I can't do this............

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
I don't know how to describe this, it seems so trivial compared with others' problems, but my nerves are at screaming pitch and I can't stop crying.

John gets a bee in his bonnet, and his lack of speech doesn't stop him nagging about it.

It starts at about 10.30, when he wants lunch. I get a constant demand of 'When?'. And I do mean constant, like every five minutes.

After lunch, the 'When?' continues, only this time it's for bed. Yesterday I took him upstairs for an afternoon nap, and had a couple of hours peace. But I paid for it with a very restless evening and night. I get little enough sleep anyway, with his bladder problems.

Today I decided to keep him up in the hopes of getting some sleep tonight, and have had the 'When?' all afternoon, culminating in a blow-up at four o'clock when he decided he was going to bed whatever I said, and did -- fully clothed. I persuaded him to come down for some tea, and then it started again.

He's in bed now, but I can't go on like this. I can't explain anything to him, he doesn't understand, and the constant dripping is driving me mad.
 

jenniferpa

Registered User
Jun 27, 2006
39,446
Skye said:
but my nerves are at screaming pitch and I can't stop crying.
Dear Hazel, I think that's the point isn't it? You are so totally on edge and sleep deprived that there is no way that this sort of thing isn't going to be a big deal (not that it would be a small deal if you weren't). Not much to say really, and definitely no way to help, but wanted to say I'm thinking about you.

Love

Jennifer
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,967
Kent
Oh dear Hazel, I do understand.

Even though Dhiren has language, he uses it constantly and repetetively, but unreasonably. Sometimes I am at screaming point, hearing `Manchester` countless times a day, like a cracked record.

But at least I get a full night`s sleep, every night. And I don`t have incontinence to tackle.

I still find myself in tears, most days.

When you went away last week, it was OK. John kept asking for you, but otherwise he was fine. When you returned there was no fall out.

You said yourself, you were ready to consider respite care and perhaps now is the time.

You have good contacts in place, perhaps now is the time to ask them for help.

You cannot continue like this. Prepare to phone someone tomorrow.

Love xx
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
Good advice from Silvia. You are a loving, caring person who has been pushed beyond reason. 24 hour a day care, day in day out, week in week out is an enormous strain on your health and welfare. You have my love and undestanding. Please, it is time NOW to get yourself some rest so use the phone tomorrow and get help urgently for both your sakes. Have you any links to the hospital consultant, or community psychiatric nurse, or admiral nurse or social worker? All of these people should be understanding and offer help.

Love TinaT
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Constant. Every 5 mins is not constant. Wait till you get 1 sentence followed the same sentence - with the same breathe. :) :eek: Thats constant.
No, you have my sympathy. Have you tried diversion tactics. Make a tea & biscuits while dinner is "prepared". The other tactic I have used is to remove myself. I quietly disappear. In the garden, in another room with a book. If you are removed, he has no one to point his anger at. You say about the constant dripping. I recently posted "chinese water torture" in younger ones. I know exactly how you feel.
cris

good luck
 

Whiskas

Registered User
Oct 17, 2006
158
Corby
And a big hug from me too. I know how hard things are when you are tired, well lets face it things are hard enough when you are not feeeling tired. Respite might be an answer. Not an easy decision to make but you need something to help you through so you can carry on caring.
Take as much care or yourself as you do for John and all of us on TP. We need you!!
Cathyxx
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hazel, Sylvia has said it all really.

John survieved your trip to London. You definitly need to put something in place a.s.a.p

Thinking of you, love n'hugs
 

chip

Registered User
Jul 19, 2005
400
Scotland
Skye,
Can you phone the help line to see if they can help. I have phoned them a few times when ever i felt i couldn't cope. Do you also have an emergency contact number. You should have got that from your Social Services, but if they are anything like the Social Work here its up to you to find out.
I also used to lock myself in the toilet. It was the only way to be by myself take a couple of deep breaths Tomorrow is another day for the worse or better.
Thinking of you
 

angela.robinson

Registered User
Dec 27, 2004
520
78
i think anyone who cares 24/7 and lives with only the company of the person with dementia ,will at some stage come to a breaking point ,i think you need to recognise that you have now reached this stage Hazel,i understand your fears of John deteriorating further in respite, as i fought against it myself , untill i was on my knees , and constantly bursting into tears , you have to put this aside now and get the help that YOU need,in the form of respite,or more day care ,whatever it takes ,YOU need this help now
thinking of you . angela xx
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
This is one of those situations when someone who knows nothing about dementia [statistically, that is 90% of Parliament and 100% if NICE:( ] might say - "so what - he asks 'when'.... how can that be a problem?

The most effective way to get them to realise what dementia means is to give them a week, alone, caring in your situation. It is tragic that we can't do that.

Sleep deprivation, loss of liberty, loss of someone dearly loved, frustration, anger, guilt, fear all combine at some stage.

Just one less of those might be manageable, but finally, all get loaded, and it is too much.

Norman's day by day mantra comes in useful to get us to the point where we are able to do something - these problems always seem to flare up on a bank holiday, or similar time. Is tomorrow bank holiday north of the border?

You need to seek advice - it does not necessary mean all your fears are realised - whatever they may be. It might mean another assessment of some sort, or trial of a different medication. It may be controllable in the sort term.

Jan and I had similar challenges and I would retreat to the woods at the bottom of the garden and phone my Mum - and I was 53 at the time!

