1. Carole Waters

    Carole Waters Registered User

    Apr 2, 2011
    On March 10th 2011 after 18 months of believing my husband has had some sort of breakdown caused by excessive pressure at work he was finally diagnosed with early onset Alzheimer's at the age of 56. As a family we are devastated, my husband is now unable to work or drive a car and is very depressed. On top of receiving this devastating news our financial situation is dire. Because my husband is not of pensionable age we do not seem to be able to get any help from anyone. We are unable to touch his pension until he reaches retirement age in the meantime we have bills to pay and no income other than benefits of £65 per week from the Dept of Work and Pensions. I am now the bread winner earning a small salary with a part time job. I will now be looking for full time work but I am worried as to how long I can work full time before I am unable to leave my husband on his own all day. Before my husband's breakdown/diagnosis he was earning a good salary, unfortunately due to his illness and being unable to work we have been living off savings for the last 18 months but not worried to much because we believed that my husband would eventually be fit again for work and be able to get back to earning a good salary. Our savings are now just about depleted the only asset we have left is our house which we are desperately trying to sell house but unable to do so because of current dire situation in the housing market. We are facing an extremely uncertain future unless I can get help from somewhere. I am trying to come to terms that my dear, young husband is going to deteriorate before my eyes and not having the financial security to keep us safe is leaving me at nearly breaking point. My husband feels as though he has failed us by not been able to support his family which is making him more depressed. I feel as though we have been sent home by the hospital with no hope and a packet of Aricept that possibly might help in giving my husband a bit more time. What are people like us supposed to do when this devastating disease hits someone before they are drawing their pension? the Government seem to believe that everyone will be fit to work until they are 65+ without becoming ill. I feel that my husband has been penalised through no fault of his own, his only crime is that he has an incurable disease! Has anyone any advice about help/benefits which we may be able to obtain. Just want to add that before my husband was diagnosed with Alzheimer's he has never had a days' sickness since he started working at the age of 16, life seems so unfair.
  2. danny

    danny Registered User

    Hi Carole. So sorry for you and your family.There are other people who use this forum of a similar age,hopefully, some of them will be around later.

    Finding out what services are around can be quite a difficult task.I would contact your local branch of the Alzheimers Society who should be able to put you in touch with people who can help.

    There is help there,its just finding it,but you have found this forum so that is a good start.

    Has your husband got a Community Psychiatric Nurse,CPN,allocated to him,or a Community OT etc.These people should have a lot of information for you.

    Others will be along soon.

    Also take a look at this website,they may be able to answer alot of your questions.
  3. danny

    danny Registered User

    Brought this back as not many people have seen this post.

    Is it in a quiet section of TP.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you Angela.

    I will move this Thread to the section for Younger People.
  5. Carole Waters

    Carole Waters Registered User

    Apr 2, 2011
    Hi Danny appreciate your reply, somebody from the Psychiatric services is supposed to contacting us so far nobody has been in touch, will try and chase the hospital in the hope that we can talk to someone. Thanks for website address have just e-mailed them. So glad I can talk to someone.

  6. danny

    danny Registered User

    Carole, something to be aware of.You and your husband are both entitled to an assessment of both your needs from social services,however,not many councils are up to speed with services for younger people with dementia.

    I know personally a lady who works full time and the NHS pay for her husband to be cared for,so remember to ask about this as well.

    Try and read up on personal/individual budgets.This could be extremely beneficial to you.

    I know there is a lot to take in but doing your homework now is really important as is getting a good social worker/CPN on side.

    Good luck.

