Middle age and Alzheimer’s.

phil Maffs

Registered User
Jul 29, 2013
7
0
Amesbury
Middle age and Alzheimer’s.
Hi I’m Phil and my wife Jo was diagnosed with early onset Alzheimer’s July of this year at the ripe old age of 52 Years old. This seems to explain why over the past four years she has been unable to carry out the functions of work and they had been getting progressively worse. My wife was in the banking industry, financial planner, mortgage advisor, private banking manager etc. The banking industry have a lovely way of threating you with disciplinary action for underperformance knowing full well that the a question on all banking role applications is “Have you ever been on disciplinary?” and if the answers yes you’ll be highly unlikely to make it past this stage.

So here we are at 52 years old and diagnoses of Alzheimer’s, so what next. The local memory clinic was great with home visits but there involvement post diagnoses were diminishing. Luckily the Alzheimer’s society was there and wow support, encouragement and enthusiasm to help, inform and guide us. The CRISP programme luckily was a couple of months after diagnosis and what an invaluable learning curve that’s was,

Post diagnosis we were left trying to find out was financial support was available, as you can imaging, my wife is 52 and I’m 46 so still 18 years of mortgage payments and the borrowing built up whilst we were trying to find employment for 3 to 4 years for my wife pre diagnosis. My wife had around seven jobs within this time frame but they lasted from 2 weeks to 2 months before the threat of disciplinary was on the table. The master plan was once my wife was working the debt could be repaid over time. Well my wife will not work again and ouch there’s the plan blown out the water, what now!
So on top of the Alzheimer’s diagnoses was the financial affairs, not to mention the introduction of PIP to replace the DLA now there’s another saga.

Ok back to the main theme now I have got that of my chest, and believe me I needed to, Alzheimer’s and Middle age people. The vast majority of external functions and support for Dementia is geared towards the 60-90 age group for obvious reasons. As much as my wife’s has tried to involve herself with “signing for the brain” etc. etc. the age gap was to vast for her to actually generate any enthusiasm to continue
What about us younger people. Early 50’s Dementia and Late forties Carer. Please if anyone has any help, direction or even just a post to say hi would love the communication if nothing else.

Yours Phil and Jo from South Wiltshire – empathy yes, sympathy no thank you

Just for you Julia, finally built up enough umph to post
 
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lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hello Phil and Jo
I am afraid its not much more than a welcome to TP from me
I am sure others will be along later.

I think EOD (early onset) dementia must be so very hard, to me it seems what little proper help, support is geared towaeds older people#Though I must say we have some very active sufferers on TP, who are doing an amazing job of raising awareness and more

I dont know if this organisation can help at all, it wont do any harm contacting them and please dont be put off or upset about the terms they uses such as mental health issues
They are called MIND
http://www.mind.org.uk/information-support/

you need to ensure your wife is claming all the benefits she is entitled to, one that you may not be aware of is a reduction in council tax. I dont know the rules on this, I am just aware that when a person has dementia, they can claim depending on circumstances, either a reduction or zero council tax.
Mind and the Alz society should be able to check you are claiming for all you are entitled to.

The CRISP programme is a new one on me,

The first post is the hardest, it does get easier, you will find we are quite a friendly bunch
 
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BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello and welcome to Talking Point.

I am so sorry to hear about your wife - the disease is hard enough whatever age but extremely hard in your middle years.

It is so very sad that activities are mostly geared to the older age group and I am sorry that 'Singing for the Brain' has not been a huge success. Hopefully your wife will continue to go in the hope that other younger sufferers will join her before too long. Have you discussed this with someone in your AS Branch as maybe they could persuade other younger people to join in too.

There are younger members and their carers here so hopefully before too long you will get some response.

Keep in touch, keep posting and I am sure others will be along to support you before long.
Best wishes
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Welcome from me too.

One thought I had, has she got any private pensions? It might be worth talking to the relevant pensions departments to see if she is able to "retire early" and therefore have a lump sum and a small pension. Not always possible, but worth an ask.

The other thing I have thought about is have you got Power of Attorney for your wife. You may never need to use it, but if you haven't got one and it is needed, life could become more difficult than necessary.

Don't stop posting now you've started :) a mountain of support, empathy, total understanding here and a giggle now and again or just a chat about nothing in particular.

If you have started to make room for a guilt monster STOP.

