Our Story - so far

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Our Story - so far

Postby Lynn2009 » Sun Feb 01, 2009 5:33 pm

I also hope Terry sees this, it's our story so far and I will try to keep you updated as the situation moves on:
My husband was diagnosed with Alzheimers Disease in August 2007 aged 58, this is our story so far:

I began to suspect something was wrong in 2004, Michael, my husband, had had urgent surgery to remove a Malignant Melanoma from his arm in April 2003, within the following twelve months he became very paranoid and had no choice but to give up work and take early retirement from the company he worked for, for the last twenty-nine years. As his paranoia worsened, I also has to give up work and take early retirement. We are both well educated and had very responsible jobs within the company we both worked for. Michael was an engineer and was responsible for buying and installing packing lines, I was department manager for the installation of security within the computer systems used by the company.

In July 2005 we went to live in Lancashire to be near both of our children. I made Michael go to the doctor and asked for a referral as his memory was now being affected. The family doctor, at the time, would not refer Michael onto a hospital as he said that Michael drank too much alcohol and that the symptoms would dissipate if he stopped drinking. This seemed to me to be nonsense, Michael drank but I would not say excessively, however, we did cut down on the alcohol and as Michael go no better we went back to the doctor. He still would not refer Michael to a consultant until I insisted that we should see one. The diagnosis was confirmed in August 2007. Imagine how we both felt, Michael and I were very apprehensive as to what the implications were and what the future would hold, however, neither of us knew then anything about the illness but, unknown to us at the time, we were about to find out very quickly what this would mean to our lives and that of our family. it was at this point that I applied for DLA without much luck. We were, however, awarded the lowest care component of the benefit.

We had always intended to retire to Dorset and so with a little trepidation, I sold the house and we bought a smaller house in Dorset. Michael knew we had moved there and was quite happy with the move. By this time, after applying again to the DWP for more benefit we were awarded the medium care allowance the lowest mobility allowance and I was then able to claim carers allowance. We needed to do quite a bit of work on the house and were given a loan by a very dear friend to get the work done as quickly as possible, Michael was deteriorating seemingly on a daily basis. The house was finished and all was well for a few months, however, Michael's deterioration became more aggressive and it was very clear by July 2008 that I would not be able to nurse Michael without the support of family and close friends in Lancashire. We tried to sell the house to move back to Lancashire, however, the recession had just hit and we were unable to sell. In October I decided that the best thing to do, for both Michael and myself, was to move back regardless of the house not being sold. I had to find a house that suited Michael's needs, downstairs bedroom and bathroom, my daughter found us a bungalow that was £660.00 per calendar month. In order to pay the rent for this bungalow, I decided to rent out our house in Dorset to help pay. I again asked the DWP for an increase in DLA and we were awarded higher rate care component

We came back up to Lancashire in October 2008, by January 2009 Michael had deteriorated so much that, because I could not cope any longer with 24/7 care, Michael was taken into care. The day Michael went into a care home on an emergency admission was the worst day of my life. Alzheimers Disease is the worst illness anyone can have, they say it is a "living bereavement" - how true. I felt as though Michael died that Monday January 5th 2009, it is a day I will never forget as long as I live, and yet Michael, or at least the body of Michael is still living in a care home close to me.

From the diagnosis up until the present I have had to fight tooth and nail to get Disability Living Allowance and Carers Allowance from the DWP. Because Alzheimers is classed as a "Social Issue" and not a "Medical" one, anything we are entitled to is financed through Social Services and not the NHS, thereby not being free at point of contact. Michael has a terminal illness and is only 60 years old, if this terminal illness had been anything other than Alzheimers Disease i.e. cancer all of his care would be paid for by the NHS (Government), however, because of the label "Social Issue" his care is not free. Michael and I have worked all our lives, paid into the NI Scheme, payed Tax, and now because we had to take early retirement,due to his illness we have a poorer works pension that we had planned. Michael will never live long enough to claim his state retirement pension, and now 50% of his works pension will have to go towards the cost of his care. 50% of the rent from our home in Dorset has to be given over to Social Services towards his care - this is purely because of the label "Social Issue" place on the disease.

