• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

I can never win

barraf

Registered User
Mar 27, 2004
308
Huddersfield
I can never win.
It is beginning to get on top of me; the fact that I cannot keep in front of the never-ending cycle of things that must be done. I feel to be playing perpetual catch-up, as fast as I remove one thing from the workload another three seem to be put on. It is not the physical work, but the fact that I know things will not get better, only worse. Matters are made worse by the uncertainty of what will happen next, just when you think you are winning something unexpected occurs and you are back on the merry-go-round. Non of this is helped by Margaret’s fairly recent aggressive and abusive attitude; at the best nowadays she is unhelpful, at the worst unbelievable. All of which is entirely foreign to her former nature. I of course know that it is the disease and not Margaret, but it isn’t easy to be objective or to distance oneself, when in the effort of trying to get her ready to go out, or to go to bed she is being as difficult as anyone can be. It is beginning to affect our social life, (what little we have left) as she is now being very abrupt and graceless with other people. Although most of the people we mix with are aware of the problem they are finding it difficult to accept her behaviour. Even her sister gets upset and takes it personally despite my assurance that she is like that with everyone and can’t help it. I am hoping that it is just part of the downward cycle and that will eventually pass. On her last assessment she was down to 14, and I think that she realises that she is regressing and can’t do anything about it. So she takes it out on the world about her, which in the main is me, she does have rare moments when she must feel some remorse, as she will occasionally say thing like “I’m sorry I shouldn’t have said that”
I know I am moaning but there is no one else to moan to, apart from the support group once a month and even there your time is limited, as the rest of the group need their turn to get it off their chests.
I feel a little better having written all that down, hope I haven’t bored you all to tears.
All the best
barraf
 

Kriss

Registered User
May 20, 2004
513
Shropshire
No Barraf - not bored to tears but once again they are there. Dad would often apologise for "doing daft things" after a partiicularly bad sundowning event. Like Margaret and many others it was all so against his former nature, so out of character to be abrupt or rude or aggressive. It was perhaps even more heartbreaking knowing that he realised how he had been - how dreadful that must have been.

We just had to keep reminding ourselves it wasn't him it was the AD. And yes because we knew it was spiralling downwards it was all the more upsetting and depressing.

The only way we got through was with the "one day at a time" outlook. By shortening our view every "good" moment, however momentary it might have been, could be clung to. Of course Mum and I had each other to share the load and I know many are not so fortunate.

I wish I had discovered these pages in those dark days - its helping me even now to come to terms with it all. But the disease took years to run its course and the healing will probably take as long.

To have had such a "highlight of the day" to post yesterday about Aunty was so wonderful but I know they will become less frequent. I will cherish every small thing - you must try to do the same.

It sounds like you need a break - even a day will help - the other guys on the site will probably come up with the wise words on respite etc - I'm afraid we never had the opportunity to take any until near the end with Dad.

Meanwhile keep moaning!

Kriss
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Barraf,

For so many of us 'out there' this forum is a lifeline. Who else is going to listen to our moans? Who else REALLY understands, except for other carers?

Sometimes I could scream about the endless boring daily routine and mind numbing conversations about the same old obessional stuff. Finally when one collapses in a chair in the evening, it doesn't help one bit to know that you have to do it all again tomorrow!!

It gets to a point where sometimes you feel you simply cannot go on; cannot face another single minute of being ground down by tedium and endless daily chores.

Barraf, don't try and soldier on alone. We all need help at some stage and we all deserve a break from relentless stress. It's not weakness to ask for help at any stage. In fact it is essential that we do. All carers have to been physically and mentally fit because if we collapse in a heap, then our loved ones suffer too.

Moaning is good for you!

