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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.

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