In the last four weeks, I have not only had to come to terms with the fact that my 60 year old husband is in a care home, but that I will lose a considerable amount of our income to pay towards his care, regardless of the extra money it is costing me to live in rented housing. On Thursday 29 January 2009, whilst coping with all of the above I was sent a leaflet explaining how care charges are worked out, imagine reading and getting confirmation that, by law, I may lose half of the proceeds of the sale of my home, when it is sold, to go towards care costs for Michael. This technacality arises because I do not currently live in the house due to the fact that, because my husband was so very ill and I found it impossible to cope on my own, we moved into rented accommodation in Lancashire, leaving the family home in Dorset. This has put even more stress onto me. Until the financial assessment is completed and I find our exactly where I stand with regards to my home, I fear that after 36 years of paying a mortgage, and all of the hardship that implies to people from my background and age, I may have made the many sacrifices for nothing. If half of the proceeds from the sale of my home have to be taken to pay for Michael's care, I will never be able to afford a home of my own again.

Please explain to me how this can happen just because of the name of the terminal illness my husband has, and how it can be justified to leave me with virtually nothing after all these years marriage.
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Postby chris.ph » Sun Feb 01, 2009 5:53 pm

there is nothing we can say or do to make any of this hell any better, but im sure the other forum members will have you and your family in our thoughts and prayers.
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Postby Dotsie » Sun Feb 01, 2009 5:58 pm

Lynn, no-one can explain this, except to say that the people who make these decisions don't have to worry about money.

I hope you can get this sorted out. All the best.
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Postby Tonyblack » Sun Feb 01, 2009 5:58 pm

Lynn, thank you for sharing your (and Michael's) story and I wish there was something that I could say that would make things better.

Alzheimer's has for too long been whispered about. It seems that we have been afraid to talk about it and name it for what it is - a dreadful condition that affects thousands of people every year. And it's not just the person with the alzheimer's that suffers - it's also the families and carers of the sufferers.

I can well remember a woman who had lived next door to my mother for over 50 years who got alzheimer's. Rather than trying to be supportive to this 'good friend', my mother treated her as if she was some sort of pariah.

Terry coming out and talking so openly about his illness has made the subject, suddenly more acceptable. He's being interviewed and talking and people are saying - yes, I know what you mean.

That is an incredible legacy from the man and one that I hope he'll be able to continue with. This dreadful illness needs to be treated for what it is - AN ILLNESS. Sufferers of this illness shouldn't have to go through what you and Michael have gone through. While it's little use to you - we can only hope that things improve in the very near future.

I wish you, Michael and your family all the very best. Thank you again for sharing with us and please continue to keep us informed.
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Postby silverstreak » Sun Feb 01, 2009 6:46 pm

chris.ph wrote:there is nothing we can say or do to make any of this hell any better, but im sure the other forum members will have you and your family in our thoughts and prayers.


You've said it Chris.

I can sympathise with you Lynn as I am at the moment dealing with the
DWP and am shocked by the carer's allowance and the strings attached.
Have strenght.
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Postby Tiffany » Sun Feb 01, 2009 7:16 pm

I am with everyone else here on this Lynn. It's a dreadful situation you have ended up in through no fault of yours or Michael's.
I must say I didn't realise Alzheimers wasn't classed as an illness. It jolly well should be.
All the Best to you both & your Family in the future.
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Postby Jan Van Quirm » Sun Feb 01, 2009 8:20 pm

There's nothing I can add to what's already been said except to offer my own sincere sympathy for you and Michael's situation Lynn,

The DWP are not my favourite people. They have so many rules and regulations and 'interpretation' around that stupid maze of red tape for the average person (who genuinely would not be asking for support unless they really needed it) is mind-boggling. The hoops they make you jump through verges upon criminal. My own illness is at least recognised as that, but because it is mental not physical, it's not obviously serious and there have been times when I just KNEW I was being treated as though I was conning them out of Incapacity Allowance for no reason at all. And the worse thing of all is that you start to give up with them, because you or your loved one is so ill you just aren't able to cope with having to justify yourself the whole time, when they say all their stupid little criteria boxes aren't being ticked enough. :x

I had my Incapacity benefit taken away at one stage and appealed it. They were very good at explaining how I could do this, but managed to bury my appeal under 'backlogs' so that it took 6 months to get to a tribunal and in the meantime I was also, very kindly, told that I probably wouldn't succeed. Well I DID succeed! It nearly literally killed me because I was on the edge of suicide at times, but I saw it through and even then it took them almost 3 months to refund me the benefit I should have been receiving all along. To cap things off because my appeal was heard in December it took another 6 weeks for them to get my benefit updated and so they also had to repay the difference for that as well...

