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.