Look into the world of Dementia
A Week with Mr Lewy Body
Well it’s 1.30am, when the night is still young, so they say, but I am not dancing the night away or even sleeping. The reason is a man called Mr Lewy Body has taken over my Dad’s mind, so here we are.
We started the night shift around 10.30pm. He went to bed at 9.30, after taking his pills and Horlicks, to help him sleep. That’s where the joke starts. Every 15 to 20 minutes we have been to the toilet, or been seeing my children safely over a bridge, they are 26 and 31 years old, didn’t think they needed that much help – even baking a cake. You name it, we have done it. All in the course of a night
This dementia is the second most common to Alzheimer’s. It has varying ways it can affect the brain – vivid dreams, nightmares, some nice, others not so nice. Hallucinations, seeing things that are not really there, but to him they are very real. Trouble getting words out, causing more frustration, and anger towards those they love.
Time now ,4.30 am still no sleep. So where has the night gone? Well, he has had spirits with him who will not let him sleep. We have been trying to find a recipe for a cheesecake that he wants to bake.
We will do that in the morning, I said. Oh no, we have to do it now, so off the top of my head I am telling him the ingredients for a bloody cheesecake at 2 .15 am. Back to bed for a while, but not for long. Now I find him making a cheesecake on the walker that stands in the corner of the room. Another toilet visit, cake made, back to bed. Not for long.
He has been getting worse, being awake all hours, and it’s more difficult now he is a Ninja burglar. If you do happen to drop off, he has got past you into the kitchen or the living room, re-enacting his dreams, which can be dangerous, as he is prone to falls because he also has Parkinson’s Disease.
It amazes me that he shuffles around in the daytime, and you hear him walking. But oh no, not in the night. The last week he has fallen four times, and he does that quietly as well.
We decided we would have to put a track on this Ninja burglar, so we bought a baby monitor. The first one just did not pick him up as well as we had hoped, so another one was bought. That is better, although I can hear everything – Mum snoring, the dog snoring, and sometimes Dad shuffling, or moving things around the bedroom. We do a lot of emptying drawers, refilling and starting over again.
Now we have a sensor, which in theory should go off when he gets out of bed and heads to the door for his escape. The jury is still out on that one – more updates to come. When it does go off, it’s a bit loud, although it is still only alerting me, and I’m not even asleep. No surprise there then.
I have found that if I give him his morning tablets between 3.30 and 4.00am, he will settle down about an hour and a half later. He then sleeps like a baby until whenever he needs to be up, for one reason or another. So hey, guess what, – it is also my turn to gets some zzzzzzzzzz.
He has just started a new tablet today after seeing the dementia doctor last week. It is to help him sleep, stop him seeing things and hallucinating. Stop him thinking he needs the toilet. Control the anxiety etc. Guess what the side effects are: yes you guessed, may cause hallucinations, more need to use the toilet, frustration etc. WHAT!!!.
I love my Dad, and do not like to see him like this. He is not the man we all knew. Twenty four hour caring, whether you are young or old, is bloody hard work.
There are a lot of people out there who care for a loved one on their own, with no help from other family members, or outside help. I am lucky I have family who help, mostly to give me a couple of nights away, every 2 weeks, and my husband who helps me in the day time. But the nights are very very long.
Dad did not ask this man Lewy Body to join him. We all wish he would just do one, but we know that is not going to happen. You just have to laugh or you would cry. There is laughter, but also a lot of tears.
Today is shower day. A carer comes in twice a week to give him a shower. This was happening before we came to live here, as Mum could not manage, so we carry on with the arrangement. I do the other days, and shower Mum as well.
After our eventful night he is up and waiting for his shower. You can hear him talking and having a laugh while all this is going on. Lovely to hear, except it’s downhill from there on.
We now have a grumpy gramps for a little while, taking ages to eat his breakfast. We encourage him: “Come on Grandad (we all call him Grandad), eat your breakfast.” He snaps back that he is eating it, and he will eat it in his own time. Ten minutes earlier, I was being praised, being told that he didn’t know what he would do without me. So walk away, count to 10, off we go again.
After a little snooze in the chair, he wanted to go and sit outside. So I sat him where I could see him and made him promise not to move. All wrapped up and another little snooze in the sunshine.
