Lewy body dementia blog 2016

Lewy body dementia blog.

Read our families Lewy body dementia blog which I started in May 2016 on what turned out to be Mum’s final birthday.

Final reflections for 2016.

Ours was a journey of roughly 7 years and there have been some very dark times, but there have also been some joyous times as well.

For me personally, the worst times were when Mum was at home, before we had a proper diagnosis, when we were struggling to deal with symptoms we simply didn’t understand. She also spent a spell in hospital, which was really grim, and finding a suitable care home was heartbreaking (read ‘Our Story’ for more details). But ironically Mum settled into the home we chose really well and to a degree, we got our old Mum back, rather than the one who was literally scared of her own shadow.

Mum was in the care home for just under 3 years and I have some lovely memories of that time. We used to go for walks around the local pond and for a coffee in the local café. And although Mum had her ‘off days’ generally it was a time filled with love and laughter.

We can pinpoint the beginning of the end of Mum’s journey to the 23rd June 2016, when Mum had some sort of brain incident (possibly a minor stroke). From there on it was one thing after another and Mum grew frailer by the week. Roughly 3 months later she passed and so in some respects we were lucky that we didn’t have years of virtual non-responsiveness as I know some families have to bear.

Mums illness profoundly changed not only my life but for me as a person. In her memory, I will try and make sure that the change is for the better and I will continue to raise awareness to try help other families going through this terrible journey. Because I truly believe that the more you understand the illness (particularly if you are dealing with one of the rarer types of dementia) then the easier you can make the journey for both you and your loved one.

Update – 06th October 2016.

The day of Mum’s funeral and it was a lovely sunny day which was nice. Mum opted for a non-religious service and was brought into ‘Here comes the sun’ by the Beatles. During the service, we played ‘Annie’s Song’ by John Denver, a song which is now likely to make me raw my eyes out every time I hear it for the rest of my life. She was then played out to ‘Every time we say goodbye’ by Ella Fitzgerald.

We had put together a lovely eulogy for Mum, stressing what a great Mum she was. I was very surprised to find that a lot of childhood friends of my sister and I, remembered Mum so fondly and so some of their comments and memories were also included in the service.

I am sorry to say that the vicar wasn’t very good and seemed to rush and stumble throughout the service, which was a shame but I think the warmth and affection that was felt for Mum came through which was the main thing.

In accordance with Mum’s wished we then all went to the pub and stayed there for the rest of the day.

23rd September – 26th September.

My sister arrived on the 23rd September and she had booked the following week off work to spend time with Mum. By now although Mum seemed fairly peaceful she had become almost completely unresponsive, unable to speak or move.

At the beginning of the weekend Mum’s breathing became more difficult and she seemed to have a lot of fluid/mucus in her throat. The nurse tried to ‘suction’ the mucus away to try and clear her chest and she was also given something that dries up secretions, which seemed to work.

Although Mum didn’t appear to be in pain or distress, she was totally dehydrated and even giving the oral care swabs was difficult because Mum would suck on them and then start chocking. So we were having to do it with a fairly dry swab and even then she kept clamping her mouth shut and refusing to open it.

Lewy body dementia final days
Oral swabs used to give mouth care to dementia patients who can no longer swallow.

Also the last few days she found it more and more difficult to breathe, which I know is common with dementia patients, and although I have read it isn’t distressing for them, I don’t know how we can know that.

Mum finally died at 16.44pm on the 26th September 2016. She actually first stopped breathing an hour earlier than that but then started again and for the next hour, she would stop breathing and then start again, gasping for breath which again I have been told is common in dementia patients.

So I would like to say that Mum had a peaceful death but I don’t think she did and I am now left feeling that we should have been able to do more. I don’t think we did enough to keep Mum hydrated and whilst I accept she couldn’t drink, I feel in hindsight we should have been giving the oral swabs more often and there is also a saliva spray that can be used, which we didn’t (it was mentioned but I was so distraught at that point I didn’t retain that information and only remembered when I was reflecting afterwards).

And while I also accept there is probably nothing that could be done about the breathing as such, a cancer patient because of the pain, would be given morphine which I believe allows them to quietly pass away. Because Mum didn’t appear to be in any pain, no medication could be given, but in my view gasping for breath and being totally dehydrated must be incredibly uncomfortable.

So while I now have to come to terms with Mums death, I also have to come to terms with those last few days, which will quite literally haunt my dreams forever as I wrestle with the fact that I should have done more to make her more comfortable.

Update – 13th September – 22nd September.