    PS.There really are similar people on this forum,they must all be watching TV tonight:):)
  7. tonyli

    tonyli Registered User

    Jan 11, 2010
    Cornwall England
    Hi Carole, I sympathise with you as my wife was diagnosed at 53. She had to give up her job and last year I finally had to give up my part time job to be with her . You should be able to get incapacity benefit, currently about £90 per week, and a level of disability living allowance (various levels). Keep up with the Aricept, Ginna has been on them for 5 years now and they have helped enormously. You will have good and bad days, you will feel trapped, you will long for someone to have a sensible conversation with, you will need the patience of Job (think thats how you spell it) but at the end of the day the sufferer is still the same loving person you married and dont try to argue or explain too much. I say to Ginna every morning 'We're going to have a good day today mate'. Sometimes we do, sometimes we don't. Never was the comment 'It's a tough job but someone has to do it' been more appropriate to a carer.
    Take Care, Tony.
  8. Bastan

    Bastan Registered User

    Feb 10, 2011
    Hi Carole, so sorry to hear about your husband. My husband has young onset Alzheimers, he was 55 when he was diagnosed 4yrs ago. It is devastating and so hard to come to terms with.

    We also had massive money problems when my husband first came out of work, and the loss of his driving license left him very depressed. I feel for you deeply. I was forced to retire from my job as foster carer, for obvious reasons. Fortunately my husband owned the building of his former business and we were able to rent this out.

    My husband was awarded DLA (disability living allowance) and incapacity benefit. Neither of these are means tested, so apply asap as they can only be back dated 3months. He would have got other benefits if he didn't have rent coming in. My husband had a private pension and was allowed to cash in 25% tax free. We also applied for an individual budget and got one, this paid for 10hours day care a week and eventually for 5 waking nights. I never used it to pay for the care I gave but I do know people who have. Which for you would help if you needed to give up work. I think it has changed it name now, possibly direct payments. He should be entitled to this, however you may have to fight for it, try to do so.

    This is so like us, we too put our house on the market, happily we were spared the loss of our home, hold onto it if you can. Of course I don't know your circumstances but one of my daughters rented her house out and came back home. She and her hubby paid us a substantial amount of rent and she also aided in her dad's care.

    I will try to help with the many questions/worries whirling around your head just now, so please ask. A good thing is you have found TP now, you will find a wealth of knowledge and support on here. Unfortunately I only discovered it's existence 4yrs into our journey.

    With love and empathy Bastan. xx
  9. seaurchin

    seaurchin Registered User

    Oct 24, 2009
    #9 seaurchin, Apr 3, 2011
    Last edited: Apr 3, 2011
    Hello Carole,

    I was watching TV last night :D........

    On a more serious note I am so terribly sorry to hear of your husband's illness Carole and your subsequent difficult financial situation.

    I was in a similar situation 3 years ago and I know how terrifying it all is especially when a difficult financial situation is thrown into the mix too. However try not to feel too overwhelmed as I found that if I tackled one financial issue at a time I was able to get us through this part of the nightmare. Talk to your mortgage provider and see what options are available. Can you afford an interest only mortgage to reduce your monthly outgoings, maybe a payment holiday to buy you some time perhaps to consider your options? Take some independent financial advice before you make permanent decisions to see what is available out there.

    If your husband is still able to, get a Power of Attorney...our lives would have been so much easier with one of these in place.

    We receive Direct Payments so that I am able to continue to work to support us. The same two carers (or PAs as I like to call them) sit with my husband to keep him safe and they are wonderful. My husband had an occupational pension which he was able to receive early after leaving work on health grounds. Does your husband have such a scheme? My husband was also awarded Disability Living Allowance and we have a 25% reduction on our Council Tax. Every little thing helps us to survive.

    We also now enjoy much simpler things in life. When my husband is calm enough we go for little walks along a canal and fly a kite on a field nearby our house. We try and enjoy our time and make as many good memories for our daughter as we (or I really) can. I have learned that whilst my husband's difficulties have changed our lives beyond recognition our different life has pleasure and fun too. I try and adapt what we used to do to fit what we can do now, if that makes any sense to you.

    I wish you well but the main thing I would say from my own experience is tackle one thing at a time......

    Kindest wishes to you and your family,

    Helen x
  10. Stewart

    Stewart Registered User

    Aug 13, 2007
    West Midlands
    From reading previous posts on this forum, it seems that the nature of early onset Alzheimer’s causes quite a lot of sufferers to give up their jobs before the illness is diagnosed. As a result, they then lose the opportunity to retire on ill health grounds and receive a pension immediately.