Jude
 

Mjaqmac

Registered User
Mar 13, 2004
939
Dear Barraf

You are not alone. Caring is the hardest job in the world. People (other than other carers) are not aware of the physical and mental strain it causes. Then there is what you are feeling on the emotional front, watching your loved one suffer and change as you stand by feeling utterly helpless, alone and floundering under the weight of this terrible burden.
I care for my mother. I had been going constantly with the 24/7 care, hearing about respite, thinking, that's all very nice but nothing bad will happen to me. I couldn't bear the thought of putting my mother anywhere, I was the carer, it was all my responsibility. It wasn't until I collapsed 3 weeks ago (I am 38 and resonably healthy) that I realised that I cannot be all things to my mother at all times. It was through sheer physical exhaustion of the daily routine, and the mental torture of watching this illness rob my lovely mum of her memories and personality. Fortunatley for me I broke down in front of a physiotherapist whom was visiting mum at the time, and it was only with her kind help that mum was in a beautiful respite home round the corner from our home, within a week or two. It has all worked out beautifully and I never thought it would. I have needed this break to recharge my batteries, and from standing back from the terrible daily grind of basically just getting through another day. It is only from being away from the situation that I see how desperately near the edge of a total breakdown I had been. And that wouldn't have done either mum, dad or I any good!
Do talk to others here and at your group. Family and friends do not understand what it is like to care for someone 24/7 and watch this terrible illness ravage your loved one. They all have their own agendas for the sole carer and trying to talk to them of your distress and hardship will only result in more stress, as it will not suit them to hear that you are struggling.
Others on this site are going through what you are and have suffered worse horrors still. They will help and encourage you. You really DO NEED A BREAK occasionally, for your own health's sake, you can begin to hate the one you love if you can't stand back occasionally.
In my opinion the worse thing about being a carer is the terrible isolation, feeling you are the only one. There are others here Barraf. You are obviously a very loving and special person to be looking after your loved one and caring as you do. Don't ever forget that. Remember the strength it takes to do this, to stick with it, but that strength needs to be topped up sometimes to enable us to keep going. Carer sounds like such a soft word, but at the bottom of it we are as hard as nails, we have to be for the sake of the one you love, but at the risk of sounding like a Hallmark card, you need to love yourself a little sometimes to keep this determination and strength going.
Advice recap Barraf.... Talk to other carers and take some time out for yourself even if you can only manage a few hours. You won't realise how much it helps until you take that break. Your loved one will benefit too as you will have more to give her when you feel refreshed.
Thinking of you, and willing you through the bad times.
Magic.
 
Last edited:

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Barraf
let me bore you with my answer
Day to Day!!
I moan,I swear,I rant my wife has forgotten in zero time so it doesn't hurt her.
I am working harder now than ever before,but I will look after her as long as I can.
A little help now from crossroads and a cleaner,so things are a little better.
Off now to Weston for a week??????Different scene ,same jobs same questions.Hope we last the week
Keep your chin up
Norman
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Barraf

At first sight it seems as if you can never win, but try demoting yourself for a while.

For a time, give up being the Commander In Chief of your Care Forces - who can see the Long View, and who has to try and marshall his resources to fight the battle over the long term.

Demote yourself to a trench warrier whose only task is to get through the next task.

You can make sure you don't lose some of the small ones, even if you get a few setbacks. You can even win a few - just see a smile, or a moment of clarity to realise that.

The sense of responsibility can also be less when one is concentrating on knocking off problems, one by one.
 

barraf

Registered User
Mar 27, 2004
308
Huddersfield
Thanks to all who have replied to my posting
It helps to talk to people (even electronically) who understand what we are trying to cope with.
I have decided to contact Crossroads with a view to getting a little time to myself occasionally. What I shall do with it I don't know.
Feel a bit better today, I am sure it is the result of all your letters of encouragement.
Thanks once again
barraf
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Barraf,

Do contact Crossroads as soon as possible. They generally have a waiting list for their voluntary care services, but can offer up to 3 hours per week once you are registered and they have an available carer.

Get on to your local authority website and access the Community Care Service. These people are linked to Social Services and will arrange to give you a care assessment. You will then be entitled to a possible care allowance, as well as vouchers which you can exchange for carer services up to a value of around £2000 per annum.

Also, contact your local Doctor who will be able to put you in touch with a Consultant Psychiatrist and your local CPN. Day care services are also available through this medium. They will also be able to arrange for Respite Weeks as well.