When I visited on the 13th September Mum was in bed and while she ate a little she was too tired to get up. Due to the how poorly she was we decided to take the van over and stay nearby for a few days and when I arrived on the 16th I asked the nurse how she was doing.

Although I knew she was very poorly, it still came as a shock to be told that her condition was critical and that we were probably now looking at a week or so before she died.

At this point, she was starting to struggle to swallow but was still taking a little thickened liquid and yoghurt. By the 21st September, she had stopped taking any food or drink.

Update – 09th September.

Since returning from hospital, Mum has spent much of her time in bed sleeping. She may get up for a couple of hours and  have a bit of lunch, but within a couple of hours she is asleep again. Her appetite is reasonably good, which is good news, but we are not seeing the usual bounce back like after previous illnesses.

To spend a bit of time with Mum, we took the caravan to near the care home on the 30th August – 04th September, which was lovely but this last week, she has become even more tired, and I now really do fear the worst.

Visiting tomorrow so really looking forward to that and may take the van over again in the next week or so, as time becomes even more precious.

Update – 27th August.

On Tuesday 23rd August we got a call from the care home to say they had found a lump in Mum’s stomach so she was taken to Scarborough hospital. It turned out to be a blocked bowel but due to her advanced dementia, they weren’t prepared to carry out any investigative work to find out why. The treatment they administered worked in emptying her bowels and she is now going to have to have regular treatment to keep the bowels moving.

Mum was in hospital overnight but she was so poorly she remained calm and wasn’t distressed whereas in the past a hospital visit would have caused a meltdown!!!!

The hospital staff were very good with Mum and they demonstrated their commitment to being dementia friendly.

Caregivers story
Scarborough hospitals Dementia Friendly signage.

Mum is back ‘home’ now but her condition has taken another step downwards and I now spend most of my time dreading a call from the home with more bad news.

Update – 19th August.

Last week when Mum was a bit groggy with her chest infection, her friend June, who also has dementia, kept bringing her teddy bears and apples from a tree in the secured garden to help with her recovery. Didn’t like to tell her that Mum can only eat relatively soft foods these days.

Lewy body dementia blog

Had a reasonably good week this week. Still very tired and unsteady on her feet but we did manage a little walk today. Even managed a session with the chiropodist, although Mum wasn’t overly happy about it!!!!!

Update – 12th August.

Back from our trip to stay near Mum’s care home. We originally intended to stay for 3 nights between 03th – 06th August and everything was going ok. I visited Mum on the 05th August in the morning and we did the usual routine but when I called back at tea-time she was totally uncoordinated and could hardly sit up on her own. We put it down to tiredness and she went to bed but when I called in on Saturday morning I could tell straight away that something had happened (I suspected another mini stroke). She couldn’t speak, focus and there was no chance at all that she could get out of bed.

A doctor was called who agreed it looked like some sort of brain incident had occurred and it was also established that she had a chest infection and was put on a course of antibiotics.

So I stayed an extra week until the 12th August and yet again Mum performed another miraculous comeback. Again she is weaker than before and now really struggles to get up or walk unaided but she is back talking, eating well and other than mobility, is back to how she was before.

So we will never know whether there was another brain incident or it was the chest infection that completely knocked her off her feet, but for now, we are again over the worst.

Update – 01st August.

Although Mum improved much better than we could have hoped for from the incident that happened in June (see update 01st July), she is still very shaky on her feet and very tired and I suspect this is the new ‘norm’.

A usual visit now goes – I arrive around 11 o’clock to find her still in bed. I get her up and dressed and we go for a little walk around (she needs a lot of support). At 12.30 pm we have lunch and by 1.30 pm she is asleep again.

She needs a lot of support over lunch as well and the biggest worry now is that when there is no family member present she doesn’t eat or drink enough or she has a fall.

So I am going to stay in a caravan near the care home where she lives for a few days to spend some time with her and build up her strength.

Update – 19th July.

Mum has had a shaky week or so. She seems to be very tired and unsteady on her feet again. Last Tue (12th) she had a fall and because she grazed her head and was bleeding slightly she was taken to hospital. This is an unbelievably traumatic experience for Mum (who hated doctors and dentists before she got ill) and she is so terrified she starts to become very aggressive, so it is a stressful and upsetting experience for everyone involved.

Today’s visit also had a shaky start. It took me 3 hours to get there (usually takes an hour and a quarter) and I arrived at 12 pm to find her in bed, soaking wet (which seems to happen more and more often). She didn’t need much encouragement to get up (as though she was waiting for someone to help her) and I soon had her up and dressed. We then spent a lovely hour or so in the garden, had some lunch and discussed the flowers (well my half of the conversation was about flowers anyway!). She then tired again so we found a comfy chair and she went off to sleep again.

