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 Dementia and other may be losing their hearing, so they may not be able to understand clearly what you are saying, so please accept this, as this causes us stress at times, and that could lead to us being accused of being rude or aggressive.

Try to speak in a calm clear voice and not get agitated, otherwise it makes those with the illness react in the same way.

Do not discuss our problems with someone else while we are there, as that is hurtful and disrespectful, we have ears and a tongue and can answer for ourselves given the chance and the time.

Many of us have developed routines that we go through each day, and we should be allowed to carry on with these, as it allows us to be in control for that little bit longer. It also decreases the decisions that we need to make on a regular basis.

Some people are struggling to come to terms with this illness, some even deny they have it after the diagnosis, and it is up to you all to give us the support and care we need.

Some people struggle with certain types of flooring as with marble or vinyl floors, and may see things which are not there, and this causes distress. Marble floors are one of the worst things on a bad day when you have dementia, as it looks as if the designs are moving, and this has given me many nightmares in the past.

Revolving doors and elevators are a disaster as guess the time to get into or onto them is out of this world. My wife always goes down the elevator in front of me, and we don’t use revolving doors unless there is no other way in or out of the building.

Large mirrors especially full size ones, can cause problems in rooms such as hotel bathrooms and bedrooms; it’s not the first time that I have walked into a mirror thinking it was a door, because I could see a door reflected in it.

Remember our carers and family are our support at all times, and if we go into hospital they should be there all or most of the time to help us answer questions, and support us if we need to fill in consent forms, otherwise we could be signing our lives away.

 

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, making it harder than it needs to be.
I have experienced the difficulties carers face first hand. Fifteen years ago, my grandfather was diagnosed with Alzheimer's. As he became less mobile, the activities available to him were more sedentary and he became a jigsaw enthusiast. As his ability to complete puzzles diminished, they got simpler until children's toys were being used. This situation is reflected in many care homes, with children's activities being used or carers having to devise their own. I saw a simple need that was not being met. As a designer I decided that I could use my skills alongside the experience of those in the care sector to develop activities capable of delivering age-appropriate dementia care.
Active Minds jigsaw puzzle and painting book. Photograph: Active Minds The obvious place to start was my grandfather's puzzles. I asked myself a range of questions: what was the optimum size of piece for elderly hands; what images would be resonant; what special features would it need so that it could be used unassisted? I consulted carers in a local home and the head of dementia care at St George's hospital. During one testing session in a care home, a resident, who hadn't spoken all day began talking about his time in the war as he completed a puzzle with a picture of a Spitfire. This first success laid the groundwork for Active Minds, my dedicated range of activities designed for people with dementia.
This approach – which I call "design by experience" – is central to what I do. My subsequent projects have included a seated spa ball developed alongside ReVitalyz, themselves specialists in exercise for people with dementia, and an aqua painting activity developed alongside Barchester care homes.
My current project, again developed alongside Barchester, is a painting book. The book contains 40 images that during testing have invoked memories and encouraged conversation.
Our recent social impact report showed that 100% of professional carers and 80% of family members felt the activities improved the quality of life of people with dementia and those who care for them. Active Minds has helped more than 5,200 people in the last 12 months. By combining specialist design skills with the experience of care professionals, a better quality of life could be delivered to people with dementia, and to their carers and families.

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 builders we got the aquarium back into the house, so its protected from the drop in temperature.
It was surprising just how long it took to do, once we had drained the water out, and now we will just have to sit back and see whether there is any long term damage to the fish.

It's taken four long years to set this aquarium up and have it stocked with some wonderful fish, and I would be horrified if anything went wrong now as I get so much pleasure  from sitting watching it each day
 I know that like other pets I can not take them for walks etc, but when you go near to them they always respond, and that means so much to me.

I also got my driving license back today, which was a bonus because I never expected to get it this year.

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 was really struggling to cope with three voices all talking together, and it was like a bad dream.

Today is a new start and we will wait to see what happens.
I confess that I am starting to look forward to heading back home on Wednesday.

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 all small things whether it is wildlife or children they never stay in the same place for very long, so patience has to be used, or you need somewhere comfortable to sit.

These days with the help of assistive technology things are slightly easier, because once I have got myself set up with the camera tripod and my remote camera switch, I can sit back and wait.

However as we all know this does not work with children, but as I only photograph my Grandchildren I get help from the family.
I would never think of taking pictures of anyone else's children these days as its classed as unethical.

