I feel it’s now time to finish the final chapter in the life of Mr Lewy Body. I hope that this will prepare and help carers and families of a loved one with Lewy Body Dementia.
So since my last blog in 2015, life plodded on, with many ups and downs. Grandad had been deteriorating very fast. He slept more, and especially at night, so that was better for me.
However, in February 2016, he was admitted to hospital with pneumonia, he remained in hospital for 3 days. He was sent home, (in my opinion he should have stayed longer).
Just under month later he was sent back in to hospital with a water infection. He was given antibiotics by the bucket load through a drip. So on top of all the antibiotics he had been given over the past year, his system had now been shot to pieces. This resulted in Grandad getting a bug in his tummy, so then it was off to a room on his own. This infection was GDH positive. GDH is a chemical and if this is in your faeces this means you are colonised with the germ (bacteria) called Clostridium difficile (abbreviated ‘C.diff’ or ‘CDT’) .
By now Grandad had gone down hill fast and he was unable to get out of bed. He became very unresponsive and agitated at times. Unfortunately, he then developed Aspiration Pneumonia, which is a lung infection that develops after you aspirate (inhale), food, liquid, or vomit travels into the lungs. … If you are not able to cough up the aspirated material, bacteria can grow in your lungs and cause an infection. Now Grandad had always loved his food, but now everything had to be pureed. He was given meals that did not resemble anything, although very nicely set out to make it look good. Apparently, these individual meals cost a ridiculous amount of money, and many are wasted as they taste horrible.
Grandad still had a little independence at home, but now it has all gone. He cannot feed himself, he cannot walk, he is padded out, but the bed sheet is constantly having to be changed. This causes him a problem as he is having to be turned one way , then back again the other way. There were a lot of moans and groans, and some angry scenes at times.The nurses were very good to him, but we were there to help as well. There was a young lady Dr looking after him. One day, she came in and we were talking about Grandad, and how the illness had robbed his life, she stood there and said she would look after him as if it was her Grandad, how lovely was that.
There was one problem we had which could have been tragic, i had given Grandad his lunch or in a fashion. Then i had to take my mum for an appointment, so our Daughter came to stay with Grandad. She telephoned me and said “have you left half a banana on Grandads chest “. Well it was obvious that i hadn’t, so who did ?????? So when i got back to the ward, i went to see the Sister, i was not happy. As he doesn’t know what he is doing he could have picked the banana up and put it in his mouth, i don’t need to tell you what could have happened. The Sister apologised, and she would find out what had happened. I can tell you that one of the nurses who had been looking after him did not come anywhere near after that incident.
Spending most of the day in this room with Grandad, there was a lot of time to think, and look back on his life. How his family mean the world to him, remembering how he was, full of fun, talking to everybody. Now i look at him, where has my Dad gone.!!!!
Looking out of the window, i was telling Grandad what was happening, well talking to myself really. Many pigeons cavorting with each other, watching people trying to park their cars in the car park. There were many funny sights. One sight that sticks in my mind, everyday i watched one Magpie, was this a sign?
The year had already started badly. On the 1st of January we were all getting ready to go to our Daughters for lunch when Mum had a fall while getting into the car. So off to A & E we went, she had smashed her left shoulder. I can tell you that A& E is not a good place to be on New Years Day. The staff need medals, it was full of drunks, drug addicts, you name them they were there. Just chaos really. So eventually we were sent home with a collar cuff, and many painkillers, it was not good. She was unable to go to bed, so she slept in her chair, but was gradually getting more and more confused. On the day we went to fracture clinic, she was in a right mess. The Dr sent us to A & E again, where we found out she had been given drugs that had caused an overdose. She also had kidney failure. So she was then given an injection to bring her down. Well i knew my Mum could swear, but not like that. What made it worse she was taken out of a cubicle as they needed them, and put in the middle near the Drs station. All i kept saying was shhh, there are poorly people in here. I knew she was poorly, but the language!!!!! Eventually, she was admitted to a ward, and a lot calmer thank goodness. 6 days later she was sent home, but still in pain with her shoulder.
Mum didn’t come to the hospital everyday as it was just too much for her. However, on the day she did come i wished she hadn’t. The Consultant came in and asked me to go to her office. It was the news that i knew was coming, there was nothing else they could do for him, the dementia had taken over his body. So Mr Lewy Body had won. All they could do was to make him comfortable. You know what is going to happen , but it hits hard because the Dr has said it. So walking back from her office, tears in my eyes, but then trying not to be upset for Mum. She didn’t take it well which was very difficult.