But over 4 hours in the car, in 31-degree heat – the hottest day of the year so far, was worth it for that hour in the garden.

Lewy body journal

Update – 08th July.

Mum continues to improve and I was telling her today that she was a legend. This seemed to upset her a bit so I explained that it meant that she was amazing and was loved by everyone which seemed to make her happy.

A little later one of the carer’s asked how she was and she said “I’m fine because I’m a leg-end” – Bless!!!

LBD stories
Mum was in a giddy mood today.

For some reason a lot of the other residents at the home where Mum lives seem to congregate in her room and today when we returned after a walk there were 3 of them all planning their escape through the window. I didn’t have the heart to tell them it only opens 2 inches.

Update – 01st July.

Mum seems to have been a bit out of sorts of late, really tired and unsteady on her feet. It was finally established that she had a urine infection and some changes have been made to her medication which could explain why.

Then week comm 20th June there was a dramatic decline in her health and by the 23rd she was having fits. The care home rang to update me and the whole family rushed to her bedside. We were told that she had probably had some kind of brain incident probably a stroke or a brain bleed.

We were then asked whether Mum should:
a) Be admitted to hospital for a brain scan, which would be highly distressing, to establish what has happened. Even though it is likely that little could be done as no surgeon would agree to operate on someone with such advanced dementia.
b) Leave her in the home which is familiar to her where she can be kept comfortable and pain-free. Even though, while she may rally for a while, the likelihood is that she will die.

We chose option b and fully expected the worse. By this stage, Mum couldn’t swallow properly, couldn’t focus or speak. She certainly couldn’t get out of bed.

Imagine our surprise when each day she started to improve and within a week she was eating solid food, speech and focus back to normal and she was even walking albeit a bit wobbly.

It is now a fortnight since the day we were told she was probably going to die and it is almost as if nothing had happened. The doctors now think that it could have been a seizure as a result of the change in medication or it could indeed have been some sort of brain incident but whatever it was we are just grateful that for now at least we have our Mum back.

Update – 28th May.

28th May is Mum’s birthday. The week before her birthday Mum had been particularly tired, confused and unsteady on her feet (which we eventually discovered was down to a change in medication). Therefore we were not hopeful when we arrived with her presents, expecting her to be in bed. However Mum was in particularly good form, she was up and dressed when we arrived and seemed pretty ‘with it’. We had a lovely day and she even managed a glass of birthday bubbly.

LBD Blog
Our final birthday with Mum. She was 74 years old.

I always cherish special memories like this as Mum’s condition progresses as you can’t help thinking that this may be the last birthday we share.

Blog updates.

I am starting a weekly blog to update on how Mum is doing and as a record of how her condition is progressing. I will highlight anything that arises which I think may be of particular help to others.

My mission to raise awareness.

From when Mum first got ill right until she settled into the care home was a highly stressful time for all of us, and just getting through the day was an achievement.

Throughout this time I learnt a lot about dementia in general but in particular about Dementia with Lewy bodies (DLB) which is the type Mum has. Once things had settled down and I started reflecting on everything that had happened I came to realise how little I had known about dementia in general but in particular DLB. I also came to the realisation that had we been better informed we could have cared for Mum better and maybe kept her at home a little longer.

It was this realisation that drove me to start a Facebook Page and this website with the 3 main objectives of:

  • Raising awareness.
  • Reducing stigma.
  • Promoting a dementia friendly society.


It was probably around 2009 that we first noticed that something was amiss with Mum. It wasn’t issues with her memory particularly and we didn’t immediately think it might be dementia, she wasn’t depressed as such she just seemed vague and disassociated.

I noticed it because that year was my 40th birthday and Mum would normally have made a fuss and arranged something like a meal out and a special present as a keepsake. However she did neither, she did tell me to go and buy something and she would give me the money as though she knew it was a special birthday but couldn’t cope with the arrangements. Then on my birthday, I called in on my way to the pub. When I asked her if she wanted to join us she said she had better not as Steve (my stepfather) had some jobs to do and she better stay and help him. This was completely out of character and sticks in my mind as the point when I personally realised something was wrong.

Her condition seemed to deteriorate quickly and by 2010 it was obvious something was wrong and we were thinking it might be dementia.

We got a diagnosis in 2012 and by August 2013 Mum was so ill she was hospitalised. In December 2013 she moved to a care home where she still lives today.

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