But children can give you a picture which is set as they want it, rather than someone else.

Wildlife photography is very relaxing because it means that you have to sit still and be patient, and it can very thrilling when the shot comes out right.

I could not get very close with the shots above so I had to use a zoom lens, but I did enjoy the pictures when I loaded them onto my computer.

There are many photography books, but none for those with this illness, so its a case of trial and error.

Of cause we must always remember, that any pictures of people taken can never be shown of the Internet without permission, otherwise we can risk prosecution, whether we have this illness or not.

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 our life's possessions.
I then felt sick, at the thought of what was to come, but at this time I was not able to take on board the problems that were to come.

We removed as move of the sludge as we could and when the insurance man came four days later and told us that we could not stay i n the house, our hearts sank.
We were moved into a hotel for around 10 days, and then into a small flat, which was going to push me to the limits.

Although the flat was small and easy to get round, it was in a three storey block with fire doors.

Night after night day after day people would go in and out, letting go of the fire doors, which then slammed. My wife said that I physically left the bed one night with the shock of the slamming doors.

I have now got to November and we hope to be out of this flat within 6 weeks as it will not come quick enough for me. I have struggled through every emotion possible and have realised what depression is and how close I have been like many others from our estate to walking away and finishing it all together. I know in my own mind that I am not suicidal, but I have been to some dark places over the last few months, and this has not helped my dementia at all.

Many people we have spoken to have said that the flood destroyed their lives and many quiet loving people became angry and someone who snapped at their loved ones for no reason at all.

Last week was awful, and possibly the worst week of the whole lot, and should have been a good week as it was our Ruby anniversary, but we seem to have turned the corner and things are starting to look up again.

I went for a memory test on Friday and both the nurse and my wife were surprised that I did so well in the tests, after all we had been through.

I know that its not the same but I can just about understand what those in the far east went through when the tsunami struck, although it was far more dangerous and unforgiving, and now my heart goes out to all who suffered in these events. I could not understand what they went through before our flood, but its given me a good idea, of the pressures and stress that people were under afterwards.

I have never been depressed before and never want to go there again, as it was horrible. But the only things that kept me going where my family, grandchildren, and my tropical fish aquarium which was moved into the garage until the house is repaired. I know that fish can not speak, but going to feed them every day, that gave the impression that they were pleased to see me and it all helped keep me going.  Its taken me 4 years to get this aquarium setup and working well, and I started doing it to help my memory and help me relax, so its a major part of my life and this fish, silly as it may sound are an extended family, and I only hope that we can get them all back in the house before winter sets in properly, because I don't think they will survive and that will be upsetting after all we have gone through in the family.

God willing we will all come through this and come out the other side before much longer.

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 to come in to finish off.

We have now got dates for the carpet fitters, which can be changed if the works gets ahead of schedule, and also have a moving in date.

If this is completed early then with luck we may move in earlier, as all of the carpets are ordered and in stock.

I confess that I am now looking forward to the next 6 weeks being over so we can return to our house and not have noisy doors slamming all day and all hours of the night.

I just hope that nothing else goes wrong.

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.

Routine

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 until something happens which distracts me, like someone coming to the door, or perhaps the telephone rings, after which everything goes haywire.

Reminders for medication can be done in many different ways, but mine is set on my mobile phone which stays in my pocket, from getting up in the morning until I switch it off on a night.

As far as my medication is concerned this is all set out by my wife in a daily dose box, and that removes one problem from me as I don’t have to go and get my own medication, because like many other people I have more than one type of tablet, and I don’t want to take the wrong tablets.

Hobbies and assistive technology

Maintaining hobbies has to be a priority but it is not always easy when you have this illness, and it can be stressful when things start to slide away from you, but when I was diagnosed my consultant told me, to accept that things would change, and not to fight it otherwise I would end up being stressed.

In her own words, if you cannot do something you enjoy one day, leave it and try another day, if that fails try on a third day , but if it fails on the third attempt, leave it well alone as you will end up getting annoyed and agitated, which will make life harder for those around you.

Whether we like it or not most of us use assistive technology in one form or another, hearing aids, glasses, and so the list goes on, but in our case it promotes independence and cuts down our reliance on others.

With this in mind most of my hobbies have changed in one way or another, either because they are difficult to do or they have become too dangerous to attempt.

But like many others in the early stages of the illness we try to remain active and if that means taking on new hobbies where possible we should at least try, and using assistive technology, can also help with many things.