    This almost happened to my wife who just thought that, after 30 years of teaching, the job had become too much. In fact it was the disease that was making it impossible.

    Is there any chance of your husband’s pension scheme allowing him to retrospectively retire on ill health grounds? I used to be a pension trustee and we always tried to be fair in genuine cases of illness like this.

    All the best

  11. missmo

    missmo Registered User

    Feb 26, 2011

    Im sorry to hear about your husband he is so young, my husband is only 62 and was diagnosed at 60 with Lewy bodies he also was on aricept and did quite well on it, now he has been put on Exelon patch and no bad reactions yet but it is early days. I got intouch with the Alzeimers society and a lovely lady from our local branch came to visit, she did everything for us got us involved with local group, contacted the welfare to come out and help us fill in a Disability living allowance form, sorted Ocupational therapist to do what they can around our home, in our case an extra stair rail, grab rails and a bed lever as tom has problems getting in and out of bed and he cant turn at all in bed. We are waiting to hear on the DLA but in your case your wages would not take account as it is not means tested, so my advice is to get in touch with your Alzeimer society in your local area and ask for help.

    Good luck MO
  12. Worried Milly

    Worried Milly Registered User

    Feb 19, 2009
    Hugs and help I hope ......

    Like the other I too am sorry to hear your news - it made me shudder with horror - it was like reading about my life three years ago. Peter is now 62 and has not worked now for some time.

    I too was convinced that it was a breakdown due to pressure at work and he had run his company down financially so badly because of bad decisions.

    I did the following :-

    1. Disaibility Living Allowance - apply for it now - add up the hours you are there for him at night and during the day - he should get the higher level of DLA care and the lower level of DLA mobility. That should bring in about £360 every four weeks.

    2. Because your husband was working and paying NI in the past two years he will quality for ESA - Employment support allowance. Get onto them and put an application in - Pete gets £190 every two weeks.

    3. Get onto Social Services and ask that your husband be assessed now. (not you - just him) have the prices for some day care and carers that you can get into help give you the time you need to go back to work.

    4. User the Care Worker that will be assigned to you - we are lucky and Pam is amazing and she points me in the directions of other help all the time.

    5. Contact Crossroads and get on their waiting list for help - they give 2.5 hours a week which you dont pay for. This gives you time to get out and do the odd thing on your own - doctor. dentist etc. The carers are paid for and not volunteers but Crossroads is a charity and you receive it free.

    From someone who is in the same position with two children still dependant - I send you lots of love and best wishes - my neighbour said that each evening when you go to bed you have to remember to pat yourself on the back and remind yourself of how well you have done that day - please do it.

    With love
  13. Relm

    Relm Registered User

    Jan 24, 2011
    I am not an expert and I am not able to offer much help with your anxious predicament but the suddenness of onset may make the diagnosis worthy of a bit of investigation. I can tell you below what makes me say this.

    I am 55 and have also recently had a similar diagnosis to your husband of young onset Alzheimer's. However certain features of my symptoms have made me wish to question the accuracy of the diagnosis. Of course I know it's natural for someone to do into 'denial' when they are given unexpected devastating news and I have to guard carefully against feelings of denial biasing my view of the situation.

    My diagnosis was arrived at by a neurologist (who did various scans), an occupational therapist specialising in dementia, a psychiatrist and also a psychologist. So there were several inputs from the medics.

    Although the diagnosis of young onset dementia may turn out to be correct, it still does not seem able to account for the most troubling symptoms I get which are very severe fluctuations with very rapid onset and which last for hours.

    painstaking observations of the symptoms over a period of many months have shown us there is a pattern to the fluctuations which probably reflects some other illness that is superimposed on the dementia. I have various bodily aches & pains which had been thought to be too strange to be due to a physical illness and so their origin had been diagnosed as psychosomatic but, however valid psychosomatic pain may be, we are now not so sure these aches & pains should be ignored.

    In fact, this other illness may be more significant than the dementia (which could be at a much earlier stage and less troublesome on its own than has been assessed).

