Upset and frightened

[jeanierec]

Hello everyone I found this forum yesterday and the warmth and support that I read on here has prompted me to write. I`ve been really worried about my mum for ages and finally last Thursday got a diagnosis of Alzheimers at first I was ok as up to that point I felt so guilty that I was starting something that I couldn`t stop and that it was all in my head that I felt vindicated but since then I`m in bits.

My mum has always dominated me and is fiercely independent which makes things difficult and due to worries about Mum and being made redundant I`ve been off sick with acute stress reaction though so far I`ve avoided medication I suppose what I`m trying to say is that I`m not coping very well and can`t speak about all this without crying whilst at the same time despising myself for being so weak ( I always prided myself on being a strong lady ). Mum has been prescibed medication but after a couple of days she started saying that someone was ringing her up and saying horrible things to her and that she`d rung 1471 and copied down the number which I recognised as her sisters number which is ex directory and therefore wouldn`t register on 1471 at the same time she`s really down saying she isn`t dippy and she doesn`t think I believe her about the phone calls so I`m reassuring her that I do but don`t know if this is the right thing to do.
Could it be a side effect of the tablets.

I`m really sorry to go on at such length but I don`t know if my reaction is normal or if I`m just being a complete baby. By the way I`m an only child although my husband and two children are wonderful but we non of us have much knowledge

Thankyou for any feedback you may give me

Jeanie

 

[Brucie]

Hi jeanierec and welcome to TP

I don`t know if my reaction is normal

quite normal in my experience. Certainly at first as we understand the enormity of it all, and how our lives won't ever be quite the same ever again.

Information and exchanging experiences on TP will help make the effect less, as does taking things really slowly - to quote a revered member of TP, Norman: "Day by Day".

Just try to take things a step at a time, and use TP as much as you need.

 

[Grannie G]

Hi Jeanie, welcome to TP.

Can I first say that all the mixed emotions you feel are really normal and have been experienced at sometime or other by practically every member of TP.

That your fears have been realized, is something you would have prefered not to happen, but now a diagnosis has been made, you feel guilty, because you are the one who sought help.

There is a possibility your mother`s behaviour with the phone, could be a side effect of the medication or could be a symptom of the condition. But I have no medical training, it is not for me to say, and if you have any anxieties about your mother, you should consult her GP or consultant.

As your mother`s next of kin, the medics should be prepared to discuss your mother`s welfare with you. You could always book an appointment, without your mother, to discuss her condition. Then you will be able to ask all the medical questions that worry you.

It is so much more difficult with those who have always been dominant. You are doing well, don`t let yourself think otherwise.

Please keep in contact with TP.There are people here who are all facing similar traumas and will be very understanding of your problems.

Take care, you can only do your best for your mother, and you appear to be doing just that.

 

[Skye]

Hi Jeanie

A warm welcome from me, too.

The others are right, your reactions are completely normal. We all panic, and wonder if we'll be able to cope. And the answer for most of us is that we can't, without help.

I`m not coping very well and can`t speak about all this without crying whilst at the same time despising myself for being so weak ( I always prided myself on being a strong lady ).

This struck such a chord with me! I always considered myself a strong woman too-- until I collapsed! It never occurred to me to ask for help before that, and everyone said 'but we all thought you were coping, you're such a strong woman'!!

What I'm trying to say is, get help, now!

You need to contact social services to arrange an assessment for your mum, and a carers assessment for yourself. You have the right to support, particularly as you're also coping with a family and a job.

Also contact the local branch of Alzheimer's Society, and Princess Royal Trust for Carers. They will both provide you with lots of support.

And, most importantly, keep in touch with TP! It's the very best support around.

Let us know how you get on.

 

[fearful fiona]

Dear Jeanie,

I am a relatively new person to TP too - I discovered it about three weeks ago and can't begin to say how useful and reassuring it is. It has been so helpful to know that what I am going through is "normal" and there are loads of people out there with the same problems.

My mum is very dominant too and all the things you are experiencing are very similar to what I go through with my Mum. What a mixture of emotions we go through, don't we? Guilt, sadness, uncertainty to name just three. It is such a steep learning curve knowing what to do as no-one teaches you this at school. I have found that the professionals (nurses, doctors etc) are always happy to discuss my Mum's condition directly with me so I hope you find the same.

There are some lovely poems on TP, in fact I cut them out and stick them in a book to look at when I feel a bit down. Also do look at the Tea Room as you realise that what we are going through doesn't mean we lose our sense of humour!! Actually I think Tea Room should be renamed "Down the pub" or something similar..... I think more G&Ts are being drunk there than tea!!

