Must get this off my chest


Registered User
Mar 7, 2004
I am silently screaming. Why doesn’t anyone listen. Nights are the worst.
I spend all night hanging on to Lionel in bed. His idea of turning over is to wake me (I am awake) then he slowly gets out of bed, turns around two or three times, and gets back into bed in exactly the same position.
If , in desperation, I sleep in the spare room, he falls out of a double bed. The respite home got round this by putting mattress on the floor (but they had nurses to help him stand up in the morning.)

Had seen O.T. and she was recommending some more grab rails in the shower, have been waiting now 2 months for these.

Telephoned respite home yesterday to arrange some time for planned holidays next year, only to be told they will not book so far in advance, but will ring me back…..
…………yes I am still waiting.

Today the transport for day care was late……yet again. Please stop the world, I WON’T TO GET OFF. Connie


Registered User
Jan 31, 2004
near London
on top of everything else, sleep deprivation is dreadful and so very wearing.

is there any way you could find some immediate respite care for Lionel?

Sounds as if you are pretty much at the end of your tether and of course, Christmas never helps in such a situation.

Best wishes.

If I were nearer I'd do the bl**dy shower rails for you! What is up with these people?


Registered User
Mar 12, 2005
West Sussex

I am with Bruce on this one, you sound desperately in need of urgent respite before you collapse in a heap and you both need urgent care.

We all listen to you and I am sorry I can't do anything practical to help you.

You must put your own health first at the moment and it seems a break from stress and a good few nights sleep are in order for you, can your GP help if you tell him or her that unless you have help now they will end up with another casualty on their books.

Best wishes to you



Registered User
Jul 2, 2005
Connie, are you a member of any sort of Carers' Group? While I have not had to call on my local one yet, when I did go to investigate them, the one thing they did say was if everything got impossible ever, they would step in. What she actually said was that I had absolutely no training for the job I was now having to do, whereas the people at the local hospital had spent years being trained, and she was quite prepared to help me take my husband there, and hand him over!

It sounds a bit dramatic, but if you really are at the end of your tether, then you need an outside party to recognise this, and take dramatic steps.

You've got to get proper sleep, or you will become ill. The mattress on the floor sounds a good idea, so perhaps you could get help getting Lionel up from it from an outside source?


Registered User
Nov 28, 2004
Dear Connie, You have always supported me in times of need, so how I wish I could support you. I would come and night-sit for you if I could, so you could get a good night's sleep. All I know is that there is nothing worse than not getting enough sleep ....hope you get some tonight.


Registered User
Jun 3, 2005
Dear Connie,
I'm so sorry things are so awful for you at the moment. Like the others, I urge you to seek help, urgently. Is your reluctance to do so because of the poor responses received from "the caring professionals" in the past, or because you think you will have Lionel taken away.
Sweetheart, if you become any more exhausted, you could have an accident which forces the issue, and you would have no say in the matter of what happens to Lionel. Please, please go to see your doctor. MAKE them listen to what you have told us, DON'T put on a brave face; cry, weep & wail all over them until they realise that you are desperate for help.
Are you in touch with your local AS Group? Have you ever been?
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Registered User
Oct 9, 2003
Birmingham Hades
Dear Connie
so sorry to hear that you are so down,please take the advice given.
I wish we all lived in the same road or area but------------wishing won't make it so.
Connie I have sent you a PM


Registered User
Oct 23, 2003
West Sussex
Dear Connie, you sound so very tired. Have you got a local Crossroads? I managed to get a night sit once a week, it was a godsend to me as Mum was up all night messing about and sometimes falling etc. If you dont have a Crossroads, see what your local Alz group can tell you about night sits or ask Age Concern. You may have to pay, but it is usually a sliding scale based on ability to pay. S.S. could also advise on this. If you cant get any joy that way, ring a couple of agencies and see if they could do a night sit, even if it was just once in a while it would help. The problem with respite booking is that they are scared of booking too far in advance because it commits them to holding a bed for you. Then if they have an emergency they cant use the bed as it is booked. The only way to look at it is that we none of us know what tomorrow may bring and it could be any of us desperately seeking that emergency bed. Hope the sun shines for you tomorrow. Sending you a big hug, love She. XX


Registered User
Mar 16, 2005
Connie, I know what lack of sleep is like but added to all that you are going through, it must be a nightmare. I hope you get some help soon, as others have suggested.

Best wishes,

Hazel x


Registered User
Mar 7, 2004
Update - and closure.

Dear all, thank you all so much for your support.
I am still exhausted, but have come to terms with certain issues.
I have ordered 'bed bars' from the local mobility shop. CPN expressed concern should Lionel attempt to climb over bars, Lionel couldn,t climb over anything, and I feel they will stop him rolling out of control is back in my court.

One thing I did was to print the thread I had posted, together with some replies, and give them to the CPN to read.......I could see she was shocked. As she always talks to us both together, it was one way of letting her know my feelings.

Surprise, answerphone message late today, she has arranged senior partner at the local surgery to talk to us re Lionels jumps and jerks in the night.

Lastly, respite has now been arranged for my proposed holidays next year.
With so much to look forward too I feel sure, however tired, I shall be able to cope............NO BARS IN THE SHOWER this space.

Once again, thank you, all you wonderful caring people out there, those who PM'd me, those who replied to the thread, and anyone who read same, hey...we are all in the same boat.

Goodnight, god bless, Connie


Registered User
Oct 23, 2003
West Sussex
Result! Well done Connie, its only by pooling our experiences and sharing them, that we can help each other, and make those in authority take notice of this nightmare we cope with on a daily 24/7 basis. I am glad you are getting heard at last and that the respite for your holidays has been booked. Love She. XX


Registered User
Mar 13, 2004
Connie so glad you're getting things sorted. As usual it's a case of shouting as loud as you can at CPN etc. It's the last thing a carer needs but as you know, everything has to be fought for. You are coping brilliantly. Hats off to you. It's not at all easy and yet you carry on with a heart and a half.

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