This doesn't help in your case I know, but you can get meaningful support in unlikely places and when you find them please use them - I found mine on a forum similar to this and the friends I made on there helped me through a dark time when I was completely lost and virtually hopeless. People can understand, even people who have to administer the system, as a few of the staff (too few regrettably) I dealt with at the DWP were able to offer practical advice, which wasn't much, but at least I didn't feel quite so railroaded at times.

Belonging to this particular forum is a delight - truly! Terry is an inspiration not only because of the work he is now doing, but because his books have for years been providing a tonic and a joy and understanding of the human condition to his readers all along, by holding up a mirror to this too real and gritty world and cocking a snook at the stupidity of bureaucracy and false values through satirical humour. We're here because we love the books in most instances I think, but also because we recognise the wisdom and compassion of the author. So welcome to the forum Lynn. You are amongst friends here :D
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Postby Tonyblack » Sun Feb 01, 2009 8:33 pm

The DWP decided to cancel my benefit a few years ago, but they forgot to tell me about it. I was getting paid by payment book in the Post Office at the time and they also forgot to tell the Post Office. The first I knew was when my payment book ran out and I went to see why. The woman there accused me of taking money I wasn't entitled to. :shock:

I filled in an appeal and was sent in the meantime on a governement training program. It all made me so ill that I ended up at the doctor and the whole process started again.

I'm at the situation now where I fill in a form and see a government doctor every two years. I'm due to see one again soon. :?
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Postby Jan Van Quirm » Sun Feb 01, 2009 9:14 pm

That's horrible Tony - I had to go on Job Seekers 'pro-temps' when all this happened to me and I felt so pressurised and hounded it was untrue. It partly did for my marriage too, although we still live together and are friends it just leeched the last of the emotional side of it away.

I've only had one assessment since and because of all the trauma last time I laid it on with a trowel at the medical! With depression its hard enough to talk to a regular therapist at your weekly CBT session about how you're getting on, but expecting a doctor you've never seen in your life to go through the 'nice' little script they're given to check off just how ill you are by asking stupid questions like are you remembering to have the odd shower or wash your hair :roll: It's insulting if nothing else and I feel sorry for the doctor because he's not even making the assessment - that's done by some desk-jockey with no medical quals at all who decides how to grade his notes - totally humiliating and dehumanising.

I have mine in May :evil:
"Some men see things as they are and ask why. Others dream things that never were and ask why not.” George Bernard Shaw
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Postby Norris » Fri Feb 06, 2009 10:41 pm

Few years ago our eldest daughter was going out with a local boy and when I asked him if he was in work he replied that he worked for the DHS (as it was then). I aked what he did and he actually reviewed new applications for income support. I asked him what qualifications he had and he replied GCE O level English! He had no medical qualifications at all and his simple way of dealing with the job was to pass all applications, but he said that his mate who worked at the next desk routinely failed applications without reading them. Makes one wonder just how well qualified the rest of the staff are.
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Postby Norris » Fri Feb 06, 2009 10:43 pm

I should also have added that it has a personal interest to me as I am long term disabled and have been for the last 20 years.
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Postby Jan Van Quirm » Fri Feb 06, 2009 11:22 pm

Hi Norris and welcome :D

I'm not at all surprised with what you say about your daughter's boyfriend work methods - but at least he was passing them all and had good instincts. I bet he had some stick at his yearly assessment though.

I'm an ex-civil servant myself which is partly why I have clinical depression and will never ever set foot inside an office again except to visit - briefly with any luck. My last 'proper' job for what is now the Ministry of Justice was project management - I was part of a management team, but we worked with private contractors/consultants who all got paid about 3 times more than my boss who was about 3 grades or more above me. A magnificent (not :x ) Investor in People department, my IT group spent an absolute fortune on bringing in professional people who knew as much about how the courts worked and the people who use them, as I do of quantum physics, rather than train us to a proper standard.

To be fair our consultants were great at doing risk assessment and working out critical paths, but knew bugger all about what the average 'user' of a civil or family court was there for... All the public sector is about these days is getting minimal, barely adequate resources (which of course mean staff as well) as cheaply and disposibly as possible and the services they are supposed to provide are measured, percentaged and analysed into neat little boxes that pay scant regard to the fact that they relate to people and issues that are human and therefore unpredictable and infinitely varied. No wonder this country is in such an appalling state, where, as someone once observed (probably more than once too), the people in charge know the price of everything and the value of nothing, and people like Lynn and Michael are just annoying statistics.

*fumes uselessly* :cry:
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