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Lost in the jungle

AbbyGee

Registered User
Nov 26, 2018
108
Portsmouth, South Coast
Have finally got the LPA forms signed so just need to find a cheque book and get the darned things sent off.

Looking to the future - I'm not seeing a happy picture. My dear old OH & I made huge efforts to pay off the mortgage and set up ISAs etc whilst we were still working.

We have no kids or family to consider - it's just the two of us against the world. All this paying it off and squirreling away was with the intention of having a happy sunny funny time, like in those sickeningly, smiley, old age adverts, but hey-ho, Mr Alzheimer's came to stay and laughs in our faces.

We're not minted but have enough to live comfortably within our means - because we made the effort to do so. My PWD put his life in the firing line in defence of the country and now the country seems to have him in the firing line again, disarmed, unarmed and alarmed. Now all I foresee is everything we worked for disappearing, being taken away, wrapped up in red tape and delivered to some faceless 'they' who determine our plans weren't worth it. Perhaps we should have blown the lot on foreign holidays, fast cars, booze'n'drugs'n'rock roll - then wasted the rest and relied on the state to provide for our needs.

I'm trying to make sense of the unknown and feeling very down about it all at the moment. I'm not used to the lack of control.

Despite lifelong depression and anxiety my entire working life involved understanding what was what, what was urgent, where the hundreds of thousands (frequently half-millions) of pounds were going, being - amongst other things - a systems analyst understanding people's needs and wishes and balancing those needs and wishes against the practicalities, legalities, and finances, making all safe and secure, writing the contracts, getting it done, being the mover and shaker. The organiser. The putter right of thing and maker-better of wrongs. The 'go to' person. You want a conference organised in two days for 125 people with security, seating, audio-visual, name badges, conference packs and catering - no problem! Living on the edge and getting the adrenalin buzz.

The unused adrenalin's still there and bubbles under the surface and comes out as anger and passive-aggressive behaviour. The buzz has died, as surely as the lost bees of summer. I'm now just the 'lady that does'. I'm a shadow, a wraith of the laundry and kitchen. The wine bottle seems a good bit of respite. Not good. (The wine's good but the idea is a bit dodgy.)

I'm lost, lost, lost. And drowning in nothingness. I know I/we need some help but don't know what help or whether it's the right sort of help for me or us.

I'm not even sure why I'm writing this. All I know is - right now I could dig a hole in the floor, pull the carpet over my head and stay there.

Sorry guys and gals. I'll stop whinging now. :) All will be well in the morning.
 

Lirene

Registered User
Sep 15, 2019
236
I could have written your post which pretty much sums up how I feel the majority of the time. My sympathy, thoughts and prayers are for you and everyone - sorry I have no answers xx
 

AbbyGee

Registered User
Nov 26, 2018
108
Portsmouth, South Coast
I could have written your post which pretty much sums up how I feel the majority of the time. My sympathy, thoughts and prayers are for you and everyone - sorry I have no answers xx
Thank you @Lirene. Yeah, life's a bitch and then you die. I'd like to live a little more before that happens though.

Just so pi&8"d off right now. Apart from caring for my dear my OH, I think I need to be looking at an older sibling who seems to be needing more attention than I'm giving right now. D'oh!

I don't want to go back to the caring until death that I did before - a situation that wrecked my first marriage and left me a washed out shell living on pure energy alone.

I want to go run in the crashing icy surf, I want to go shout at the beauty of sky from the hilltop, I want to go sing my heart out in the woods, I want to celebrate mother moon when she peeps from behind the clouds, I want to lay on my back in the long grass and stare at the summer clouds whilst sucking a spliff (I didn't say that last bit). I want to drive too fast and laugh loud and long and dance until I collapse. I want to run free and whole and solid in belief of myself. I want to be me again. I want my man back. But that ain't gonna happen, is it?

Where did my life go? Is this all that's left? Maybe I had too much too soon and used up all the good stuff. Now's payback time!
 

Sam51

Registered User
Oct 23, 2020
22
Life's hard sometimes I feel I have lost the mum I had and she will never come back and yet I haven't lost her and feel like I can't help her .
It's very difficult ,sometimes to hard to bare !
Sending big hugs to you 💌
 

jennifer1967

Registered User
Mar 15, 2020
1,220
Southampton
you sound well miffed off and life isnt fair and dementia is even worse.hard when all you planned for is turning to dust. its hard to feel this is as good as its going to get and its all downward. my husband has vascular dementia and he has gone downhill very quickly in the last 18 mths. i wish i had some answers but like you im beavering away and getting no where fast. at least you are not alone
 

Sam51

Registered User
Oct 23, 2020
22
Why is there so little help ?
Mind you my mum won't agree to carers or any help so I suppose you can't help someone who doesn't want help .
Is there help out there ?
How long does it take to move forward after a memory assessment ?
Do tablets help ?
Any advice would be great
 

