Recently been diagnose with Early Onset Alzheimer's

[JacquieS]

About 4 weeks ago at the age of 54, I was diagnosed with Early Onset Alzheimer's after two years of assessments and every possible brain scan there is. I'm very grateful that I have a young consultant who wanted to explore every avenue open to me and sent me to see a specialist in London where I was diagnosed .
Since having been told I have Alzheimer's I've been left to 'get on with life' as I was advised to by the nurse I spoke to after receiving my diagnosis. As a family we have been offered no counselling and nor have I been offered any 1 -1 counselling. Is this usual? My husband and children won't mention it and if I try to talk to them they either change the subject or become to upset to carry on with the conversation. My GP has offered no help either.
What can I do or where can I go for help?
Many thanks

 

[balloo]

sorry to say my mother in law was diagnosed with vascular dementia 21/2 years ago although she is a lot older than you since then no help unless she has infection. I saw she was surposed to be back in GP care with care plan which we don't have. All I can suggest is you see your gp and ask .

 

[Grannie G]

Hello Jacquie

Welcome to Talking Point.

I`m so sorry about your diagnosis and hope you will be glad you`ve found talking Point because no one here will turn away when you need to talk about anything or when you feel you need support.

Sadly many people are left to get on with their lives after a diagnosis without any help or support.

There is an Alzheimer`s Society factsheet `After a diagnosis` which might help you.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

Here is says your GP will be the first port of call if you feel you may be helped by counselling. If your GP seems unhelpful I`m afraid all you can do is return to him/her and make them realise how much you need some support.

Your husband and family may be in shock , as you are, and not sure how to handle this. I think perhaps you might be able to make them realise this problem will not go away if it isn`t talked about and how much it will help you if you know you can discuss it openly with your family.

Keep posting here Jacquie. We all know how it feels and even if many of us are much further down the line we can still remember how it was in the early days.

 

[Countryboy]

About 4 weeks ago at the age of 54, I was diagnosed with Early Onset Alzheimer's after two years of assessments and every possible brain scan there is. I'm very grateful that I have a young consultant who wanted to explore every avenue open to me and sent me to see a specialist in London where I was diagnosed .
Since having been told I have Alzheimer's I've been left to 'get on with life' as I was advised to by the nurse I spoke to after receiving my diagnosis. As a family we have been offered no counselling and nor have I been offered any 1 -1 counselling. Is this usual? My husband and children won't mention it and if I try to talk to them they either change the subject or become to upset to carry on with the conversation. My GP has offered no help either.
What can I do or where can I go for help?
Many thanks

Hi JacquieS you seem to have had great help and support from the Consultants and GPs so far now you actually have the diagnoses and like you I was diagnosed with mild Alzheimers at age of 57 I was put on Aricept in 1999 that was good still on it now in fact
Regards where do you go well I can only say I just thought best thing for me was to continue at Work carry on with everything give up nothing even at the suggestion of being told I may have to give thins up such as work and driving I refused to the point I battled and fought all the bureaucrats and Won I maintain that it was the fight the kept my brain active and alert , the alternative is to sit around and worry either way your life will keep rolling on , you will get some good and not so good advise obviously your the person with the diagnoses I'm now 72 and really no different apart than being older my dementia has remained the same , not sure if it's the medication or my positive outlook
whichever after 15 + years I'm still going strong

Hope you find some of this encouraging ( ps my diagnosed was changed in 2003 to frontal-temporal-dementia after having PET brain scans )

Cheers Tony

 

[Jessbow]

Originally 'the Clive project'

it was set up by a lady whose husband was diagnosed at about your age. She wrote a book too

http://www.youngdementiauk.org/

 

[Alison N]

