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.