Every hour that you can get to relax is very valuable.

Best wishes,

Jude
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Hi Barraf, so sorry to hear you are having such a hard time, I know only too well the pit you are in. With regard to Crossroads, not only do they do a three hour respite, for a small fee, you can get a night, a whole night's sleep that is! I had it for mum for nearly all of the last year of her life and it was a Godsend. Also, have you thought about day care? Again, Crossroads did a day club in my area and mum went every Monday. I also got her into daycare EMI, gradually increasing the days to meet her/my needs as the demands of caring increased. Also respite, you may feel guilty at first, but do it! The break will give you the strength you need to carry on and a chance to recharge your batteries. Please never think you are boring us, we all have a common bond here, we understand, we want to help and we are always willing to listen. Have a rant, have a laugh, but most of all have the support. Love, She. XX
 

Claire

Registered User
Mar 31, 2004
88
Coventry
Dear Barraf

I think we have all been in your situation, and it is so stressful. No-one who hasn't been in the same situation can ever understand. I struggled to cope whilst working full time, although at least I was able to spill it all out to my workmates, who are all stars. In the end I felt as if I would crack up, and at that stage I knew I had to do something about it. Mum started going to daycare, and I found I had time to just be myself for a few hours. I admit getting her there the first time wasn't easy, but she soon grew to depend on it, and was anxious for her minibus to arrive. The first time I arranged respite care wasn't easy either, but I'm so glad I did, as it really helped to have a couple of weeks break, and she was fine when I got back. She has now gone into a care home, and I'm finding that a bit difficult to cope with, as, like all of us, I feel I should look after her myself. But today we've had a little outing and it has done us both good. I hope you can get a little help soon. Take care of yourself.
 

storm

Registered User
Aug 10, 2004
269
notts
hi barraf,my heart goes out to you,i understand every word you said as i feel only other carers can.I have learnt that when i am having a really bad day ,the best thing to do is just get through it and hope tomorrow will be better.I have been so low at times that ithought i would never be able to carry on,but i hang in there and low and behold there comes a small ray of light and we are back on a even keelhow long for i dont know i just enjoy it while it lasts.Have you tried the red cross my local branch are coming to see me to arrange a free sitting service once a week for a couple of hours with it being in our own home mum might accept it better and i feel like you where will i go for 2 hours?never happy are we!Just remember there are people here that know exactley how you feel and really do care. carers care luv storm
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Free Time....

Dear All,

In good weather, I force myself to go out for a drive, or a walk even if I don't feel like it. Anything to get out of the house for a while. If I stay around then I end up talking to the carer and the oldies and never feel as if I've had a break at all.

In wet weather, I hide in my 'study' and read a book, but still find that I have an ear waving in the direction of my parents. It can be very difficult to 'turn off' sometimes. Reading a book in the bath is also a good distraction.

You need to do something just for YOU.

Jude
 

Mjaqmac

Registered User
Mar 13, 2004
939
Mum's sitter service comes from Help the Aged. That's another good source to explore.
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Hi Guys,

I'm going to start a new post on 'Where to Get Help'. If everyone can chip in with idea - just the name of the organisation and perhaps a national website address if you know it , then we can post the information in Resources later.

Thanks all,

Jude
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear All,

Ollie the kitten, is turning into a great distraction from feeling blue. Since he arrived we have all quite forgotten about being miserable. All our energy has been chanelled into looking after him - it's quite a challenge! He is also keeping the oldies entertained for hours, which is what I had hoped. Nothing like a spot of 'pet therapy' to cheer everyone up....!

Jude
 

barraf

Registered User
Mar 27, 2004
308
Huddersfield
Thanks again to all who replied to my original post.

I have now contacted Crossroads which has a two months waiting list, and Gateway (which is our councils community care service) and on the advice from Gateway I asked the Social Services for a Carer's Assessment.

They were quite reluctant at first because of my age, apparently afer 65 you are not really eligible, but when I persisted they said there was a carers fund which they might be able to access. This they said would necessitate a Carer's Assessment, which was what I had asked for in the first place. The mind boggles, how do these people hold their jobs.

