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


4 Responses to "Mr Lewy Body Update"

Our thoughts are with you Karen , I just cannot imagine him being grumpy and unhappy . Our memories of him are the chatterbox gentleman who always stopped for a chat and such a happy man with a lovely smile . Seems such a shame the dementia has taken that from him. He is so lucky to have such care and support from I imagine a very shattered you . We send our love and hope to get together at some point in the future . Take care and remember to look after yourself also . Much love Julie , Phil @ Wheatenhouse . Xx

Thank you Julie. Its hard, he is a very different man. Its very cruel. Would love to catch up. Hopefully these blogs will help others.
Love Karen xx

I love your dry way of covering that discomfort you must feel. Good content for me and those like me who feel like we are the only ones in the world coping with such.problems. Thank you.

Thank you Kate and sorry for the late reply. I will be writing another blog very soon, but it has been a difficult time for us, as Granddad passed away. He is at peace now . My next blog will be to tell the story, i hope it will not upset people, bu t i feel ready now to share it.
Thank you

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