Wednesday, 7 November 2012

Day to day life with dementia


 

I was recently asked to speak about day to day life with dementia, but it’s a very large topic and would take a while to get through

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.

The diagnosis of this illness can be very long and traumatic for all who go down this journey, and it can be full of events which make it seem worse than it is.

On the other hand some people have a good early diagnosis and then get the medication in the early stages which can help quite a lot. While it does not give us our lives back as we knew them to be, it does help to give us a more stable time.

However I know that not everyone is able to have to medication, for one reason or another, but we must not allow this illness to take over without a fight.

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.

Activities and hobbies

We must try to carry on with life as we did before allowing for those things that are either too difficult or dangerous to do.

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.

I have lost quite a few hobbies like woodturning which I loved doing, until I forgot how to switch the machine off properly and after nearly breaking all of my fingers trying to grab the very fast revolving block of wood on two occasions, my wife said enough was enough and I was told to dismantle it so that I could not be tempted to go back and try again.

I still enjoy hanging on to photography which is difficult as I keep forgetting the settings, but as the camera is digital I can look at the pictures and delete those that are bad and l keep the rest. This is one of my favourite hobbies, 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 my hand shakes, I could still take photographs without having to touch the camera after it has been set up.

After the diagnosis I took up a new hobby of keeping a tropical Fish aquarium, which really keeps my mind occupied, as it is so interesting as well as relaxing. What is more the fish don’t answer back? These fish are relaxing to watch and care for, and I get a lot of enjoyment out of it on the good days.

Technology plays a very large part in everyone’s life these days and I feel that it can be useful to those who have this illness as it allows them to keep their freedom to do what they want, when they want without the need for someone hanging around them all of the time. 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.

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 of these things.

Assistive technology

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 out 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.

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.

Feeling flat or a little depressed

We all get a little flat or as some will say a little depressed at times, but that is partially due to the fact that we cannot get our heads around the daily jobs we usually do or our hobbies.

Sometimes when things go wrong it gets very hard to get ourselves motivated again, and unless we have enough to keep ourselves occupied with it could get worse.

I stopped saying that I felt a bit depressed years ago as people started taking it the wrong way. In life it’s a term which is commonly used by many people but in some respects we just mean that we feel a bit flat as things are not going as planned.

We do not mean that we are going to do something silly, as some think. But I do think much of this comes from the fact that people don’t really understand dementia and how we struggle with it on a daily basis.

It’s a well-known fact that depression is part of dementia, and many people get diagnosed as having depression, when they actually have dementia, but many doctors don’t actually look to see what is behind the depression.

 

Fitness

We must keep as fit as possible while we can as sitting down in a chair too long thinking about this illness, only makes life worse than it is.

It is very important to all of us if we can keep as active as possible in whichever way we can, 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.

I struggle at times with balance so I am careful in the activities I do, because I don’t want to upset my wife anymore by getting hurt


 

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.

 

While we all struggle at times with bad dreams, or nightmares, some of these in people with Lewy Body Dementia can be horrific. I say this because they are so graphic that I can still remember every detail them, later on in the day, and where a normal bad dream is forgotten as soon as you get out of bed these are not.

 

I have on occasions got up after waking up from one of these, and have gone down stairs for a while before returning to bed. But as soon as I have gone off to sleep it starts all over again, and on one occasion my wife had to stop me trying to get out of a window to get away from the nightmare.

 

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.

Although this can be controlled by medication it does not work for everyone.

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 radio at times, as well as problems hearing when I am in meetings, as I cannot work out what is being said to me when others in the room are talking, as all of the voices merge into one, just like a very bad dream.

 

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 past times 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.

 

I like to think that I am living well with dementia, and fighting it all of the way, and am not going to give in to it while I can still stand up and talk.

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