Dementia again

[Texaco Shirley]

Thanks Marth, I’ll have a read.

I have looked at the Alzheimer’s Society website, there’s an awful lot of info on there. I hadn’t realised there was a forum, I’ll look into that.

[Zoomer]

Tex, you poor thing. This must be so stressful for you.

Are you not considering putting her in a home because she doesn't want to, or have I missed something ?

I arranged for my aunt/godmother, who has dementia, to go into a home the last time I was back in Ireland in August. She was adamant she didn't want to, but in the end we had no choice as my uncle couldn't take care of her and she had no children of her own. Anyway, my Dad was telling me earlier that she's in great form, happy as larry, and apparently thinks she's in a hotel abroad somewhere.

I'm not sure why I'm telling you that. Oh yes, just in case you do decide that she can't stay at home anymore. Sorry, brain fart probably.

[Texaco Shirley]

My mum this evening was very worried because my dad had gone out this morning and still wasn’t back. Someone (possibly me) might have gone with him. I had no idea what to say.

It's so hard, Tex. With my grandma I used to make non committal noises about how that must have bene stressful etc, and then try and distract to something else if she seemed a bit fixated on a subject (like waiting for her dad to come and get her)

That’s my usual approach but I’m worried she might go out looking for him. On the other hand I didn’t want to tell her he was dead over the phone in case it came as a shock.

We had some lovely Dementia training for carers where I used to work and I sat in on some sessions. One part really stuck with me. I'll try and find it.

Thank you.

I do sympathise. It is so difficult knowing what to say. My grandma used to go out and look for her dad. She would pack all her things and wait for him. I would just say, "It's ok, he's be back, don't worry, he'll be back" , Sometimes it would work, but sometimes she would remain anxious.

My mum is starting to show signs and I feel nothing but overwhelming anxiety about it.

It's the bookcase analogy. This does go on a bit, but I found it quite comforting in a strange way, that it was ok to be in their world (obviously not practical all the time)

https://dementiapartnerships.com/resour ... e-analogy/

Bizarrely Gemma Jones who is credited with devising the bookcase analogy is my colleague’s wife.

[Texaco Shirley]

Tex, you poor thing. This must be so stressful for you.

Are you not considering putting her in a home because she doesn't want to, or have I missed something ?

I arranged for my aunt/godmother, who has dementia, to go into a home the last time I was back in Ireland in August. She was adamant she didn't want to, but in the end we had no choice as my uncle couldn't take care of her and she had no children of her own. Anyway, my Dad was telling me earlier that she's in great form, happy as larry, and apparently thinks she's in a hotel abroad somewhere.

I'm not sure why I'm telling you that. Oh yes, just in case you do decide that she can't stay at home anymore. Sorry, brain fart probably.

We are going backwards and forwards with residential care. The pros are obvious but everyone is concerned that she might really go downhill if she has to live somewhere unfamiliar plus her physical health is really quite good for her age so she’s out and about walking every day. She’s lived in the same house since 1964 so we’re not currently concerned about her getting lost. The plan at the moment is daily carers so she can stay at home but I have little faith in the council service. I’ve been recommended a local private care company so I’m going to email them in a minute.

[Marth]

It's so hard, Tex. With my grandma I used to make non committal noises about how that must have bene stressful etc, and then try and distract to something else if she seemed a bit fixated on a subject (like waiting for her dad to come and get her)

That’s my usual approach but I’m worried she might go out looking for him. On the other hand I didn’t want to tell her he was dead over the phone in case it came as a shock.

We had some lovely Dementia training for carers where I used to work and I sat in on some sessions. One part really stuck with me. I'll try and find it.

Thank you.

I do sympathise. It is so difficult knowing what to say. My grandma used to go out and look for her dad. She would pack all her things and wait for him. I would just say, "It's ok, he's be back, don't worry, he'll be back" , Sometimes it would work, but sometimes she would remain anxious.

My mum is starting to show signs and I feel nothing but overwhelming anxiety about it.

It's the bookcase analogy. This does go on a bit, but I found it quite comforting in a strange way, that it was ok to be in their world (obviously not practical all the time)

https://dementiapartnerships.com/resour ... e-analogy/

Bizarrely Gemma Jones who is credited with devising the bookcase analogy is my colleague’s wife.

How weird, Tex

[Zoomer]

We thought the unfamiliar thing might be a problem for my aunt as well, but her dementia seems to be working with us there, luckily. My aunt wouldn't go out walking, though, so that's a big difference, and I can see why you'd want your Mum to be able to do that for as long as possible. I hope the private company are helpful.

