Dementia: Your emails

The broadcaster, John Suchet, has been speaking publicly for the first time about his wife's dementia.

In an interview with BBC News, he has called for an end to what he said was a "postcode lottery" in support for carers.

Here is a selection of your emails in response to his story:

My father gallantly looked after my mum all through her progression of this terrible disease. As John said we have no specialist nurses in Scotland. The only respite they gave him was one weekend in an old people's home which was totally incapable of dealing with a lady in the later stages of Alzheimer's. Good luck John with the fundraising and with caring for your wife.
David, Edinburgh, Scotland

I feel so sorry for John. My mother was diagnosed with Alzheimer's at the age of 60, my father at the age of 70 and my late partner had multi-infarct dementia. The slow, word-by-word, skill-by-skill, memory-by-memory, inexorable loss of someone you love is both heartbreaking and exhausting. The last words my mother ever said were "mummy" and "daddy" in a voice like a very young child, and then she was completely silent, not even blinking at a hand waved in front of her eyes. Alzheimer's is a horrible, cruel way to die, distressing for both the sufferer and their family.
Sara, Southend on Sea

A very moving account. Possibly the worst effect of dementia is that it does not just kill the memory of the patient but the memory that everybody else retains of them. I was 14 when my mother started developing symptoms in her late 40s (she finally died of it at 62), yet I have barely any memories left of her as she was before the disease destroyed her personality. In (the author) Jean Rhys' words: "There are always two deaths, the real one and the one people know about."
Beans, Southampton, Hampshire

I have recently become a carer for my mother having given up my job to look after her. Like John I am fortunate to live in an area where I have access to an Admiral Nurse. It was reassuring to read the above interview as I have had recent feeling of believing that I am not good at caring and at times feeling totally helpless in the situation I find myself in.
Amanda Keane, United Kingdom

I just want to say how good it was hearing John Suchet talking about his wife with dementia. My husband suffers from it and nobody understands quite what a carer goes through but John hit the nail on the head when he said about the dishwasher and little things in life that turn into mountains when I know that he has no idea what he has done wrong, or why I sit and howl. Just watching John I had tears running down my face at breakfast but my husband does not even notice. If you could let John know how I appreciated him saying how he felt. My husband was a very clever, well-educated man who is just a shell, and I am 65 with my life to live and it is just so hard. Many thanks.
Mary Osborne, Cambridge

I found John Suchet profoundly moving when he spoke about caring for his wife who has dementia. My father had dementia and although he was in his 90s it still had a great effect on his family particularly my mother. I often wonder how my husband would cope should I be struck down with this terrible disease - the answer to that would be with great difficulty. I should very much like to send some money to what sounds like a life saving society - the Admiral Society. Please could you tell me how I can do this?
Joanna Dunlop, Midhurst West Sussex

John Suchet is doing a great job. He is helping his wife to stay at home where she feels secure and happy. If he can manage it, play and sing the music which she enjoys and dance with her. Songs connect us all together. Bonnie is still Bonnie and you can have those precious times with her now. There ought to be more funding for Admiral Nurses. Carers need that kind of support.
Molly Dee, North Slough, UK

Having seen the effects of having a dementia sufferer in the family on those around them, I can sympathise with the experience John is going through. My gran developed Alzheimer's and the stress and emotional lows that it generated throughout the family were awful to watch. Hopefully, with the help of the Admiral Nurses, John and other carers will be able to minimise the stresses and worries of being a carer.
Darren Vidler, Dumfries

John, I watched your piece on BBC Breakfast this morning. Thank you for doing what you can to raise awareness of this dreadful condition. So much is being said by the government about making preparation for looking after dementia sufferers in the future, this is essential of course and still too little too late, but on the other hand where are the funds for research into the causes and treatments? It has been neglected I feel because it is a problem of older age. Your beautiful wife Bonnie is going on the journey my mother has taken from the age of 72, and she is now 83. The experiences and feelings you described match mine and I can understand them totally. My best wishes,
Susan Beesley, Nottingham

I was incredibly touched by the article this morning on TV. It made me cry inside. I work for Rugby Mind and we run a day centre for people with Alzheimer's and dementia. We would like to extend this service to younger people. At present we have no more funds available. And can I say that John has such love and compassion, which is clear to see. Thank you.
Susie Chapman, Rugby, Warwickshire

Please send John my thanks for his candid and honest discussion of his wife's suffering with dementia. He is absolutely right - the carers are in desperate need of recognition and support. My father died in 2005 of fronto-temporal dementia - a very swift, violent and horrific version of the illness. My mother managed to access support via Social Services and via a local support charity for carers of dementia patients. Other than a wonderful community psychiatric nurse, all other support had to be paid for as needed, with no guarantee that the same person would be involved each time - an immediate problem for Dad. Any change from the normal caused much distress. There needs to be a country-wide arrangement, with regular respite facilities for the carers - expensive maybe, but how much are these informal family and friend carers saving the National Health Service?
Claire, Bournemouth, Dorset

