I'm new and don't know what to say

[amy2512]

Hello,

I'm new here, but I wish I wasn't.

My mum was diagnosed yesterday with Alzheimers Dementia. She is 49. I have known there is something wrong for about 4 years now, but only in this last year have really pushed for help as it has become very difficult. She is no longer allowed to drive, cannot work, she is a different person in that she is no longer my "mum". I am heartbroken - I think, I don't really know what I think. I'm only 22, I have had a baby this year, he is 11 months, I am desperately sad that my mum cannot help me out with him and spend time alone with him, and enjoy her first grandchild as she once would have.

I have no idea what to do. My dad emigrated 2 months ago to the other side of the world with his new wife and isn't really interested in what's going on.

Apparantly we just go home and "carry on" were the doctors words yesterday. I could tell they all felt very sorry for me and mum at the hospital and all the doctors we met were lovely. My mum is a very "interesting" case I think to them, being as she is so young!

I don't live with my mum, as I have my own home with my partner and our son. My brother lives at home with mum, but he is only 19 and is going through a lot already with our dad leaving, so isn't really going to be of much help I don't think.

I have no idea what to do.

The doctors held a meeting about mum yesterday and phoned me afterwards and they all agree upon the diagnosis and have said that on a scale of 1 - 10 (10 being the worse (does that mean dead?)) she is between 4 and 5.

That sounds quite bad to me, and apparantly it is often quicker when it happens at a young age.

I'm sorry I've waffled on, this probably makes no sense. I'm sorry. I'm just very sad.

 

[Grannie G]

Dear Amy.

My heart goes out to you. It is such a tragedy for all of you, you, your brother and your mother.

There is nothing I can say that will help, but as soon as you feel able, ask your mother`s GP to refer you to Social Services and there will be some help there for you. Also find your local branch of the Alzheimers Society, the facilitator there will be able to advise you about available support groups.

There are many factsheets on this site which might give you more information than you have;
http://www.alzheimers.org.uk/factsheets.

Sadly, none of this will make it go away.

There is support for you here on TP. I hope it will make you feel less alone.

Love xx

 

[zonkjonk]

Dear Amy,
I have often not known "what to do"
I have only one suggestion, stay on talking point, members WILL help you with specific problems
your mum is TOO YOUNG (Iam 43)
From all my reading it can progress faster at a young age (but not always as you will find when reading various members posts)
you need information,information and then some more information.
For now, investigate with the doctor medications for alzheimers, most usual "aricept" to delay the progression.
the number one thing you should do IMHO get that sorted
regards,
Jo
then we move on to "the next thing you should do"
dont worry too much,everyone here will help you

 

[CraigC]

Hi Amy,

My heart goes out to you amy. 49 is so young.

All I can say is keep posting, fire any questions at us and I'm sure some of the many members here can help. You are doing the right thing getting help and support and this is a good place to start. Keep talking!!!

Just so you know, there is a special section on talking point for younger people with dementia:

http://www.alzheimers.org.uk/talkingpoint/discuss/forumdisplay.php?f=27

You can post in any section and will get help and support, but just wanted to make you aware that this is an area that may be useful to you.

Is your mum aware of the diagnosis? I just wondered if she may find help and solice in talking point - just a thought and your call of course.

Kindest Regards
Craig

 

[smiles]

Hi,
my husband was diagnosed last week he is 45 and our daughter is only 6 so I know what you are feeling. Does you mum realise that she has a problem ? My husband although told by the doctor doesnt admit that he has anything wrong making it all the more difficult. I have found knowing as much as possible helps and I am coming to rely on the support and advice of the people here.
I try looking for the bright side of things and am trying to give David some of the experiences / memories that I would want for myself while his is still able to get around. Good luck

 

[amy2512]

Thank you all so much for your kind words. It really means so much that there are others out there who understand and who I can talk to without fear of being judged.

Well my mum is aware of what she has - infact she's been phoning round everyone today telling them all her "news". Even the doctor phoned me up afterwards to ask if she was ok because she didn't seem to respond to the diagnosis.

She is "aware" in that she will happily tell people she has it, but she's not aware of what it means I think, or the full implications of what will happen. She is concerned for me and my brother more than anything, but still is not fully understanding it I don't think.

I guess this is a normal reaction from those who actually have it?

It just seems such a terrible, life altering thing to be told, then to be told to go home and "carry on" is just mind-boggling, I don't know, I suppose I expected more in some way (although not sure what).

49 is just so young, it is scary, now we have the option of being tested to see if it's genetic? I'm not sure how I feel about that one really.

 

[Amy]

Dear Amy,
My mum was 10 years older, I had my children 10 years later - so I can empathise with some of your feelings - your sense of loss.

You need to get as much support as possible: community psychiatric nurse, (CPN) social workers, voluntary agencies. Dont try to take responsibility on your own - with a partner and a child, you have a lot on your plate already.

Read on here as much as you can about what help may be available - ask questions. You will not find a better source of information anywhere.

Remember you are not alone in this - on TP there will always be someone prepared to listen.

Take care.