So it was decided that Grandad would be sent home on the Gold standard framework in palliative care, basically to be looked after by the GP, carers and nurses. We had to wait for a hospital bed to arrive home, then on the day of discharge the carers would come on that afternoon. He was going to have 2 carers 4 times a day. This was going to something totally different for me, as the day before he went into hospital i was doing this job, but now because he cannot walk or do anything, we need extra help.
So the day arrived, 29th March. Before this day i had already said it was going to be difficult getting him in the bungalow, so when the ambulance arrived with a rigid trolley, i thought how are they going to get him around the corners. I followed in the car, on arriving home there was a lot of head scratching. The ambulance ladies said ” well, he will have to go back to hospital as we can’t get him in to the bedroom”. No way was he going back, not now we have him home. So the ambulance ladies turned a blind eye, and between us all we carried him with the use of the hospital blankets to the bedroom and into his bed. It was a very uncomfortable for Grandad but we got there. Finally he was settled.
The carers came in at 5pm, and we worked out when they were going to come and what was required. I had decided that i would feed him, so they would come 4 times a day to change him and make him comfortable. However, it became quite normal that as soon as they had driven away, Grandad would need changing again. This was very difficult on your own. He was eating a little better, maybe because it was home cooking with a little more taste. It would take him forever to eat and drink but at least he did. Medication also was now in liquid form, and if this was not possible we had to grind them down and mix with drinks.
I brought in the cd player and his cds. In the past he used to like listening to them with his headphones on, so now he had his favourite music playing in the background all day. There is a painting of Stirling Castle, which he painted on the bedroom wall behind him, but he could see it through the mirror opposite. He said he could see people in this painting, they were all people who are no longer with us. Also i found photos and photocopies of photos and put them on the wardrobe so he could look at them. They all had a meaning to him, they went through his life and family, and you would often see him looking at them. We will never know what he was thinking.
On the Friday of the May Bank Holiday weekend Grandad did not want anything to eat. I could not get him to have his medication, and was also struggling to get him to have a drink. So on the Saturday morning i telephoned 111 to ask their advice and they said they would send an ambulance. I told them we did not need an ambulance, as he was home on palliative care and would not be returning to hospital. After a while i was talking to a paramedic and i explained that we had a DNR in place so he said he would get a Doctor to come. By lunch time we had a Doctor and a nurse. After he checked Grandad out, reality hit. We were told he thought he only had around 24 to 36 hours left with us. I knew really, but like before, when a Doctor tells you this it all becomes very real. You know what i mean.
So there were people coming and going. Firstly a nurse came and put a syringe driver in to give morphine over a period of 24 hours. Then St Barnabas Nurses arrived. They gave him medication to make him comfortable. They were lovely and very dedicated.
So the bungalow is now full. Mum was sleeping in her chair, our Daughter had set up camp on the sofa, we had our bed, and my Brother slept in Mums bed in the bedroom with Grandad. Not much sleep was happening for any of us. Carers were still coming in to change him etc. Then it was decided that St Barnabas Nurses would take over the morning and lunch time shift.
Sunday evening was lovely, Grandads other Granddaughters came to join us and we were all in the bedroom, chatting to him, laughing and reminiscing with him. Although sad, as he couldn’t join in, he could hear us. He probably thought, “i wished they would shut up, and bugger off, i am trying to sleep”. It was a lovely evening.
So 36 hours had passed and Grandad was still with us. We spent all our time with him, talking to him, talking to ourselves, singing along to the cds. Myself and my daughter spent many hours serenading him with Vera Lynn, Harry Secombe and Katherine Jenkins. We all told him everyday he could go when he wanted, we would all be ok. He would squeeze our hands.
Mum was in denial, she kept say he was going to get better, so in the end i spoke to one of the nurses and she had a talk to her, it did help. None of us wanted Grandad to pass away, but Mr Lewy Body had taken him a long time ago. This was no life for him.
Marie Curie nurses come in for out of hours medical care, you call them as and when you think you need them. On a few occasions we called them, as he was agitated, they would come administer some more drugs to settle him. They were lovely, although very busy with such a wide area to cover, they had time for Grandad, and us.
Everyday, when the nurses came they could not believe he was still with us. Nearly 2 weeks had passed now, with no liquid at all. One of the nurses told us that sometimes, a person will not let go while family are in the room, as they don’t want their family to see them actually pass away.
The end was now close and everybody came to say goodbye. Our Grandson who is 3, came to give him a kiss and say bye Dur Dur. Well out of everything that had and was happening, that just did me, it was lovely, but so very upsetting. So innocent.
