My mother been waking me at odd hours of the night , so am wondering

Margarita

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Feb 17, 2006
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london
My mother been waking me at odd hours of the night , just calling me asking the time then she go back to sleep , I wake up not even knowing the time just telling her anytime , worse thing is that I can't go back to sleep and am left what to do at what in the early hours of the morning , if I don't get up my brain thinking 2 to a dozen, as last night it was '' even if they raise the carer allowance how is money going to help me in moments like this as I was reading about that on TP yesterday , god some time with lack of sleep I think I am going crazy

knowing if I don't sleep then I am sleeping during the day while mum at day centre whole day gone , then I can't sleep the next night end up going to bed late .

Then mum says to me what day is it today , I say wednesday , she say when is it Thursday, i tell her its tomorrow , where she answer what happen to wednesday.

carer who washes mum heard all this , as mum ask all this in English today , she tell me how did it go with assessment , told her I did not go as they done it at AZ day center , was so tried that I fall asleep during the day and anyway they make up they own mind SW , no matter what I tell them , because they ask her opinion about how she think mum getting on she told me this today , even thought I had told SW before about mum mobility getting worse , OT coming out soon . so social worker phoning me to do my carer assessment and tell me what happen at meeting on phone , all pointless I think , my assessment as what more can they offer me then what they have as in another day at day centre , but just like to ask you all


I have read on TP about rolling respite what dose that mean ,
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Dear Margarita,

I do understand how awful it is to be woken every night, and then becoming so wide awake you can`t get back to sleep.

One thing struck me immediately whilst reading your post. Your mother is now going to the day Centre 5 days a week. Do you know if she`s `nodding off` whilst she`s there.

So many older people have a sleep after meals, or when they are bored or not getting enough attention. If your mother is being allowed to sleep too long during the day, it might account for her restless nights.

Love xx
 

Margarita

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Feb 17, 2006
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london
far as I know no she not, as lady from day center rang to day telling me about extra day at Saturday SS day center , and how mum join in with dancing and did not want to let go of worker who was dancing with her , have been they and they lots of activities it a big place with different room for different activities mum always join in so they lots of walking with Zimmer fame to get around

If think about it , on Tuesday Thursday she go to AZ day center which is a small place one room with a kitchen and mum won't go into garden so she sitting down all the time only getting to go to toilet and also she come home wet , I know they short staff , so don't say anything also find that her legs always seen very swollen on those 2 days she go . mum love going as on Thursday they a worker she got a crash on .

had a nap this morning so feel better .
 
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Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
Maggie, you have my sympathy. This night-time disturbance is I think fairly typical, as people with AD may lose all sense of time. It sounds as if this may be happening with your mum, as she is asking what day it is.

It's an awful thing to live with, I had it for a couple of years with John. All you can do is try to catch up on some sleep during the day, and try not to let yourself get run down.

Rolling respite just means that you are allocated so many weeks a year, sometimes one every six weeks, and you can pre-book them, so you always have one to look forward to. I was offered this just before John went into hospital -- too late!:(

Take care of yourself,

Love,
 

Margarita

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Feb 17, 2006
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london
Just spoke to SW about it , first think she wanted to know was how did I know , hear about it , I just said oh you know me always on the internet AZ site she then went on to tell me what you said hazel that people take they respite every 6 week or when they need it , she talk a lot about mum how both day centre say mum actively join in with activities

she says they notice mum conference is going in her ability to walk since last year, I say that its the disease progressing while she says its her conference .


she ask me about her momorey so tell her about the days of the week as I menstion above , she says oh your mother said she new me . I don't think she understand or may be its just me, trying to work out how this journey keep changing with mum , moving has been stressful for me . while mum sallied though it , having more days for me freeing up time for me , but still having that rushing feeling as when children where younger and having to be home for 4 p.m. so after respite am going to look for part time work or get down to the heath club , that just does not seem to give me that lift any more , oh its just change , stress better stop or I'll depress you all . on ward and forward is all I can do now

she book mum in the respite for next week even organizing taxi to pick us up then drop me back home
 
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Skye

Registered User
Aug 29, 2006
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SW Scotland
I'm glad you've got respite sorted, Maggie. Now you can start planning what you're going to do.

Gibraltar again?:D

Well done,

Love,
 

Margarita

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Feb 17, 2006
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london
lol :D lol

Oh how the day just got better from this morning when it felt like dome lay ahead of me and now its :D house all clean :D as I clean away my misery and self pity , friend rang she arrived in leeds from Gibraltar today fly into London on Sunday amazing how I can talk smile laugh , then still feel fed up , full of self pity .