Lirene

Registered User
Sep 15, 2019
236
AbbyGee our pasts sound so similar as is our present however I am constantly daydreaming of a brighter, brilliant future.
Prayers xx
 

big l

Registered User
Aug 15, 2015
63
Oh so, so familiar but no-one is allowed to say it are they? so here goes. 'WHAT ABOUT ME!!!' The real me. I can feel all those wonderful care-free days and delights AbbeyGee - can I add - through my tears, just being able to be able to walk out into the garden and loose myself amongst my plants. And - oh gallop across the fields with the wind in my face,( even just pop to the shops.) Ride pillion on a motor bike, (start something - anything and finish it without interruption} walk on my own and watch the red kites on the thermals... Just FREEDOM. Yes, I think I burnt my allocation up and, like you, and all the rest of us, I am now a prisoners by proxy to this dreadful disease. Thanks for helping me root out my rant AbbeyGee - ( include me your spliff!!!)
Thank you @Lirene. Yeah, life's a bitch and then you die. I'd like to live a little more before that happens though.

Just so pi&8"d off right now. Apart from caring for my dear my OH, I think I need to be looking at an older sibling who seems to be needing more attention than I'm giving right now. D'oh!

I don't want to go back to the caring until death that I did before - a situation that wrecked my first marriage and left me a washed out shell living on pure energy alone.

I want to go run in the crashing icy surf, I want to go shout at the beauty of sky from the hilltop, I want to go sing my heart out in the woods, I want to celebrate mother moon when she peeps from behind the clouds, I want to lay on my back in the long grass and stare at the summer clouds whilst sucking a spliff (I didn't say that last bit). I want to drive too fast and laugh loud and long and dance until I collapse. I want to run free and whole and solid in belief of myself. I want to be me again. I want my man back. But that ain't gonna happen, is it?

Where did my life go? Is this all that's left? Maybe I had too much too soon and used up all the good stuff. Now's payback time!
 

Philbo

Registered User
Feb 28, 2017
841
Kent
Hi @AbbyGee

My own dementia journey sadly ended in January after nearly 7 years. During that time, there was the ever-present cloud of the financial implications of if and when my wife would need residential nursing care. We have 2 grown up children but although we enjoyed a good life together, we had always been careful not to overstretch ourselves.

We did our LPAs right at the start and I took what steps I could to protect our assets (within the constraints of the LA's rules regarding deprivation of assets). When she did indeed go into a nursing home last September, she had to contribute to the costs, but as it turned out, this was only for 5 months.:(

She was only 61 when diagnosed, so it robbed us of the many things we had planned for our retirement. Like you, I yearned for any form of spontaneity and hated having to plan every day. To watch her slowly disappearing and me becoming a carer, instead of a husband, was devastating - having to pay for the privilege only making it worse.

I have come through it all, determined that this awful disease has taken her, but it sure as hell won't take me too. It is still raw but I am moving on - just in the process of selling the house we lived in for 36 years and hopefully, moving to a lovely bungalow I've found - fingers crossed.

From your posts, it sounds like although it's hard going for you at present, your love of life is still there (albeit, somewhat on hold?)?

I wish you well and let us all know how you get on - plenty of folk here to support you if we can.

Regards
Phil
 

None the Wiser

Registered User
Feb 3, 2020
127
Yet another thread really resonating with me. I can’t add anything useful but just to say ‘and me too’!
Wishing strength for all of us. X
 

AbbyGee

Registered User
Nov 26, 2018
108
Portsmouth, South Coast
OK guys and gals - I'll admit without shame I'm a loudmouth and'voicer' for the silent.
HEY - hear me - HEY - hear my buddies - HEY - hear those who are too stunned into quietness for whatever reason but need their voices heard loud and clear above the hubble-bubble of the daily minging dead rumble of nothingness. HEY - we are NOT silent. We are a crying voice and need to be listened to for ourselves and our much loved others.
I need to find out how I can go shout out loud - I need to find out how to do this before the angst and the angry gets too messy to make sense.
Give me a soap box to stand on. I'll make speeches in the market places and the streets. In the schools and the workplaces. This whole Dementia / Alz thing is too BIG to be ignored so why are we?
 

Pusskins

Registered User
Jun 6, 2020
100
New Zealand
@AbbyGee You have voiced the frustrations and distress that I, too am feeling and others of us in this forum. I had to place my beloved husband into care approx 2 weeks ago. I am bereft and lonely with no family or friends around me. I spend every day crying my heart out. The love of my life has gone. Dead or alive, he will never come back to me. I wish I'd done so many things differently, I never saw this coming. If I was wealthy, I'd have him back in a heartbeat and employ a private nurse to help care for him, but alas, I wasn't born with a sliver spoon in my mouth. We were always careful with money, but never had more than enough. I wander outside into my garden and see all the things MH has built over the years and I break down again. People say to me I should sell up and move to a smaller place, but I can't do that. My memories of him are here. I look out the window and see the mature trees we planted together 20 years ago ... it is hell. You probably won't feel any comfort from knowing that others feel the same pain as you, but I understand what you're going through.