1. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    Dear all

    I wasn't sure whether to post this or not but below is an article I wrote for our local daily paper (which I used to work for and still freelance for occasionally). It sums up most stuff about Dad and his situation and I hope it will put people's minds at rest that a diagnosis doesn't mean the end of the world - though heavens knows it felt like that for some time!

    There were some great photos of Dad and Mum with the feature and although Dad didn't read it (he wouldn't understand) he is delighted with becoming a minor celeb in his village!!! I also persuaded the local BBC radio to do a series of programmes talking to mum and dad, other sufferers, local Alz Society, art therapy groups and our consultant. It was great radio - so get onto your local radio station next year and ask them to do the same!!! The girls in the press office do a great job but there aren't enough hours in the day for them to get all the coverage they want.

    Best wishes

    Jo



    More than 5,800 Shropshire people have some form of dementia. Journalist JO CUNNINGHAM reveals how her own family is coping with the disease.

    Anyone touched by dementia says it is one of the cruellest diseases. It affects people physically and robs them of their personality. It is even more cruel when it affects people in their 40s or 50s.


    My family - mum Sue, brother Martin and me - knew something was "not right" about my dad, David, long before his diagnosis with Alzheimer's Disease.

    A career high-flier, he retired in his early 50s. He enjoyed good health, he didn't drink or smoke, competed in triathlons and marathons and was a vegetarian.

    Shortly after he retired we noticed small changes in his personality - things only people close to him would have known.

    The first incident we can pinpoint was on holiday more than seven years ago. Despatched to a Spanish supermarket to buy mushrooms, he returned with garlic. Slowly there were more signs something was wrong, changes in personality for example, but pleas to doctors to investigate fell on deaf ears.

    Diagnosed with depression, it took a serious incident in 2003 for them to listen. Within days they had realised his mental health needed to be investigated and Alzheimer's was diagnosed when he was just 59.

    It was a massive blow, even though we suspected it. Life as we knew it had come to an end, fast-forwarding until the person you love is just a shell of their former self. For Dad, it was relief that whatever was wrong, it wasn't anything he was doing.

    Sadly, he is not one of the youngest sufferers. Because it is an unlikely diagnosis, it is often labelled as depression. But dementia affects a person's ability to remember, understand, communicate, and reasoning skills gradually decline as does physical ability.

    Dad still has a fairly good head for numbers but cannot understand a lot of what is said to him. His social skills are declining, as is his reasoning and judgement.

    There are more than 18,000 people with dementia under the age of 65. People with young children, mortgages, careers and the rest of their lives to look forward to.

    Perversely, the rarer forms of dementia - vascular, when blood vessels are deprived of oxygen; fronto-temporal dementia like Pick's Disease that affect behaviour, emotions and language; and dementia with Lewy Bodies, caused by the build up of protein deposits in the brain when it is deprived of oxygen - are more likely to affect people under 65.

    In a society where dementia is still historically viewed as an "old person's illness", services are ill equipped to cope with young sufferers.

    Young people have different needs - they are more active and likely to have financial and family responsibilities. They can live longer and be more aware of their situation.

    In Shropshire, consultant psychiatrist, Professor Tony Elliott, specifically focuses on dementia in young people. His work, and that of specialist mental health nurse Ann Johnson, continually pushes the need for services for younger people to the fore.

    But my family knows that we are the winners in a postcode lottery. Talking to others through the Alzheimer's Society message board Talking Point, some people are given the damning diagnosis of dementia and simply sent home.

    We cannot fault Dad's care. A community support worker keeps him active and independent. Every five weeks he goes to respite care to The Rowans at Shelton Hospital - a specialist unit for younger people with dementia.

    He also attends user groups with other young people and Mum and Dad, and sometimes us kids (35 and 32) go to Al's Cafe - a group to support entire families - once a month.

    This support is a lifeline. It gives Dad a purpose in life and makes him realise he can still play an active part in society and our family.

    Another valuable source of support is the Shropshire branch of the Alzheimer's Society, which deserves huge recognition. These volunteers raise £40,000 a year to employ two outreach workers who visit carers to offer support and advice and man an office at the Roy Fletcher Centre in Shrewsbury.

    The branch also runs eight monthly carer support groups across the county; funds an art class for people with dementia; buys home care; runs training sessions; outings for support groups; an annual conference; offers legal advice and an annual carer's day.

    So what has a diagnosis of dementia meant? For Dad, he has adjusted and tries to accept his limitations. For someone previously so active, it can be frustrating and he has his good days and bad days.

    It has been hard for Mum. She was expecting a retirement full of enjoying time together. Understandably she sometimes feels bitter, but that's only human. For me and my brother it's also tough - Dad recently admitted he can't remember us growing up.

    We don't think about the long term. We know one day Dad won't know who we are but we will tackle that when it happens. On a positive note, dementia has released Dad's love of art and painting. He stills enjoys the company of his grandchildren and they love his new found passion for hide and seek!

    Each day makes new memories - sadly, we will be the only ones who can remember them.

    This year's Alzheimer's Awareness Week runs from July 3 to 9 and focuses on younger people with dementia.

