Guest blog: Living with dementia and still enjoying life

[JessMumsnet]

This week is Dementia Awareness Week. The Alzheimer Society's annual campaign this year aims to highlight the importance of talking about dementia, to share knowledge and experience with each other, and hopefully remove some of the worry which surrounds this disease.

MN Blogger Adventures with Dementia, shares his and his wife's story and offers advice to those who may be facing a similar situation.

"My wife, the love of my life, was first referred to the local memory clinic at the age of 50, and five years after I met her, in 2000. She was only finally diagnosed after being exhaustively investigated for twelve years. Throughout that time she had increasing difficulties. She also had access, at different points, to two of the drugs which people with dementia and their families understandably have such high hopes for. They didn't help and had unpleasant side-effects.

During those twelve years we bought a house together, got married, our children got married, my wife had her first grandchild, and we bought a camper van that we still use. We enjoyed our life together to the fullest extent possible.

There is a great deal of emphasis at the moment on 'early diagnosis'. It's suggested that this would enable people to make the most of the time they have left. I disagree. We had all that precious extra time - and some hope. Our Guru, the specialist who, with his team, took so long to reach a conclusion, said: 'Live a good life'. That's all you can try to do, with or without a diagnosis. But I reckon it's been a lot easier without.

And I'm not saying it's been easy!

Finally, because we had such a good 'pre-diagnosis' we've managed to carry on enjoying life when we can, after a fashion. She had a terrible period just after the diagnosis (there's a surprise!) One of the lowest points was when I was helping her with toileting and she grabbed my arm and bit me. But she has improved since then, though many people believe it?s inevitably 'downhill all the way'.

One of the most significant issues now is that she has auditory hallucinations, spending much of the day talking to imaginary people and largely ignoring me. I have found this hard to adjust to, as anyone would. Yet the conversations have generally become calmer and I am able to communicate with her when I need to.

We have just returned from a day looking after her two grandchildren, aged one and three. This is what you might call a challenge! But I think we both felt it was a positive experience.

I know that compared to many people we are lucky. But there are many other lucky people. Like the elderly couple we met recently who, despite the wife being diagnosed 10 years ago and the husband having prostate cancer, visit San Diego several times a year to see family, including twin granddaughters, and are planning to celebrate her eightieth birthday by flying to Hawaii. Or the 102 year old who wasn?t diagnosed until after she passed 100 and who still, at her insistence, lives alone.

Dementia can be horrific, both for sufferers and their carers. It is a terminal condition (like life itself) and there is, shamefully, no hint of a cure. So fatalism, not surprisingly, is common in dementia world. But fatalism gets you nowhere.

I started my blog 'Adventures with Dementia' about eighteen months ago with the intention of trying to make sense of the disease. Since then I have done a lot of reading and listening.

People, professionals included, trot out vague generalisations which patently do not apply to everyone with dementia. They continue to explain 'what is going on in the brain', ignoring the fact that long-standing beliefs are now under challenge from reputable researchers. In truth, whatever people may tell you, the general state of knowledge about the brain, never mind about dementia, seems frankly primitive.

But what we do know for sure is that many diseases can cause dementia - some people say there are as many as a 100 and you might as well say there are as many as there are people with dementia, because a central truth about the condition is that everyone is different.

Most importantly people with dementia are just that - people. People who happen to have dementia. A lot of twaddle is spouted about how 'they' think and feel. A little thinking reveals that mostly they share an awful lot with people who don't have dementia. Concentrate on the person you know, probably better than anyone else does, and you have the best chance of helping them to be as calm and happy as they can be.

The Alzheimer's Society have an online forum, Talking Point, which is a great source of information, as are the factsheets that the society produces.

Admiral Nurses are to dementia roughly what Macmillan Nurses are to cancer.

Care Home fees are a great source of anxiety to people with dementia and their carers. You might wish to sign this petition.

Brilliant to see MN highlighting this.

My mum has dementia, which was apparent by the time she was 65. Its not the type people think about when you say dementia - people think about losing your current memories, but still being able to talk about the long past. Unfortunatly, in mums form, it takes your speech, understanding of speech, how to read and write, ability to plan things and your memory too. Progressively shes become unable to string more than a few words together and has lost the ability to name people, things and places. She loves to read, but can't understand anything she reads.
Last week she lost my sons name, and that he was her grandson.

