"You have to look after yourself..."

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Lindy50

Registered User
Dec 11, 2013
5,242
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Cotswolds
I took my wife for her 6 monthly memory assessment today (didn't go well) and got asked the usual question "do you want a carers assessment" I asked "is there any point" and her face said it all. Unless you turn up with a rope and a wobbly stool then noting is going to happen. It make you laugh when you hear all the politicians speeches about all the things they're going to do, the reality is unless you really are at the limit nothing is available. Simply it would cost so much money that getting us to do it for free is much the preferred option.
K

Sorry it didn't go well today Kevinl. I certainly know how you feel, especially about carers assessments. And our last.visit to the memory clinic was dispiriting to say the least :(

I can't even say take care on this thread, can I? But I hope you know what I mean:)

Lindy xx
 

tropicbird

Registered User
When is 'crunch' time...putting your loved one into a Home?

I have just slept through for about 48 hours non-stop, after putting my husband with dementia/Alz into a Home for people with various types of dementia and Alz.
I am his wife of 50 splendid years and I didn't want to do this.
He IS 80 this year and has had the disease for at least five years, his memory rapidly deteriorating recently to the point he cannot remember how to do anything about his personal hygiene. We cannot have a meaningful conversation. He gets disturbed a lot and rambles. My understanding friends and bought-in Carers for some night-times could see I was getting exhausted months ago. I have been his main Carer for over 2 years now.
People we met out and about who know us were always saying 'remember to look after yourself'...'if you crack up who will be able to look after him?'.... my husband. More than a year ago I began to look at Homes in my area. I didn't like any of them. But that was because I couldn't see myself in them. When I began to write down notes on my husband's progress and behaviour, I realised he was worsening quite rapidly recently, and falling off the plateau he had been on for some months. My helpers, the doctor and friends agreed.
I finally took him to a Residential Home out of hospital. He was in hospital for diagnosed deep vein thrombosis, and had a complete check-up at the same time. I was persuaded to transfer him from the hospital to the Home.
His 80th birthday was two days later, and I was allowed to bring him back to our home for it, to spend with friends. At the end of the pleasant day he spent a very difficult night here, and I was still exhausted, so I reluctantly took him back to the Residential Home the next morning. I had wondered if I could 'keep' him with me for the week, but it wasn't to be.
I have only just got over being terrified that one day, in the Residential Home, he will wake up from all of this - the Alzheimers - turn to me and say 'What am I doing here? Take me home right now. Why am I here?' But as the days go by he seems to have settled into the Home and my fears subside. He sometimes moans about the food in a rambling way, but other days he says he likes it there. I see and hear him engaged in laughter. It is the best Home I could find locally, and I like the Administrator who seems to be a compassionate wise woman. The daily routine seems fine, and the medical side is taken care of as well. I have had to leave my husband in her and her Team's capable hands. I visit when I can. As I said, I have slept most of the time, but can visit more often now I am rested.
You too can be helped to face that decision, and not get too exhausted to make it. There are good Homes near you; the focus is on Alzheimers and dementia now - the press, the NHS, the Government. Our time has come! Good luck!:)
 

Vix321

Registered User
Mar 24, 2015
22
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Same. I know it's well intentioned, but often, it actually makes me feel more isolated because the person saying it doesn't "get it"
 

jeany123

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Mar 24, 2012
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Durham
I remember something similar, when my husband first showed real signs of dementia out of our home, he had been in hospital for a few days and as we were going out the nurse said are you managing at home ok do you need help, I thought what does she mean what help!

She had waited until I was pushing my husband out of the ward when she said this and of course I couldn't respond with him being there, I just said yes thank you, with tears in my eyes,
 
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Lindy50

Registered User
Dec 11, 2013
5,242
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Cotswolds
I remember something similar, when my husband first showed real signs of dementia out of our home, he had been in hospital for a few days and as we were going out the nurse said are you managing at home ok do you need help, I thought what does she mean what help!

She had waited until I was pushing my husband out of the ward when she said this and of course I couldn't respond with him being there, I just said yes thank you, with tears in my eyes,

Oh jeany, this says it all :( xx
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
Kevini you did make me laugh when you said about turning up at a carer's assessment with a rope and a wobbly stool- I'd love to see the SW's face. I do have both these items. There is a cardboard box in the garage which came from David's dad originally and is helpfully labelled old rope and I have a wobbly red stool in the loft. Luckily David is having quite a good day today.
Tre
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
Yes, it is a very hard road we travel as carers.

