17,
Firstly please do not give up on TP. It has really helped me and I only wish I had known about it 10 years ago when mum started to get ill. I have learned so much by reading it and it helps me connect with others experiencing some of the same problems although your post was one of the few mentioning a very similar scenario. I know exactly what you mean about only talking about this and been seen as a"whinging old biddy". TP is also particularly good for answering specific queries.

I suspect that few posters here know much about the way things work in France and therefore feel it is difficult to give you any information or advice because of this. I know I really feel I cannot advise because you are in another country.

Although your situation reminds me so much of mine I do not have any idea what health or social care services are available in France. I have to say that our CPN (Community Psychiatric Nurse) was very supportive and professional, as was SW and the carers and care managers involved. It still took 7 years and many incidents like the ones you mention to actually get recognition that Mum needed other care. It is difficult for outsiders in these circumstances to see what is going on and they cannot take action until they are sure there are major problems. Some people are very good at acting the part in public. My advice would be to try to keep a record of anything that happens and note anyone involved in an incident. Certainly in the UK you cannot assume the care workers, health staff and social workers will all be aware of all incidents that have occurred. Communication is often lacking.

I really hope that you can deal with the situation by continuing to help, monitoring and trying to talk sense in to your Dad. It was the strategy I went for but sadly it just did not work for us. Actually was told at one stage that the authorities would have taken action sooner if I had not been around to keep an eye on things. I remember feeling quite bitter about this because of the emotional strain and the effect it was having on my life and health.

Eventually after yet another crisis we had a case conference meeting with everyone present where all the information was brought together with everyone there. It was a terrile meeting. Very traumatic but it allowed those involved to have an overview of the real situation and realise action had to be taken.

Finally sadly despite being well looked after my Mum is not happy and at my guiltiest I torture myself by wondering whether she would be better back in her house. When I look at it rationally I know that was not actually a realistic choice. To be honest by the time Mum went in to the home I was very near to a breakdown with the stress of dealing with Mum's illness and a situation which nothing really helped. Nailing jelly to the wall - what a good description. You are right to mention looking after your own health and well being.

Mum was never a happy person and all she wants to do is go home although as with others with this illness "home" is somewhere where she is not ill and everything is normal.

Really what might help you is a french TP although perhaps contact with the Alzheimers Society Helpline in the UK might also be useful.

Wishing you all the best and do really hope that things improve for you all.

[ella24]

Hi Peri

have you found this organisation?
http://www.francealzheimer.org/

they may be able to help (and may have some traqnslation services?)

[Libbie]

Hi Peri
I personally think after reading all you have said that your Father is in typical denial of your Mother's "illness". He behaves one way in public, the caring doting husband and then behind closed doors is not handling the situation well at all - in fact he is probably making the situation far worse than it need be. He clearly doesn't understand the nature of the disease your Mother suffers from, he needs explanation from a qualified source if possible. Your Mother's medication sounds like it needs adjusting to control her nighttime wandering. It might be possible to give her a slight sedative at night to calm her and help her sleep. Failing that, it might be time to consider residential care for her for her own wellbeing and safety. She could seriously hurt herself or worse if her wanderings are allowed to continue. Sounds like she needs closer monitoring and supervision. My heart goes out to you as the daughter, you are torn between the sorrow you feel seeing your Mother deteriorate and the "loss" of the Mother you once knew and the frustration with your Father not handling the situation well - i have been there myself with my Father, it is a painful journey for you too. Bless you

[Lynne]

I was another who read your initial post and thought "I don't really have anything constructive to say which might be helpful, & know nothing about 'the system' in France either",
but now I regret not even saying what I thought, which was:
What a dreadful situation you are all trapped in, and your Dad's denial of the true situation is blocking any help you might find locally.
None of that tells you anything you don't know already, of course!

On re-reading, the only thing which occurred to me is: did the change of medication (from Aricept to Ebixa) coincide with the increase in wandering?
If so, is the doctor aware of this undesirable effect? Are you able to speak to the physician in charge of Mum's treatment, or does it all have to go via 'Stalin'?