I stress my brother support worker out today [ did not mean to ] he stress me out 2-weeks a go so was not worrying about him , when he rush to my brother room could hear him running upstairs with cordless phone as I said I had given my brother hundred pound to give to him , and he said no he had not got it, :eek: that made him panic , then I remembered that the money was meant to go to cafe not him[ brother did give it to cafe ] :D
 
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Margarita

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Feb 17, 2006
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london
Told mum that if she does not stop asking me question am going to bed .

[ Am not going to bed really , because the way mum feeling she be calling me ]

So she stop , put her arms out and ask for a kiss , she gets a hug and she smile bright as the sun shine , then says One more thing , so I tickle her :)

Am never going to book to respite so close together , just all to confusing for mum to stressful for me, am leaning to live with this disease , having dyslexia I find it hard to spell disease , even spell check can't find it the way I spell it :) but get they at the end . just like this disease it has an end , shall look back and say at the end of this journey well at lest I learn how to spell disease , which remind me of the deepest darkest part of the sea , which I'll never seen , just like with AZ disease , so that how I remember to spell disease , because of the sea in disease
 
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Taffy

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Apr 15, 2007
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just like this disease it has an end , shall look back and say at the end of this journey well at lest I learn how to spell disease ,

Margarita, you make me smile and I bet their will be many other things to add to the list, that you have learnt from this disease. It's taught me many things along the way. I hope both you and mum enjoy the weeks respite. Take Care Taffy. :)
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Dear Margarita, you are a credit to yourself.

Can I ask about your dyslexia? When you have found the correct spelling for a word, do you hold that information, or do you need to look it up again?

I hope you don`t mind me asking.

Love xx
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
yes can hold it in my mind when I have made a rhyme out of it Di for lady [princes] Diana , sea for the sea , then the se just the word see that lost an e . to my mind the se not they its drop in to the sea lol with the e , if you see what I mean, [ that when am writing it on paper .


then when stress from being , tried issue going on in my mind the rhyme gone .

I no where it is on the key board only the i is further away , so take a few deep breath relax and it all come back surprising myself that I remember it on key board with out even thinking of rhyme .


so in short yes can retain it , once I learn a to imagine visualize the word as I sure can't hear it , like other can when they sound it out .

Mum gone to day- center so am of to my daughter's who move in new flat and has a great shopping market , street buzzing with traffic and people . which I love.

thanks Sylvia , hazel , much love to both of you for your support xx
 

roman

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Aug 8, 2007
16
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Liverpool
My mum lived in sheltered accommodation and we were given 3 nights of carers.I think this was agreed by social services (as we were waiting for a place in residential and mum was disturbing other residents in her accommodation) as they knew it was short term.We also asked for higher rate care allowance but this was refused.I think social services would agree support at night if they thought you were at the end of your tether and may place her in residential as this would cost more? Mum had no idea of time.She would fall asleep about 8 then be awake at 11 and again through the night.I put big digital clock next to mum's bed but she ignored it.There is a talking clock for Blind people and alarms (see ALZ fact sheet Assistive Technology ) that tell people go back to bed (but I thought this sounds scary).
 

Lynne

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Jun 3, 2005
3,433
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Suffolk,England
Margarita

I do SO know what you mean about the tiredness as a result of being woken several times a night, sometimes for nothing much, sometimes to shepherd Mum back to bed because she has decided to 'let the cat out' or something equally daft at 3 in the morning!

As you say, she may go straight back to sleep but it's not so easy for "us girls" to switch off again. It is SO tiring.

Best wishes
 

Margarita

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Feb 17, 2006
10,824
0
london
Last night I thought I'll be better of sleeping of on Settee as they one in where mum sleep , as I am falling asleep my son walk in and tell me to go to my bed as its not good for my back, so I did leaving mum sleeping after my son left and before my son left he was taking to me in my room about issue in his personal life , I thought no wonder you woke me up [ his 27 ] after he leaves I can hear mum downstairs calling my name , but in a low tone voice . Me thinking she must be scared in not seeing me around , hear her go to toilet call my name again, but I don't answer , then it go quit , then I worry, so slowly , quietly go down after a while . and she sleeping in bed .

RomanI got a feeling that soon I shall be asking about what you said
think social services would agree support at night if they thought you were at the end of your tether and may place her in residential as this would cost more?