Love Helen

 

[Amy]

Another thought - get a digital camera and take lots of photos. You still have lots of good times ahead with your mum - store them up. Lots of pictures of mum and her darling grandson, you and mum, brother and mum.

None of us know what time we have available - your mums diagnosis has confirmed that her time is more limited. Make the most of it.

Love Helen

 

[CraigC]

I guess this is a normal reaction from those who actually have it?

Hi Amy,

I don't think there is a normal reaction, some people react by telling everyone, it is their way of dealing with it, others bottle it all up. Everyone reacts differently. Best to go with the flow in my humble opinion, whatever makes your mum feel better and deal with it in her way.

It just seems such a terrible, life altering thing to be told, then to be told to go home and "carry on" is just mind-boggling, I don't know, I suppose I expected more in some way (although not sure what).

Hopefully what the consultant meant was to continue to live as ordinary life as possible - as you say, not that easy. Did he provide any details of medications that may help e.g. Aricept or any other help and support that was available to your mum. Also, it may be early days but at some point she could contact a local support group. There is a page on the main alzheimers site that helps you find your local branch. I know our local branch offers sessions for newly diagnosed people to chat and discuss support that they have found...just a thought..

How to find a local branch. Just type in a postcode:
http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200121

now we have the option of being tested to see if it's genetic? I'm not sure how I feel about that one really.

Purely a personal thing, but I wouldn't want to be tested. I'd put that worry out of your head for now!

take care
Craig

 

[amy2512]

I'm just so upset.

I went to see her earlier as I'd brought her a christmas tree and she was hoovering up so she went to put the hoover away and she "couldn't see" the handle for the hoover, even though it was right infront of her, she tried picking it up by the power button, then the cable, and kept touching the handle but it was like she couldn't register that it was there. Then the same thing happened when I asked her to pass my sons coat from the back of the door, she just walked back and forth through the door unable to see it. She got all panicky when picking up the decorations box as baubles kept falling out and she couldn't work out which way was up so kept tipping more and more out. I just couldn't cope any longer and had to leave. (But she thinks everything is fine and I've left her merrily hanging - I hope - decorations up!)

Is this what it is like? Is this what everyone goes through with this disease?

 

[amy2512]

Oh and no I don't think she is going to be given any medication at present, as the doctor said there was some (sorry I don't know the name) but that they were only allowed to give it once the patient was at a certain stage and mum isn't quite there yet. Is that a good thing or a bad thing? Well personally I think it's bad as why wait till it gets worse before they try to treat it? We have to go back in 2 - 3 months to the memory clinic, but in the meantime have to go through our family GP, As far as I can gather.

 

[Grannie G]

Dear Amy,

Once again I can`t really help you, but you sound so upset, I felt I had to respond in some way.

The symptons you described of your mother not knowing how to put the hoover away, or where to find your son`s coat are symptoms my husband has had, but only when in a very distressed state.

You seem to think your mother is blissfully unaware of her condition. Is it possible she is putting on a very big act, either not to upset you, or because it`s too much for her to face just yet?

I might be totally wrong, and I apologize if I am, but I just wondered.



You ask if this is what it`s like and if everyone goes through the same. Well it is and it isn`t, and they do and they don`t. We all know what you are experiencing, we all understand what you are going through, but we have all been there, at different times in different ways. For some, it`s yet to come.

Love xx

 

[amy2512]

Hi Sylvia,

To be honest I'm not sure. We have discussed the possibility that it may be alzheimers for a few weeks now, so it's not come as too big a shock for her I don't think. She's very detatched emotionally at the moment, not just about the diagnosis but about things in general prior to yesterday. It's like she can't get emotionally involved, for example if someone is upset about something she will express an interest and offer a brief hug but then sort of shake herself and say something like "well lets be positive" "it could be worse" "at least I haven't got piles" - I'm sorry if that's too much info but that's what she likes saying at the moment - I have no idea why!!

So maybe you're right and she's just trying to be strong, I suppose what's difficult is that my "old mum" would never have acted in this way and I'm having a hard time getting used to this new mum I have, who is a complete opposite to my mum. Sorry that probably made no sense at all, but at least I know what I meant!

 

[jenniferpa]

Amy - just a comment about the medication (or lack thereof). You've come slap-bang up against the NICE (National Institute of Clinical Excellence) guidelines for prescribing AD medication. Generally, you have to be at what is described a "moderate" stage of the disease before a prescription will be forthcoming. Does this make sense to us mere mortals? No it doesn't, but it is as it is. It is sometimes possible to get a private prescription for the drugs, but then you'll have to pay for them and also, maybe, pay for private consultations (that gets fudged sometimes).

I wish I could say somethign that would make you feel better, but I can't. This is a truly awful thing to happen to anyone.

 

[Suzanna]

support

Hi Amy.

