Mother diagnosed at 57

Sarah

Registered User
Jun 2, 2003
3
Hello,

I only registered today. My mother has just been diagnosed with Alzheimer's at the age of 57.

I really do not know how to cope with the hideous reality of her diagnosis at such a young age, coupled with the fact that she lives miles away (with her husband) in Australia. I am also now terrfied that this means I am bound to get it. Her mother had some sort of dementia (although in her late 70's which I think was vascular or stroke related). I am getting married next year and we're planning to have a family. This is at the back of my mind all the time. She is now at the stage where she can do nothing round the house, can't go out by herself and is starting to need help with more personal things. I visited her in March pre-diagnosis, when the doctors were still considering depression, but it seemed fairly obvious to me that it was more serious than that.

Would like to hear from anyone in a similar boat. Thank you.
 

Spike

Registered User
Jun 2, 2003
8
Kent
Sarah,

I really do understand how you are feeling and I sympathaise with you, as my mother was diagnosed at 53, and she lives 300 miles from me and I can only visit her about every 6 weeks, and even when I do she does not really know who I am anymore.

My advice would be keep going with the correct diagnosis and dont let them fob you off with 'depression'. They tried that with my mum, along with a learning disabilty, how an earth a learning disabilty arose at 53 I will never know! Only after an MIR scan did it show deteriation of the brain and only then was it finally accepted she was ill.

As time goes on you really do learn to accept the illness and deal with all the different emotions that go hand in hand, it is just each day as it comes, some are better than others.

I wish you all the best.
 

Sarah

Registered User
Jun 2, 2003
3
Hello Spike,

Thank you for taking the time to reply to my message. I have support and sympathy from family and friends, but I don't think anyone can really understand about Alzheimers's unless they have first-hand experience, so it's good to hear from someone else in the same boat.

My mum has had an MRI scan (after months of very worrying symptoms) and her dementia is confirmed. My step-father is looking into trying to get some home-help, as he has a fairly demanding full-time job and no family nearer than about 800 miles away.

If you don't mind me asking, is your mother on any medication such as Aricept, and if so, has that been of any use?

Thanks again, and all the best to you

Sarah
 

Spike

Registered User
Jun 2, 2003
8
Kent
Hi Sarah,

My mum is taking Resperidol at the moment, as this helps her in 2 ways, one to help calm down the illusions she was having, but also to control her behaviour as she was becoming quite nasty both verbally and physically towards the other residents. It has made a difference in her, but this does not come without side effects, I feel it has made her more incoherant but without this she would be impossible to look after even by professionals, and in herself she is alot calmer and certainly less irritated in herself, so the side effects I believe pros outweigh the cons, so to speak.

My mum did have a carer (friend) who had home help, this worked okay for just under a year, but to be honest I was always uneasy about this for many reasons such as safety and personal hygiene, and I knew that her freind was looking after her for his own 'personal guilt' as he did not want to be partly responsible for placing her in care. My mum has now been in care for a year and the difference has been worth all the guilt as she is so well looked after.

I wish you all the luck in the world with your mum, and please feel free to ask me anything you like, and I will try and help.

All the best
Spike
 

Charlie

Registered User
Apr 1, 2003
161
Hi Sarah,

I really do empathise with your situation. My father was diagnosed at 67 but had been suffering for many years before that. Even at this stage in life it has been such a shock to us all. Like a lot of illnesses Alzheimer's seems to have a stigma attached to it which makes it all the more frightening. It is a shock and the practicalities with the distance you have it can make you feel as though you can't do enough - I know exactly how you feel. It's a time in my life where it would be great to live in the same street as them and we've even though of moving.

My mother is the primary carer for my dad and is unwell herself which makes it very difficult. We help as much as we can but it never feels enough and distance is a problem for us. All you can do is the best you can do. It is hard for us to visit, so I talk to my mum a lot, she just need shoulder now and then and we talk on the phone a lot - it really helps as she feels very isolated.

I also want you to know that even though my dads onset is accellerating I still have hope that we can provide some continued quality in his life - that keeps me going.

On your question of Aricept, it worked for my dad although I am not confident about the very long term benefits - it did seem to have less effect after about a year. He has little or no side effects from Aricept and the slow down of the onset was very noticable. Your mums GP or specialist can help decide if its the right direction to take with you mother.

Keep in touch and good luck to you
Kind Regards
Charlie
 

Sarah

Registered User
Jun 2, 2003
3
Hi Spike & Charlie,

Thanks so much for your messages. Sorry, I don't log on here very often, as I only have PC access at work and I haven't told my colleagues about my mother as yet.

It is early days in her condition, as she is still able to remain at home with her husband for the time being. I just wish that the doctors had been a bit quicker off the mark with a diagnosis, although from what I've read this is a common problem, especially in younger sufferers. I am due to call them soon (difficult due to time difference in Australia) so hopefully they (her husband anyway) can tell me how she's going on with the Aricept. What I can't deal with at the moment is that she is aware of what she has and she is still compus mentus enough to understand the diagnosis.

Anyay, thanks again, and all best wishes to you and your loved ones

Sarah
 

Spike

Registered User
Jun 2, 2003
8
Kent
Hi Sarah,

The fact that your mother knows what is happening may well be a good thing, as my mum was never able to understand and in the early stages she was always getting very aggitated, stressed and upset and she never told anyone what was happening, she thought ironically 'it was all in her mind'. Depending on the person it can often help to know, but it really is an individual thing and I have heard of the sufferer sometimes stonger than the relatives or carers.....dont be hard on yourself Sarah, and honestly it does get easier to live with after a time.