Its so so true only when I say Care home do they offer the services , hate saying that but it the only way to get help thanks

Lynne , so glad to read that its not just me that find it so hard to go back to sleep , while mum seem knock out like she is now , then wake up bright as bird like she never been sleeping

Clock dose sound crazy but Fun lol as if I got it and mum ask me who said that :confused: shall tell her it was GOD :D

Would be good if I could record it in clock my voice telling her to go bed
 
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DeborahBlythe

Registered User
Dec 1, 2006
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Margarita said:
Would be good if I could record it in clock my voice telling her to go bed

Maggie, that would be brilliant :D , but it might be even scarier for your mum depending on what tone of voice you used :) :) Have you thought of cloning yourself? :D
Seriously though, I'm possibly a bit adrift on this and not an expert adviser but I thought that Attendance Allowance or enhanced-rate Attendance Allowance is supposed to be available for people in your mum's situation and needing support or supervision at night. It's supposed to be there to pay for extra support at night time, I think. Have you spoken to the AS helpline advisors or Counsel and Care?
Take care, dear Maggie, thinking of you. Love Deborah x
 

Whiskas

Registered User
Oct 17, 2006
158
0
Corby
Oh Margarita and Lynne I know just how you feel!!!!!!!!!!!!!!!!!!!!!!
Mum has had me up several times to tell me where we live, to show me her name tape on her 'security blanket' and calling out "help me help me" and when I go in and ask what does she want help with I get "well I don't know"!!!!!!!!!!!!!!!!!!!!

Then as you say she is back off to sleep and I'm not. I read or listen to a book on tape so I have someone reading me a bedtime story:rolleyes: :rolleyes: and just as I'm drifting off to sleep "help me help me" ........ there she goes again :eek:

Oh the joys of being a carer!

Hope we all get a better night tonight. Catch up on your sleep whilst your Mum is in respite Margarita.
Love Cathyxx
 

Cliff

Registered User
Jun 29, 2007
777
0
North Wales
Hello Margarita,

I think you are marvellous. How you can be so bright and cheerful amazes me.

Dee wakes me to go the toilet during the night but I go back to sleep immediately afterwards. Then I feel droopy all morning.

So how do you keep so bright? Please tell us your secret :) :) :)

With love
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Deborah Have you thought of cloning yourself?

lol I have , I have ....have thought to myself could get a blow up doll on settee with its arm sticking out of cover, put one of my top on it , so mum think I am they , but asleep { thought pop into my head } then clock near by in a very low tone voice of mine , telling saying I'm hear go back to sleep.

then in morning before she wake up hide the doll :D

Someone told me about continuing Attendance allowance , but when look it up it said you had to been a war veteran . shall look up on Counsel and care , shall phone them both up when I get back.

So how do you keep so bright? Please tell us your secret

Cliff thanks the list is endless , main one must be my children , that keep me young and a younger me was always an optimistic person who always saw the brighter side of life , but did suffer from low mood , when in out of woman refuges with 4 children , so really count my blessing that I finally set myself free [ in my 40 ] from that time now no man telling me what I can and can not do , so am happy again freedom make me happy :)

Sometime I feel trap with mum . as I did not release how she can cling to me so much because of this disease , now I understand that I don't mind so push for more days at day - center .

So I fight this Disease with my up beat nature and cry when I want to knowing its normal .




My son 27 who woke me the other night , was all about his GF

GF pregnant and saying she not sure if she keep it , only because he went on holiday did not phone , even thought he went .......she said if he go on holiday she finish with him , so he still went on holiday .

Now she tell him she pregnant , his really glad about it , but won't beg her to keep it, she playing with his emotion . so I phone her next day , telling her to ring me . thought my son would of got angry with me for interfering or did he want her to know I new so phone anyway he was OK about it she never phone me back , My son just wants her to want baby because she wants it also .

and me praying yes please make me a grandmother , mum would love it also :D and when its older can take him or her to Gibraltar with me if they let me that is

mum sleep good last night , daughter who has her own place , woke me up and tell me she staying the night, got back from a night out , then other daughter that got back with out waking me is chatting with GF laughing who stay the night . so that me awake at night can't win .

then she up early ready for church , telling me her friends are sleeping in her room don't wake them :eek: .

Whiskas, yes shall :D
 
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Cliff

Registered User
Jun 29, 2007
777
0
North Wales
have thought to myself could get a blow up doll on settee with its arm sticking out


Well, Margarita if you ever do this please post a picture as it would make all of us very happy !! :) :D :)

You deserve twelve stars

Love
 

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