I have to laugh really. When we went to the dementia doctor the other week, she asked him if he liked the telly. He said no, it was a load of rubbish. Did he like documentaries on the telly? “Oh yes, I don’t mind them,” Grandad said. “That’s good then,” the doctor told him. “You could watch them and you would keep awake in the daytime, or you could read a book.”
Now I know the theory is good, but put that into practice. Firstly, not only has Mr Lewy Body done his best to mess everything up, he took his concentration as well. Grandad has always been very active, both physically and mentally, but now it has gone. Secondly, he has been awake all night, and you can’t blame him if he wants to sleep. I want to sleep, but keep going. The difference is, I am physically and mentally fit, and able to keep busy. So yes, the theory works, but in practice, no.
Lunch went well. Ate it all. My food was crap last week, but it looks like it is okay this week up to now. I made his favourite for tea, cottage pie, so fingers crossed that will go down well. Another little snooze, and a wander around the house.
We had a discussion about his walking stick, not the one he is using regularly, but one that needs some tender loving care. He wants to put it outside in the shed and not in the house. Finally, after much discussion, it is staying in the house where it will be safe. Tomorrow is another day.
Off he goes again for a little sit outside. Not for long though. He would love to potter in his garden, but those days are gone, and it is very frustrating for him. He does enjoy sitting in his greenhouse, even though he is asleep most of the time.
Well, tea went down satisfactorily, a success. Trying to keep him awake, like watching the news, watching a programme about where he was brought up. His eyes are shut but he is listening. We can talk about the old days. His memory is very good for those times, but the present has gone.
Supper and tablet time, then ready for the night shift. I let him try and get ready for bed, and then I finish off. Tonight he is wobbly and needs help. I have told him his little great grandson is coming tomorrow. This always puts a smile on his face. Hopefully, he will sleep with that thought.
Soon I have ringing in my ears from our new Ninja Burglar sensor machine. It is still in the testing stages to get the angle just right. I never realised how many times Grandad sits up and lies down in bed until tonight. Every time he sat or stood up, it was like a James Bond Movie – lights and alarms going off. Off I go, only to find him just sitting there. The more I asked what he was doing, the grumpier he got. More adjustment is needed, I think.
It has been a funny old night. He is in a bad mood, and cannot understand why it is that every time he is out of bed, I am also there. “Why are you asking me these stupid questions, when I don’t know what I am doing?” he keeps saying. The best approach in the end is not to answer his question.
It all started a little earlier this evening. The first toilet trip at 11.45pm was a very slow shuffling and wobbly visit. The next time, not that long later, he was standing in the corner of the bedroom with his back to me, saying he was having a wee. “Not there you’re not,” I said in a rather shocked and raised voice. He then said he was filling the tank up with fuel.
We went to the toilet, as he hadn’t filled up the tank in the corner as I first feared. He does have a bottle at the side of the bed, but he still wants to go to the toilet. We have only in this last couple of weeks, after months of trying, got him to sit on the toilet. “It is not right. Men stand up, women sit down” he would protest. So now at least we are not going through quite as many disposable pants as before.
I pulled the flush, and he shouted: “What have you done that for, you’ve now emptied the tank of fuel. Now we have to start all over again.” I can assure you that over the next few hours we must have filled it up many times.
At 3.15am, I gave him his tablets. I am tired and hope he will settle down soon. It is now 4.15am and he is still talking about fuel tanks, and putting diesel in to a petrol tank, which he did once, a long time ago. So maybe this is where it has all come from tonight.
I had been in and out of bed up to giving him his tablets, but I think that is more tiring than being up at silly o’clock, hence writing this.
Another toilet visit, still grumpy. He is fed up with being told how to do this, not to do that. “I am not a child,” he shouts. All I said was: “Don’t have any more to drink or you will be going to the toilet again.” I walk away, count to ten, deep breath and it will be fine. Tomorrow is another day, and I will be in favour again.
Although I have a lot of patience with him, and I know he can’t help the way he is. it does wear very thin at times, and we have a little spit and spat. More so in the middle of the night when we are both tired.
