Early Onset Alzheimer’s-Just diagnosed at 52

[t0ny]

Hi,

Just had the bombshell that my partner has been diagnosed with early onset of Alzheimer’s at the age of 52. She is fine, full of beans as usual but has the odd lapse of memory which are getting more noticeable.

Have any of you any experience of what happens next and over what time frame? Any good advice to give? I am the same age, so I we need to plan ahead and develop a strategy to make the most of the next n years not mention financial planning.

Love to hear of any useful websites and sources of information that you may have. I am just learning about Alzheimer's and its various stages.

Regards

Tony


Tony

 

[Scottie45]

Welcome Tony

Hi and welcome to TP,you will find many people on here who will be able to help sorry i am not one of them as my mum is 83 and has this horrible illness,but there will be others along soon to help you,i just wanted to say HI and you are not alone.Take care Marian x

 

[jenniferpa]

Tony welcome to Talking Point although sorry you had the need to find us.

There are, sadly, quite a few spouses in your position so hopefully you will get a fair number of responses.

Probably the first practical thing you should do is get LPAs (lasting power of attorneys) drawn up for both of you plus wills if you haven't already. Not being able to manage your spouses finances when the time come is a real problem, so don't delay.

Take care and if you have any questions, post away.

 

[TinaT]

Hi Tony,

I'm very sorry to hear of your news. I doubt if even doctors can tell you any sort of time scale. Dementia varies so much from person to person, depending on which parts of the brain are affected.

My husband was in his 50's and went through the early stages with no diagnosis. I was working hard and although I did see warning signs, I completely dismissed them as him getting 'grumpy' or 'careless' etc., etc., and he managed to cover up his problems from me for quite a number of years. Then he deteriorated quite rapidly. At that point we both knew something was terribly wrong and we got a proper diagnosis. In my nievity, I thought that he could get some medicine which would 'stave off' the disease for many more years. I was wrong.

My advice would be to make full use of the time you have together whilst your wife can still enjoy things with you. Don't put off for tomorrow what you both want to do. Do it now and enjoy your time together.

I would also join any local dementia and carer groups in your area. I learned how to cope with my partner's illness by a process of osmosis, listening and watching how other people coped. Is there an Admiral Nurse service in your area? If so, I would contact them. They have given me a great deal of support and help over the last few years. I also found this wonderful site - Talking Point - and learned much more about how to handle things.

Take each day as it comes and get as much pleasure together as you can, that's the most important piece of advice I can give you at the stage you are at.xxTinaT

 

[beech mount]

Hi Tony,
My wife was about 51 when she got AZ and within 3-4 years had
lost the ability to type,read and write.Do start the process
of getting LPAs,this is such a nasty illness that there is no set progress,its diferent for everyone and i agree with all that Tina says.
Best wishes,John.

 

[lesmisralbles]

Hello Tony

My advice would be to make full use of the time you have together whilst your wife can still enjoy things with you. Don't put off for tomorrow what you both want to do. Do it now and enjoy your time together. Quote: Tina T


Yes, do it all now And, may many year's of happiness be ahead of you both
Barb XX & Ron ZZZ

 

[living in hope]

Hi Tony,
My husband left work 4 years ago, but was only diagnosed 2 years ago as we thought it was stress, so we think he has had it for at least 5/6 years. Over the last 4 years we have had many holidays and have enjoyed them all until Feb this year when Brian did not know we were on holiday in Florida, so did not enjoy it, that was to be our last holiday, following a recent bout of diarhhoea and sickness he was in hospital for 4 days, then went to respite and is now to stay in the care home on a permanent basis. We none of us know how this illness will develop so live life to the full and make each second count. Good luck to you and your wife
Love
Lorraine

 

[Brucie]

Hi Tony

my Jan was 50 when symptoms started, but we had a further 11 years when things were manageable before I had to step back and let others do the majority of the hands-on caring.

I've since had a further 8 years of that, and I'm expecting many more years yet.

As others have said, embrace each moment now, record it in diary or on camera as that will help in time to come.

As things develop, recalibrate your expectations and plan and live accordingly

Do everything you wish to do until that day when you will realise it is no longer a benefit for either or both of you.

 

[Norrms]

Hiya Tony, i myself was diagnosed with the early onset of dementia a few months ago and i am only 51 yrs old. Worrying about what " Might" happen comes naturally but as there is no definate time scale to this awful illness you must both live for the day. Yes i went through the " Why ME! stages and the stamping of feet and the tears but once through that, common sense sets in and the best thing is to enjoy the day as it comes. Sometimes i catch my darling wife looking at me and worying, this only upsets me even more so all the smiles you can give your wife please do and tell her you love her everyday. It works for me !! Hope this helps, best wishes to you and all your family, Norrms and family

 

[KenC]

Well Done Norrm

When you get a diagnosis like this it is a bomb shell from hell, and I can not describe it any other way, because it is devastating. Norrm answered before and, I could not have said it better than he did on this thread.

However we can also say that all the information you require can be found on the main Alzheimer's Society Website on the fact sheets.

But I think you have to take each day as it comes, and keep on going as if there was nothing wrong. Its when you stop and worry about it that things can get you down. I have many good days and some not so good, but we have to remain positive as long as we can for our carers and families sakes, because they will be upset if they think we are struggling.

But you are among friends, many of whom have this horrible illness, and we still keep going.

But it should also be said that we all keep each other going at times when we need help, and that is the main thing.

Very Best wishes and keep posting

Ken

 

[t0ny]

All,

Many thanks for your support.

I am not alone which is good, very good. In my mind a I am fighting off the advantages of age in fighting the disease V it must be a strong disease to overcome a 52 year old. I can argue it both ways but it seems there are no rules.

The legal issues of power of attorney are being dealt with this week, thanks for the advice.

