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Nil Desperandum - but I dispair anyway

Big Effort

Account Closed
Jul 8, 2012
1,927
0
Peace in my heart

I go to bed now with peace in my heart.... and a strategy in my mind.
The aim is to make that pot hole look like the prettiest pothole on the planet.
A welcoming pothole.

No, Noorza, I don't want to occupy that particular dementia pothole. But sometimes I wonder if half my battle isn't a fear that this may be me twenty years (hopefully longer) down the line.

I haven't got perfect answers yet. Just ideas from you guys. And I think the health care professionals know I cannot continue as I am. That Life with Less Dementia is calling me. And the amnesia - that shook me to the roots.

Thank you all, everyone of you for walking me through my Grim Valley today, and encouraging me to look skywards, for there was a magnificent dawn to behold, one of light and hope and beauty, and by looking at my shoes and focusing too narrowly on my troubles, I almost missed the silver lining.

Sincere thanks, night, sleep tight and thank you for letting me get some creative sleep too, BE
 

Spiro

Registered User
Mar 11, 2012
520
0
BE, I hope that by the time you read this you will have had a good night's sleep.

Off the top of my head, here are a few of my observations and suggestions.

I live in France and obviously I have to find a place quite near to me because Mum doesn't speak any French.

Language seems to be the main problem. Would she be so resistant to receiving care if she were living in an English speaking country?

At the risk of sounding flippant, your Mum didn't come to France to go into a nursing home.

  • If I were in your position, I would want to have a cast iron contingency plan in place, in case the carer from the UK doesn't work out. Does the carer speak French?

  • There is a branch of the French Alzheimer's Society in your area. If you haven't contacted them already, maybe now is the time to do so.

  • Have you considered looking at a home in Ireland (you're on home ground there) or at push, the Channel Islands - a half-way house solution?

August is the holiday season. Perhaps you could suggest your Mum would like a short "holiday" in an English speaking country, because she speaks such excellent English. Plenty of activities and mental stimulation with people on her wavelength and a way of practising her English language skills. ;)

  • It could be a way of buying you time and giving you and Dearly Beloved much needed respite.

  • You would then have time to track down French nursing homes with staff who speak English. Given the number of Brits who have retired to France, there must be some. Maybe the French AS could help.

  • In September, you are planning to start work. Has a date been agreed? I wondered if there might be some contractual issues if you didn't start then.

Caring for and organising care for loved ones is a time consuming process; it is physically and emotionally draining, as you well know, BE.

You need to think of your own needs right now.

Bonne chance!
 
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1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
), 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

Your comment reminded me of my MIL. The first time I took her to an Alzheimer's drop in centre she moaned about all the old fogies! Some of them looked like your quote above.

Hence I decided MIL would never fit into a day centre.

Then I got desperate and so she now goes to the day centre. The first time she went many looked like your quote. However she loves it and says nothing about the others. They also say she is sociable and takes part in all the activities

So what I suppose I am saying is we think they will react or act in a certain way but maybe they will not. We do not live in their world however much we try. I hope that makes sense
 

zigandzag

Registered User
Mar 24, 2012
272
0
Birmingham
Hi BE - I'm sorry you've had a rough few days but that you appear to be a tad brighter now. I always read your posts as I find them really enlightening and you write so eloquently - you evidently got that off your mom too!

So what I suppose I am saying is we think they will react or act in a certain way but maybe they will not. We do not live in their world however much we try. I hope that makes sense

1954's comment hits the nail on the head for me. As carers we spend all of our time worrying because we are viewing our loved ones lives through our eyes. We so want to make everything better for them, that's human nature.

It's so hard to try to step into our loved ones world - because however much we try - it's impossible to imagine what its really like. And maybe somewhere in there, there is a tiny tiny bit of comfort that they are not fully aware of how poorly they are.