I struggle to find anything positive in dementia though. Mums cut off from everyone as she struggles to talk, has no sense of appropriate behaviour and so on.

You're very fortunate that your wife's form of dementia enables you to have a relatively normal life. And I am pleased that MN is drawing attention to this.

However having seen two close relatives succumb to Alzheimer's Disease, I also find it hard to see anything positive in dementia. What form and severity of dementia you get is a total crapshoot and no amount of posi-fricking-tivity can change that. Yes, you live as well as you can after diagnosis, but I think most people do figure that out.

Sorry to be a grump but I don't think 'concentrating on the person you know' would exactly have helped when my grandfather started being violent to my 80+ year old grandmother. Or when he lost all speech. Or couldn't recognise any of us anymore. Or when he became doubly incontinent.

Telling the families of people with dementia to be positive is like telling a cancer patient to 'be strong and fight it'.

What exactly is the alternative to trying to find positives?

I like this blog
It stresses that people with dementia are individuals, it makes the point that there is no one cause of dementia and that its effects and progression varies, and it encourages people to take the positives wherever they can.
The lack of support for its sufferers and their families and the lack of any cure so far are big issues.
I work in clinical research and there has been big research progress in recognising different types of this disease - personalising medicines - and in finding ways to halt the progression.

My mum has just died of early-onset Alzheimer's. I am lost without her. Hers started in her 50's. It is an astoundingly difficult condition, and everyone's experience will be different according to so many variables. Focusing on her individuality was important to me from the dignity and respect perspective as well as remembering who she had been. At the same time though it was incredibly difficult as it further highlighted what we had all lost, and indeed what she had lost.
I still can't believe that she has gone and that I may get to 65 myself and not have had a mother for 30 years.
I send you all courage and lots of empathy.

Your relatives are so lucky. They have family who cares and help maintain their individuality but what of those who dont? And how important is it to maintain the things they used to enjoy if they don't remember enjoying them?
I think of my life now, and I would hate for someone to give me luke warm tea to drink and to feed me pureed foods I never liked but would it matter?
Anyway, back to the blog. It's a good insight and it highlights the lack of any affective treatment of such a life changing illness.
I was surprised when he contradicted the need for early diagnosis, this thought had never really occurred. I always assumed early diagnosis would lead to measures being put in place to help the person stay well for as long as possible but I now think its quite realistic to say getting a diagnosis of dementia could affect the person quite detrimentally because it really is most peoples worst nightmares, and finding out you have it must be terrible.

My Mum, 79 years old, has Alzheimers - until recently it was 'curbed' and kept under control with medication. 12 weeks ago my Dad,80 years old, was diagnosed with agressive, non treatable oral cancer. In the last few weeks I have watched my Dad dwindle to about 6 stones in weight (he used to be double that) and quietly suffer horrendous pain.

Yesterday I visited them - I have one brother and we have 3 (living) sons between us (I lost two of my sons but that is another horrible story) and they have 3 great grandchildren. We all visit so they have someone there every day.

We talk openly about Mums problems - she is hysterical to be honest.....we laugh out loud and poke fun at each other.

Yesterday at about 10.30am I called to see them. They sat in their chairs and gabbed on and on Dad said 'Do you want a whisky and lemonade???' I felt it rude to not join in!!! Just before I came home a few hours later I heard them in the hallway of their house. Mum said 'I never noticed what beautiful eyes you have got, give us a kiss!!' They stood their with their arms around each other and kissed for ages.

Im not trying to say it is easy, and I know it is going to get much, much worse but my advice would be to make the most of every hour of every day x

My 92 year old gran has Alzheimer's. it was fine for a bit, but now when we visit she thinks my 13yo dd is me, or more recently, thinks she's my aunt (who is almost 60).

It's a horrible disease. I console myself with the fact she's in no pain, quite happily bossing her carers about. She's my last grandparent, though (dh also has only one) and being with her is important - dh's other gran died 2 weeks before dd2 was born and has her name - Rachel - and my Gran's name too - Jessie.