Assistive technology causes many problems when it comes to professionals, as many think we should not go down that route.

I was once at a meeting in London where I was told that the use of this type of thing was against our civil liberties, and this really annoyed me as it was a social worker who was saying it. My answer to that was, that in my view we lose our civil liberties when we are diagnosed with this illness, but assistive technology plays a very important part in life of everyone in this world, so why is it so wrong for us to use it.

To be very honest if we can get used to it at an early stage in the illness, we understand what it can do in the way of allowing us to carry on enjoying our freedom without someone tagging along for our protection. Our families and loved ones have enough to do in life and if this allows us to enjoy our freedom for that little bit longer, then so be it.

One of my favourite hobbies on good days is photography, but to carry on with this I needed to buy extra things like a camera tripod and a remote switch, so that on bad days when I have shakes, I could still take photographs without having to touch the camera after it has been set up.

Assistive technology is also a godsend to others like myself who use the computer a lot, or at least try to hang on to it, I find I have days when I cannot use the computer keyboard properly, so now I use voice activated software.

There are times when I know what I want to write, but as soon as I sit down and start typing, the words all disappear, so by using this I simply talk and the words are automatically written for me.

I know that there are gadgets on the market such as the buddy system something which I trialled with Durham county council, and it works well in tracking a person with dementia.

While the system was easy to use it was also easy for my wife to track on the computer although she would not be able to tell which pub I was in, and if needed someone from the council could come out to find me.

Staying active

Keeping fit is very important to all, but like many I have lost co-ordination in swimming, so I had to stop, as I swallowed too much water. The reason was that every time I moved my arms my mouth started to open, so it was a case of stopping before something happened

I was referred to the local gym, as one doctor said that I was overweight, but there were problems here, because the staff did not really understand dementia or memory problems, and left me to it without support.

 On the second day I fell off the back of the tread mill three times and was told to stop larking around. The fact was that the machine was set at a high speed and I could not get it turned down in time. So in the end I gave up going to the gym and carried on walking instead, as that could be done at my speed without machines to think about.

Sleep

It is very important to get a good night’s sleep, or so we are told, yet sleep disturbances are common with people who have this illness, and sometimes this can be distressing as I found when I started having horrendous dreams and nightmares which would not go away.

When I wake up from these, I sometimes listen to some calming music on my music player, which stays next to the bed.

But I once found to my horror that some music which I enjoyed during the day had bad repercussions at night, so through trial and error and now I only have certain music with me at all times.

Noise

General Noise and background noise can also play a major part in a person’s life when they have this illness, as many like me find that their hearing starts to go. I found my own hearing became acute through the Lewy body dementia, but at the same time I Need hearing aids as I struggle with the television and when I am in meetings.

So allowances need to be made for this in life, because too much noise can cause a lot of distress and unnecessary agitation. Too much noise can also make it harder to think and concentrate on what you are doing.

Life Story work
My consultant told me that I should go home and spend time writing my life story, so that I had something for my family to read in the future including any grandchildren, as at that time I had not expected to see any while I was still alive.

One of the main reasons for this was that it helps us remember what we did and where we came from, especially later on in the illness, although many people with dementia, can remember their childhood and early life very easy, but struggle with present day things.

Originally I was told to write this story before I was given any medication so I never expected to get as far as I did, but it took my mind off the future all together, and at this time we heard that our daughter was pregnant and after three miscarriages was going to have her first child.
We now have three wonderful grandchildren, so I have an extra reason to complete this story as I would like to share this with them given the chance, giving them more of a chance to see who I really was and where I came from.

At first I found it very hard to understand why I was doing this, but then I realised that most of my life was untold, and even my dear wife did not know much about my early life, and although we knew each other in the teenage years through Scouts and Guides, there was quite a lot of gaps where the information was missing.

These life stories will also help carers (or Care Givers ) along with care staff to understand who they are looking after, and what these people did in life, such as where they were born, where they lived, who they married and who their children and grandchildren are, along with their pastimes hobbies, likes and dislikes. This will in the end give them a clear picture of who they are looking after.

They will also give loved ones and family members something to remember their loved one by, as it will share all the happy memories this person wants them to have.

Since starting my life story it has taken on astronomic proportions, as I kept remembering things that were said by my family and relatives. One of these days I will have to stop, and see if I can get it all printed and backed, for my grandchildren in the future.
I can recommend this to anyone who is starting on this journey as it not only brings back all of the happy memories, but takes our minds off what may be coming further down the road.

