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Nil Desperandum - but I dispair anyway

Big Effort

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Jul 8, 2012
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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
 

Noorza

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Jun 8, 2012
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Can you try another home where you think Mum may be more at home?

I do feel for you.
 

LYN T

Registered User
Aug 30, 2012
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Brixham Devon
Poor BE

I had to look at many, many CH's until I found one for P. In addition I had to phone many more just to find out what the ratio for carers/residents was.

Eventually the CH for P was found.It felt just right.It was homely.

The right CH is out there for your Mum.

I too worried one wouldn't be found.

Love from Lyn T
 

Big Effort

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Jul 8, 2012
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Hey Noorza,

The grim reality, a reality I have come to really understand since finding the data on Anosophogia (can't spell it, and can't look it up as I don't know how to find my own thread on this), is that
MUM WILL NEVER EVER ACCEPT THERE IS A PROBLEM.
MUM WILL NEVER EVER ACCEPT CARE OF ANY KIND.

Why would she? She is normal. I have the problem.
And right now I do have a problem. An intractable one.
I spent 12 hours in hospital with amnesia. Amnesia due to stress.
I am so stressed.

If I were to find Mum a place in a hotel, she wouldn't be happy. She wants to stay at home.
Thanks for replying though, love BE
 

Big Effort

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Jul 8, 2012
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Hi Lyn,

I don't think I will find the right home for Mum. This is why I haven't really looked. I live in France and obviously I have to find a place quite near to me because Mum doesn't speak any French. There are about three options.

She won't accept any of them.
She is very fluent and clear on that. She will not go into a home. Full stop.
If I put Mum into a home I know (I KNOW with all my being) that she will never have anything to do with me again.

At the end of my teather and oh so tired, BE
 

Noorza

Registered User
Jun 8, 2012
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Hey Noorza,

The grim reality, a reality I have come to really understand since finding the data on Anosophogia (can't spell it, and can't look it up as I don't know how to find my own thread on this), is that
MUM WILL NEVER EVER ACCEPT THERE IS A PROBLEM.
MUM WILL NEVER EVER ACCEPT CARE OF ANY KIND.

Why would she? She is normal. I have the problem.
And right now I do have a problem. An intractable one.
I spent 12 hours in hospital with amnesia. Amnesia due to stress.
I am so stressed.

If I were to find Mum a place in a hotel, she wouldn't be happy. She wants to stay at home.
Thanks for replying though, love BE

There are no happy endings with dementia. I think Mum is showing signs of that long and complicated word too. Somedays she is aware she is losing it, other days she is diagnosing me with everything from depression to anything she can think of rather than accept it's her.

I am so sorry you've had such a disappointing day, well if you are like me devastating day.
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
BE, I'm sorry things are so black for you just now. Have you seen a doctor recently? It sounds to me (and I'm not a doc) that you are suffering what used to be called an Acute Anxiety State, and you need help GP get you through it. (I'm sure there's a high falutin' name for it these days).

I think you really need to get your mum into care, even if it's only for a respite break. You just can't go on like this, you'll be in hospital yourself.

Please see your doc and insist that you need help. Please.:(
 

Big Effort

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Jul 8, 2012
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Thank you Noorza.
The devastation is just in my head. Actually it is no different to any other day in Dementia Land. Mum is sitting indoors (it is 35 C plus in the shade here) watching Jane Austin ("Very interesting" is her daily comment on this). Her front door is locked, actually because she is angry with me, but if I asked her why it's locked, she say "Because you told me to lock it."

My heart feels thus:
I feel as if I am driving full tilt at a cliff. If I don't step on the brakes now I will drive over the cliff. The problem is I know there are no working brakes on this vehicle. So I am going over the cliff.

However I wish you a lot less desperation in the very near future! May better times begin for you now. Sending Best Possible Outcomes your way as I write. xx BE
 

starryuk

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Nov 8, 2012
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Oh poor you BE. You really sound FED UP! I don't blame you. A very difficult situation.

