Laurie Graham Article in The DM

Oh so hard going now to see my mam she doesn't know me at all and is in late stages incontinent and frail. We broke our promise for her own safety but still feel guilty three years in heartbreaking x

Hi lovebeigecardingans1955 - - no I don't think you're being awful to air those thoughts - two things you say are very pertinent - the first is that often the person with dementia has nothing else physically wrong with them and provided they continue to eat and drink, can go on for years. The second is that a middle-aged or even older person caring for a parent with dementia is likely to suffer in their own health as a result. I am 67 and nurse my mum who is almost 91, in the home that we share. She has vascular dementia and has lost about 4 stone in weight over the last three years through not eating properly and being disabled, not able to preserve muscle. As an only child I wouldn't consider putting her into a care home and I am fortunate in that I do have help from carers, but my own health has suffered tremendously - insufficient sleep, weight gain, stress, pain and anguish, back pain through lifting etc., etc., People who have no experience of caring for someone with dementia, especially when it's advanced, have no idea of the challenges of every single hour and it would take a saint not to feel the way you do. If you don't take better care of yourself then you will come to resent your MIL even more for her intrusion into your life - you may never live to be as old as her, so you have to create a balance, and if your visits to her are so stressful maybe you should consider making them less frequent. Good luck.

We are a witness to a friend's slow decline with Alzheimer's. He is only in his 60's. It's so, so hard for his wife and awful to see them struggling.

Beige cardigans, I can sympathise utterly. The disease can put the most appalling strain and worry on relatives - we have been through it all twice. I often wished I could give my mother something so that she could go,peacefully to sleep and never wake up - she was so often fretful or agitated or unhappy even before she went into the care home - it would have been so much kinder to be able to spare her those last years of the indignity her former self would have hated so much, and all the rest that goes with advancing dementia. And I know it's what she'd have wanted for herself.

As an aside, having seen so much dementia over the years, I do often wonder why relatives are frequently so desperate for someone quite elderly, with at least moderate dementia, to be coaxed and badgered and pestered to eat and drink, when they no longer want to. I have witnessed this more than once in my mother's care home - someone with bad dementia being endlessly coaxed and badgered - albeit with the best of intentions - when the poor lady was crying and whimpering and repeatedly turning her head away.

I just don't understand the mindset that wants to keep people with dementia alive at all costs, whether they're happy and contented or not. If they ARE reasonably contented, fine, but so many are not.

Couldn't agree more with those who would like an end to the suffering of their loved ones. A friend of mine put it very well - Your Mum would be horrified if she could realise what she is doing and what is happening. Wonder what I will find next - yesterday her breakfast had been thrown all round the room ( by THEM , allegedly). However, I have seen examples of others in her home who usually seem withdrawn or restless and are transformed for a little while by an old song, a pet to stroke, or a bit of interest from a visitor. Just also like to praise local M & S for dementia awareness - they give a friend's Mum her coffee each day, irrespective of whether or not she had remembered her purse.

Help, please? Could I have some reminders of the suggested and proven methods of delaying or preventing this awful disease. I've read tips in the past but forgotten them.

I am grateful to GNHQ for highlighting this article. I think it's beautifully written.

My mum had dementia and died in February, aged 93 and we are currently watching two people of our age going through this as well as seeing how it affects carers on GN.

It is very difficult for the carers but the Alzheimer's Society runs a fantastic 4 week course for carers that isn't widely enough known about - so please tell anyone you know who might benefit.

I help on the local ones and the difference it makes to the people who attend is amazing. They gain a greater understanding of the progression of the different forms of the disease, tips on handling the person living with dementia, the help available, benefits etc etc.

Please spread the word.

What a truly lovely but heartbreaking story. At least it sounds as though Laurie is working her way through it and starting to create a life for herself. My OH has recently been diagnosed with mixed dementia and I am getting used to having the same conversation again and again as if its the first time he's asked something. I do worry about the future and what it holds for us but at least we have had 49 years of married life so I do count my blessings. Big hugs and love to all those who are dealing with this terrible disease.

My auntie had early onset dementia (aged 49) and my uncle was determined to look after her at home. After 3 heart attacks (stress related) he eventuality had to agree she should go into care. He struggled on for 10 years at home and nearly lost their home because of financial problems. The saddest part was that her speech was the first thing to go, so even when she still knew us she found it so difficult to communicate. Heart breaking disease

My heart goes out to all of you who have relatives with dementia. My wonderful step father had vascular dementia and eventually went into care. It was a heartbreaking decision but we had no choice as his and my mother's safety was at risk.