With Mr Lewy Body, it is best not to question why, and the best option is to go along with him. Then there is not as much conflict. Tonight he has been more grumpy than normal, so now the question is: has the new tablet started to work, or is it just one of those nights? Time will tell, let us see what later today brings.
Time is now 5am. He is still restless, but hopefully he will drift into his deep sleep soon, so that I can drift in to mine.
Grandad is a different person today. Much calmer, and happier than he was last night. He has enjoyed some fresh air and sunshine.
Our Grandson came and he always cheers up for him. He is only eight and a half months old, but it is surprising what he can do for all of us.
Grandad has also had a lot of snoozes, but no surprise there. Meals have gone down very well, and this evening, he probably has had far more for supper than usual.
So I got him ready for bed, and he headed off at 10.00pm. It is back to the night shift, and I wonder what will happen tonight with Mr Lewy Body?
Well here we go again. Two trips to the toilet before midnight, and it continued again throughout the night. How many times can one person go to the toilet in one night? So much for the new tablet, which is supposed to slow this process down, amongst other things. Jury still out, but we have to give it time.
Tonight we have a problem with nuts and bolts (think I have lost mine). Anyway, I think Grandad has lost a watch and it is in this tin of rusty nuts and bolts. He has been trying to find this watch but cannot find it. I am not looking in the right places, even though I have looked under the set of drawers, around the bed, in the bathroom. In fact everywhere where Grandad had been looking, and told me to have a look.
So guess what? I don’t know what I am doing, and leave the job to him. I am afraid, on this occasion I told him that I really did not care about this tin of nuts and bolts, and that I was tired, and we should go to sleep. I was told to bloody well go to sleep as he was not stopping me, and to leave him alone.
Walk away, count to 10, deep breath and go back. I told him I am here to make sure he is okay, and he was as tired as me, so I thought it was a good idea to try and get some sleep. We would probably find the box in the morning, I suggested.
So far so good. Not for long, as we had yet another toilet visit, and an even more grumpy gramps.
I encourage him to drink a lot of fluid in the day time, as I have seen him more confused because of not having enough to drink. Then we try to limit the fluids to Horlicks and water with his bedtime tablets. I still cannot understand why he doesn’t go to the toilet that much in the daytime, but he is in and out of bed all night.
I mentioned this at the 3.45am tablet time. Not a good idea. Again it is all my fault, as I make him drink all this water, and then moan all the time when he goes to the toilet. On that note, he jumped up out of his chair, and went back to the bedroom a lot quicker than he came and without his stick. Yet on the journey to the living room to take his tablets, it was shuffle, shuffle, wobble, wobble. Shows what temper can do.
It’s 5.10am and he is in the bedroom looking in drawers, probably looking for nuts and bolts and a watch. I am not going to ask, as it could end badly. So quietly to myself I ask: “Please Grandad, just get into bed and stay there, so that we can both go to sleep.”
Time is 5.30, I think he is settled. Yes !!!.
Confused morning, does not really know what is happening, but after breakfast and a little snooze he is a little better. Our Grandson was here again today, and he made Grandad laugh, which is always a good thing. This afternoon he had a sit outside, but he is so frustrated as he can’t or we won’t let him go gardening. A deal was made that later, when I had finished my jobs, we would do some work In the garden, and he could supervise. All good.
At bedtime he was grumpy, as I asked why he had stopped sitting down to the toilet. His reply was that he could just what he wanted, and I had started again, asking stupid questions. Deep breath, count to ten. It could be along night.
First wee at 11.45pm, then it was up and down thereafter. We have had a lot of fumbling around in drawers next to his bed, looking for who knows what. I really don’t want to ask.
We have moved our Ninja burglar sensor box, so now alarms sound when he is heading for the door. It still sounds like an action movie I suppose, as he is always heading for the door on his escape route. After getting up and seeing what is happening, not many minutes later – or that’s how it seems – it is going off again.
Apparently our clocks keep moving tonight. The hands are spinning around very fast, and when we blink they stop. So time is moving very quick.
Grandad has taken his pyjamas trousers and his pants off, twice tonight. He doesn’t know why. Earlier, he told me that everybody was having babies in the bedroom. I think this came from the telly this evening.