That was 7-8 years ago. Believe me, I'd go back for a day now and put up with any of it, willingly, just to see Jan look, walk and speak as she was then, even if, at the time, I thought I would go crazy because of her.

It is a hard journey. At present you need to find a course correction that works for you. That should give you peace again for a time.

Please take care.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Thanks for the replies, I have been reading them, and I do appreciate them, just can't reply properly tonight.

It's not a bank holiday here tomorrow, so I'll try and get sone help.

Love to all,
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Dear Hazel,

You give such good advice to us whilst you have an exhausting situation yourself.

Dealing with Dee this morning when she dug her heels in about drinking water reduced us both to tears. But we had hugs afterwards.

So can truly understand your tiredness and inner conflicts of anger and love especially when they go on and on.

Can only send you lots of hugs and hugs, hoping you can feel love coming your way.

with so much love,
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
is a hard journey. At present you need to find a course correction that works for you[QUOTE}

The quote seems to sum up all our feelings for you.

Just thinking about you, knowing I am near that point quite often and it is only time before I am screaming too.

I do hope you can get something sorted to help you - you need a rest.

Take care - we need you. Jan
 

jude1950

Registered User
Mar 23, 2006
182
Lincolnshire
Dear hazel.

I am so sorry you are going through this. I know exactly how you feel ....Jim has been in emergency respite since thursday as I have reached breaking point I cried all day at the Social Workers and at the Cpn's then the following day I cried to my GP. I have not seen Jim since Thursday and I cry because I wonder if he is Ok..It is a no win situation.
I am still feeling absolutely exhausted and not sleeping well even with Jim out of the way...I have been prescribed a slleping pill (just a weeeks supply ) by my GP and I shall take one tonight.

There is a meeting scheduled with the CPN for Tuesday ....they said that the respite bed was only available for a week....the way I feel now is that if they say Jim is to come home I shall walk away... if things continue like this I will not be around to look after anyone the stress is killing me literally!.

Please get some help Hazel you must think of yourself.

love Judith
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,967
Kent
I`m so sorry Judith, the position you are in will come to all of us one day, and it`s terrifying.

I hope the sleeping pills work so at least you will feel rested, but know they will not solve the problem, just give you breathing space.

Take care xx
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Hazel - I'm going to firmly and categorically disagree with you! (That's meant as hug!):)

Yes you CAN do this!!!!!! (I'll come to the 'but' in a minute .....)

You have already been doing this for many years ..... your love, your stamina, your passion is beyond doubt ...... but we all reach a breaking point at times (or recognise we are nearing a breaking point). I've just had one myself as anyone who has read my posts will have noticed ........ known for weeks, months even (and that includes because of your advice as well as many others) that I need more help to keep managing my particular circumstances .......

Where I do know I'm lucky, is that I can walk away .... at least physically if not emotionally. (And no, I don't always feel good about it - but if I feel I can't 'cope' with mum I can simply check she is safe, fed, watered etc and distance myself ready to 'fight another day').

I can barely begin to comprehend how 24/7 carers manage when they can walk away no further than the next room or out into the garden .... I do get lots of 'escape' - even going out to work is welcome 'relief' from the responsibilities that face me at home (or mum's) ......

So the 'but'! Different but strangely parallel universes ..... yes, I CAN do it!!!! I CAN keep mum at home as she wishes, I can continue to do my best for her ... but, but, big BUT - NOT without help, not without support, not without respite, not without allowing myself a break, not by denying that I matter too .....

So, if I can recognise how hard it can be just to hear the repetition, the obsessions, the protestations on a brief visit, and admit how hard I can find that alone, please know how my heart and admiration genuinely goes out to you and everyone else who has cared or is caring 24/7 ......

You all put me to shame, and in doing so you provide inspiration.

Please take care ....... and give yourself 'permission' to put yourself first for a while at least until you get the 'Can do' belief back!

Much love, Karen, x
 
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Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,718
66
Toronto, Canada
Dearest Hazel,

I'm thinking of you & I think you should go for more respite. I also think you should start looking at different care facilities, just to get an idea, just to prepare for what you MIGHT need to do one day. There's nothing at all wrong with having a loved one in care, you know.

Please take care of yourself.

Love
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Thank you so much everyone, I know you're all talking sense.

The main problem (apart from the lack of sleep), is that John has always been so lovely, and his personality has changed so much over the last week. I knew it would probably happen, but I didn't expect it to be so sudden.

Physically I'm worse than ever today, we had no sleep at all last night, in spite of keeping him up in the afternoon. Today his balance has gone, not surprisingly, he must be exhausted too.

I tried to ring the GP first thing, but the surgery is closed, in spite of the fact that it's not a Scotitsh holiday.

Rang SS -- my SW is off sick, and there was no-one of her team available. I said it was urgent that I speak to someone, and was put through to the manager.

Wow! Action!

I could have emergency respite immediately. I said I'd rather wait till I'd spoken to the GP to see if medication could help. I can have respite at any time, for as long as I need. He's going to send me a book with details of all available respite homes.

He's also going to refer me to a CPN -- I've never had one, they're only assigned in cases of challenging behaviour here.

And 'Is there anything else I can do for you today? Don't hesitate to ring me at any time.'

Wow!

So you were all right. The help is there, and that makes me feel so much better. I'll try to see the GP tomorrow, and we'll try that first.

Thanks again

Love,