    For more information about Shropshire Alzheimer's Society contact (01743) 341800. You can contact Ann Johnson on (01743) 492175 or visit www.earlyonsetdementiashropshire.org.uk or www.alzheimers.org.uk
     
  2. TED

    TED Registered User

    Sep 14, 2004
    154
    Middlesex
    I might only have read it quickly (and I promise I'll come back and do so properly later) but it's a great piece and glad that your local paper and BBC station have used it ... may more people do so with as much spirit

    I can sympathise so much with your mum when you say how they looked forward to a retirement together and to enjoy it -- for me this is just how my Dad is as I know he wants to spend more time in Australia with family there and cannot.
    very frustration for all including my Mum who was also really active and now unable to do very much at all.

    I'll have to come back and read this again.
    take care
    TED x
     
  3. Many thanks for sharing - and nice to see that your local press actually printed it - at least they addressed the issue of Alzheimer's Awareness!

    The reason for the exclamation mark there, was because I contacted various local newspapers re: the Awareness week, and asked if they'd be highlighting anything/what would they be doing for it?

    Surprise - no reply at all.

    What I like about the article that you posted is the facts, figures and contact no.s - I'm sure that would be great for people with issues/people who want to simply know more re: dementia issues.

    And info about what services are available too - a very good article in my opinion, and I'd be glad to see something similar in our local rags.

    Maybe one day.

    Thanks once again.

    :)

    N.
     
  4. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    333
    Hi Jo,
    Well I'm certainly glad you posted it!
    It's a great article.

    Elaine
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Jo
    a great article,glad you posted it.
    I can relate to many of the feelings mentioned by you.
    I think one of the sadest things is that people are robbed of sharing time together when they reach retirement age.
    Keep posting
    Norman
     
  6. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Awareness week - Lionel

    The following was printed in our local paper following my telephone request that they did something to highlight awareness week,..............,

    When Connie first met the man she would fall in love with - he had lost his keys.
    She never thought anything of it. But she did not realise it may have been an early warning sign that Lionel was developing Alzheimer's disease.

    Within a few years, the intelligent businessman would forget how to get to the train station to go to work. It meant he had to give up his much loved job in London, where he was a virtual walking archive as a picture researcher for publishers D.C.Thomson.

    Connie said "When he was diagnosed he could not go on working. The little things weren't right and I think people at work had been covering up for him.

    Lionel was just 60 when he was diagnosed. It had followed two years of investigations, and symptons which may have been creeping in for more than five years.

    Now Lionel needs 24 hour care. His spacial awareness has declined and he struggles to find the right words when he has something to say. He also has hallucinations. A simple task like having a shower is a struggle.

    But beneath the surface his dazzling mind is still ticking away - and needs nourishment. " The other day he suddenly started quoting Macbeth at me. It wasn't the kind of quote a pleb like me would recognise. I found out later what he meant. It was an obscure one". But you can't ask him what he had for lunch, or what day of the week it is.

    For Connie, who had met Lionel after being widowed, she had found happiness again. But life was changing and as it did she realised that there was not eneough support for Lionel or herself.

    Now she is part of a crusade to get dementia the recognition it deserves, and especially for younger sufferers. Connie said " we must have 400 people in Essex under the age of 64 with the early stages of dementia, but in Tendring there's no day care centre for them at all.

    People tend to think it's only older people who get this, not people in their 50's.
    This week she was amonst a group from the Alzheimer's Association taking theeir strong feelings to lobby at Westminster. Co-inciding with Alzheimer's Awareness Week. her first hand experiences will be fed into a parliamentary reception with MP's

    Their aim is to inform that dementia does not affect only people in their 70's, 80's and 90's.
    There are 18,000 people in the U.K. under the age of 65 with dementia. And Connie believes more should be done to help people like Lionel - and Tendring needs to be one of the first to give support.
    "Lionel needs this support and so do I. People with dementia in their 60's and 50's are too young to go to day centres with the elderly. They have nothing in common"

    Although he now has invaluable help from Shrubland Court Day Centre in Colchester (25 miles away)


    - she feels there is so much more to be done.
    "He is so lovely and is amazing the way he keeps his life together, but this county needs to do so much more. For my sake and Lionel's"

    Her aim is to make sure he and many others are not forgotten, even if he does have difficulty remembering the most basic things.


    (Sorry about the length of articles, but I was pleased to get so much space)
    I sent a copy of same to our M.P.
    Regards, Connie
     
  7. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hi Jo and Connie

    Thank you so much for your efforts on our behalf. A good bit of journalism Jo. I don't think our Nottingham Evening Post or other local newspapers have covered anything on "Awareness Week". Connie thank you for lobbying Parliament.

    A bit thanks and love from all us carers.

    Katie
     
  8. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Well done to both of you for managing to raise awareness. I work in a hospital and it is amazing how many of my colleagues don't know that AD can affect younger people too.
    As was quite rightly pointed out, services differ according to where you live, which is such a shame. I know that my Dad and his wife are finding very little help from anywhere, and that is the most frustrating thing for them. Dad still has his role, but the services are not helping him to find it.
    Keep up the good work, regards Kate x.
     
  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Thank you Jo and Connie very worthwhile contributions from you both. Thank you so much, both for raising awareness and for sharing your thoughts with us all.

    Linda
     
  10. I agree.

    What a pity that the 'Awareness Week' was ignored by some areas though (Yes Wigan... I am referring to YOU).

    It's the media I'm having a go at here folks, I have to say that the local branch of the Alzheimer's Society/Services had stuff going on, including open days and an excellent talk on counselling for people who had been diagnosed with dementia which I was able to attend.

    But again, to rant at the newspapers... :mad: !!!

    N.
     

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