Tragically about 18 months before he died his son was killed on his way to visit him. Every time I went to visit he'd ask "when's our .... coming?" so I'd say "soon, he'll be coming soon" knowing that moments after asking he'd have forgotten.

It was his physical decline that I found the most distressing. Although he was eating well, he lost so much weight. I was told that weight loss is systematic but no one seems to know why.

for you all.

She captured my experience of having to put our DM into a nursing home. Even with Parkinson's she was fine until she broke her hip. They said she'd would only live for 12 weeks but it went on for another 5 years with a gradual decline into dementia. She never walked again and at the end could do nothing but lie in a bed unable to move or recognise me. Oh that the original medics had been right in their assessment. It was a lovely home and the staff were brilliant but to watch someone you love gradually disappear before your eyes is torture indeed. Dementia is truly the pits!

A friend of 40 years has had to go into a care home! We moved down from London together in the 70's and have lived in the same house ever since. Our children grew up ! In a matter of months he has changed so much that he now needs constant care. At times, he can be lucid but then goes completely senile so much that his grandchildren, over from Canada, cannot go and see him. They are under 5!

Some years ago, I was driving around town and came across an old acquaintance wandering about in the traffic on a local roundabout during the morning rush hour! I managed to strap him in the car and drove off to find where he should be. After some enquiries, I managed to speak to his daughter who was somewhat surprised as he was now in a home! I returned him to his home where he hadn't even been missed! So much for care!

It's got to be one of the worst illnesses to suffer from! Mostly for the family!

Thanks GoldenAge and Witzend for your kind words. I've decided to only visit MIL on alternate weeks now and to be kind to myself in this way - the alternative is just too awful to contemplate. She doesn't remember visits anyway.
When people need 24 hour care it's much too hard for the family and a care home is the only safe option - nobody should blame themselves for making that decision.

Dementia must be one of the cruelest diseases there is and reading that poignant article, has raised all sorts of emotions in me.

My mother, who suffered with Alzheimer's and Vascular Dementia, died two and a half years ago aged 94. She had lived in a warden controlled flat for many years but was finally taken into a care home under a Place of Safety Order as she was no longer able to look after herself safely. My brother and I had been looking at care homes for her but in the end the decision was suddenly taken out of our hands. As it turned out it was the best place for her and the staff there were brilliant with her and all the residents.

It sounds awful, but as the years went on and she became less and less like the mother I knew and loved, I used to dread visiting her. As soon as I left I knew she would forgot I'd been and so I can only hope that she didn't realise that my visits were getting fewer and further apart, but the guilt I felt didn't get any less.

My brother and I and our families all felt a sense of relief when Mum finally died peacefully - partly for ourselves, but mostly because she was at peace and no longer ravaged by this savage disease that had stripped her of all her dignity and quality of life.

My apologies for this long post.

My poor 95 year old Mum has dementia and is in a care home. Every time I visit her she says she hates it and wants to go home but the reality is she simply cannot manage alone any more and needs to be in care. She cries when I go in to see her and it is heartbreaking, feel so guilty we've had to put her into care but there was no choice. Dementia and frailty are indeed very cruel.

There MAY be a few things that we can do now to reduce our chance of developing Dementia or stop it happening

1. Changing your diet and lifestyle may help you avoid Alzheimer's
2. There are ways to test for your risk of Alzheimer's and to halt the progress

Professor David Smith (AD Smith) has been testing people for Dementia at Oxford University for over 30 years. Using MRI scans they have seen the early signs of brain shrinkage at least 20 years before the symptoms become visible to family and friends.

Look for the OPTIMA project

They found that a blood test for high Homocysteine is a very good indicator that matches their MRI scans and clinical observations and other medical tests.

A charity, Food For The Brain has developed an online test for people aged over 50 who suspect that they have mild Cognitive Impairment. So far, 220,000 people have taken the test and consistently 11% fail

If you fail the online test, you receive a letter for your doctor that suggests that they test for Homocysteine

Doctors know that they can reduce high Homocysteine with a cocktail of high strength vitamins and Omega-3 fish oil

So, you can reduce your risk by:

* eating foods suggested by Food For The Brain
* doing simple modest exercise like brisk walking
* exercising your brain by being sociable
* stimulating your brain by learning a new language or doing crosswords or sudoku

Learn more from:

Food For The Brain
Omega-3
Vitamin D Wiki
Blog

You can watch a YouTube video of Patrick Holford talking about this at
Patrick Holford
.

I'm sure I posted this before but, here goes again.