Sorry I'm rambling and not sure if I am making sense - but I needed to post to let you know you and your mom are in my prayers.

x
 

Wildflower

Registered User
Apr 6, 2013
227
0
Brighton
Dear BE, All I can do is send you my love. I have no answers, but I do thank you from the bottom of my heart for your honest and articulate posts. Much love xxx
 

Pross

Registered User
Mar 2, 2013
221
0
South east
Hi BE, I'm late catching up with your post. Haven't been on TP for a few days. I was really anxious for you at the start of this thread but by the later posts lots of positive thinking was starting to emerge. Love the idea of selling a care home as a retreat for journalists! But gardeners and cookery writers sound good too. Very creative thinking!
But things may be a bit easier for you with the live-in carer - it could be that she becomes the target of your mother's hatred and scorn and you revert to being the darling daughter!
Whatever her reaction, just remember it is the illness speaking, not your mother, next time she says anything hurtful to you. Work at not taking it personally. No way would she want to be the cause of you becoming ill, were she in her right mind.

Hang on till help comes in mid August. Not much more than a couple of weeks away.
For your own sake and that of your family, don't get dragged down into any holes!

Sauve qui peut! Pross. xx
 
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blackers

Registered User
Mar 2, 2013
18
0
Hi there,

I have already written this post once and sent it but it disappeared. I am using a different computer as mine has died, so perhaps that is why.

I would have liked to have posted this in my Mum's and My Journey (don't know exact title as I can't find it anymore). But desperation makes one post anyway.

I am not in good shape at all. No sleep at all two nights ago, don't know about last night, but I feel so so so tired.

My best beloved and I visited a care home about 8 mins drive from here. It wasn't inspiring or reassuring. People (staff) seemed kind and relaxed. But the lock down floor had about 6 people in the TV room, all with their backs to it and in various states of sleep/comatose. This stage seems easier for me to stomach as the person is but a shell.

The second floor is where my Mum would go. There are three converging corridors, all look very similar, and all painted the same colour. So I am sure Mum would have huge difficulties finding her room (a criteria for staying on the open floor and not being put in lock down). Also to get up and down to other areas there is a lift. I do not believe Mum will be able to understand and operate a lift. So again I am concerned.

It seems as if I am damned whatever I do.
A care home is just what Mum would dislike. It is a care home. And she will fight that tooth and nail.
However I know I cannot manage the dementia aspect for much longer here at home. I really like old people, and even have run courses in film-making for the over 80s. I could interact with the inhabitants of the care home, but I find it very difficult to face Mum and her behavior.

Today I am keeping out of her way.

Yesterday she had a very lucid flash (I may write another post about that), but it was like having Mum back. She was so loving, she said she needed to go into care because we should be free. I managed to meditate after that, something I used to do regular as clockwork until about January.

Yesterday after her loving and candid discussion with me, I meditated so deeply. It was not to last (the good phase, not the meditation). I then observed a strange phenomenon.

A nasty feeling just under my ribs returned. I suppose I have this on an ongoing basis so had become immune. But it left me for that glorious window of lucidity, and so I noticed its return.

It is this feeling/sensation that prevents me from meditating. I think it is a physical alarm bell in the pit of my stomach. Drawing my attention to the fact that all is not well.

The problem is I cannot make things well.
If I put Mum in care, she won't find it acceptable and will never forgive me.
If I don't put her into care, I will break.

It is a very frightening impasse.
I am crying all the time.
This is way worse than her death.
I am in dispair.

A live in carer (Aussie) arrives sometime mid-|August.
Will this ease my inability to be around Mum's dementia?
I am at the end of what I can cope with, yet I see no dawn in sight.
BE

Dear Big Effort,
I remember when you comforted me regarding my aunt last year along with another lady. You were unable to offer advice, but your support was very endearing and kind. Please do not beat yourself up over your mothers illness. It is indeed very cruel. I too have a permanent knot in my stomach which never leaves me and am tired, even though I sleep. It is the intense stress you are going through. Because you see your mother in a disturbed state it unsettles you, with nowhere to turn. I too have no answers, but you are a very sensitve, caring person. This is your mothers illness, please don't be so hard on yourself.
 

60's child

Registered User
Apr 23, 2013
588
0
suffolk
Dear BE
I am sorry to read all you are going through. Please dont sacrifice your own health for your Mum. You have done so much for her and are still doing so. Some things we cannot change. Your Mum will be ok because you will make sure of it. You need to survive this intact as you have your whole life ahead of you. White lies are acceptable in dementia. I realised this very quickly. I dont have any advice to give, nor am I good at writing insightful posts but I wanted you to know I am thinking of you at this very difficult time.
 
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