My uncle, in his late 80s has cared for my aunt for some years. She is now in an advanced stage. He couldn't manage on his own any longer but doesn't want my auntie to go into a NH/CH.

So he has started to employ full time carers who live in. It has made such a difference to my uncle's life. There are 2, who do a 3 week shift each, I believe. He says it is marginally cheaper than a CH.

So maybe your Aussie carer will turn out to be a godsend. I do hope so, you sound desperate.:(
 

rajahh

Registered User
Aug 29, 2008
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Hertfordshire
I have just been to visit a home this morning with the possibility of placing Gordon there.

The manager was so enthusiastic, he obviously lives and breathes the home. The staff to resident ratio seems wonderful 1 staff to 3 residents or at the most 4 residents. at night 1 staff to 7 residents.

No strict timetable, I am so sure Gordon would be well cared for there, and without the impatience of me.

Still not committed of course, just looking. Can't make the final decision. BE I know how hard it is, I could help you but I cannot help myself!!!!

Sending love Jeannette
 

LYN T

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Aug 30, 2012
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Brixham Devon
Hi Lyn,

I don't think I will find the right home for Mum. This is why I haven't really looked. I live in France and obviously I have to find a place quite near to me because Mum doesn't speak any French. There are about three options.

She won't accept any of them.
She is very fluent and clear on that. She will not go into a home. Full stop.
If I put Mum into a home I know (I KNOW with all my being) that she will never have anything to do with me again.

At the end of my teather and oh so tired, BE

Oh BE

I'm really really worried that the stress is becoming too great for you. You have already had an attack of amnesia and you do sound at the end of your tether. I'm so sorry, but your posts seem so sad.

If you really can't contemplate even respite care then do you think you can last until the carer arrives?

What a problem. What can be done? Do none of the CH's have english speaking carers?

What a terrible burden to carry.

Thinking of you, as always

Lyn T
 

Noorza

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Jun 8, 2012
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Thank you Noorza.
The devastation is just in my head. Actually it is no different to any other day in Dementia Land. Mum is sitting indoors (it is 35 C plus in the shade here) watching Jane Austin ("Very interesting" is her daily comment on this). Her front door is locked, actually because she is angry with me, but if I asked her why it's locked, she say "Because you told me to lock it."

My heart feels thus:
I feel as if I am driving full tilt at a cliff. If I don't step on the brakes now I will drive over the cliff. The problem is I know there are no working brakes on this vehicle. So I am going over the cliff.

However I wish you a lot less desperation in the very near future! May better times begin for you now. Sending Best Possible Outcomes your way as I write. xx BE

That make me think of this poem, thought I would share it with you.


http://lifelessons4u.wordpress.com/2009/09/30/how-life-works-theres-a-hole-in-my-sidewalk/
 

Big Effort

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Jul 8, 2012
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Noorza,

I love that post and poem.
But tell me, coz I'm curious.
She falls into the hole, the same big hole three times (that is me I am sure, except I have fallen into it 1000 times).
So this smart lady's advice is for me to recognise that the hole is there and to fall in with eyes wide open (perhaps, on reflection, this is where I am at, I know this hole in the sidewalk intimately).
Chapter 4 offers remedial treatment - to avoid the hole by walking around it. Ah but Noorza, here lies my conundrum. If I avoid the hole and stay safe and sound, it entails tipping Mum into a hole of her own.
And chapter 5 suggests walking a different route altogether.
THis too I can relate to. This is what the Buddhist approach would suggest. Don't suffer, just change your perspective.

HOW DO I CHANGE MY PERSPECTIVE?

The truth of the matter is that I will have to change my perspective. Learn to live with it and love it.
Perhaps this is why my speed drive over the cliff seems more refreshing..... at least I imagine the sea at the base of the cliff. Refreshing. And today is hot.

But I am just being childish. I do know that there is no one else, siblings all invisibles, and so I will cope. Just acting out today. Because I have had enough. See, still acting out!
 