Hi JacquieS

I am so sorry to hear of your diagnosis at such a young age. My husband was also diagnosed last September with young onset Alzheimer's at 52. He was also sent to a hospital in London, the London hospital for neurology and neurosurgery and I am wondering if it is the same hospital that you were referred to. After the diagnosis the nurse asked us if we thought that seeing a psychologist for some counselling may help us come to terms with it. We have now had five visits and it has helped. Contact the hospital nurse again and ask if you could be referred . It was all done very quickly. Our GP wasn't really much help, just told us to contact the Azheimers Society.
Lots of advice from here says to take it one day at a time and don't look to far into the future.
In the meantime, Talking Point is so helpful. Anything you need to know will be answered by one of the members. Everyone really understands. Let me know how you get on and you can alway private message me if your prefer.
Take care. Alison x

 

[Sue J]

Hi Jacqui

'where can I go for help', well you've come to TP which is probably the best start as you will get lots of help and understanding support here. Am sorry to read of our diagnosis. I am your age and have been pursuing a diagnosis, but not wanting one, for 6 years now. I have had lots of support and help by posting here and by reading others posts to helping me to understand my own symptoms and how to deal with them.

Keep posting, will look out for you
Best wishes
Sue

 

[Countryboy]

About 4 weeks ago at the age of 54, I was diagnosed with Early Onset Alzheimer's after two years of assessments and every possible brain scan there is. I'm very grateful that I have a young consultant who wanted to explore every avenue open to me and sent me to see a specialist in London where I was diagnosed .
Since having been told I have Alzheimer's I've been left to 'get on with life' as I was advised to by the nurse I spoke to after receiving my diagnosis. As a family we have been offered no counselling and nor have I been offered any 1 -1 counselling. Is this usual? My husband and children won't mention it and if I try to talk to them they either change the subject or become to upset to carry on with the conversation. My GP has offered no help either.
What can I do or where can I go for help?
Many thanks

Hi JacquiesS just had a second read of your thread re: husband & children won't discuss it , and was thinking just who different families and people are to there approach of dementia both my parents had dementia Dad really bad Mother very with but could be very evil also my mus brother and sister had dementia so it didn't come as a shock when I was diagnosed but I have always been positive , my son and daughter are 45 & 47 they have power of attorney so they tel me they will have me put in a home my reply is ok no problem but before I go I will burn this place down ( my house ) we just laugh at the diagnoses a get on with life. Whilst we can !!

Cheers Tony I say we're alive and Above Ground

 

[john51]

Hi JacquieS
Unfortunately those of use who have a diagnosis of early onset dementia are very much left to get on with it.
I got my diagnosis a year ago at age 52. My wife found it very hard to come to terms with, and was only just coming to terms with it when I had a TIA and following from it some decline. She has got it in her mind that I will recover from it back to the way I was. It's impossible to explain how you feel and what you are experiencing; that the declarations that you are getting better may well be indications of a better time, but you know that worse is hiding round the corner.
Sorry to be so negative, but the best support is here on Talking Point. Encourage your family to join in.
Even more negative I know but you are probably going to have to support your family as well as going through hell yourself.
I really do hope your experience will be better than this
John

 

[kingybell]

Hi Jaquie and welcome. You sound like you need a hug and some support which you will get from here.
My mil was diagnosed aged 56 just before Christmas. My husband and his brother really struggled with it all.
I think the fact you are left hanging with a diagnosis and no where to go is the norm.
We were the same and I set out on a mission to help my mil have fun.

Firstly I have a rule if she says she always wanted to do something I try and make it happen.

Things like:
- bounce on a bouncing castle like a kid
- be in a film ( she was an extra in a film)
- have afternoon tea in a really nice place
- see a show
- see her family in Italy

Loads of things and while this might not be your bag I guess what I'm saying is live for now and enjoy your life it doesn't have to be miserable because you have dementia.

Her sons think I'm mad but happy to indulge us or fund us doing this stuff.
I have good friend aged 38 who has terminal cancer and see if doing the same thing. I honestly think it has kept her living longer.