When he sits in his chair, we think he is asleep, but a lot of the time he is listening to what is going on although his eyes are closed. He will latch on to conversation, and a few hours later ask questions about it. No flies on Grandad.
He has not told me off yet. Is this the calm before the storm? I gave him his tablets at 3am, earlier today. I just thought “Well, we are up again now, so may as well have them.”
Its day four of the new tablet, and as yet I have not seen any difference with Mr Lewy Body Or has there been a slight change and I have just not noticed. I don’t know.
I am not a morning person, never have been, however the only good thing that comes with being up at silly o’clock is the dawn chorus. It is lovely to hear all the different birds singing, saying “Get up, it’s a beautiful morning. We are up and now you should be.”
He seems settled, it’s 5.30, so sleep I think.
Grandad is having a confused day. Mr Lewy Body has decided to stay today – sometimes he does, and other days, although sleepy, he seems to take a back seat for a few hours.
Because of Easter, his shower day has been brought forward, and a change in the routine does throws him. He has been sorting the drawers again, and also up and down from his chair, walk around, then sit down again. However, he has had a look at his British Legion Magazine today. He’s a little more active, but with plenty of snoozes as usual.
Eventually Grandad got settled and is in bed at 10. 15pm. He has eaten a lot of chocolate tonight, plus his supper cake. I don’t think this will be good in the middle of the night.
How right I was. He has drunk so much he is in and out to the toilet more than normal. Rambling, grumpy, you name it. So note to self: make sure he doesn’t eat any chocolate tonight. Grandad had a stroke a few years ago, and before this he did not like anything sweet. After the stroke, his taste changed, and now he eats, desserts, cake and chocolate.
I have been up and down most of the night. It’s funny but when I drop off, and the James Bond alarms goes off. I jumped out of my skin, and I know what it is. Dad still does not know about the Ninja burglar alarms, or we don’t think he does. He has never said anything.
His pants and pyjamas have been on and off most of the night. He has taken to standing up for the loo again, so he takes everything off, and then doesn’t get them back on quite right.
Oh god, the nights are so long. Tablets at 4.00am this morning, getting later. We did have an hour between 3 and 4 where it was quiet, so hence the tablets later. He still did not get really settled until 5.30am. Then at 6.00am the dog decided she wanted to go out. So I’m up again. I feel sorry for the dog as she sleeps next to Grandad’s bed, which means she also gets a very disturbed night. She has things dropped on her, but she is very good, and just gets up and gives us all a look and waits until he settles again, before going back on to her bed.
Not a bad start to the day. Grandad was up about 10.30am. We had our Grandson again, so Grandad was smiling and awake, on and off.
He went out in to his greenhouse today for a little while. He moves things around and then moves them back again, but he is happy pottering. At least he is awake. After lunch he had a few minutes in bed, but not for long.
Then, as the afternoon wore on, he got grumpier, and by teatime he was very grumpy. I don’t know why. He is just having a bad day. I am probably grumpy as well, getting very tired now.
Now he is okay, ready for bed and having supper, but no chocolate.
Fairy uneventful, which is good, although we have had a water pipe problem. Grandad has decided that because his vest, pyjamas and his bed are wet, there is a problem with his water pipe, and it must be bypassing somewhere, because his pants are not wet.
So here goes. The reason for this Grandad is that you decided to take your pants down and just wee where you are, like in your bed. Probably not the best idea I have had. I have been told I don’t know what I am talking about again, and I should bugger off and leave him alone. How tempting this is, but he is not going to change his bed sheet and his clothes, so I decided to stay. All in all it’s a normal night.
I was thinking earlier, if the Ninja burglar alarm didn’t go off, and I didn’t hear him all night I would have to get up and look to see if he was okay. It would be so unusual.
I just can’t understand why he is so much more nasty and grumpy in the middle of the night than in the day time. Then in the morning, when I go to wake him, he is so nice to me. I know he can’t help it, and doesn’t mean what he says. It does wear thin, when I am only trying to help.
So he has taken his clothes off again and I have put them back on, put him back in bed. He has been rambling again, about goodness knows what.
So tablets at 4 .00am again. This seems to be the norm over the last few nights. Then he eventually settles around 5am.
He got up at 11.00am, bright and breezy, but as usual not for long.