It was Wednesday 11th May and Grandad deteriorated more throughout the day. His breathing was different, laboured with long pauses between each breath. Marie Curie Nurses came during the evening, and said he will pass away tonight. Gradually his breathing became worse and at 2.15am he passed away. Mr Lewy Body had taken him.
Although we are heartbroken, we are grateful that the suffering has now ended for him and he is in a better place.
We called Marie Curie, they came to wash him and got him ready for the undertakers, with so much care and compassion. They said we could have as much time with him as we needed, before we call the undertakers.
It wasn’t time to laugh, but when the undertakers came at 4.00am, in walked this young man who looked about 12 years old wearing a jacket that was far too big for him. He shook our hands and said he was sorry for our loss. The other man was quite stocky build, and older. I suppose it doesn’t sound funny, but it did look funny.
We all sat around numb really, that’s the only way to describe how we were feeling. My Brother went out and put Grandad’s Union Jack flag at half mast. It remained at half mast until after the funeral. He was very proud of his flag, and it is still flying in the garden today. Not wanting to go to sleep, we all sat and had bacon sandwiches struggling to believe that Grandad is finally at rest.
The next days were spent sorting out the funeral. Which songs, readings etc. The day before Grandad passed away, the local pub opened again after a refurbishment, and because Nanny and Grandad were landlady and landlord there for 13 years, we had to arrange to have the food and drinks there after the crematorium. We decided on a wicker coffin with yellow ribbon. When Grandad was a boy, he used to make wicker baskets in Somerset with his Uncle. So when the undertaker was showing us different options, it jumped out at us and we had to choose the wicker.
The day of the funeral came 26th May 2017. The crematorium was full. As he had been a Auxiliary Coastguard in the past, his team, and his friends did a guard of honour. The British Legion whom he had been a member for many years, as well as being the welfare officer arranged for a bugler to play the last post. It was lovely but it had everybody in tears. The British Legion Standard was lowered at the end of the service. It was a lovely service that was not somber, it had humour, just how he would have wanted.
Then off to his last watering hole. All in all Grandad had a lovely send off. He would have loved it, the attention, people talking about him, telling their personal stories. It was also lovely for Mum, as she met people that she had not seen for years, and she was able to reminiscing with everybody.
So that is the end of Mr Lewy Body, he has taken my best friend, a man who was the heart of our family, a husband, our Dad and a brilliant Grandad. I feel like my right arm has been chopped off. My caring duties have not ended, as Mum needs looking after, more so now, because 6 weeks after Grandad passed away, she fell and broke her hip. She spent 8 weeks in hospital, but her mobility is not good , and is not safe to be left on her own, or even safe to go the bathroom on her own. She is not happy, and has had enough, i cant blame her. She has lost her husband of 60 years, she cannot get about, in pain, and although she has a loving family around her, she said its her time to go now.
Life is cruel.
I hope you have enjoyed my blog, and it has helped people and families in the same situation. Thank you.
Mr Lewy Body Update
Posted on: August 27, 2014
Well its been a while since my last blog, A Week with Mr Lewy Body. Thank you to all for your comments, good wishes to our family and to my followers.
So what’ s been happening, well, things are worse now. We still have the hallucinations, acting out the dreams, but now Grandad is very unhappy, It is a job to get him to answer us, he sleeps all the time, Except at night, then we are back to going to the toilet every 15 to 30 minutes. Also a very nasty Grandad, more than before. I can’t blame him, to be honest, what is there to be happy about ???
Going from a man who was so sociable, he would talk to everybody, always full of fun, to this. It is not much fun, for him, or the rest of the family. He has been a fireman, a bus driver, a lorry driver, the landlord of the local pub for 13 years. Then back to lorry driving and bus driving again, up to the age of 73 years old. He will be 88 in Oct, he has had health problems over the years with mini strokes, angina, prostrate problems ,then developed Parkinsons, but far worse is this Mr Lewy Body, because he has taken my Dad away, gone forever.
We had a visit from the dementia Dr about 2 months ago,” we have to get his sleeping pattern better ” he said, I thought oh yes thats a good idea . ” I think we will put him on Tamazepan every night.” the nice Dr said. Then a week later , the magic pill was prescribed. Night 1, when Grandad is trying to get out of bed to the toilet his legs did not work. It took forever to get back and forth from the toilet, as well as him talking more gobbly gouch than normal. Night 2 the 1st of 4 falls in the bedroom over a period 2 weeks. He falls very sedately, and doesn’t really hurt himself , the odd bruise or two. So after 2 weeks trying this tablet, I thought sod it, this is not working. Grandad is still getting up every 30 minutes, he can’t walk properly, he has fallen 4 times, and he is worse in the day time. Now i know these Doctors think all of this works in theory, but they are not here all the time and see it all in practice. So as you can imagine he does not have the tablet anymore.