 

[Countryboy]

Hi me again just like to say something in response to G.P done nothing to help!!
Obviously this what happened with me , I was ask by my G.P if i would go along to the mental health clinics , this was a clinic at that time had loads of resident in patients but also had a consulting surgery , I agreed to go and was diagnosed with mild Alzheimer's , and was ask if I would go on was at the time a trail drug in U.K Aricept this was in 1999 , I have never seen my G.P again regards my dementia almost 16 years since September 1999 at first the Aricept was prescribed by the Consultant and was issued every month at the clinic it was then ordered by the chemist this went on for almost 3 years until the drug was adopted in U.K the prescription was then shared cost between N.H.Trust and G.P surgery at that time it was very expensive I.m still on that same drug today 16 years come November, in 1999 when I was diagnosed aged 57 I was assigned an Occupational Therapist she was present at the Consultation after the diagnoses she ask me what I intended to do give up work or continue , I decided to. Continue to carry on at work as a Surveyor for Local Government obviously in order to continue there were several meeting with the Council management and personal and my O.T this continued at fist on a monthly then after a year on a three monthly basis for 8 Years until my retirement I also had monthly meeting with the Consultant for first 3 years until after having had a PET brain scan in 2003 it changed to every 6 months I could go on but what I'm saying is the Medical Consultant and Occupational Therapists both love they both had a challenge with me employers to keep me at work my O.T was brilliant she didn't mess about or take any prisoners , Obviously I was fortunate and to have her on board my diagnosed in 2003 was changed to F.T.D I sill see the Consultant and O.T every six months now , but it's more of a friendship now first names Christmas card ect

Hi just got back from breakfast reading my reply and now noticing all the grammar / spelling mistakes had to believe t
Hat I was once a Surveyor for 25 years writing contracts sometimes 3 or 5 million pounds but that's. "dementia" my main problem I know exactly what I want to say in my thoughts but it get lost or loses its connecting by time it get to speech that when I start swearing not at the person but the fact I lost my thoughts or words so annoying happens so long doesn't worry me though


Cheers Tony

 

[JacquieS]

Wow what a lovely lot people you all are

Thank you all so much for your words of support and advice. I have now been back to see my GP and he has advised me to get in touch with my consultant and ask for counselling. I'm hoping that he will agree that as a family this will be beneficial to us all. At the moment I am still off work. The thought of walking back into a classroom fills me with dread. I was finding things difficult before my diagnosis and now that my confidence has taken a bit of a nose dive i don't think I am ready to go back in to class at the moment.
To answer some of the questions people have asked. Unfortunately I can't remember most of them but will do my best.
I have been prescribed Donepezil which won't cure my Alzheimer's but is supposed to help make me feel more confident. Fingers crossed it will start to work soon.
I am under a consultant at the National Hospital for Neurology and Neurosurgery in London.
I too have problems with spelling words. I use the right letters but in the wrong order so I'm always going back a correcting what I have written. I find this, and not being able to think of the next word really really annoying and frustrating. Also remembering conversations is another difficulty and it used to cause a lot of rows between my husband and I, until he cottoned on that I genuinely don't remember a lot of what is said.
It's lovely to read that some of you are doing so well after being diagnosed several years ago. I find that quite encouraging and hope I am as fortunate.
How long did it take for you to stop feeling so upset when telling people? I haven't told many people as I find it's too hard and I get too choked up. the other thing that I have found is that since telling the people I thought I was closest too, especially family, only one friend keeps in touch and every week she asks me how I'm doing.
Once again thank you for all your lovely responses to my original post. They have really helped xxx

 

[Mal2]

Thank you all so much for your words of support and advice. I have now been back to see my GP and he has advised me to get in touch with my consultant and ask for counselling. I'm hoping that he will agree that as a family this will be beneficial to us all. At the moment I am still off work. The thought of walking back into a classroom fills me with dread. I was finding things difficult before my diagnosis and now that my confidence has taken a bit of a nose dive i don't think I am ready to go back in to class at the moment.
To answer some of the questions people have asked. Unfortunately I can't remember most of them but will do my best.
I have been prescribed Donepezil which won't cure my Alzheimer's but is supposed to help make me feel more confident. Fingers crossed it will start to work soon.
I am under a consultant at the National Hospital for Neurology and Neurosurgery in London.
I too have problems with spelling words. I use the right letters but in the wrong order so I'm always going back a correcting what I have written. I find this, and not being able to think of the next word really really annoying and frustrating. Also remembering conversations is another difficulty and it used to cause a lot of rows between my husband and I, until he cottoned on that I genuinely don't remember a lot of what is said.
It's lovely to read that some of you are doing so well after being diagnosed several years ago. I find that quite encouraging and hope I am as fortunate.
How long did it take for you to stop feeling so upset when telling people? I haven't told many people as I find it's too hard and I get too choked up. the other thing that I have found is that since telling the people I thought I was closest too, especially family, only one friend keeps in touch and every week she asks me how I'm doing.
Once again thank you for all your lovely responses to my original post. They have really helped xxx