 

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 feet measured, and as things were going to be tight, and my wife was needed to keep an eye on the grandson who is the youngest and gets into everything.
So she asked if I would be alright going up to the school to pick up the youngest from the primary school which is about 1 1/2 miles away.

I have walked this route on may occasions, and enjoy the walk, as it is relaxing, so I agreed to do it.

Having got to the school, I waited as everyone came out, and the teacher looked at me and asked who I was waiting for, and I explained. I had seen my grand daughter wandering round the classroom, but she was in her own little world, and perhaps because she had not seen her mum she did not come out.

She asked where everyone was and I explained and said that we were walking home. On the way I asked what she had been doing at school and whether she had enjoyed herself. She was quiet at first, but then started talking about spellings, and how she sometimes gets things wrong or spelt the wrong way, as some words sound differently to the way they are spelt.
I said that I loved spelling when I was at school, but these days I can not always remember how words are spelt( and without spell check I would not be doing this, although sometimes spell check can not fathom out the words I am trying to spell) so I am stuck.

She looked up at me and said. But Grampy you have an excuse as you have old timers?

I confess that I was taken back by this and felt very tearful as this little girl of five had remembered this, and I felt very humbled that she was being so thoughtful in what she said, and for someone 5 year old that takes some imagination.

We had a long talk going home, and after she had changed out of her school uniform, she came back downstairs and started talking again, sounding so old for her age. As Claire has said on many occasions she is 5 year old, yet there are times she sounds more like 35.

I had trouble trying to explain this to my wife and Claire, because I was still close to tears, the effect had been something I had never expected, as it was so spontaneous.

So it proves that children can understand more about this illness that we accept, and possible think more about it than adults. 1 comment

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.

Printouts

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 others greatly, when they try to explain the illness in more detail.

The Mayo Clinic also has a sheet on this topic which can be very useful to those who need advise on what to say and do when a member of the family has the illness and this to would be helpful to anyone who has children and needs answers to possible questions

Alzheimer's: Helping children understand the disease

Alzheimer's affects everyone in the family — including the kids. Reassure your child with simple, honest explanations of the disease.

By Mayo Clinic staff

Watching a loved one progress through the stages of Alzheimer's disease can be frightening, even for adults. Imagine being a child struggling to understand why grandma is acting so strangely or can't remember who you are. You can help by offering comfort and support when needed.

Anticipate your child's questions

When your child asks questions, respond with simple, honest answers. For example:

· What's wrong with grandma? Explain that Alzheimer's is a disease. Just as children get colds and tummy aches, older adults sometimes get an illness that causes them to act differently and to forget things. They might look the same on the outside, but their brains are changing on the inside.

· Doesn't grandpa love me anymore? If the person who has Alzheimer's disease no longer recognizes your child, he or she might feel rejected. Remind your child that the disease makes it hard for your loved one to remember things — but your child is still an important part of the person's life.

· Is it my fault? If the person who has Alzheimer's accuses your child of some wrongdoing — such as misplacing a purse or keys — your child might feel responsible. Explain to your child that he or she isn't to blame.

· Will you get Alzheimer's? Reassure your child that Alzheimer's disease isn't contagious. Most people don't get Alzheimer's.

· What will happen next? If you'll be caring for the person who has Alzheimer's in your home, prepare your child for the changes in routine. Explain to your child that your loved one will have good days and bad days. Reassure your child that he or she is loved — no matter what the future holds.

If your child has trouble talking about the situation or withdraws from your loved one, open the conversation. Ask what changes your child has noticed in the loved one who has Alzheimer's disease. Your child's observations might lead naturally to an exploration of his or her own feelings and worries. Tell your child it's OK to feel nervous, sad or angry. You feel that way sometimes, too.

To boost your child's understanding of Alzheimer's, read age-appropriate books on the disease or take advantage of other educational resources.

Be prepared for emotional expression

Your child might express his or her emotions in seemingly indirect ways. For example, he or she might complain of headaches or other physical issues. Your child's attention to schoolwork might begin to slide. If you're caring for your loved one in your home, your child might be reluctant to invite friends to the house — or he or she might look for ways to spend time away from home.

If you notice these types of behaviour’s, gently point out what you've observed — and offer your child comfort and support. Listen to your child's concerns, and help your child feel safe in sharing his or her feelings.

