Showing posts from November, 2012

Guidelines for dealing with people who have dementia

Look at the person and not the illness, and treat the person as you would have done before the dementia.
Remember that many get frustrated because, unlike many people they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behaviour or us being rude. I have heard this on many occasions, which makes me believe that the accusers really don’t have a clue about this illness.
Please don’t assume that you know all of the answers about dementia and what it is like to live with it, but ask us. We are living with it and therefore we can tell you about our problems.
Remember that people with strong accents, asking questions can be very difficult to understand, when you have this illness. As someone who grew up in the North East, I now struggle with the accents these days and if it is difficult for me, what is it like for others.
Many have hearing problems which may be acute as in Lewy Body …

Active minds and dementia

A creative approach to helping people with dementia Active Minds designs products to improve the quality of life of those with the condition – from jigsaw puzzles to painting books
A person paints one of the pictures in the painting book produced by Active Minds. Photograph: Active Minds There are 800,000 people in the UK living with dementia. It requires complex treatment and there is an ongoing debate as to how best to ensure a good standard of living for people with the condition.
Recent research from the Department of Health and Alzheimer's UK has argued for an activities based approach when caring for people with dementia. Activities such as painting have been proven to help people reconnect with their surroundings and lessen their dependency on anti-psychotic drugs.
This treatment requires time and attention in the short term, but produces tangible results. However, already stretched families and care professionals lack adequate resources to deliver this kind of care, maki…

Back again

We have returned from our daughters after a long week end of looking after the grandchildren while our daughter and husband were in America.

It was a hard weekend, as I forgot just how much hard work it was looking after children, but it was also full of surprises.
Yesterday we returned home, but that was stressful as the trains were delayed due to flooding, but it was only when we got outside Durham that I fully realized just how bad things were.

I could see what I thought was foam, then when I got closer to the train windows I saw that the train was actually running through water and sending waves across this vast expanse of water.
It was only when we saw the local news on Television that we saw just how bad this was, as it looked as if a new sea had been formed while we were away.

Luckily for us we were not flooded at home this time round, but the builders said that they were worried seeing the large pumps working out of our front window.

This afternoon with the help of the builde…

Bad day yesterday

Yesterday was not a good day as I was struggling a bit with the grandchildren who seemed noisier than normal, and the weather was wet and horrible.

We went into Farnborough in the morning and I lost the plot in ASDA as there were piles of goods waiting to be put on the shelves, and this lot was blocking off the isles making it very difficult to negotiate your way around, without all of the high speed shoppers who seemed hell bent on doing their shopping in 3 minutes, and no one was going to stop them or get in their way.

I usually keep well clear of these large supermarkets at  weekends as they are manic, but yesterday it was a case of doing something to keep the children occupied, otherwise they would have become bored inside an hour. We then had lunch before heading back home again.

I have to admit these children and a delight to take out for meals as they are usually very well behaved.

After this things went downhill and I had to go to bed for an hour to charge my batteries, as I …

Good event

I went to a conference on Wednesday, where they were awarding Dementia Champions, who have set new standards in care, in care homes etc. I found this humbling as these people have gone out of their way to train in dementia care so that they can give first class care to those in need. This is something that is voluntary, and not demanded by care home owners, and therefore these people should be praised for what they are doing.

Strange day

We are at our daughters for a long week end as she has gone to New York for a break.

Its been a long day with the grandchildren but all in all its been a good day. It started out on the  wrong foot this morning as I was not feeling too good, but after  a brief sleep just before lunch time, things started to pick up again.

I forgot just how tiring children are and how demanding, so its going to be a long weekend.

Yesterday was a bad day as we travelled down from Newcastle on an old train and it felt as if it was running on cobble stones, rather than train lines, as it was being bumped all the way down to London. I went to sleep as I was feeling very sick at one stage and just wanted to get off the train.

New Blog seems to be working at last

After two hard weeks the new blog seems to be taking off, and doing well.

I was distraught when the old blog died, as it was doing so well, but like everyone else who has this illness, I have learnt the hard way, as I should have kept well clear of the Internet that day as it was not a good day to do anything which involved thinking.

I had tried to get Google to help but nothing happened, so it was a case of setting up a new blog, in the hope that it worked.

However by this morning the number of readers had risen to nearly 500 in 10 counties, so I can not complain.

I still have a few old blog pages to upload, and then I can see what happens

I would love people to join me and send comments in especially from other countries, as I am always interested to hear about dementia in far off countries.

Dementia and Photography

I have two hobbies that I really enjoy, one is looking after my tropical fish aquarium something which has given me so much satisfaction, on good and bad days as it is so relaxing, to look at without doing much.

The second is photography, a hobby that I always enjoyed, even before the diagnosis, but now there are problems remembering the settings etc.

I have tried a few things to try to remember the settings, but I always get somewhere and either can not remember them, or can not find the paper with them on. This gets distressing, but I have to fight this as I get so much out of the hobby that I can not give up,

I have a few friends who also have dementia, who are very keen photographers and they seem to have similar problems, so I am not alone.

One of these people once said that the pictures get interesting when the wrong settings are used, but at least with modern camera's we can delete all the duff pictures and keep the best.

 I love taking pictures of wildlife, but as will al…

Long hard slog

Some time ago we were flooded and our lives were turned upside down, so with the help of notes, I have rewritten the story.

Its been a long hard learning curve since the end of June this year, and it has taken its toll on many people in our area.
On June 28th we were packing to go on a Baltic cruise the following day to celebrate my 65th  birthday, and never really thought about what was coming. Just after tea  the rain came and it was torrential, but it took some time before we all realised that things were going to turn ugly.