So sorry to hear of your anguish. I can only agree with everything that everyone has said.

My husband was diagnosed in 2004 and apart from the 6 monthly checks at the memory clinic, we were left to get on with it. Even now if he is not well and I call the doctor, the first words are, we will send someone to take blood samples, well that can take anything from 7-10days, during that time, I have treated him with Paracetamol, by the time the doctor comes back to me, I just tell him I have got him better myself.

I did read a couple of chapters of a book I was given regarding Alheimer's and Dementia. that was all I could go through, it was so depressing, and, we all know no two people are the same. The whole family and I, although we knew our lives were going to change someday, decided we would take each day as it came. It is only recently, 18 months, that things are different, and, there are some difficult days.
We did lots of things over the years, that we were going to do when we retired, enjoyed going out with the family, and took lots of photo's, that now my husband enjoys looking at, and sometimes a glimmer of remembering. Live each day as it comes, make the most of everything. I am so glad we did all these things then.

I would suggest one thing to do now, for that hopefully, far, far, far off day, do a Power of Attorney.,

Be positive. At the moment, you are fine and hopefully have many good years in front
of you. By then, there can be new medications to improve and control, and, God willing maybe even a cure. Massive hugs to you.

 

[Kevinl]

I've been left to 'get on with life' as I was advised to by the nurse I spoke to after receiving my diagnosis. As a family we have been offered no counselling and nor have I been offered any 1 -1 counselling.

Hi Jacquie, welcome to TP
It's an often told story on here "diagnose and duck out" by the NHS, unlike many diseases there is no continuing care with AZ other that the regular assessments.
At the moment while you're still in shock from the diagnosis I'd just have a read around and see how other have and are coping, there's too many things to cover in one post; legal, financial, emotional etc.
As for the reaction of your family and friends again all too common too, people simply don't know what it means and how to deal with the news, the Alzheimer's society is running some ads on TV and radio leading up to dementia awareness week, hopefully they will make people think about it in a more positive way.
All the best
K

 

[seagull50]

ive sent you a private message, I myself diagnosed at 54 just 5 months ago x

About 4 weeks ago at the age of 54, I was diagnosed with Early Onset Alzheimer's after two years of assessments and every possible brain scan there is. I'm very grateful that I have a young consultant who wanted to explore every avenue open to me and sent me to see a specialist in London where I was diagnosed .
Since having been told I have Alzheimer's I've been left to 'get on with life' as I was advised to by the nurse I spoke to after receiving my diagnosis. As a family we have been offered no counselling and nor have I been offered any 1 -1 counselling. Is this usual? My husband and children won't mention it and if I try to talk to them they either change the subject or become to upset to carry on with the conversation. My GP has offered no help either.
What can I do or where can I go for help?
Many thanks

hello Jacquie I have inboxed you a private message x

 

[seagull50]