Stay involved

To help your child stay connected to the person who has Alzheimer's, involve both of them in familiar activities — such as setting the table together. Shared leisure time is important, too. Even young children can stay connected with a loved one who has Alzheimer's by paging through photo albums, listening to music or doing other simple activities together.

If your child becomes impatient with your loved one, remind your child that the behaviour isn't intentional — it's a result of the disease. Together, focus on finding ways to show your loved one how much you love him or her. Even if your loved one forgets your child's name, he or she can still feel love and kindness.

Good luck and I hope this helps

 

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, providing of course that someone paid for it and also paid a large sum of money to a chosen charity.

Am I stupid, I don't know, certainly my wife thinks I am, but I would never have even considered this years ago before my diagnosis, so perhaps I must have lost my fear of things like this, or I just want to do something like this before the illness gets any worse.

I could never do a bungee jump, as I would be terrified of the rope snapping, but why am I not frightened of the other two, I really don't know.

I suppose with these two you are strapped on to something, which is a form of security.

In 2007 my son decided to do the Coast to Coast cycle ride,but as things turned out he could not get anyone to join him, and one day suggested that I should join him, but I don't think either he or my dear wife expected me to take him up and do it. I still don't know what made me agree to do it.

It took over three months of training to get fit enough, and get used to the bicycle, which in the end was part of me, and I got so relaxed I would do parts of the journey on my own, as it was away from traffic.
When we started it was difficult to stay up right and stable on the tracks, and I had problems at times with sharp corners, as I could not always judge them.
However after a while I felt as if I had never been away from a bicycle.

I used too cycle to work each day before I became unstable and stopped, and confess that I never ever expected to get back to it.

Yet once I got past the first month I got less and less stiff, in myself, and enjoyed it. After the big event I felt as it I had wrecked my right knee and hip, and had problems for quite a while, and still do on cold days or after a bad night.

Although it was hard work, and brain draining at times, I really enjoyed it, as it was an experience that I never thought I would ever try let alone complete.

The second day was hell as I kept forgetting which gears were which, and felt like throwing the bike into a stream on two occasions.

However the fundraising side of this took its tole on my family, and we all agreed we could never do it again, as it was all down to family and friends, although we did raise around £3,000 for our local branch of the Alzheimer's Society.

But I don't think I could get insurance for this anyway, as travel insurance is well out of my league, so much so that last year we went to Malta and my insurance cost just as much as the holiday, all because of this illness Lewy Body Dementia.

So perhaps I will have to just think about this and imagine what it would be like to do it.

This illness makes you think of all sorts of stupid things at times, but I guess its because we feel as if time is running out, so perhaps I should just take it easy and behave myself.

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.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2649672/

 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 fact that the window would only open about 3 inches, and it’s was the sound of me trying to force it that woke my wife up.

On another night I was standing in the corner trying to get away from the horror, and as explained before I could describe it all to my wife when I settled down later in the day. 

This is all very distressing when it happens and there are times when I really don’t want to either go to bed or go to sleep, because it sometimes terrifies me of what may be coming.

I know that it’s all part of my illness, but to be honest it still does not help.  There is medication which helps but mine was reduced as I just could not wake up at all and that was disastrous for me.

On one such event I remember thinking that I had got out of bed on three occasions, and each time I went back to sleep the same nightmare started again. It was only when I finally woke up that I realised, that this was the first time I had woken up, and the rest of the time I only dreamt, that I had woken up and got out of bed? But this was so graphic that it was difficult to understand just what happened.

This worries me as I wonder how many people have heart attacks during these dreams which are so nasty you simply can not break free of them.

I have also found it very hard at times, to work out just what is reality and what is just imagination.

I often find myself in a toilet during the day or night and end up hitting the wall, to make sure I am where my brain tells me I am. This often ends up with me having a very sore hand the next day.

This must be one of the most distressing illness there is, as its difficult to make a clear cut between reality and fiction. 
Many people have said on occasions, that when someone is having a very bad night, the carer should sit close ans speak to the person. This is something both my wife and I will tell you is not a good idea, as you then become part of that bad dream and can end up being hurt. 

In this case my wife ended up with a black eye, which was very sad and distressing for me.

This comes back to the point where at nights it is very difficult to separate the horrible dreams from reality, We all dream at night, but in the morning the detail can be very sketchy, but since my diagnosis, or just before it started I have been able to remember the worst nightmares in great detail, and occasionally write them down in the hope that they have some bearing on life, but in reality there is nothing at all, as these things have no bearing at all on my life or family they are totally weird

  

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 same something, I become a vastly different person. As my dear wife has said on many occasions, I am not the person she married all of those years ago.