We all have one, have no idea how to get rid of them, so before you let one settle in your home, make sure you brush it off your shoulder before it even thinks of taking over.

Everything we choose to do is done out of doing something that we think is the best thing to do. If it goes wrong, that's when the guilt monster really has a field day, especially if you have already let it get a toe nail hold on your shoulders, then it can take over. Don't feed the guilt monster, and hopefully it will stay in its place, no where near you.

xx
 
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chris53

Registered User
Nov 9, 2009
2,929
0
London
Hello Phil and Jo, and a warm welcome to Talking Point, so sorry your plans will now change, it does take time to adjust to a new way of living, and at times can be really hard, but along the way there are smiles and certainly understanding, support and empathy by the bucketload here, for myself and hubby, both of our mums are on the dementia journey so most things have been put on hold and many changes and challenges are ongoing:eek: So please keep in touch and take care.
Best wishes
Chris
 

phil Maffs

Registered User
Jul 29, 2013
7
0
Amesbury
Thanks all so far for your respone and support, very encouraging

CRISP = CareRs Information and Support Program.
6 x 2 hour sessions facilitated by our local Alzheimer's society.
 

Vivienne3

Registered User
Jan 25, 2010
57
0
Cheshire
Know how you feel. My husband was 50 when diagnosed and I was 48. We could not find anywhere suitable to give the support to someone younger. I wasn't keen but we were assigned a social worker. What a god send. She arranged for a personal assistant to call in at home initially 10 hours a week whilst I was at work. They took him out to the pictures, shopping, for lunch, bowling etc. This gradually increased to 40 hours a week as he needed more support. He did enjoy the company of someone else as it made a nice change from just my company. It also enabled me to keep him at home for as long as possible as I did not have any other support i.e. his family.
Could be worth speaking to them. Good luck
 

kathleenr

Registered User
Aug 19, 2013
33
0
Hi - my husband was in banking and fortunately got to leave with a pension at 55 before Alzheimer's was diagnosed. I have battled all summer to get him the care he needs as our local service was dreadful and now he is with a specialist in younger patients. The first years have been hard. I've now set up a support group for younger carers so we can try and support each other. Hard for our children hard for husband and hard for me trying to earn a living for us but I am fortunate without debt and with a pension. The Selfish Pigs guide to caring is a good book, it may help, I hope things get better that can do, thinking of you x
 

leicester61

Registered User
Aug 26, 2012
146
0
Leicestershire
Hi my husband was diagnosed at 52, hes now 53 and yes once diagnosed the previous 2/3 yrs of memory loss, tears etc made sense. I havnt found an awful lot of support for younger people and the financial side is a nightmare, still waiting on a decision from PIP nearly 4 months on! unfortunately our financial advisor advised us wrongly ( well illegally in my opinion !) and if either of us live to age 60 we wont get anything and our mortgage wont be covered. most days I try not to think about that side as the condition of hubby is more important but its hard, so I totally empathise with you. The local alzhiemers society however have been brilliant and will continue with help/advise as long as they get funding. got a respite grant off of them to take a wkend trip too so worth asking about that, also if theres only 2 adults in your household I believe you can get a 25% reduction on council tax ( worth checking) the form you ask for is called A severe mental impairment form and if they ask you why you want it basically its not there business just request it. (did that sound rude lol) sorry but made so many phone calls and come across a lot of " jobs worths" who act like its there money, also if you get turned down for PIP definetly appeal, figures show something like 70% of appeals are successful. Hope some of this has help and good luck to both of you x
 

Keaya

Account Closed
Dec 11, 2013
6
0
I can see where this would be true as my mother-in-law , age 94 now , cared for her mother with dementia . Now she is suffering with Alzheimers , and I suppose that I will also follow suit , as I am the only person caring for her . Caregiving is a very stressful job .
 

phil Maffs

Registered User
Jul 29, 2013
7
0
Amesbury
Thank you all for your responses.
So valuble to hear it from you/us Carers.
I have taking lots of good information and will be looking into these things.

Our update
We have adressed our finacial situation thanks to Citizans Advice Bureau. so it's looks like I should be able to keep my wife in our home and for her familier suroundings is so important at this stage of EOD AD.

Pip has been completed now and the back payments, 14 weeks but I had help from our local AS manager actively purusing DWP and threatening MP involvement
The back payments start date was the date we first contacted DWP not the date diagnosis was given though? May have to challange that.

