phone call from Social services day centre

[Margarita]

An Admiral nurse rang me today , saying that I spoke to her colleague , she told me that they do not have admiral nurses in my area in Fulham .

I was telling her about my mothers obsession with this man , how do you know its would be time to give Anti psychotic drug to someone .

she said when you see that they are very distressed about it . As her MIL had dementia , she got it into her head that that her husband was having an affair with the woman across the road , her MIL was becoming very distress about it . So when they gave her the the Anti psychotic dug it stopped it .


She said that she could come out , but seeing that this a specialist coming out he can offer me help , but to ring them anytime on Monday and thursday .


She ask me how I got their number , I told her about this site, that I read about the admiral nurses going to their AZ cafes . so I did a search for their number on the internet .

I did find out yesterday that they have an AZ cafe in Kensington and Chelsea , but I come under hammersmith fulham so can not go to they.

 

[Margarita]

Who says things can't get better .

As they drop mum of just now from AZ Day center . The man that mum like is dropping mum off . so I say sorry your finding it so hard with my mother liking you so mum .

He said , No ! not at all its all part of the dementia , So I say Oh they do train you in that area , he said yes .


So as he help mum of bus , I say to him its all about romance with my mother, as she was married to my father for 55 years .

Then to my surprise he give mum 2 kisses on each cheek the Spanish way of saying by and adds, what a way to go !

 

[jenniferpa]

Sounds to me, Maggie that this man has no problems handling your mother, but the woman who spoke to you does. I've noticed that some people, instead of saying "I'm having difficulty" make it more "someone else is having difficulty". I suppose it's an unwillingness to admit to failure, but it doesn't make it easier for you to work out what's actually going on.

 

[Grannie G]

he give mum 2 kisses on each cheek the Spanish way of saying by and adds, !

Come on! Come on! Maggie! How dare you miss out the best bit. How did your mother react to that?

 

[Margarita]

but the woman who spoke to you does

You could be right, as she told me this week he was on holiday, they he was dropping mum off.

also I was going to say this the other day , but did not want to come across as moaning

On Tuesday when mum got back . I ask her how she got on she said . it was OK . she had something to eat then had a long sleep.

When she woke up went to the toilet . I ask her did she Join in with the exercise . I could not work out what she was on about , as she just said lady did not come. Lady keep asking me what day it was . You write down the day for me , so when they ask me tomorrow I know . (she was not going to that day center the next day . Mum was not having it , she wanted me to write down the date )

I ask her what did you say , she said " I don't know " leave me, leave me alone . so the lady went away, so in the morning she said write down the day , so I did . My mother always remember thing that she does not like.

Its till in her bag 19 February 2008

they must of been testing her memory after they got the Fax I sent them from doctor .

I think it quite cruel really . But I drop it all as it only stress me out more . I well in the future take her out of they if they carry on , and wait till 2 days come up at social services day centre .

 

[Skye]

Maggie, it does sound as if this woman is the one with the problem. It sounds as if she's determined to prove her point.

But really, it's not her place to be putting your mum under pressure like that. Only CPNs and consultants should test like that, and they're trained to back off if the person becomes agitated.

I can understand that you don't want to pursue this just now, but it's so unfair to put you under this pressure.

Love,

 

[Margarita]

Only CPNs and consultants should test like that, and they're trained to back off if the person becomes agitated.

Yes now that is a good point about CPNs and consultants




also that is the word agitated, that how I found my mother when she was telling me . So when she ask me to write the date down the next day , I wrote the date down for her


Just show me how we can hold on to a negative thought for so long , as asking my mother the date must of made her feel negative towards herself . so she would not forget that negative thought till I wrote the date down for her, the next day


(also she now been waking up at 2 am asking me the time , she not done that for a long time. I had to go down to her , oh bless she said to me give me a kiss , so I kiss her tuck her into bed , she sleep till 5 asking me the time ( told her to go back to sleep its only 5 am ) then 7 asking me the time so I got up )




When I gave it to her she could not even read the number of the date, where before when she ask me to do that few years back she new the numbers .

So I said it out to her and she repeated it to me , she could not even read February and the way she said February , sounded like she did not even no what February means .

Who wants to be reminded that they do not know the date, I know I do not or would not if I had dementia.

So I had to say to her , don't worry you don't read the papers anyway so how would you know .

Its like she was living in bubble , which is been burst out of .

 

[Skye]

Its like she was living in bubble , which is been burst out of .

No-one has the right to burst that bubble, Maggie, least of all a lay person.

I feel so sorry for you and your mum.