So now I am awaiting further developements and writing a detailed account of how each day is filled with caring, to present to them when they finally come to interview me.

Will keep you posted on further developements of this exciting saga.

Cheers barraf
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
well done Barraf, keeping a diary was something I did with mum for over 5 years but it proved invaluable for many queries put to me. Hang on in there, insist on your rights and keep at it. Hope to hear you are getting it sorted real soon. Love, She. XX:)
 

Chris

Registered User
May 20, 2003
243
DOH leaflet on Carers Assessments

Barraf I found the relevANt Dept of health leaflet at http://www.dh.gov.uk/assetRoot/04/08/02/37/04080237.pdf

The most relevant bit I think is - What your assessment is for
Your carer’s assessment is your
opportunity to tell social services
about the things that could make
caring easier for you
Some things you may want to think
about:
➢ Do you get enough sleep?
➢ Is your health affected in other ways?
➢ Are you able to get out and about?
➢ Do you get any time for yourself?
➢ Are your other relationships affected?
➢ Do you want information about
benefits?
➢ Are you worried you may have to give
up work?
➢ Is the person you care for getting
enough help?

THEN WHOLE TEXT IS :-

How to get help in
looking after someone
A Carers guide to a carers
assessment
If you look after a relative, disabled child or
friend and caring has a major impact in your
life then a carer’s assessment could help you.


1. You are a “carer” if you look after a
relative, friend or disabled child who
needs support to live at home. Your
local council Social Services
Department may be able to help to
make things easier for you.
2. They can provide services to the
person you care for. They can also
provide services for you.
3. To work out what services would be
helpful in your situation, social
services need to discuss
• The help the person you care for
needs
• The help you are giving at the
moment
• The services your council may
provide.
The way this is done is called an
“assessment”
4. You as a carer may be involved in
several ways:
• If you care for a disabled child
your needs will be considered as
part of an assessment of needs of
your child and family
• If you care for an adult you can
have a carers assessment to discuss
the help that you need. This can
happen even if the person you care
for refuses help. You should also be
able to contribute to the
discussion of the needs of the
person you care for (their
Community Care assessment).
5. What your assessment is for
Your carer’s assessment is your
opportunity to tell social services
about the things that could make
caring easier for you
Some things you may want to think
about:
➢ Do you get enough sleep?
➢ Is your health affected in other ways?
➢ Are you able to get out and about?
➢ Do you get any time for yourself?
➢ Are your other relationships affected?
➢ Do you want information about
benefits?
➢ Are you worried you may have to give
up work?
➢ Is the person you care for getting
enough help?
6. What sort of services might help you:
• services that give you a break
• emotional support from other carers
or people who understand
• help with household tasks
• help with caring tasks during the
day/night
• benefits advice
• activities for the person you care for
However all carers are individuals and your
local council may provide any service to
you that they think will help you care or
help you maintain your wellbeing. So you
may have some ideas of your own about
services that would help you that you want
to talk through with social services. Other
services that you might want to discuss
with them are those that may help the
person you look after.
Other things you may want social
services to tell you about:
• Local or national support organisations
you could contact
• Other help you could get
• Any charges for services
• What to do if you wish to complain
Contacting social services
to ask for an assessment.
The telephone number of your local council social
services department will be found in your local
telephone directory under local authority and then
community information, or speak to your own GP.
Other useful contacts for carers
Carers National Association 0808 808 7777
(CNA) www.carers.uk.demon.co.uk
Contact a Family 020 7383 3555
www.cafamily.org.uk
Crossroads caring for carers 01788 573653
www.crossroads.org.uk
Princess Royal Trust for 020 7480 7788
Carers (PRTC) www.carers.org
Your local social services department will tell you
about other local organisations.
The Department of Health carers web site may
be found at www.carers.gov.uk
 

Staff online

Forum statistics

Threads
112,794
Messages
1,652,136
Members
63,162
Latest member
Amanda909