Last edited:

Grannie G

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Apr 3, 2006
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Kent
HOW DO I CHANGE MY PERSPECTIVE?

The truth of the matter is that I will have to change my perspective. Learn to live with it and love it.
.

BE you do not have to love it. You just need to accept it. That is the Buddhist way. The Middle Way.
 

lilysmybabypup

Registered User
May 21, 2012
1,263
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Sydney, Australia
Oh BE, it really is the most devastating prospect, isn't it? I have been on 500 different scary emotional rides this past 6 weeks and understand completely your abject despair.

What I have learned is it doesn't get easier, the guilt doesn't go away but things start to occur which point to the fact you have made the right choice. You know I put off arranging respite because I feared it would cause such sadness and anxiety for Dad. We skipped right past respite to permanent and since then Mum has become quite ill. If he had come home I don't know where Mum would be now, at least she can rest. I still can't switch off the guilt, and Dad has gone from bad to worse.
I think your options could be, find respite for a bit until your live-in carer comes, try to find a permanent place and put her name down if there's a list, in case the carer doesn't work out.

I don't know it never feels good or right, and waiting until it feels that way is fruitless. You can only do what you can do, and you must save yourself because you can be saved.

Sending you many hugs and rivers of peace and comfort.

Stephanie, xxx
 

CollegeGirl

Registered User
Jan 19, 2011
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North East England
Oh BE, my heart goes out to you. Please don't crash. If one of you has to be sacrificed, let it be your mum. That's what I'd say to my daughters. Let it be me.

BE, you still have a lot of living in front of you, like I do. I couldn't give up my life for my mam, I just couldn't. But I would for my dauhters, if it meant they could live theirs. Am I making sense?

We had a crisis yesterday. And yet still dad chooses to plod on. The end is coming, I can feel it. One way or another. It's just a matter of when.

Sometimes the time comes to choose. Choose you xxxxxx
 

Big Effort

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Jul 8, 2012
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Hello Rajahh,

Oh I don't know what is going on. Is it my (hubby's computer) or is it the new dratted forum..... I can't copy and paste a quote.

Jeanette,
If I could find a place like this for Mum she would be in before I could say boo.
However Mum speaks no French. Nor could anyone expect her to learn it with fully fledged Demetia (i.e. the situation won't improve language-wise).
If I brought her to UK where my invisible sister resides, retired, and could visit, she told me she would have me arrested for "importing and abandoning and elderly person". Brother at home has had an aneurysm so I think he can't do much caring as he needs to get his life on track. So that leaves France and the language barrier.

I feel trapped. I start work in September. Trapped. Falling into Noorza's hole (see post above).

Jeanette, I think both you and Gordon would thrive on this. No need to rush. You are so brave for going to look. So am I. I went. I asked all the right questions in French. Everyone understood MY situation. Yes, I am in a dreadful state of grief. No one understood that this might be dreadful for Mum.

So I am the person who pushes Mum into Noorza's hole. It is a bottomless one because no one climbs out of it. It takes courage and desperation to push. Even thought Mum tells me I am a monster, I'm not really!

xx BE
 

Big Effort

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Jul 8, 2012
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Hi Skye,

Acute Anxiety State.
That about sums it up.
My GP is on holiday. How about that?
Will start googling Acute Anxiety State. Need more data.
Whatever it is it feels very bad. And I don't want any more amnesia - not fair on my special man.
Thanks for taking the time to comment - you are special to me, you know that.
As are the rest of you! I do not know where I would be without you.
Love BE
 

Big Effort

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Jul 8, 2012
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Dear GRannie,

I stand corrected. You are absolutely right. It is about accepting.
What do I accept?
That I cannot go on like this?
THat I cannot put Mum into a home?
The Middle Way is a tough one because I stand at a fork in the road.
Bear with Mum and her Dementia.
Or bear with putting her in a home and watching it kill her.
I suppose the answer is always just live the moment.
Every moment is bearable.
I shall think on this. Love BE