Have submitted council tax reduction form, still awaiting response.
Also, Disable bus pass, railcard, Radar key all in place.

Asked my wife what she wanted for xmas the other day ... you can guess her answer.
"Just want my memory back" If only...... now I know what I would give my right arm for.

Phil xxx
 

Jumballs

Registered User
Dec 4, 2013
4
0
Middle age and Alzheimer’s.
Hi I’m Phil and my wife Jo was diagnosed with early onset Alzheimer’s July of this year at the ripe old age of 52 Years old. This seems to explain why over the past four years she has been unable to carry out the functions of work and they had been getting progressively worse. My wife was in the banking industry, financial planner, mortgage advisor, private banking manager etc. The banking industry have a lovely way of threating you with disciplinary action for underperformance knowing full well that the a question on all banking role applications is “Have you ever been on disciplinary?” and if the answers yes you’ll be highly unlikely to make it past this stage.

So here we are at 52 years old and diagnoses of Alzheimer’s, so what next. The local memory clinic was great with home visits but there involvement post diagnoses were diminishing. Luckily the Alzheimer’s society was there and wow support, encouragement and enthusiasm to help, inform and guide us. The CRISP programme luckily was a couple of months after diagnosis and what an invaluable learning curve that’s was,

Post diagnosis we were left trying to find out was financial support was available, as you can imaging, my wife is 52 and I’m 46 so still 18 years of mortgage payments and the borrowing built up whilst we were trying to find employment for 3 to 4 years for my wife pre diagnosis. My wife had around seven jobs within this time frame but they lasted from 2 weeks to 2 months before the threat of disciplinary was on the table. The master plan was once my wife was working the debt could be repaid over time. Well my wife will not work again and ouch there’s the plan blown out the water, what now!
So on top of the Alzheimer’s diagnoses was the financial affairs, not to mention the introduction of PIP to replace the DLA now there’s another saga.

Ok back to the main theme now I have got that of my chest, and believe me I needed to, Alzheimer’s and Middle age people. The vast majority of external functions and support for Dementia is geared towards the 60-90 age group for obvious reasons. As much as my wife’s has tried to involve herself with “signing for the brain” etc. etc. the age gap was to vast for her to actually generate any enthusiasm to continue
What about us younger people. Early 50’s Dementia and Late forties Carer. Please if anyone has any help, direction or even just a post to say hi would love the communication if nothing else.

Yours Phil and Jo from South Wiltshire – empathy yes, sympathy no thank you

Just for you Julia, finally built up enough umph to post

Hi Phil my name is Andy and my wife has been diagnosed this year with the dreaded disease.
 

Jumballs

Registered User
Dec 4, 2013
4
0
Hi Phil
My heart goes out to you both as my wife Janet is 56 and has been diagnosed this year and its like a thunder bolt when they tell you those words that flow so easy of the tounge! your world has just been turned up side down!!!!!
My wife worked for L&G insurance as a claims assecer and like your wife things started to go wrong but she was of sick for nearly a year and they sent her to different people to find out if it was stress or the like or what was wrong with her.
But it wasnt until we were all together at Christmas last year that we really noticed that something was not right.
They told her she was not pulling her weight and making mistakes. And as my wife use to do my office work I noticed even more towards the end before I had to say Know, you have got to stop doing my office work.
Its a down hill slope as far as I can see and im not looking forward to it at all.
My two girls are 24 and 25 and dont really understand it and wonder why them!
I dont have the money worries you have and can not imagine that stress as well as all the other **** thats for sure.
If you two ever want to come down for a break your more than welcome.
Kep your chin
All the best Andy & Jan.
 

supernurse12

Registered User
Dec 9, 2013
3
0
[Hi Phil and Jo
My namw is Angela Edge and my husband is Tony, he was diagnosed after 6 months of toing and froing to London and our local hospital with familial alzheimers disease at the age of 49 and as he is now 52 we take each day as it is our last. I too had all the torment of trying to find out about finances and services and it took me a long time but your local support group should help. Did you know that you can claim from some electric companies a rebate of about 135 pound it would be a help. Also think about getting lasting power of attorneys done for health and finance as it would be more difficult to do if Jo is unable to understand what is happening, Im glad that we did, and your local council should have discounts that you can access so look into tha also.
Good luck as this is hardest thing that you will have to endure.