Nil Desperandum - but I dispair anyway

[angelface]

Poor BE, its impossible to get this right is'nt it?

Have you thought: your mum will loose her language some time, so there will be a time when she won't be able to speak English, French, or anything else.

If you break down, mum will have to go into care anyway. So try and do it before you do break down.

I know when you are in the middle of all this, thinking straight is almost impossible. Sending support and prayers for healing.

Gxx

 

[Big Effort]

Hi Angelface,
I accept your prayers for healing, both for Mum and for me. Thank you. I am not at all religious, but I do believe in prayer. Thank you again.

My prayer is that she will lose language fast. Lose her sense of place. So that it doesn't matter where she is. So far my dark thoughts have been ignored by the Universe.

On the one hand, I think the Universe is listening and delivering. Because I have landed the perfect, most fun and rewarding job. They want me, no one else. They love me. It is perfect. Having Mum at home still is not perfect.

It is the fly in the ointment. Hugs BE

 

[Skye]

In that case, BE, you must fi d a way round this. Your career is important, you have the rest of your life in front of you, and you mustn't lose this opportunity. You know if your mum were well she would be thrilled for you.

My mum used to say,'things have a way of working out', and I really believe that. You will get through this BE, I have faith I you.

Look at all possible homes. You'll find one, even if it's a distance away. Have fait, BE, that cliff is a long way away yet!

 

[lin1]

BE My heart goes out to you .
You are so worried and under far to much stress and pressure that your health is suffering.
Your MUM not the dementia came shining through yesterday , she not only told you what to do she gave you her permission , try to hang on to that.

If your mum is anything like my mum was befor dementia struck, the last thing your Mum would want is for you to put your own health at risk
so keep looking at places, their must be some places where a few staff speak English and it may well be that manager/owner doesn't know that a staff member speaks other languages , my bosses didn't know if I spoke other languages and I worked in part of the NHS in close contact with the public .

BE your posts and threads have not been lost,
Hear is a link to one
I found it very interesting , it made me understand things about my mum , I always thought their was more than dementia going on , now I am sure of it
Oops link didn't work, I will try again

To find all your threads , just click on your name either on the blue section at the too of the page or when reading a post you have posted in
scroll down the list on the left , you will come to find all posts and find all threads , just click on the one you want and the lists will show so you can click on what you want. I hope this helps

HUGS to you

 

[lin1]

Here it is
http://forum.alzheimers.org.uk/show...nosia-an-important-insight-into-Mums-dementia

 

[Big Effort]

Hi Lin,
I see the post exists when I click on it..... but in this virtual world, WHERE is it? Is all the stuff I posted (almost 2000 posts) just going into some invisible archive, as something new has replaced it?
The very idea makes me heart sick. A year of memories and our journey together just struck off the TP planet. Or have I got this all wrong?
The post says "Closing soon" when I look at it. Why closing? Who said I was ready for it to close?

Anyway, all your wonderful support in all the posts has come through, and I feel more able to cope. Just for now.

Take care all..... and thank you for the support, BE

 

[Delphie]

The language issue is obviously a problem. Even if she is confused by dementia and her reality is out of step with the world's version, she needs to be able to communicate with those caring for her. Are there places with English speaking staff anywhere within a reasonable driving distance?

Then there's the care home problem as a stand-alone, regardless of language issues. I don't know if this will help, but my mum also has a complete lack of insight and would never agree to residential care, or any kind of care come to that. Every bit of support I gave her had to be invisible, and if she as much as got a hint fireworks would fly.

But she was going to be sectioned if I didn't somehow magic her into a care home.

I visited several and the quality was far from consistent. There was also the question of what was right for my mum. One stood out and that was the one we chose.

When a place came up, I lied and told her we were going to take a trip (she likes to travel) and stay in a lovely hotel. We went and I left her there.

It sounds hard, but my choices were somewhat limited at that point. Get her into a really fantastic care home somehow, or watch her being taken into a mental health unit against her will. So I did what I had to do. It wasn't easy and the stress during the build up probably wiped a few years off my life expectancy, but I made it happen.

The point I'm getting to is this, my mum still, months on, doesn't realise she's in a care home. Her room is her apartment as far as she's concerned and she's aware that she can't leave and sometimes this bothers her. But she has no real idea of what it all means.

To give you some context of where she is on her 'journey' (I don't know why, but I'm starting to hate this word!), up to the point of going into the care home she was still managing to get a bus into town to buy a meal in a cafe. The same meal in the same cafe almost every single day (sometimes she'd forget to go), and she was starting to get a little bit lost, but on the whole she was managing to do this. So she wasn't completely unaware. Yes, I think that's what I'm trying to explain. She recognised me most of the time too and someone who didn't know her wouldn't have necessarily picked up on the Alzheimer's during a small talk kind of a chat, certainly not if they weren't in a position to verify what she was saying against facts.

