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
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