As I said earlier, up bright and breezy, but not for long. He was soon asleep again, after breakfast. All he seems to want to do is eat at the minute. I keep joking with him he has worms.
Grandad always had a joke, and laugh, but not now. He doesn’t understand if you make a joke. Hardly ever has a joke, and I think this is the worst part, as he has always had a good sense of humour.
After lunch, he went and sat outside. I escaped this afternoon, and went shopping. Neither Mum nor Dad can be left alone now, so it is getting more and more difficult to do anything. Mum falls asleep a lot, and is quite wobbly and would not know where Dad was. If he fell, there is no way she could sort him out. Also, Dad could not help Mum. So someone has to be here all the time.
He can’t settle to do anything. He can’t concentrate on anything, so his eyes are shut, and he is gone.
I got him ready for bed and got him settled around 10pm.
Settled well, Grandad did not get up until after 12. Then I’m afraid he was up and down. Mum sorted him out at one time. He thought he had pooed the bed, and he had nothing on. I could hear all this going on over the baby monitor. Mum dressed him and told him he was dreaming. It was Mum’s turn to have Mr Nasty.
However, I did take over later. He settled for a while, and then it was back to normal. We have been rescuing people tonight from a ship that was sinking, so it was quite traumatic, and very real to Grandad.
I think he had listened to the news, and it just got in his head. Tablets at 4 am again, got him settled eventually, so I went back to bed. There is no wonder he is shattered in the day time, when all this is going on in the night.
He got up this morning very confused. He was seeing children in the playground across the road. Think it is going to be another long day.
We have had a funny morning though. He came out the bedroom with all his hankies. “I am going to iron these, they are all bunched up.” “I’II do them for you, it will probably be safer,” I say. Think to myself. “Bloody hell, I am now going to start ironing hankies, on my already exhaustive list of things to do.” He hands me the hankies: “Are all these clean Grandad, because I do wee, I do poo, but I don’t do snot.” My Mum is sitting in the chair, nearly wetting herself with laughter, and then Grandad started laughing. It was wonderful, laughter from both have not happened in a long time.
I am pleased to say they were clean. I was thinking while doing this task: “This is what I did at school. The first thing I learned to iron, was a hankie. Memories hey!!”
There have been so many things that happen during the night with Mr Lewy Body, and some are so funny. For example he has delivered babies, parked a jet ski in the corner of the bedroom, couldn’t walk because he had tar in his slippers. An aeroplane in the shower.
Then the not-so-nice, like things crawling on the floor, insects, big holes that have appeared in the bathroom, water everywhere. People chasing him, traumatic events. There I am, stamping on the things that are crawling on the floor, on my hands and knees mopping up water, all of which is not there. You then start to question your own mind. The good and the bad, too many to mention. I am sure they will continue.
Mr Lewy Body is our uninvited guest, and will not leave us now, so it up to us as a family to figure out how to live with him. I thought I could outwit him, as I am an organiser, and I sort things.
The answer is no, I can’t with this chap, he is here to stay, changing our lives forever, especially Grandad’s. From the happy man, who helped everybody, who was always busy working, always there for his family, he is still there for us all, but not how he would like to be. It is all because of Mr Lewy Body, who has taken over his life.
We do have some good times, but they are getting fewer as the months go on. As I said earlier, we have to laugh at My Lewy Body, or he would make us cry. We can’t beat him, we just have to live with him.
*This goes out to all the thousands of dementia suffers, regardless of their type of dementia. To all the thousands of carers, many of whom have to cope with this on their own.
More help and understanding is needed for people with dementia. It is not all about money, although there is not enough funding. It’s understanding their needs and how it affects their lives.
We must make sure that when the time comes that they can no longer be cared for at home, and end up in a hospital or a care home, they receive the care and dignity, which should come naturally instead of being ignored, like they don’t exist, or don’t understand. They do.
They are somebody’s parents, they have fought wars, brought up families, have been carers. They should not be let down by our society, and this should not be happening in this day and age.
Written by Karen Wilson
If this story has touched your heart, please feel free to donate to:-
The Lewy Bodies Society,
8 Albany Street,
Or Lewy Body and Parkinson Society as above.
58, St Katherine’s Way,
London E1W 1LB