    I REALLY DO NOT WANT TO CREATE FALSE HOPE neither in yourself nor myself but we have decided to put some effort into getting further investigations done via the GP. You may feel doing that could be helpful there too, especially as you do not refer to looking back and noticing subtle tell-tale symptoms before the 18 month period of your husband's breakdown.

    Please remember I am not an expert.

  14. murray548

    murray548 Registered User

    Mar 21, 2011
    Hi Carole sorry to hear about your situation. My wife was diagnosed in 2009 when she was 51 years old !!

    We are in a better position than you but I'm wondering how long I will be able to keep working full time.

    My wife doesn't drive anymore but does qualify for free travel and uses our local bus service regularly although she only uses one particular service as she gets a bit confused with ''new stuff''.

    U need to tap in to yoyr local Alzheimer's Office wherever it may be.

    We are ''lucky'' as we have an excellent set up in Dundee.

    For what it's worth my advise would be to treat every single day as a brand new start and don't waste any time waiting for the future.

    The future is now !!!

    God Bless

  15. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    You can apply to your local Council for excemption form.

    Apply for the form, take it to the Doctors.

    My husband was diagnoised age 56. If you contact you local Alzheimer's Branch you will find them a great help.

    Best wishes
  16. carrie99

    carrie99 Registered User

    Apr 26, 2009

    I was diagnosed with AD at the age of 52. It is not (for me) a life sentence. I am allowed to drive with an annual driving assessment.
    You should certainly be able to get onto the Support Group which means you do not have to work. Having said that, there seem to be fewer Practice nurses than there was last year. I get about £200 per fortnight - it is a great help
  17. Traherne

    Traherne Registered User

    Dec 2, 2009
    Hi Carole.
    So sorry to hear of your plight. I am in a similar position. My wife was diagnosed some time ago with early onset Alzheimers (She's now 55) and had to give up work before that, although we suspected what the problem was anyway. Our experience on the financials should give you optimism.

    Firstly, see a benefits advisor and try to make use of any local advocacy service...your local Age Concern may help here. (Our local Age Concern is now acting in conjunction with other agencies to offer support to early onset sufferers). And of course your local branch of the Alzheimer Society!

    The nitty gritty...your husband will be entitled to ESA. Don't accept him being placed into the work-related ESA group. They always try that one...he should be placed in the ESA "Support Group". Not easy and you may have to fight for it, but it's worth it.

    Secondly ...DLA. Probably the high rate on care and low rate on mobility...it may be helpful to enlist an advocate on this one.

    AND don't forget, your local council may offer a discount against council tax for people with "limited mental capacity". (A phrase that doesn't sound nice but a useful one to get your point across).

    We get all these and it makes a HUGE difference to our income. I'm self-employed and work full time but as time goes on my hours are getting less and less.

    Lastly...look into the Personal Budgets which are being rolled out around the country. We've just applied and what it means is that you are allocated a sum of money which is spent on care services of YOUR choosing.

    Take care...Andy
  18. small

    small Registered User

    Jul 6, 2010
    This is such a useful thread, can it be earmarked in some way- like a 'sticky ' or something. I'm not technical and don't know how to ask the moderators.

    It just seems to me that real people's experience and advice on all the possibilities in these circumstances are sometimes easier to understand than the the guidance given in I The Society's information sheets on these subjects. speaking as someone in the same boat!

  19. missmo

    missmo Registered User

    Feb 26, 2011
    In our council we should have been entitled to Exempt council tax for Tom, they had no problem giving me the form but when i went back to hand it in, cos we couldnt tick a box listing any benefit we were suppose to be on, they said it couldnt be accepted. We are on 2 small pensions which are actually £8 under the government threshold, but there was no tick box for low income, only benefits or old age pension. I had a fight on my hands for them to accept the form, I wanted to draw a tick box for low income, but instead they wrote a note, after 12 attempts to get a zero balance on the council bill I asked for a complaints form to complain about discrimination for people on private pensions, it seems to have worked.