Take care and speak to you soon,
Spike
 

adele78

Registered User
Dec 22, 2003
20
manchester
Dear Spike
I have just read your message about Alzheimers Disease getting easier?? In what way does it get easier? In my experience the illness gets worse and worse, until you wonder how much longer your relative has to suffer. My mother is in the late stages now and is a shadow of her former self. She cannot speak, eat or drink, is on a peg feed and wears nappies. The only way to describe her now is like a zombie. No, it definitely does not get easier!!

Adele.
 

Jackie

Registered User
Oct 9, 2003
61
Get easier

What get's easier ???


What does get 'eaiser' is learning to deal with the illness and learning not to blame myself for everything! The guilty feelings of having to put my mother in a home, the guilt that I can not see her anymore often that I do as she lives so far away, the guilt that I can not be with her 24hrs a day / 7 days a week, the guilt that I feel most of the time that I wish she was no longer here and I certainly never said that it gets eaiser watching my mother dying before my very eyes........

Its the guilt that gets easir to live with Adele not the illness !
 

Emma Craig

Registered User
Dec 30, 2003
3
Herts
mum diagnosed in 50's

Hi Sarah,
This is my first time on this site and I am not really sure what to say except that my Mum was diagnosed with Alzheimers in mid 50's - 10 years ago, having had symptoms for a long time. At the time I was living overseas and felt pretty helpless too.
Mum was denied Aricept until 18 months ago, for postcode reasons or whatever.( consultants said she didn't need it) When she finally scored low enough in her test at the consultants, the consultant said that was great news as aricept is a great drug to be used in the early stages as it slows development of the disease down. We were obviously a bit confused as to why they had to wait so long to offer it. Anyway, I won't go into details about how slack the doctors have all been with their treatments/interest as it has been pretty appalling.
Since she has been taking its hard to know if it has made a difference to memory as it certainly hasn't stopped deterioration , but 3 months ago, the dose was doubled and there was a remarkable change in Mum's attitude to life- she would get up and clean the house - before this she was very depressed and didn't get out of bed until forced.
I now feel very guilty that I didn't look into drugs and how to get them at an earlier stage although it is hard when your doctor won't tell you information as you are only 'the daughter of' ( my Dad being Mum's carer, and him wanting not to worry us, and take care of things himself- also doesn't like to ask for help)
We also seemed to get fobbed off with the fact that she wasn't old enough to qualify for help.
I think I am probably rambling now ( as I tend too when trying to make head or tail of this disease) but all I can say to you is to try and get as much information as possible in these early stages, and don't take no for an answer. Contact your local alzheimers ass. as they can be great. I had to shout and lie to the GP just to get a visit from the community health nurse - 8 years after Mum's diagnosis. Since her involvement things have been eased slightly for my poor Dad.
Hopefully , in Australia the health system is better at dealing with mental illness than here. Just find out all you can.
best of luck, keep chatting..........love emma
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
aricept

Emma
are you saying that your mother is now on 20 mg of aricept daily?
I have only known treatment by a 5 mg start and then to 10 mg daily.
Norm
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Sarah,

You have my every sympathy in your situation of being in the UK with your Mother suffering half a world away in Oz and you not being on hand to help out directly.

Perhaps I can help? For the last 30 years I've lived in Australia and Indonesia, have Oz/UK passports and am pretty familiar with the workings of Govt Departments over there. I've been in England for the past 10 months sorting out my parents' affairs and looking after them - they both have AD. I will be going to Australia during Feb/March as my carers are going to live in while I'm o/seas.

If you'd like to tell me where exactly your mother lives, then I may be able to help you with some useful contacts. Can also put you in touch with Visa specialists who can speed up things if you need to go over in a hurry, etc.

As you probably know, the majority of the population of Australia are much younger than in UK, however their medical and social systems are pretty good and not quite as bogged down in red tape as they are here when it comes to dealing with the aged, since they don't have the volume of elderly people to deal with.

Please let me know, if you'd like some info. My email is flamboyant_bali@tiscali.co.uk and I'd be very happy to do whatever I can. I will be going to Darwin and Cairns, so if your mother is close, then perhaps I can visit.

Re medication: Aricept is excellent - My father takes 10mg Aricept but my mother had a severe phsyical intolerance to this medication and can't take it. Father's been taking Aricept for 3 years and doing brilliantly. So far, no degeneration in his condition. It won't last forever, but it's great to have him back at least 60% for as long as it lasts.

Finally, so far as I know, and medical information indicates, Altzheimers is not genetically inherited. It seems to be a very selective illness.

Best wishes,

Jude
 

jackie w

Registered User
Jan 4, 2004
10
devon
hi this is my first time here my mum has suspected alzheimers not yet diagnosed but we think she is quite far along the path of this disease.my dad is really struggling to cope with her and everyone keeps telling me i ought to do something.i have been to the drs numerous times and she has now seen specialists but dr says he cant really do anything until my dad asks for help
 

Emma Craig

Registered User
Dec 30, 2003
3
Herts
Dear Jackie W
Your comment about the Dr telling you he can't do anything until your Dad asks for help struck a chord with me as I have been in a similar situation with my parents. My Mum would say for years that she would have been better off had she not been diagnosed so early. How old is your Mum and how is the suspected alzheimers affecting you mothers health? My Mum was still working as a teacher so had to be diagnosed to be allowed early retirement. Does your Dad not want her to have the test?
Best wishes
 

jackie w

Registered User
Jan 4, 2004
10
devon
emma c
thank you for your reply. my mum is 61 and it is not that my dad is unwilling its that it is so difficult to get my mum to see anyone as she thinks we are trying to have her locked away i had to get the specialist to see her at home in the end .she is booked in for a mri scan sometime soon i not looking forward to trying to get her there