Even today, if you asked her, she would tell you that she is very healthy and that she would never go into a care home. She would say this sitting in the care home.

So please try not to worry too much (impossible, I know, but still, try... ). If the live-in carer doesn't work out, there might well be a good care home not a million miles from you and your mum, like mine, might no longer have the capacity to look at her situation and see it for what it is.

 

[Big Effort]

Hello Delphie,

Your post comforted me very much. Perhaps this is what Mum will be like too. I will talk of appartments (her room), but my mind wonders how she will react to the dining room full of oldies, with jaws hanging open and many a vacant stare..... Or will she do her anosognosia trick, and like your Mum, sit in a care home, thinking it is a special sheltered housing place.

It sounds impossible...... but she might just be the same. Continue to delude herself and thus be protected from being in a home.

You give me hope.
Thank you so much for posting and sharing this. xx BE

 

[Moonflower]

BE, this is a much shorter reply than I would like to send. I have been pondering on the anonsognia which isn't spelt like that and have much that I would like to say. It seems to me to lie at the very heart of dementia for so many.
But for now... I am sorry you are so troubled at heart by your mothers dementia. I think you may have to be brave and take her to a place of care. The language issue is worrying. But two thoughts for you
You are certain that your mother will not accept a care home. My mother was certain that there was nothing wrong with her. She did not need a care home. She also knew many other things, like she did not need to have a shower or change her clothes. The reptilian brain is a powerful thing. If your mother could not survive a care home, she may not be in one. My mother owns the one she lives in and has to stay to ensure it is properly run.
I would also ask you a question..in this situation, what would you want your daughter to do? I suspect you would not want her to sacrifice her own health and family life. So do you now have to show her how to hand over care when it becomes too much?

Holding you in the light...

 

[Big Effort]

Moonflower,
Thank you too.... this is so helpful.
Perhaps there is a chink of light there somewhere (no doubt the light you are holding out). Perhaps this faithful anosognosia companion will see her through. Mum wouldn't like to run a care home either.......
.... but you and Delphie have made me wonder, given me hope. Perhaps I should ask Mum if she would like to join a retreat for fellow journalists. Something a bit more upbeat, something she would love to do.....
Maybe anosognosia will be my friend as well as her protector.
Wouldn't that be a miracle?
Hope blooms eternal.
Many thanks, BE

The ideas flow....
a circle for authors,
a gardener's residential club
Now those sound more tempting than a care home.
With gourmet food - and Mum honestly wouldn't know the difference anyway.

 

[Skye]

Now that's more positive! You're managing to walk round that hole in the ground.

BE, read your Thread thread -- and empty your PM box!!!!!!!

xxxxx

 

[Delphie]

I'm glad that you got some comfort from my ramblings.

Do you know something? If anyone had told me before the care home move that my mum wouldn't properly see the people around her, I wouldn't have believed it. But she goes to the dining room (the restaurant) and complains about people's manners, but in a tone that suggests the wrong cutlery being used rather than anything else. People dribbling around her or being fed doesn't register for what it is. It's incredible but a huge comfort to me.

I'm not going to lie and say that all is perfect. When I visit, she's often horrible to me and then difficult with the staff for a while. I trigger an instinct to go travelling and some of their old paranoias come to the surface too. But she's fine most of the time and when she takes anti psychotics she is much calmer and happier than she's been in years. I don't announce my visits and every time I go I get to see her before she sees me, so I know the staff aren't spinning me a yarn about how good she is most of the time.

Anyway, I'll shut up now. Have faith that things will change for the better, both for you and your mum. There's little happiness to be found with this wretched disease but sometimes 'this is ok, all things considered' can be a very good outcome.

 

[Big Effort]

Have made space in PM box. They need to make these things bigger. I get such lovely messages and hate to delete any!

Skye, Hazel,
It takes me a long time, coming from Ireland, I always take the scenic route!
Middle way or skirting the hole in the ground.....
.... I must use the health professionals to support me and Mum. I think I will have to create an elaborate, simple and convincing hoax.

Words like care, respite, dementia don't work with Mum. I must be creative, so holiday weekend for journalists, environmental think-tank, organisation for retired cookery writers, journalists holiday in France.....

This might well work. It might. It really might for her power of delusion is strong. xx BE

 

[Skye]

As your mum does such a good job with her garden, I'm sure the 'hotel' would give her free B&B in return for help in re-designing their own garden.

 

[Pennie]

Dear BE, excuse a newbie butting in but I have agonised over your recent posts, so firstly please accept my best wishes in getting things sorted and you back on an even keel.