    I am amazed how many hurdles we have to jump to get our any benefits which we are entitled to, we have just got our DLA through but only on the lower rate mobility, and we have so much trouble as Toms walking is bad, travelling on public transport is bad as he tires, his legs seem weak so he is very unsteady, I feel frustrated, we are becoming prisoners in our home and I look around at people who get this full mobilty and see that they walk better than tom and I wonder if this too is discrimination against this type of disease.

    xx mo
  20. Ickle L

    Ickle L Registered User

    Sep 6, 2004
    Hi Carole
    Just wanted to add my support to your situation as my Father was diagnosed with Early Onset Alzheimers 10 years ago now at aged 52. I can only speak from my perspective as a daughter but hopefully it will help somewhat.

    Throughout the years it has been a tough journey and I feel for you when you say you seem to have been sent home from the hospital with some tablets and pretty much left to deal with it. We felt very much the same, left dangling and just had to cope. I remember standing in the hospital car park (having just told Dad, me and my Mum were told and it was up to us to decide if we wanted to tell Dad, not sure if this is the norm, but it felt wrong) and we all stood there in silence thinking “What now?”.

    Sometimes you can feel very very alone, as almost you are the only people going through this. Keep visiting the forum, I have only started to post recently again but have always read it and it is an amazing source of support. Especially in times when something is driving you insane, pop on and there is someone who is going through exactly the same thing and has advice and support. I did a Trek for Alzhiemers a couple of years ago now and everyone was effected in some way or another with the disease, just knowing you are not alone is a huge comfort. People who just understand the daily things you have to go through financially and emotionally.

    I do believe it brings up a whole different set of problems for Early Onset sufferers and their family, both financially and emotionally. My Dad was the “breadwinner” in our family and for him not to be able to support his family anymore was the hardest thing for my Dad, and Mum in a sense, to deal with. Dad did everything, made all the decisions, organised holidays, he was always in control etc etc. Mum found that hard at first. My parents had been together since they were 16 and had plans for retirement. We did feel very much left to defend for ourselves and did for a good many years. Mum had to take early retirement and has become Dads full time carer. She is a stubborn woman but the strongest woman I know!

    What we later found out when we started delving into everything that Dad had been “forgotten” and “missed” on the list. So my advice to you would be to act now regarding support, and future support that you may need. Contact your social services and ask what is available to you, you may know that you do not need certain support now, but its nice to know what is available for the future. A good place to start as many people have said is to contact your local Alzhiemers Charity. You should be able to get disability allowance and other benefits. We have a lady at the moment is sorting everything out financialy and seeing what we can get and what we are missing. Its brilliant. Get your husband assessed, contact the council regarding council tax, this really helped my parents financially, pretty much all the advice people have given you.

    Sometimes with the shock of the diagnosis and coming to terms with that, all the financial aspect is the last thing you want to deal with! Also as said before, get assessed for day support, for a sitter. My Dad had this before he went into hospital a few months ago ( he was diagnosed with cancer another story!) and it was great. My Mum was able to get some of her life back, you will be able to get to work. Again the sooner you do this the better, and your husband will get used to people being around. We found it very difficult at first as Dad found it very hard to trust people.

    The sooner the better though, and I echo the Power of Attorney advice. Get this done as soon as you can, also if there are any bills in your husband’s name it could be an idea to get them changed while your husband is still ok to speak to companies. We didn’t even think about this and got to a point when we needed to speak to people and they would only speak to Dad who doesn’t have a clue what going on! Stupid mistake in hindsight, but with everything going on it’s the last thing on your mind!

    There is help out there, if you get nocked back or hit a brick wall try again. Keep trying, sometimes it seems like an uphill struggle but keep with it.

    Try and take one day at a time, enjoy each moment. There will be very hard times and very good times. Times when you are so angry and times when you feel exhausted. Times when you will feel useless and times when you feel like a superhero.

    All the best Carole and keeping posting when you need the forum for advice, support or a vent! I wish I had in the early days (hence the long post!!)

    Take Care

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