By around 8pm the water was pouring through the town centre, and eventually it got so bad that a wall of water was heading our way just like a small tsunami.
Within 20 minutes we had nearly 3ft of water inside the house above the floor and another one and a half feet below the floor, and it came in so fast that we lost most of our possessions on the ground floor.
The next morning a new life started when I went down into the sea of mud and saw what was left of …

Better day

After two horrible weeks we had a much better day, and my wife and I feel much happier than we have over that period. It has been very hard to cope with life since we were badly flooded in June, and living in a noisy and damp flat has been hard to accept, especially when I had three chest infection in the same period.

After losing my old blog two weeks ago I felt as if my world was falling apart, and that seemed like the final straw after everything that has gone wrong since June 28th.

Our Ruby Anniversary last weekend was destroyed by the builders attitude, but hopefully things are going to get better now.

But this afternoon we got some support when it was decided that the work should be completed before Christmas, although we can not expect to move back home until around the 3rd January.

I gather that the heating is being connected up this week, and the kitchen will then be fitted, which is a big step forward. After this all of the new doors will be fitted ready for the painters t…
Day to Day living with DLB
As someone with Lewy body dementia, I was not prepared for the changes in life that were to come, but as with all illnesses, we have to change our lives to suite, whether we like it or not. There is no doubt that caring for a person with Dementia can be frustrating and difficult, but it’s even more difficult for those with the illness to cope with.
Each person has vastly different symptoms and problems, but we have to do the best we can and that usually means that we have to change our ways of dealing with everyday things, such as personal care, hobbies, routines and solving problems.


When I was diagnosed I was told a few things to make life easier, like setting myself a routine to get through the day; this would take in personal care and medication.

If you have a set routine it causes less stress and worry, to those with dementia and also helps  their carers, as they don’t need to prompt us as much.
I started to set myself a routine which works well un…

Old Timers and spelling

A favorite blog page which was saved from my old blog, and has given so much pleasure.
Some time ago my daughter Claire, tried to explain to our wonderful Grandchildren that I had Lewy Body Dementia, and thought the easiest way was to say that I had old timers illness, which sounded lovely. I found it hard when the children would treat me with kid gloves at times,but it was Claire's way of protecting me at times.
Last Monday we travelled down to London where we stayed over in a hotel for a night, before going to a meeting about Dementia. After this we headed off to our daughters in Farnborough in Hampshire where we stayed till Saturday.
During the week we walked to school with one Grandchild or the other as both girls are in different schools, but it was so nice when they hang on to your hand and talk to you and confess that at times it was very hard to take as I was starting to get emotional.
On the Thursday Claire had to take one daughter straight into town from school, to get her f…

Alzheimers and Children

Explaining the problems associated with Alzheimer's to Children and Teenagers can be difficult at times, but the Alzheimer's association has done a wonderful job in writing and producing these two documents, which can help, others explain the problems we struggle with on a daily basis.
Just for Children: Helping You Understand Alzheimer’s Disease (2 pages)
This fact sheet will help you understand what is happening to a person with Alzheimer’s disease. It also explores how challenging it is to take care of someone who has Alzheimer’s. It includes puzzles and activities.
Just for Teens: Helping You Understand Alzheimer’s Disease
This fact sheet will help you understand what is happening to a person with Alzheimer’s disease. It also explores how challenging it is to take care of someone who has Alzheimer’s.
My Grandchildren thing I have Old Timers, and while they know about the title, they don't understand the rest of it, and these documents would help my daughter and oth…

What would you like to do

What would you like to do, while you still have the chance
A few weeks ago someone who was a doctor, asked if there was anything I would like to do, if I had the chance to do it, while I am able and get the chance.
She was a bit shocked at my answer, but as I said to her, what have I got to loose, I have had a good life, and although I did not ask for this illness, I would really like to do something positive for a charity, as some of these people have helped me so much since being diagnosed with Lewy Body Dementia.
Apart from seeing parts of the world which look fascinating, like Singapore where we went with the Alzheimer's Society to the Alzheimer's Disease International Conference, but then I am unsure as to where I would go because long journey's cause a lot of stress.
There are parts of the world which fascinate me and would love to go but would never be able to afford the costs.
However I would love to do something stupid like a parachute jump, or wing walk for charity…

Very Vivid dreams and nightmares

Many of us struggle with sleepless nights or nightmares, and today I was sent a link to this webpage by a member of the Royal College of Nurses. I confess that I have not managed to read it all, but what I did read was very interesting. I have often had horrendous nightmares which are very vivid many of which can be described in great detail long after waking up. I have also wanted to get out of bed during the night to visit the bathroom, and have never been very sure that I actually got out of bed, until I hit the wall in the bathroom to make sure I am there.

Sometimes if I wake from the vivid nightmares, I get out of bed and sit in a chair, but these sometimes start all over again when I go back to bed.
One night it all came to a head when I tried to escape from the nightmare by climbing out of the bedroom window, but my wife woke up just in time, as we were in a hotel and on the third floor. I suppose the lucky part of that night was the f…

Caring for someone with Dementia

These days we hear all about dementia champions etc., but never much about the caring champions.
Caring for anyone with an illness or serious injury can be difficult and at times very hard to cope with.
But when someone with dementia gets a diagnosis, it is commonly sad the they family start to grieve as the person they are looking after will change in time, and will not be the same person they have grown up with and loved.
I confess that it’s bad enough having the illness and trying to cope with whatever life throws at you. But our caregivers mean so much to us, and have so much to put up with over the years.
Our caregivers are not just our partners in this illness, they are in many cases someone we married many years ago, and we agreed that we would stay with them in sickness and in health, until death us do part, as said in the marriage vows.
Yet thinking about it now, I know that I may look like the same person Janice married years ago in 1972, but when I stand up to do something or …