Mum (aka Nanny ) is also getting worse, with her breathing. She has COPD, Chronic Obstrutive Pulmonary Disease, also has had 2 heart attacks 3 years ago. Her ateries are bad they could not put a stent in. She has now been told she only has a quarter of her heart working, and her lungs are struggling. She also has Osteo Arthritis of the spine, so mobility is very limited. Mum worries herself about Dad and vice versa. However, thank goodness I am here, as Nanny has no patience at all with Grandad. It is funny, but at the same time i could knock their heads together . All their married life they have been the same, but hey !! come on your old, and life is precious, don’t get me wrong they love and care for each other, its normal. I don’t think it will change. They cannot be left alone now as Nanny falls asleep all the time, and is liable to fall, and well Grandad, when not a sleep , there is no telling what he is doing.
Another thing that changed over the last month or so, he has taken to standing in the bedroom in the middle of the night and weeing, there are 2 problems with this, firstly I don’t want him weeing on the carpet, but secondly the dog doesn’t want him weeing on her either. No wonder she has taken to sleeping in the hall, out of the way. However this has all stopped now, thank goodness, we are back to normal, or what ever normal is. The dog still won’t sleep anywhere near though, don’t blame her. For a couple of weeks we were all choking on the smell of dettol, I suppose it could have been worse, we could have been choking on the other smell.
We now have a commode in the bedroom, but like anything new, it is taking some getting used to. For some reason he cannot sit on it in the middle of the night. We keep having practices in the day time, and that is fine, but he just cannot bend to sit down at night.??? We have gone through stages like not knowing how to go to the toilet. He would go to the bathroom, then come back and ask if he was doing it right. So now to save accidents, someone goes with him every time.
Another new thing happened today, I bought him some new slippers, well, you would think i had bought him boats, the way he is walking. You have to smile.
Over the summer we have taken him outside after tea, he has been supervising the garden, telling us to move that pot, put it over there, then put it back again. He hasn’t done much pottering in his greenhouse, he has been happy to sit and watch and supervise. I had bought some non alcohol beer, so we gave him a beer or two, he thinks it is real beer. Dad has always liked a beer or wine, but he cant have it now, so rather than saying no, and him getting in a strop, the non alcohol beer is the answer. On a couple of occasions, Grandad came back to us, talking about his past, the war, his lorry driving days etc. It was lovely, he can remember so much, it just takes a while to get it all out. I have to admit, after he had gone to bed, i found it very emotional. We have some fun evenings in the garden, he has a personal cd player, so i put a cd on, and he mumbles/sings along, then shouts to us “can you hear it, this is ……… ” He has been conducting to the meercat statue in the garden. This is funny as they are looking at him, and smiling. We also have a noisy teenager at the back of us, who like to put her music on loud, Grandad wanted to put on Vera Lynn and Harry Secombe to compete. He also asked one night if the hose pipe would reach over the fence, now that was funny. So he still has it sometimes.
Our Grandson still makes Grandad smile, which is lovely as this doesn’t happen that often. We have called Grandad Durr Durr, because that is what it sounded like when our Grandson was gurgling and pointing to him. So now he not only answers to Grandad, he answers to Durr Durr.
So getting ready for the next night shift, I can hear rummaging the drawers in the bedroom, the reason for this is we have a squirrel, who secretly eat chocolate before going to sleep. He thinks I don’t know, but he hides it under his hankies. We then have a drawer full of bits of chocolate, and this maid goes in and cleans it up.
Hope you like the update, as with my first blog, A week with Mr Lewy Body, the idea is to raise awareness to Lewy Body Dementia, and all the Dementias, please share this, to help others.
Thank you
Karen
Posted on: May 13, 2014
Look into the world of Dementia
A Week with Mr Lewy Body
Sunday Night.
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.
Monday
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.
Monday Night.
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.
Tuesday
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?
Tuesday Night.
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 !!!.
Wednesday
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.
Wednesday 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.
Thursday
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.
Thusday Night.
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.
Friday
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.
Friday Night.
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.
Saturday
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.
Saturday Night.
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.
Sunday
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,
Hudson House,
8 Albany Street,
Edinburgh,
EH1 3QB
Or Lewy Body and Parkinson Society as above.
Or
Alzheimer’s Society,
Freepost RRRL_JRJB-YCSX,
Devon House,
58, St Katherine’s Way,
London E1W 1LB
karart 