I just wanted to introduce myself and say that if you want to contact me at any point, please, please do (i think you can send messages through this...). I am 23 and my mum was diagnosed 2 years ago, though the signs had been there since i was about 19. All your posts have made perfect sense (even the parts where you say it doesn't!). My mum is not at all the person she once was, she says different things acts differently etc... I was thinking about how you said she is responding, and my mum was the same, she never really talked about it - least not to me - and to be honset, being so young i didn't really feel able to deal with it even if she did want to talk (in fact i actively avoided it - something that makes me feel so so guilty in retrospect).
Anyway, the point here wasn't for me to go on and on and on about my own sticky situation, but to make the point that although everyone is different i think i may have a good understanding of how you are feeling and would love to be able to help, even if it is just by acting as a sounding-board if you need to vent!

hoping that i can be of some kind of support,

Suzanna

 

[jackie1]

Hello Amy and welcome to Talking Point.

Can I address medication first. I know this is going to be difficult with all you and your brother have on your plate but I think that you need to go back and insist that your mother has the medication now. It may give her some more good years. Point out that at her age she needs to be given every chance possible NOW. If they will not prescribe insist on being referred to a specialist in early onset.

On how your mother is handling things my husband (54 - we have 2 children 7 & 10) is aware he has Alzheimers and it causes him a great deal of distress, for his sake if not ours a hope there will soon come a day when he is not aware. To see the pain, distress and fear in he eyes in unbearable.

The actions you describe are certainly similar, John is unble to follow simple instructions yet his memory is very good at times.

Can I suggest getting in touch with your local Alzheimers Group as they can offer practical and emotional support. They often run courses on all the likely things you can come across as a carer.

I have found this site very useful and I hope you do to.

Take care
Jackie

 

[DianeG]

Hi Amy,
I am 33 (with a 3 yr old son & a husband) and my mum is 55 and was diagnosed at the beginning of the year after aournd 4 years of her just 'not being right' and the last year with all sorts of tests.

I am lucky - she live wih my dad. My mum didn't understand when diagnosed but it is weird because she kind of understands it now?!

My mum can't work, drive, handle money and struggles with the day to day tasks (the hoover story rings many bells with me). I understand completely you leaving frustrated, confused, upset etc. It is heart breaking to have to adapt to the new mum's that we seem to see before us but I try never to forget that it only the disease making her do these things and be how she is - my real mum is in there somewhere.

My mum and dad are moving into sheltered housing (warden assisted housing) probably between Christmas and new year - mum needs extra support and dad needs that comfort that mum is in a safe environment when he is out at work. I have cried for 2 weeks going through the interview process to ensure they were accepted and then I felt like I'd been hit by a truck and that it finally sunk in - mum is not going to get better.

Sometimes you feel like you have to be strong for other people and then you get to the point when you explode - well...I do anyway. I exploded last week but now feel strong enough to cope with Christmas - it everyone is coming to me and I will ensure mum has a good one.

I feel like I am rambling now...
Anyway, what I think I am trying to say is that we have many similarities and TP has been a god send to me lately. The kind words of support and guidance from other members just when you need it. The people on this forum REALLY understand. No comment ever seems silly and more often than not someone else is going through extactly the same feelings and can help you.

I wish you well and hope you keep posting. I will do my best to help you by sharing my experience with my mum to date.

Luv,
Diane x

 

[Mameeskye]

HI Amy

Just wanted to say hello and say that I also understnad your posts as well. My Mum was older when diagnosed with vascular dementia and was also an older Mum when she ahd me. My twin sons were just 1 1/2 when she was diagnosed although I would say that, like you, we had been seeing signs for a few years, which in the early days were put down to grief(Dad had just died) then aging (grrrrr!)

I recognise your Mum's reaction to her dignosis well. Mum was the same. I was wwaiting at the house to meet her and she smiled as she came down the garden path and said "Well, I finally know why I am so tired...the GPs told me I have dementia!" We already knew but Mum, by the time of diagnosis had no true idea of what this meant although occasionally we were able to discuss care immediately after she shortly had a medical emergency which removed much of her remaining lucidity.

I grieved for my young children who would never know Mum. I finally understood why she had not been able to help me following infertility , IVF etc. Yep her reaction was almost identical to the "piles" comments.

However you will have good time in the days ahead and try to enjoy each day as you can. As the others have said...keep talking. Unfortunately most people, I think, only understand this illness's impact when they have been there.

((((hugs)))

Love

Mameeskye

 

[springtime]

caring for Mum

Dear Amy,

I have just logged on to the site, which I don't do very often and felt that I must respond to what you had written. I work with younger people with memory loss (don't like to use the word Dementia). My job is to help people stay independant in the community - that may be through voluntary work, or finding an interest/hobby or to continue with day to day tasks. Sometimes my role will be replaced by a personal assistant or employed member of staff through Direct Payments - to access you need to grab a Social Worker. A good Social Worker should be the gateway to different services that may help your Mum. As other people have suggested, join a support group - which could provide invaluable support - tips/advice.
I know that the news that you and your Mum have received is very sad, but there is support out there and your Mum can be helped, not a cure yet, perhaps one day, but a life to be lived.
Is there a support group in your area that would be suitable for your Mum to join? Can you access some counselling in your area? Here, Carers can get 6/10 sessions of free counselling. Anyway, best of luck, Springtime.