 

[Margarita]

Thank you for your
understanding



That why I found it so hard telling my mother that his only a worker he only they to work, he does not fancy you

I could not bring my self to say to her he does not like you as girlfriend . how do you tell someone that they never meet another man , never fall in love again or never have a relationship.

How can you tell your mother that, with out hurting her self esteem , hurting her feeling making her feel so alone in this word .

So I ask her how old are you , I said it smiling she said 26! so I
she said I did not mean to say that

So I had to say . don't you like the other men that are older that go their . No she says , they pull funny faces she mimic what they do with they mouths .

.
I said I know your a woman with sentiments , but his a worker , he gets paid to work they then she says But he .... so I say don't start or you can't go any more its really a , but I joke about it smile with her , but I can't encourage it.

now her horoscope tell her she going to make good friends , when she ask me what in her horoscope to day

 

[Margarita]

I receive a pack in the post from the dementia admiral nurses this morning

They give really good tips in what to do, what to say , in dealing with aggressive behavior .

also what causes aggressive behaviors

also Unusual behavior , loads of other things

I always thought that their only there to help in the late stages , but they not .

They Number is 0845 2579406

Tuesday between 10-am and 4 PM , and 6 p.m. and 9 p.m.

Thursday between 6 p.m. and 9 p.m e- mail direct@fordementia.org.uk .

You don't need a referral from your doctor and they come out if you want them Or just give you advice in what to do in any situation that your finding hard to handle or just want to understand what happing , or anything you want to ask .

and its all a Free service .

They Visit at your home and offer :

Practical advice .

information

help with dealing with your feelings and emotions

information on the nature of the illness and what services are available

practical advice to help cope .

Identifying your needs .

Obtaining services to help you care .

applying for benefits you may be entitled to .

arranging relief care

Admiral Nurses are skilled and experienced nurse who specialist in dementia

 

[Margarita]

I finally received a phone call from the memory nurse , told her every thing that been happing with mum ask how she can't take it going out in cars or in the street . what been happing at day center

I ask the dreaded question , about mum Exbiza what happen if its not working no more .

she said that they can take it away . So I told her what a doctor told me that it would be inhuman to take her of it as she could drop .

she said that they would do it gradual only giving half a tablet and I would notice changes .

That brought on an over welling flow of emotion . I control it and thought to myself thank god I made appointment to see someone for myself on the 11 so I can talk cry it out with them .

She said she bringing someone alone to our home when they do a memory test on mum who is a specialist in the medication mum on .

I told her thank you for letting me ask that question with out judging me as I also said what the point in keeping mum on this medication if its not working . that when she said I may not think it not working , but when they stop the medication gradual I would see the changes .

This is what is killing me emotional I need to seek talk therapy for me . because I don't feel mum has good quality life, and I don't like doing this to her stopping medication .

They no point in taking this medication when its not giving her a full active life . I want to let her go , go into that deep lost world in her mind , where they no tomorrow or no yesterday where they no awareness of I or no one.

I meet one of mum friend to day while out shopping , as she was walking pass my house with me . I ask her to come into see mum . mum could not remember her at that moment , she use to work with mum .



When she left mum said , she look so Good and can walk out side I don't like going out , I don't like seeing people who no me , she got the hump pulled a face . I ask her does it hurt you to see your friends she said yes .

all the medication is doing now is giving her awareness , but with no mobility to walk on her own or do anything for herself, its cruel , just so cruel keeping her on it .

If they give me the choice to stop medication I shall say yes, but I could not do it without they
support in a nursing home .

They going to ring to make an appointment next week to come around , so shall take it all over with them ., but I don't want to cry while talking to them . so that why I shall go to talk therapy

 

[gigi]

They no point in taking this medication when its not giving her a full active life

Hello Maggie,

I agree with you..but also understand, I think, your fears about this..

As I understand it the medication has to be withdrawn "sometime"
because it stops having an effect..if it's withdrawn gradually maybe the changes you are expecting will not happen that quickly?
I have no experience of this..but will probably have to face it one day with Eric.

I do admire you..you are sorting things out for your mum for the future..working out what you need to say and ask for in the way of help..

And thinking of yourself ,too..going to talk about this and finding some to deal with it positively is a good idea..

As we say.."You've certainly got your head screwed on the right way"

Love Gigi xx

 

[Margarita]

I sure don't like those feeling of depths of Despair , that I feel just imagining my mother drop . when now I think I have answer myself my fear your right it is a fear . my imagination is running away with me , but only because I know its going to happen and right in front of my eyes

My adult children can't understand why I am so upset . My younger daughter tell me that children have cancer, people are worse then Nanny , am lucky she just sit they , she be the same in care home or at home with us . that not my point

I can't get her to understand . so I can't go into it to deep into it . May be I am just being to deep in thinking , but that my reality .