Hope TP helps you as much as it is helping me...

Fiona

 

[Kathleen]

Hello Jeanie,

What you are feeling is absolutely normal, you're worried and frightened and it's a lot to take on board.

My only advice is to ask as many questions as you need to and take things one step at a time.

You will find an immense amount of help and support here, I have and it is such a comfort to be able to discuss everything with others that truly understand.

My knowledge of AD was minimal until Mum was diagnosed, now I know so much more and others on here have got me through several low points and shared my good times too.

Welcome to TP

Kathleen

 

[Tender Face]

Dear Jeanie, I could have written much of your thread myself when I first joined TP over a year ago ...... from the personal stress reaction to the mooted diagnosis at the time, mum's personality and our relationship ..... to mum's '1471' sagas driving me crazy .....

TP members have armed me with so much knowledge and practical advice - apart from fantastic emotional support - at all hours of the day and night!!!!!! I'm a forewarned is fore-armed kinda person - even if being forewarned is simply to learn to expect the unexpected.......

As other members who have been around for some time will testify I still go through phases of 'can't cope' - or extreme anger, despair, complete floundering ..... (and often all at the same time ) ....... it is of great comfort to find people who are on different journeys and yet somehow fellow travellers ..... they have pulled me through some seriously stressful times .....

Don't berate yourself for not coping - (nor deny yourself any support which may be offered) ...... you sound to me like you're coping far more than you realise - you've already made hugely positive steps in securing a diagnosis for mum, acknowledging the immediate support you have ... and finding TP for yourself ......

Only advice right now - be kind to yourself ....... and don't beat yourself up for daring to care....

Love, Karen, x

 

[sue38]

Hi Jeanie,

I echo what the others have said and hope you find lots of support on TP.

I know it's a small point but being ex-directory doesn't stop your number registering on 1471. I think you have to ask BT (or whoever) to add that as an additional service. Sorry to add more confusion, but maybe your Mum has got this one right?

Sue

 

[BeckyJan]

if I`m just being a complete baby.

NO NO NO you are not a complete baby but more than normal. We all go through hell at the initial diagnosis. My husband was diagnosed some three years ago but several years before that I had been researching and basically knew the outcome. Even so the actual confirmation was awful and it took several months for us to come to terms with it.

You will find masses of help, support and advice here. It is a learning curve and my goodness you will learn fast!!!!. My husband still thinks his 'mind' is ok - he thinks his mobility is due to a minor stroke (maybe, but not really).

The first thing you must remember is to look after yourself - you need all the energy and strength you can find. Please try to find relief for your stress - in whatever way suits you most - but it is important. This is the first bit of advice I was given here and looking back I realise how important it is.

Keep posting - best wishes Beckyjan

 

[jeanierec]

thankyou so much

Thankyou everyone who has responded to me ,for the first time I don`t feel so alone. I`ve read through your messages several times and am struck by how positive everyone seems to be . I thought I was going to be in this frame of mind for ever but I guess as human beings we adjust and move on and in the real world I`ve always felt blessed to have a really sunny nature and a glass that is always half full ( usually of red wine ) so I`m now working on the premise that this stage will not last forever so it will just be a matter of time `til I bounce back !

Mum rang a little while ago asking what she should do if the phone goes tonight so I told her to ignore it as whoever it is will get fed up and that we`ll get her a very loud whistle tomorrow so that she can deafen whoever it is and gain some control of the situation ,she was well impressed with that idea.........maybe it will then pop out of her head as easily as it popped in also she took my advice as a sign that I believe her ......... and Sue you gave me some comfort ( not denial ) in that for all I know it could actually be happening , my aunt is bordering on some kind of religious mania I`m sure and for all I know may be battling her own demons and as my Uncle had Alzheimers as well it could be a full house !

I`m not meaning to be flippant but it seems my flattened sense of humour is hopefully ready to reassert itself !

Talk to you all again soon

Jeanie x

 

[Grannie G]

Hi Jeanie, that`s better ! What a difference a few supportive replies make. Well done.

I love the whistle idea and that you were able to please your mum with it. Keep the glass half full, it makes life much easier.

Well done.

 

[Skye]

I`m not meaning to be flippant but it seems my flattened sense of humour is hopefully ready to reassert itself !

Good for you Jeanie. Keep that sense of humour, you'll need it.

The next time you feel it's flattened, TP is guaranteed to restore it!