And I am sorry to say, it is made even harder for me by the thoughtless 'jokes' that appear in this thread.
When someone you love more than life itself (parents out there know what I mean)puts a rope around their neck and steps from a stool and away from you forever, it is hard, try adding that to having your husband leaving you bit by bit every day with Alzheimers', and you will perhaps understand why seemingly innocent jokes send me back to a time and place I cannot afford to re-visit.

There are tens of thousands suffering the loss of someone from suicide.
Some of them will be reading these threads.
I KNOW it is unintentional, but please think before you joke about suicide.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Yes, it is a very hard road we travel as carers.

And I am sorry to say, it is made even harder for me by the thoughtless 'jokes' that appear in this thread.
When someone you love more than life itself (parents out there know what I mean)puts a rope around their neck and steps from a stool and away from you forever, it is hard, try adding that to having your husband leaving you bit by bit every day with Alzheimers', and you will perhaps understand why seemingly innocent jokes send me back to a time and place I cannot afford to re-visit.

There are tens of thousands suffering the loss of someone from suicide.
Some of them will be reading these threads.
I KNOW it is unintentional, but please think before you joke about suicide.

I am so sorry to read this, sleepless. Given the loss you have suffered, I think you are remarkably tolerant of these jokes. You have certainly made me think twice about making well-intentioned but possibly hurtful comments on these threads.

Sending you (((hugs)))

Lindy xxx
 

Suzanna1969

Registered User
Mar 28, 2015
345
0
Essex
I don't take offence when my friends say it because I know it's well intentioned. Also at the moment I am not a 24/7 carer so I DO have some free time and I make the most of it because who knows how long that will last?

What I DID take offence to is the situation I found myself in on Friday last week. I had to go to the Job Centre as I've been forced by financial circumstances to apply for Income Support. I mean, how IS one supposed to live off £62.10 a week carer's allowance when one has a mortgage? Huh?

So, although I'd rather shove wasps up my nethers, I found myself sitting across the desk from one of JCP's employees on a Work Based Interview :confused: even though I explained I have to care for both parents, that although I 'only' spend 50 hours a week doing this I do have to be on call 24/7 which would make me the most unreliable employee ever and that I had in fact been forced to give up my part time job because my company were so inflexible....

And she had the nerve to tell me that it was important for me to keep up my skills so that, when the time comes, I will be able to easily return to work.

Alas because my claim has yet to be approved I was unable to say the following:

'If, by 'when the time comes' you mean when my parents have both had to go into a carehome or have passed on then I am sure you can understand that I am reluctant to think of that right now. Nor am I able to go on the lovely free computer courses you suggest, seeing as the little free time I currently have is spent taking care of my own physical and emotional welfare and preventing my own brain from coming apart. However, 'when the time DOES come' I do think that, with my ten years' experience as a recruitment consultant followed by over 2 years as an Employment Consultant getting the long term unemployed back into work IN THIS VERY JOB CENTRE during which time I consistently out-performed all my colleagues.... well, I think I'll be ok. Don't you?'

Next time, Susannah, next time....
 

byrnedjp

Registered User
Mar 21, 2013
168
0
London
"And she had the nerve to tell me that it was important for me to keep up my skills so that, when the time comes, I will be able to easily return to work."


I find it difficult to think straight and walk upright some days - let alone keep up my work skills - everything stopped for me 4 years ago.

How you can return to work after this is difficult to imagine - i am not the same person i was when i started this.

Bruised , Battered, Angry, Tense, Bewildered and potentially Broken.

#adds to cv
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,336
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72
Dundee
I'd just like to remind folks that if anyone is feeling particularly low the Samaratins provide an 'emotional listening' service. The phone number is -

08457 90 90

The link to their website is here

http://www.samaritans.org
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
Education

If only one person out there has learned a lesson from my previous post, it was worth putting my heart out there.
In my experience it needs more than a call to the Samaritans (useful though they are) to help anyone dealing with loss from suicide. A counsellor with personal experience of such a loss is invaluable, as I discovered.
When you've seen one carer trying to cope with dementia, you've seen one carer trying to cope with dementia.
We're all different, trying our best, with other problems running alongside.
 
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SerenaS

Staff Member
Apr 7, 2011
13,739
0
London
Talking Point is a supportive community, and we offer a space for our members to share experiences and information in order to support one another.

Each member has their own experiences and challenges, and I am sure that no member on this discussion intended to cause offence. With this in mind, I feel it is best to close this discussion.

If anyone reading this is feeling low, please consider contacting someone. I've included details of an excellent organisation >here<.
 
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