Hi me again just like to say something in response to G.P done nothing to help!!
Obviously this what happened with me , I was ask by my G.P if i would go along to the mental health clinics , this was a clinic at that time had loads of resident in patients but also had a consulting surgery , I agreed to go and was diagnosed with mild Alzheimer's , and was ask if I would go on was at the time a trail drug in U.K Aricept this was in 1999 , I have never seen my G.P again regards my dementia almost 16 years since September 1999 at first the Aricept was prescribed by the Consultant and was issued every month at the clinic it was then ordered by the chemist this went on for almost 3 years until the drug was adopted in U.K the prescription was then shared cost between N.H.Trust and G.P surgery at that time it was very expensive I.m still on that same drug today 16 years come November, in 1999 when I was diagnosed aged 57 I was assigned an Occupational Therapist she was present at the Consultation after the diagnoses she ask me what I intended to do give up work or continue , I decided to. Continue to carry on at work as a Surveyor for Local Government obviously in order to continue there were several meeting with the Council management and personal and my O.T this continued at fist on a monthly then after a year on a three monthly basis for 8 Years until my retirement I also had monthly meeting with the Consultant for first 3 years until after having had a PET brain scan in 2003 it changed to every 6 months I could go on but what I'm saying is the Medical Consultant and Occupational Therapists both love they both had a challenge with me employers to keep me at work my O.T was brilliant she didn't mess about or take any prisoners , Obviously I was fortunate and to have her on board my diagnosed in 2003 was changed to F.T.D I sill see the Consultant and O.T every six months now , but it's more of a friendship now first names Christmas card ect

Hi just got back from breakfast reading my reply and now noticing all the grammar / spelling mistakes had to believe t
Hat I was once a Surveyor for 25 years writing contracts sometimes 3 or 5 million pounds but that's. "dementia" my main problem I know exactly what I want to say in my thoughts but it get lost or loses its connecting by time it get to speech that when I start swearing not at the person but the fact I lost my thoughts or words so annoying happens so long doesn't worry me though


Cheers Tony

how very expiring you are. im just 5 months into my diagnosis and on the rivastigmine drugs. Im 54 now and having hid myself away for the last 5 months im slowly emerging once again. I was a physio and sports therapist and my first indication of things not being quite right was forgetting my clients appointments, funny looking back and bless them all they took it very well, but at the time devastating! 1 day at a time I keep telling myself and thats all most of us can do really! bless you

 

[MLM]

Oh how I wish we could have a little bit of your approach in our household. My father-in-law (now 55) was diagnosed last year and NEVER talks about his dementia. We all find it extremely frustrating, especially my mother-in-law and my partner, as they really want him to open up.

Persist with finding ways to talk about dementia and how you are feeling. There are many positive things going on in our local areas and nationally about dementia which could be a good way to open up a dialogue with them about how life isn't necessarily ending but it is going to change and there are ways that you can be supported without it being all doom and gloom. The fact that you are on here makes me think that you yourself know that so maybe they just need a point in the right direction


Sent from my iPhone using Talking Point

 

[Countryboy]

how very expiring you are. im just 5 months into my diagnosis and on the rivastigmine drugs. Im 54 now and having hid myself away for the last 5 months im slowly emerging once again. I was a physio and sports therapist and my first indication of things not being quite right was forgetting my clients appointments, funny looking back and bless them all they took it very well, but at the time devastating! 1 day at a time I keep telling myself and thats all most of us can do really! bless you

hi Seagull50 I think we all been in the same situation at first it so frustrating embarrassing and upsetting to the extent we beat ourselves up about it and get angry , until we finally realize it’s not going to get better and all the worry and frustration possibly make it worse , and we then start to lose some friends and the social life starts to go into decline , but accepting the dementia a moving on for yourself not family or friends yourself is in my opinion the best or only way forward remember a person in their mid fifties could have another 35 or 40 years ahead of them long time being miserable or beating yourself up , I was 57 when first diagnosed carried on at work until my retirement at age 65 , sixteen years for me now since diagnoses and don’t feel any different now than when first diagnosed all that time ago { well older !! }
so be positive and forget the doom and gloom side that will come soon enough

cheers Tony

 

[Maiakins]

Join the early onset group!

I have started a group because doing the search for early onset is something I have to remember to do!!

Please feel free all to contribute!

 

[Maiakins]

how very expiring you are. im just 5 months into my diagnosis and on the rivastigmine drugs. Im 54 now and having hid myself away for the last 5 months im slowly emerging once again. I was a physio and sports therapist and my first indication of things not being quite right was forgetting my clients appointments, funny looking back and bless them all they took it very well, but at the time devastating! 1 day at a time I keep telling myself and thats all most of us can do really! bless you

loved reading your post, do join our new early onset group!