Even if your relative doesn't recall that you have visited please know that the feel good factor remains well after you have left so it is worth visiting if you can stand it.

When I visited my mum I found it difficult not to argue with her (we always had a difficult relationship) but it you can leave the person feeling happy, it is the best thing you can do.

A moving and powerful article. This comes just a fortnight after I have been diagnosed with serious memory problems in a pattern consistent with dementia after tests with a neuro-psychologist. This has not exactly been a surprise but has nevertheless been a jolt for us.
My grandmother had dementia and disappeared into a home for over a decade visited by her three children for whom it was a depressing duty.
Given that we have the knowledge, awareness and modern options it is empowering to be able to plan for what we want when the time comes. We could not afford a home and anyway I would not want to be left helpless in the hands of strangers draining resources I would much prefer to go to our young people!
We will use the increasingly popular (though surprisingly not reported despite the numbers of rather 'timely' deaths in recent years) method of breathing pure nitrogen. A pleasant way to go in just three minutes. We will make sure that it is evidenced as it is not right that it goes unremarked given the potential vulnerability of many.
Of course perhaps only a minority of us are psychologically capable of doing this - but for many more just having the option wold enable them to carry on. Sadly the window for action with dementia is limited and ppp is vital.
Finally it is moving to here of a loving family who are in it together and supporting one another. Some, like my siblings, nephews and nieces just drop me and mine - not even birthday wishes and no offers of financial help even though they are very rich and we had the bailiffs round and live precariously from month to month since I had to stop work in 2007 and we still had a mortgage to pay...

Thank you for the links - it's the cruellest disease.

My mother had alzheimers and my father vascular dementia. My mother's GP dismissed my fears about my mother, until she broke her hip. I was trying to cope with her ever bizarre behaviour, whilst bringing up three children and working full time. She used to phone the school, I was working in and my friends, asking where I was. Thank goodness for a very understanding HT. She never came home from hospital after treatment for her hip. The staff realised something was wrong and arranged an assessment by after by a psychiatrist.
They are such cruel diseases.

No need to apologise! It wasn't long and anyway we can all choose what we read. It brought tears to my eyes. So sorry.

My father in law had dementia. He was still a big strong man physically but became more and more confused, hardly ate or ate everything in the house in one day, forgot to wash & shave, wandered at night etc. He refused point blank to go to day care or have home carers etc. My mother in law was well over 90 and our boys were still at school. They call it dementia as we were all demented! On his final visit from social work, he told her he had no idea why she was coming to see him, as he still worked, made all the family meals and drove! Anyone looking in would have thought he was perfectly rational but sadly it was all untrue. In the end, he was offered a weekend assessment in the hospital. We told him he was going for heart tests! He refused to go saying, "I am not leaving this house! If you get me out of here, I'll never return!" Somehow my husband and his sisters got him there. We were told not to take any clothes etc to prevent suspicion. By the time we took them a few hours later, they had sectioned him. He was right, he never did come home again and died there several months later. Sadly, my mother in law was then diagnosed with it too. She eventually accepted home carers after a fight! In the end she had a stroke and went from the hospital to her "new wee house" i.e. a nursing home where she was clean, safe, well fed and loved. She died there with her family around her. A truly cruel illness!

I looked after my lovely mother-in-law who had Alzheimers Disease. After she died I went to work for the Alzheimers Disease Society. That was in 1986. Britain has been very slow to react I am afraid. Germany were dealing it with then much better than us. I helped set up support groups for the carers and was responsible for the whole of Wales. It its a very nasty illness. My heart goes out to all suffers and their families.

I'm currently caring for my DP who has young onset dementia. He's only 59 and symptomatic for over 5 years. It's a long thankless job caring for someone who has no similarity to the man you've known for over 20 years. I promised him he would go into a home over my dead body. Next week we are visiting the home with a view to day care. It's torn the heart from me. Dementia is the cruelest disease and I'll be lucky to get out of this journey with any of my own sanity left.

I should imagine that those of us who have lived with dementia, would NEVER make our loved ones promise not to put us in a home, should we ever succumb.

I have told my daughters very firmly that I don't ever want them looking after me if, God forbid, I get it, and they are never to feel at all bad or guilty about putting me in a home. They know all too well what we've been through with both FiL and my mother, so they do understand why I've said it.

One of the worst things, IMO, when you finally make the care home decision, is people who have never lived with it, and frankly haven't a bloody clue, saying oh so piously, 'Oh, I could NEVER put my mother in a home!'
And so doing their best to make you feel even worse than you do already.
I would never wish dementia on anybody, but more than once I have wished that such people would have their eyes opened by experience.