[Marth]

I hope they are helpful too. There's also a lot of tech that can help as well, such as reminders for people, prompts to lock the door, as well as more simple things like clocks that display the day as well as the time etc etc

[Texaco Shirley]

She has a clock about the size of an iPad which shows the date, time and time of day e.g. Monday morning but she doesn’t really trust it.

[Marth]

She has a clock about the size of an iPad which shows the date, time and time of day e.g. Monday morning but she doesn’t really trust it.

I can't imagine what that must feel like, so feel unsure about what is what.

[Texaco Shirley]

I imagine it must feel like being in a fog all the time.

[Loralei]

It's the bookcase analogy. This does go on a bit, but I found it quite comforting in a strange way, that it was ok to be in their world (obviously not practical all the time)

Everyone who volunteers at our local hospital has to do dementia training, even those who.work at opposite ends of the spectrum (like me in NICU) and I found the bookcase analogy really humanising. How funny about the author, too.

When my dad was ill I found the difference between the council and private carers marked. I suppose the latter are invested in keeping your custom but they made a real effort to connect with my dad, and we were able to assign time for them to just chat to him.

Have you considered a video doorbell? We got my dad's because of the suspected stealing, but it was useful for checking people were coming and going when they said, and also picked up on how confused he was becoming (hobbling to a neighbour's in the middle of the night because he got freaked out). Because it was outside, Dad didn't feel spied on (he had access to it as the primary user and I was an additional.) I realise it might have the opposite effect in your case, as you may worry every time she goes out, but thought it worth a mention. (Ring ones are heavily discounted at Amazon at the moment.)

[Texaco Shirley]

I’ve thought about a video doorbell, as much to check if/when the Carers are coming in as anything.

[Mountain Goat]

That bookcase theory is excellent, and touched on something I wanted to say - but I might not express it well because it's not as thought out as an actual theory. But the point she makes about the facts being forgotten and not the emotions is important. If your mum is upset/angry/frustrated about something that makes no sense like your dad not coming home, you should absolutely agree and distract (rather than correct) with the facts but it's also useful to remember that the emotions she has around this scenario are real, and it's good if you can try to find a way to work through them. So maybe there's a (preferably amusing/pleasant or at least not traumatic!) story from way back where your dad was late home that you could bring up. If that's an era she remembers well she will feel safe in that memory and also feel sure of herself and her right to righteous anger, and she'll be in a memory where she's confident and knows that all is well. So she gets out a bit of frustration having a good moan about him, her emotions get validated (especially useful if she's aware of not being quite herself and that people might think she's being silly) and also shifts away from the world where things are a bit wrong into one where she's damn sure she's right, and she's back in control. That might not be what your mum needs, but just an example.

ETA: with my dad you could do this so easily by suggesting that someone had been stuck in traffic in the new* one way system in the town centre and then he'd be right off, no longer worried about whoever was late but instead on his soapbox, emoting with absolute certainty about the idiocy of town planners, and happy as Larry with something simple to be cross about.

* new in about 1973

[Texaco Shirley]

Thank you all, it is helpful to try to work out a strategy. I was a bit wrong footed on the phone and not really sure if the best (least likely to be traumatic) approach. Part of the problem I often have is knowing who or what she is talking about which makes diversionary tactics difficult but sometimes I can get there from context.

[Loralei]

It's also really difficult to do this stuff on the fly. It's not as if you can predict what your loved one will come out with next. I hope it gets easier with practice and that it becomes part of your mum's verbal routine, too.

[Texaco Shirley]

Seeing dead people is a relatively new occurrence. Up until a couple of weeks ago she’d mention e.g. one of her brothers and if I queried it she would realise it couldn’t have been him. She also now seems to be able to operate in 2 different timelines simultaneously. When I spoke to her a couple of days ago she implied there was someone else there for tea and when I asked who it was she called to me in the other room at her house to check.

[Texaco Shirley]

Another brain dump, it’s useful to use this thread as a diary.

Today she seems to have entirely forgotten to be worried about my dad. She was however hoping that “they” would get there soon so they could all go back this evening. She’s really looking forward to going home as she misses being in London. I’m not entirely sure where or when she thinks she is but presumably pre 1964.

[FiveO'Clock]

I'm sorry, Tex. My grandmother went through all of what you've described and it was heartbreaking to witness. I hope you're looking after yourself. x

[rosy]

I’m sorry, Tex, this must be very hard.

[Texaco Shirley]

Today was trickier. She sounded really down when I phoned and said it was all ridiculous and she wasn’t talking about it any more. It turned out “they hadn’t spoken to her all day and it was weird and silent”. I don’t know who she thought was there (apart from me).

Her link worker thinks this sudden delirium is likely related to an infection and is going to do a medical review with their nurse practitioner and call me back first thing.