Just a little story:

A friend of mine who, a few years ago now, had to take her mum "to a hotel - while they were having some renovations done to her part of the house" was allowed to redecorate with similar paint scheme and carpet and curtains from home etc. before she moved in, and although the window was a lot smaller than she had been used to, they positioned a few items of furniture in similar positions (ish) and her mother never twigged at all and she never asked about real home at all.

I will keep thinking of you and join the others in "holding you up against the tide" - get that rubber ring out and paddle forward

 

[jaymor]

Hi BE,

That big hole you mentioned, was it fear of your Mum falling into it or you?

If it is you then make sure you go around it. You are looking down it at the moment but you don't have to drop in.

If it is your Mum that you think will drop into this hole disguised as a Care Home then yes it is a big dark hole with no way out. But you can help her. You can make sure her parachute is fully open allowing her to drift down and you can give her a torch to light her way. Her parachute is your watching over her, making sure her journey is as smooth as it can be and her torch is your love and the help and support of the carers around her to show her that there is still a little pleasure left in life.

It is frightening how quickly language and home can disappear from their life. My husband lost home and me 12 months before he went into care. His language is now
sometimes unintelligible sometimes intelligible but purely made up.

Please, please think of yourself, without you your Mum will be sunk, no one to open her parachute and no one to light her way.

You go ahead and tell Mum all about the wonderful apartment you have found for her. Tell her her publishers feels she has another book in her and the manager at the apartments would love her to sample all the food and give her opinion on the taste and presentation. Join your Mum in her world of 'I can still do it all'. There are days when I would love to join her there and after her food tasting join her in a nice cool glass of white wine.

There are far worse places to be than in a good care home with your daughter watching out for you, fighting your corner every step of the way and being there for you to chat to. A daughter who has managed a days work, feels fulfilled, might be a bit tired but ha enough till to give her Mum some quality time.

It will be hard but it is do able. You have so much support from TP members.

If you can manage to wait and see how the full time carer works out try it but make sure you have a contingency plan should it not be the way to go.

love as always,


Jay

 

[Big Effort]

Thank you Jay

It could be, it just could be, that I am starting to see how this could work.
The problem with me, and the reason why I am finding hard-core dementia difficult, it that I am not shifting into their world. Even if I delude myself that I am. Actually I am not. I am mentally rigid. Flinching at all evidence of dementia. Obviously there is ample evidence of dementia and I am getting hurt by all the flinching.

I value the truth. And I am clearly playing whist while Mum is playing someother card game. We aren't on the same wavelength anymore. It is clear who has to change her wavelength.

Yep, dinner and a glass of white wine in the restaurant sounds like quite a lot of shared fun. Oh dear, BE, I have left my sense of humour outside the frame. I must be exhausted and brain drained. I KNOW these things. Or knew them. Perhaps I need some anti anxiety anti depressants just to loosen up my thinking.

A penny has dropped. I hope it stays dropped. Mum needs for it to stay dropped as I am forcing her into my reality. Which is a no go area for Dementia sufferers.

Thank you Jay and everyone else. So kindly have you nudged me awake. Night now xx

 

[Hair Twiddler]

I am mentally rigid.

Don't shift anywhere.
Keep drinking the white wine.
Dig up those dandelions.

You are the most metally unrigid person I have never met

 

[Noorza]

I can only tell you why the poem helped me, not why it should help you, sorry BE.

I was under assault, my sister had teamed up with dementia mum, and hid her account, despite not having POA, I jumped into the hole kicking and fighting. I went to a stress management course they showed me the poem and instead of me falling into the hole, I decided to accept it and fight it when it would no longer hurt mum.

So I can go to the court of protection, the office of the public guardian, I can make the bank recognise the registered POA but to time it when mum's paranoia, and mental capacity has so diminished that it wont hurt her.

So the next time I walked around the whole that sucked me in but I'm not going to walk away just bide my time, do nothing for now, but to fight that battle when the time is right. Legally I am right, morally I am right, emotionally when dealing with a dementia mum, the legal and moral arguments don't concur with dementia.

As I see it your mum is already in that hole, it can't be helped, it cant be cured, the hole is dementia. We can't change that. But if her going into a home means that you can avoid going into that hole yourself, then that might me what you have to consider. There is your mother's hole where she already is and she can't avoid it but you can avoid yourself falling into your hole. (I struggle with this, this is idealogical not realistic all the time but another crutch as I see it)


That is my reading of the poem but as a complete anorak when it comes to reading poetry I totally accept it has many interpretations.

And no Poem will protect you from the kind of days, weeks, months, years that you have had.

 

[Noorza]

You are the most metally unrigid person I have never met

That's what I said to my ex husband.