I don’t know the rate of decline of my partners illness yet but I have just become very sensitive about it. It feels strange, the phrase "I can't remember " has just become very normal.

Bizarrely, my employer is looking for volunteers for redundancy but with a pretty basic package. The advice from the respondents is to make the best of the next few years so why not take redundancy and enjoy life. On the other hand, I think it naïve to think that spending 24/7 with each other helps, we will get on each others nerves I am sure. Any thoughts on the matter?

Regards

Tony

 

[jenniferpa]

I think only you and your partner can answer that question Tony: so much depends on your current relationship. As she is still at the early stage I can see her getting a bit spooked if you're there all the time: it may over emphasize the illness. In the other hand, you do want to make the best of the time you have.

 

[Vonny]

Hi T0ny,

Others may disagree but I found caring for my husband 24/7 (not AD, it's my mum who suffer from that) made me very insular and 100% focused on the illness rather than us enjoying our time together. I'm sure everyone will have differing opinions on that one.

On another tack, one thing I've noticed both from posts on the forum and experience with my mum, is to watch out for UTIs (Urinary Tract Infections) as these can have devastating and sometimes non-recoverable results if not treated pronto. I don't want to add to your worries, but since you mentioned timescales, UTIs can shorten quality time together so be vigilant.

Nice to "meet" you, and please keep posting

Vonny xx

 

[TinaT]

It is tempting isn't it when something comes up like this at work! What is so difficult to get your head around is the fact that you just do not know how long your time together is, nor the speed or otherwise of the disease.

With most illnesses there is a well defined path to follow and one which either results in a cure or at the worst, a death and usually there is some sort of time limit involved. There is no set time or set path to follow with dementia. The illness leads you!

This is one decision which will probably affect you in so many ways. I was suddenly faced with having to leave work because my husband couldn't be left alone and I still miss my work after 4 years absence. I miss the status I had, I miss the money I had, I miss the security of a daily routine and I miss the companionship of people I liked and worked with.

xxxTinaT

 

[t0ny]

Hi,

Many thanks for your responses. Today was a low for me, a little weepy in fact. I was trying to be practical with money matters and financial planning using a spreadsheet, clearly one of the axis was time. The columns were the years and I was having to put in an END date.

I left work early but I was in a bit of a state when I arrived home with my partner Caroline, explaining some really horrible facts of life about Alzheimers (she already knew more than me). She was asking me about money, pensions etc and I explained that I had this rather simple spreadsheet.

I had green, amber and red columns. Green was good years, amber was when she needed care from myself and I could not work, red was when the care got beyond me. The problem is that the spreadsheet can't handle vagueness, you have to choose a column or a range etc. I choose 8 years to coincide with being 60. (2 green, 4 amber and 2 red). Life in three colours.

Strangely, she was no where near as upset as I was, hardly shed a tear. Early days yet, but at least we are talking about outcomes, even if we don't know when they will occur. No conclusions yet, I need to let the dust settle a little and avoid knee jerk reactions. Green years are the most valuable if not priceless and there are shades of green.

More news as life unfolds.

Regards

Tony

 

[icare2]

just do your best

hello, all there is no easy answer, everyones got there own !!!!

just do your best !!! you can do !!!!!

 

[zebb37]

I think it naïve to think that spending 24/7 with each other helps, we will get on each others nerves I am sure. Any thoughts on the matter?

Ironically though, this will come to pass. I had to give up work within a year to look after my wife full time - of course it is not the same with everyone.

I now get 3 hrs care per day for my wife with wich I do the shopping and have a meagre social life.

 

[carrie99]

Hi everyone, (angry face is a mistake!)

I was diagnosed with Alzheimer's last Friday at the age of 52. The meeting at which it was confirmed was a complete shock, despite the fact that I had been having diagnostic tests, MRI scans and all the rest of it. You would have thought I might have twigged on earlier!

If you get you head around this, I am T0ny's partner, so you can see both sides of the story. T is trying to carry on working (despite my interuptions today!)and I have just managed to get online (he of course knows this as he had to help me register).

We are both almost the same age, within a few weeks.

I have a background of training and IT, but as I ran repetitive courses in the public sector more recently, the nature of the training rather masked the problem I think.

Eventually I resigned (oh how I wish I had gone through the ill health option rather than just resigning.) But I just thought I was stressed.) T did have to listen to me on the train home with my woes. I then managed to get another job, a very straight forward one, and lasted exactly 2 weeks before I displayed bizarre symptons including shouting at the MD. I resigned, did nothing for a year and here we are.

So it's a new phase of our lives. I sing in a choir. No problems reading the music (by sight, I am a bachelor of music), but you should see me trying to organise the music before a concert - I ended up having to share because I couldn't organise it.

End of rambling now

 

[zoet]

Hi Carrie and Tony, I am very pleased to meet you. Welcome to TP; everyone here is lovely and you will always have someone to talk to. Im so sorry Carrie, that you've had such an early diagnosis. I hope you can just take each day as it comes, and when the shock has finally worn off treat each moment you have together as precious. Wishing you all the very best, Z x

 

[susiesue]

Hi Tony

.
On the other hand, I think it naïve to think that spending 24/7 with each other helps, we will get on each others nerves I am sure. Any thoughts on the matter?

Tony

My husband was older than your wife when diagnosed with probable Early Onset Alzheimers and as a result we both retired (we worked together before that).

I agree with all the comments about making the most of your time together while you can. However, from experience I agree with you that spending 24/7 together you will more than likely get on each others nerves.

This disease is extremely wearing and mentally exhausting and I believe that for your own sanity you need to be able to get away and have a break from it while you can. There will no doubt come a time when you are needed 24/7 but at the moment in my opinion you should carry on working.

Take care