How usual is this?

[Metalpetal]

Ok, so I'm scarily new to the surreal and upsetting world of dementia and have a lot to get up to speed on. I wondered if I could mention something about Mum and get your views as to whether this is typical or not? We're still waiting any specific diagnosis for her - at the moment it's just an umbrella 'dementia' diagnosis and I wondered if this is perhaps particularly typical of one type than another?...

Mum has good and bad days - some she's lucid for maybe 70% of our conversation, other times it's perhaps only 20 or 30%. But the one thing that seems fairly constant (even when she's conversing lucidly) is that she always thinks she's somewhere she's not. That can range from being on a train that's been stranded in the snow for 4 days, to an office that she used to work in, her old friend's house (who she's not been in touch with for years) - and yesterday it was a police station in Edinburgh where she thought she was working. She talks about it very matter of factly, and as I say it's very rare that she clearly and soundly acknowledges she's in hospital.

These 'other locations' do mingle with reality though. On Wednesday she was telling me that she almost didn't come in to work that day, as there's very little for her to do. But she thought she should make the effort as the Doctor would be in today. Which was true - her Consultant does rounds on a Wednesday. So it's not all completely made up.

Does this sound typical of a PWD? Is it more typical of one type of dementia than another? I'm not sure why I'm asking really - I'm just wondering if this is something we should be particularly worried about. I do wonder if this might be why the hospital keep saying that she could be a 'wander risk'. After all, if she goes home and thinks she's elsewhere - will she leave the house to 'go home'?

Any views much appreciated, thanks in advance.

 

[Lemondrizzle]

My MIL did this. Being in hospital/unwell can cause all sorts of issues with dementia as well but my MIL regularly thought she was at work/had to go to work/had work to do at "home". She was a wander risk although was looking for her friend on the occasions she went walkabout. She went through a spell where she would fret that she hadnt let work know she wasn't going in if she had visitors and therefore was at home with them.

 

[Metalpetal]

Hi @Lemondrizzle - We’ve only known she has dementia since she’s been in hospital - It’s come on very suddenly.... so there’s no ‘norm’ really. Do you mind me asking what type of dementia your MIL has?

 

[Lemondrizzle]

My MIL had Alzheimers. It sounds as though your mum being in hospital has exacerbated her dementia (as it does) bringing it to the fore. My MIL was awful in hospital, completely unaware of what her surroundings were, pulling out her canula and not understanding why she had to sleep in a room with other people.

When she came home she didn't know where she was. Although there were obviously ingrained memories. She was brought home by a volunteer from AgeUK as my OH and I were at work when she was discharged. I was at her house by the time she got home and I saw her directing the lady to her house. She walked in and hung her coat in the cupboard. Other than that she had no idea where she was. She had gone into hospital managing at home alone with support and came out clueless. There is no doubt that being in hospital threw up more enhanced displays of dementia even though we knew there was a problem before she went in. She did settle back down although required carers from that time on.

 

[canary]

This confusion of time and location is absolutely typical of all types of dementia (although it tends to come on at a much later stage with FTD), so it wont tell you much about which type of dementia it is, Im afraid.

When talking to her, you just have to go with the flow. I hate that expression, but it does describe how you have to approach it. I found I made lots of neutral comments when mum was saying things like that.

And yes, it was at this stage, when mum didnt really know where she was, that she started wandering outside in the night, very inadequately dressed and getting lost.

 

[lemonbalm]

My mum's reality seems to change every day. She has vascular dementia (probably, she has never been able to complete any tests but had a brain scan after her last stoke). Mum is in a care home now but in her mind she can be anywhere from a pub to a prison camp. I think this is fairly common. Mum is massively more confused in a hospital environment, so you may not have a clear view of how your mum is while she is in hospital.

 

[Banjomansmate]

Whilst in hospital The Banjoman was, amongst other places, on a cruise ship, on a train (with very detailed account of working on the railways despite spending his life working in hospitality) and in a zoo, seeing penguins and all sorts of other animals. He had Lewy Body Dementia so hallucinations weren’t unusual. Thankfully he was rarely bothered (frightened) by them.

 

[Metalpetal]

Thanks for your replies @Banjomansmate @lemonbalm @canary @Lemondrizzle - I shall remain hopeful that these hallucinations (or are they confabulations?!) are heightened at the moment due to her being in hospital. And that she’ll settle a bit more once home. Although, that said, she was experiencing this before she went in to hospital - albeit not as constantly...that was one of the scary symptoms that made me push her GP to take us seriously and go and visit her!!! Thank goodness I managed to convince him.

It’s easy to be worried about her coming home and how she’ll cope, but I must remember that only 5 short weeks ago we were in such a state worrying about what on earth was wrong with her, and frustrated that nobody was taking it seriously. At least by the time she leaves she’ll have a care package in place, adjustments in her home to make it easier to get around, and a fall/personal alarm. Plus, the very important matter of now being firmly in the medical system as someone with dementia. They can’t keep brushing her off now. So things are much better in some ways.

 

[lemonbalm]

You sound to have done a really good job @Metalpetal . Let us know how things go.

 

[Sirena]

Yes it's great she is in the system now, and will have a care package.

You are right to mention confabulations. The PWD basically 'fills the gap' with a story to try to make sense of what's happening. They may hear someone else talking about something, or see it on TV, and it becomes their reality. My friend's father became an expert on Australia and told people stories about his time there - he'd never been.

I haven't ever noticed my mother not being sure about 'where she was' but her language skills deteriorated relatively early so she possibly couldn't express it effectively. Shortly before she moved to the care home, she became unable to remember which room was which in the small flat where she'd lived for over 40 years. The carers had to put post it notes on the doors with the name of each room.

She did once think I was her sister when I visited the care home. She never had a sister. I think I looked familiar so she 'made up a story' about who I could be.