But having said that I confess that I cannot get near to imagine, what she goes through on a daily basis.

Her role as my carer or care giver has changed from the one she was used to, and that was being my loving wife. Yes she still is my loving wife, and I would not change her for anything in the world, nor could I do without her as she is my rock and support when the wheels come off. But her role has changed so much, and it hurts me at times

This illness has changed me in many ways, the way I think, and my personality have all changed since the diagnosis. Yes a person with dementia looks quite normal from the outside, but we have changed inwardly, and sometimes we don’t appreciate or understand these changes. It’s as if the brain is now controlling me rather than the other way round.

For years I was my own person and proud of it, I did not need to be protected nor did I want people telling me how to do things, or doing it for me.

I was an engineer and did estimating, costing, writing reports, as well as doing budgets, yet that is all but a mere memory, and these days its very confusing looking at figures and letters, trying to understand what things mean.

Yes I did what I wanted to do, the way I wanted, but now, I have to work things to suite others and that can be upsetting. 

I was secure and felt strong, yet now I feel very insecure at times.

Now I find myself more and more dependent on others in the family, and that includes my big champion my dear wife.

As prominent person with dementia in America (Dr Richard Taylor) once said, I am not sure whether my wife is my champion or my hero.

Heroes are shared with others.

Champions are more personal.

Heroes are worshipped from afar.

Where champions generally embrace the values and feelings of those they champion.

With heroes is usually the other way around.

So perhaps in many ways Janice is my personal champion, and that means quite a lot to me.

These people are our personal champions, our Hero’s although we normally speak of Hero’s being someone who is shared by many people, but I do think my wife is my Champion as she cares for me, and helps me feel more secure, no matter where I am, and like others she looks out for me all the way through the illness, and supports me when I get stuck.

They are sometimes our personal driver

Our personal Secretary

Our advisor

Our travel booking agency, and travel companion

Our personal nurse who sorts out our daily care and medication

Our personal handy person, when we forget what we need to do.

Our Gardener when we are unsure

Personal Cheerleader, yes because without them constantly saying we are doing fine, we would simply give up.

My Financial manager

My Spokesman

When I am attempting to write a talk, she usually checks it and edits it, because my brain goes faster than my hands, and I end up missing words out, or sections just seem to disappear and things don’t sound right.

Janice sorts out the washing machine that is too difficult to work out, and iron our clothes so that we look clean and tidy when we go out.

I use to enjoy ironing but now, I get the creases in the wrong place most of the time

Theses loving people must get frustrated by us asking the same questions over and over again.

Do they trust us to do anything without making a total pig’s ear of it?

Janice has protected me throughout, but allows me to do what I want, within reason, in the hope, that I will realise what it’s time to hang up my boots and stop doing certain things. It’s a very slow and hard process doing this.

It’s very hard to accept defeat or ask for help, and I guess that’s just a man thing, Never Admit to being unable to do anything, as it makes us look foolish.

But to be honest I feel we are only fooling ourselves, and there comes a time when we have to say enough is enough.

Everyday has to be a drain on her, as we are no longer the team we were, working together to build a good life for us both and when we worked together to achieve our aims, now she has to do most of this work herself, because she usually ends up correcting the things I have attempted to do on my own.

I am now more dependent on Janice than I ever dreamt of, and if anything were to happen to her tomorrow the world would all end for me.

A few years ago she fell and broke her ankle, so I was upgraded to chief, cleaner shopper and driver. I don’t usually go near to the car these days unless she is there, even though I have driven thousands of mile in my life, I no longer feel quite at home in the car any more and won't get in to drive unless she is with me.

But I could not have done the shopping without her being on the end of the mobile phone. Where is this usually found, what kind of this or that do we use, and what does it look like, all of which must have driven her up the wall. It was a terrific drain on me, let alone poor Janice, but in that instance our roles had changed.

But when you have an illness like this, shops become a nightmare place where we don’t like being, because some buffoon keeps moving the shelves and their contents around just to confuse us.

As well as negotiating all of the different aisles with thousands of things on, and we are trying to work out where each item is, we also have to watch for all of the mad high speed idiots with the trolleys, the rows of storage trolleys waiting to be unloaded, as well as the staff who now pull full trolleys towards you while walking backwards. It’s all mind blowing to us and very confusing.

So yes I would be lost without my personal champion