John's interview moved me to tears. Having a grandmother of 89 who has dementia I could identify with him but cannot begin to understand the pressures of losing a husband/wife before my eyes. I would like to thank John for explaining that it's important not to contradict or question a dementia sufferer; my Grandma insists the impossible eg she is pregnant or has been left out in the snow in her nightie until midnight. Next time I will know how to handle this better. John's interview has also prompted me to contact For Dementia because it would be good to have someone who understands, to talk to now and again. I don't know if you can pass my email on, but if you're reading this, John, thank you so much.
Kim Olyett, Watford, Herts

I have a close friend who has dementia. Prior to her illness, we used to communicate frequently by letter and phone. Now that has passed and I feel so hopeless that I can do nothing to alleviate her condition. It is a blight on our country that there is a shortage of skilled people to help those with dementia. John Suchet said there should be 70,000 more skilled people throughout the UK to provide help and I agree.
Paul Barrett, Mosborough, Sheffield

I broke down in tears this morning listening to John Suchet. Even though my husband did not have the A word, he suffered from multi-infarct dementia from a massive stroke. From a loving caring husband he became this alien. Other than our two children the carers I had were totally inadequate and finally my husband went into a home. This broke my heart. Even then it was not adequate enough. The carers were not trained to deal with people like my husband. I have tears running down as I write this and can only feel for John Suchet. My husband died last July. Until one becomes a carer oneself, no one can begin to even understand. I found caring here in Oxford completely inadequate. Other than one carer who was brilliant. Unfortunately she left the agency and that was that. Social Services were not helpful. I had no idea what to do. Form filling galore!
Julitha Moffatt, Oxford

I look after my mother who has dementia and lives in Kent. I live in London so I have rely a lot on a paid carer and do a lot of phone liaising and 140 mile round trips. My warning to anyone who finds themselves in this position - you are on your own. I want to shout this out - I feel so angry and frustrated. The NHS doesn't help, social services departments - certainly those in Kent - don't help. You will told 'she has dementia' and left to fend for yourself. Government policy is to keep the elderly in their own homes for as long as possible - except there are no care structures in place to do that. GPs, hospitals, pharmacies - none of them are 'dementia aware'. It's an absolute tragedy and I'm glad a few famous people are finally able to speak out about it, because they will be listened to.
Sheila Webb, London

I can sympathise and understand what John Suchet is going through. My mother has dementia which went undiagnosed for quite some time as my father would cover for her. It was not until he had a stroke and had to be hospitalised that it became apparent something was wrong with my mother. My mother fell and broke her hip and because of the dementia remembers nothing about it and why she cannot be looked after at home. They are both in a nursing home now and I can't praise the staff highly enough for the way they care for my parents who are together even when my parents argue and Father feels guilty and sad about it and Mother forgets about it within seconds and watches the television or has a conversation with someone else.
Sandra Williamson, Alloa, Scotland

I listened to John's interview on the radio this morning with tears running down my face. The 'A' word finally killed my mum in January 2008 - she'd suffered from it for over 10 years and went from being a vibrant, happy, deeply intelligent woman to an incontinent shell with no flicker of cognition in her eyes. It was like watching her gradually die for 10 years. My father cared for her almost single-handedly, despite being none too healthy himself. An Admiral nurse would have been an absolute godsend, but he wasn't even offered respite care by the local health authority. I don't know how he managed to do it. I guess that's what comes from 50 years of marriage and an almost infinite inner strength. Dad, you're amazing. Alzheimer's care and treatment in this supposedly civilised country is scandalous.
Rich, Bristol, UK

Please would tell John Suchet how right he was to speak out about his wife's condition, and how brave he was to do so. I watched the interview with him this morning and had only sympathy and respect for him. I speak as someone who's mother-in-law suffered from early onset dementia in the 70s and 80s, and at that time it always made me cross how little awareness of the condition there was and how little it was talked about in the press. Like John, my father in law, who I was very close to, was tremendous in the way he looked after his wife. All one can do is to live from day to day, and do your best. After my mother-in-law died, my father-in-law initially felt very depressed as all his energies had been taken up in caring for her. Ken did go on to create a new life in due course, and find happiness again, so please John do not despair, it is enough that you do your best. Thank you for being willing to talk about your wife.
Margaret Scribbins, St Albans, Herts

My grandfather had dementia which turned out to be Alzheimer's, too, but he is 88 now and my grandmother is mentally capable of helping him but not physically, having gone through a series of strokes and traumatic operations over the years. He does exactly what John says Bonnie does, wiping dirty plates or just putting things on the side back into the cupboard, and you can't just tell him to stop, so my grandmother finds it impossible to cope. When we visit, everything is always filthy, but of course my Grandmother just has to live with it - he is her hands and body, she the brain, but now because of the dementia their connection has been severed and often she just has to eat off of dirty plates. The food she is served is often mouldy or out of date, too, and she certainly does a lot of shouting at him - what else can she do? They have no permanent carer.
Gwen Kent, UK

As a health care professional, I have helped nurse patients with dementia. I have nothing but admiration for partners and family who are carers for their loved ones, despite the emotional and physical turmoil it brings. Anger, fear and sadness are normal and acceptable feelings. John is another example that we do still live in a world where kindness and love exist.
Citron Cairney , Aylesford, Kent

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