Love,

 

[Nell]

My mum has always dominated me and is fiercely independent which makes things difficult and due to worries about Mum and being made redundant I`ve been off sick with acute stress reaction though so far I`ve avoided medication I suppose what I`m trying to say is that I`m not coping very well and can`t speak about all this without crying whilst at the same time despising myself for being so weak ( I always prided myself on being a strong lady ).

Dear Jeanie,

First, I think by now you have heard loud and clear that you and your reactions are perfectly NORMAL!!

I echo the advice of others - please get help for yourself. I am a long term depression sufferer (20 years or so) and have most things under control most of the time!! I say this NOT to gloat but to show that treatment for depression (both medication and talking therapies) are essential for recovery (or, as in my case, long term management of a chronic condition).

at the same time she`s really down saying she isn`t dippy and she doesn`t think I believe her about the phone calls so I`m reassuring her that I do but don`t know if this is the right thing to do.

As others have said, she could be right about the phone calls. But even if she isn't, it is OK (IMHO!) to tell her what she believes is true. There has been much discussion about this on TP and many of us find it hard (after a life time of being exhorted to "tell the truth" and be honest) to "lie" to our loved ones. The fact is that they can no longer reason accurately so if we tell them the "real truth" as opposed to what they think is true, they will be more confused, frightened, distrust us, etc. etc. It seems better all round that (most of the time) we go along with their version of what is happening. I must point out that this is not a universal opinion - some people strongly believe you should not "lie" to them ever. I think many of us find telling the truth to be of little benefit and possibly of greater harm, much of the time.


Could it be a side effect of the tablets.

Not being a medical person, I have no idea - but I do know medications are very fragile things and can easily affect the person in strange ways if the dose is not correct. I urge you to chase this up with the doctor - for your peace of mind as well as your Mum's.

This is a LONG journey ( sorry to be so depressing!) - so please, please take GOOD care of yourself. It is wonderful that you have a supportive family. I wish for you and your Mum the best possible journey.

 

[Nebiroth]

The only caveat I would add about "going along with someone" is when they start to have paranoid feelings. Unfortunately, going along with these can reinforce the delusion.

I would say, bring the telephone thing to the attention of someone like the GP or CPN. It may be nothing, and of course should be investigated as it;s possible that mum really is getting abusive calls.

It could be anything, from mum having auditory hallucination to confusing a phone conversation with something heard on the television...and of course they could be real!

But the situation should be monitored, because paranoia can start small, and then feed on itself, until it becomes a big thing. It's easy to dismiss the small stuff, but left alone it can grow like a malignant weed and can be hard to deal with if it becomes entrenched.

If the phone calls aren't real, you probably won't be able to convince mum of this (to her they are), IMHO the best thing to do is to offer what reassurance you can.

 

[mel]

Hi Jeanie
Welcome to TP
You sound pretty normal to me

Take Skye's advice
Hang on to that sense of humour girl

And please.....don't be frightened to ask for help......go for it!!

Love Wendy xx

 

[jeanierec]

Hi everyone

I`ve talked to mums Dr this morning she`s really nice and seems very supportive. I explained whats been happening with regards to the phonecalls and she said the medication that Mum is on is prescibed to help these symptoms among other things not produce them but if I`m worried to stop the tablets . She`s going on holiday so is passing my number on to a CPN and she will check in with me to see if all is well.

The Dr also advised, as did you all ,that I get some support from my own GP as I cannot talk about mum without crying ( the frog look is big this spring I`m told ) My Dr is on leave and as he was the one who advised me to "get mum in the system" I`ll wait `til next week to see him.

Just as a footnote ,I read all your posts to my husband Danny last night and although born in England he definatley has the emotions of his Italian forebears crying when watching The Waltons etc and as expected we both wept but he was bowled over by the acceptance and support from everybody at TP and in fact asked when he came in at lunchtime if I`d had anymore hits !

Jeanie x

 

[Lucille]

Dear Jeanie

I'm glad you've had some support from your mum's GP. It can make such a difference. If you have any problems at all and the CPN hasn't called you, don't hesitate to give her a ring. I was always a little hesitant to call mum's CPN as I thought she was 'too busy' and that mum wasn't as poorly as others the nurse might help. But she's there for the family too (so I'm told) and she has been brilliant.

Look after yourself and go along to see your own doc on his return. If he's already aware of your situation, it's another helping hand.

 

[mel]

Hi Jeanie
The frog look is definitely in!!
It's good your mum is in the system
And remember....you're not alone....you've found us now and we're all ready and willing to help,to listen
You take care
Love Wendy xx