Glad you understand

As I understand it the medication has to be withdrawn "sometime"
because it stops having an effect..if it's withdrawn gradually maybe the changes you are expecting will not happen that quickly?

I hope so also , that its slowly . shall ask them when they come around .

 

[Grannie G]

Dear Maggie,

all the medication is doing now is giving her awareness

It might not be the medication that is giving her awareness, it might just be her nature. Dhiren is not on medication but whenever he has a lapse or `bad head`, he asks me not to tell anyone.

I`m so sorry you are having so much worry with your mother. I can see how heartbreaking it is for you and think you are very sensible in seeking help for yourself. It will be good for you to have someone to talk to who doesn`t expect you to put on a brave face.

I can only hope for the best for you and your mother.

Love xx

 

[Whiskas]

Glad you are getting some help Margarita, you are having a hard time. Take care of yourself and you can make the best decisions for your Mum.

Cathyxx

 

[Margarita]

Thank - you cathy



Sylvia may be in a different contents in when Dhiren says it to you . my mother has said that to me all along , even before medication when I was trying to get her support .

She would say don't tell anyone cover for me , when she use to urinate in all the rooms and a number 2 , even thought she would say she never done it even when I saw her doing it . that when I got her along to see the consultant in 03 and she was put on Exbiza and all those symptoms went . but her awareness stayed all along even to now when I went to see doctor, she said cover for me . so your theory could be right about its her nature .

Its not a light dissection I am making about with drawing this medication , but like the memory nurse said that they a specialist that know about this medication, she must know what would happen if medication is with drawn I want to hear the whole truth as they must of been other people taken of this medication when its not working for them any more so shall have a good conversation with her about it all when she arrives .

I don't want other people options on human rights , inhuman , life is better then no life , making me feel bad for even thinking it , they not living in my mother or my shoes .

I just want facts and then I'll make up my own mind about it .


oh how I wish they was another reality that I could ask my mother about taking this medication away , but she say to me that am crazy they nothing wrong with her memory .

imagine telling Mum . Well if this table is with drawn as its not working so good anymore your disappear into your mind and your won't know who I am, bless her she tell me I am crazy

 

[Skye]

Maggie, it sounds as if you've got yourself into a state again!

Of course you're worrying about your mum, but you may b worrying over nothing.

If Ebixa is no longer working, you won't know any difference whan it is grsdually withdrawn. John had it withdrawn, and honestly there was no difference at all.

In any case, they'll start by halving the dose, and if there is a sudden drop, they'll put your mum back up to full dose.

Don't panic, Maggie, you're not doing anything terrible to your mum. It's the disease that's doing that.

I'm glad you've arranged some counselling, It'll be good for you to have someone to talk to.

Love,

 

[connie]

Maggie, sorry that you have this extra worry.

Hazel has given you some very good advice, and she has been down this route with John, re the medication.

I have nothing to add, as I have no experience of this.
Just wanted to say "you are not on your own". We are all thinking of you.

 

[Nell]

Dear Maggie,
Just want you to know that you are in my thoughts and I'm sending you very caring wishes. This is a hard time for you, but you are doing exactly the right thing. Once you know the facts, you can cope with what has to happen.

I hope for your sake that your Mum is like Hazel's John - that is, you do not notice any difference once the medication stops.

As others have said, it is this dreadful disease that is causing everything to happen to your Mum. Nothing and no-one can stop the disease unfortunately. The medicine has worked for a while, but maybe now it is no longer working. The experts will be able to tell you what is happening and advise you on what to do next.

In the meantime, your plan to go to counselling is an excellent one. You need support for yourself, so you can continue to do what has to be done for your Mum.

I admire you very much, and I know others on TP feel the same way.

{{{BIG HUGS}}}

 

[Margarita]

John had it withdrawn, and honestly there was no difference at all.

Just that my mother been on it for 6 years , as I say that because am wondering how long John was on it ?


I am trying to think with a rational , logic and realistic mind . Glad you told me how I am coming across , so when they come around I can express my view in an assertive way not come across narcotic .

I mention it to someone I know who mother pass away with AZ was not on medication , but she told me told me that with drawing medication would make my mother more mental unstable , while her body would still be physically OK as she has a good heart and her kidney are OK .

Maybe I should not be bring this up in a public forum as it may upset other people reading this