🪳 🪳 🪳 Cockroach Café Late Summer 2024

We've started the dreaded C conversation as well. 2 years ago I picked mum up in the morning and took her home Boxing Day but she struggled with our stairs and being away from home overnight disoriented her. So last year we did both trips Christmas Day but that leant 2 2 hour round trips and we were shattered. So this year we are thinking of going to hers and trying to cook something nice on her limited facilities - she hates cooking and only has a hob and microwave and then having a special dinner with DS1 and his partner another day. But partner has just taken a job in Retail so will probably be working Boxing Day. And it means we have to take 2 lively dogs to mum's small bungalow. No chance either of my brothers will step up.

Thanks everyone, interesting to hear examples of others who withdraw from previous interests as they decline. I suspect I’m bothered as a displacement worry about her general progression. As I said, she seems content enough.

On a side conversation, DH and I had a chat this evening about what we’re doing at Christmas. This is the first one since MIL died - for years we’ve spent C-day apart as our mothers lived hundreds of miles in opposite directions and would have been alone if we weren’t with them. Long story short, our tentative plan is to have our very first C-Day at home together and then I visit mum on Boxing Day. Last year she barely registered what the day was, wouldn’t get up to join DB and I for the meal - and she was far better than she is now. The logic is that she wouldn’t get anything out of me being there (DB won’t be able to be there this year). I still have that lingering worry of what if it’s her last Christmas, but I have to tell myself that she’ll never have the Christmas I want her to have ever again anyway. And after a decade since our last Christmas under the same roof and the first since he lost his mum, DH deserves better than a meal in mums grubby dining room with the flood damage and hole in the ceiling, while I dash up and down the stairs.

My Auntie was a bit like this @funnelfan . At home she had Radio Wales on all day and was genuinely interested in all the local news. When she had long spells in hospital I got her a digital Robert’s Radio but she just didn’t use it. I think by then she had lost the concept and couldn’t work it. The TV was often on but I think that was more of a default from the staff turning it on rather than her asking for it. It is sad to see someone losing agency over things they once enjoyed.

That’s really interesting @Choconuttolata FIL has the tv and/or radio blaring out all day, which might not be best for MIL.

I think everyone is individual in their needs and the way dementia progresses for them @funnelfan

I definitely noticed with my Aunt that she withdrew more and spent more time sleeping in silence without the TV on towards the end whereas she had it on all day previously.

This is quite a good article talking about noise, music and dementia.

avenueis.com.au/noise-and-dementia-patients/

I see what you mean. I’m well versed in “do you want ham or chicken in your sandwich?” rather than “do you want some lunch?” as she’s never hungry. I do want her to feel like she does have some agency over her life, and as such I do ask her if she’d like the radio on rather than the telly but she always chooses the telly.

i think she’d be better off with the radio as I think the voices on the telly disturb her snoozing dreams and she gets auditory hallucinations and even more confused. Plus Friday nights are horror nights on TPTV which doesn’t help!

It’s possible that I’m seeing the loss of music appreciation as part of “losing mum”, and it’s a mistaken assumption about dementia that liking of music is one of the last things to go. She’s declining but she still knows who I am and where she is. And appears content enough, so I should probably just accept that and let it go.

@funnelfan i don’t know, this isn’t a bridge we’ve crossed, but it might be worth leaving the radio on when you leave (don’t ask her if she wants it left on) and maybe spy through a window to see if it’s visibly agitating her? I’m thinking in the way you ask a person with dementia if they’re hungry and they say no but then (our experience) wolf food you put in front of them. Maybe she doesn’t know she wants it, if that makes sense?

Just pondering something and wondered if anyone else had experience and could shed light.

Mum used to be an avid radio listener. It was always on. Even my baby photos have the old Roberts radio in the background. Radio 3 and then Classics FM in more recent years. Now she doesn’t want the radio on at all. I had always thought that music appreciation was one of the remaining enjoyable experiences for people with dementia, eg the Dementia Choir.

She has the tv on 24 hours on Talking Pictures. She used to like the old films but these days I think it’s just noise/company as she doesn’t engage any more when I chat about the plot/actors, like she used to.

In anyone else I might think depression, but she says she’s not depressed or sad or fed up. Just not interested when I offer to put it on. When she was in hospital 18 months ago I took in a radio and played Classics FM while I was there, and she said how much she enjoyed listening, but then when I left she didn’t want it left on.

Any ideas? I think I’m struggling with this as her love of music was a core part of her identity. She lies in bed snoozing through the day and I’d like her quality of life to be the best we can make it. Could it be that the dementia has progressed to destroying that part of mums brain that enjoys music?

@MereDintofPandiculation I’ve been down a rabbit hole now of the bamboo pill boxes - had to know and they are smart!

Oh the irony of all the living aids (including pill boxes) I’ve unearthed from piles at DF’s house - all the intentions were there but it’s no help if they stay in the boxes!

This is a very good point. I'm a gardener and have always had a lot of older customers. I've usually got a contact number for other family members and many times I've notified daughters ( and it's always daughters) that something isn't quite right. I've gotten rid of dodgy door knockers before now,and also had to get a family member to break in when my customer failed to answer the door. That turned out because was collapsed in the hallway with the door locked. Luckily she was ok after a hospital stay.

I like my elderly customers,quite often it's less about doing the garden,than having someone come in on a regular basis to have a chat and a cup of tea with them. If that makes them happy,so be it.

@PermanentTemporary has nailed it, the short version is DO NOT say it’s fine we’re coping/ we can do it/ it’s not that bad. They’re looking to be able to tick the ‘family rallies round’ box so they can back away and save their funding,

Yes, she just takes 3 pills, first thing so I put them in one of those boxes for each day every Friday. Shit, that reminds me I’ll have to go and sort that later! One of them is Levothyroxine which she’s been taking for 30 years so she’s good at remembering that.

The medication is a huge deal. It's what we spend a lot of time on in the stroke team. When you say set them out, have you bought a nomad box to put them in?

It all shows what a huge amount of unpaid, unconsidered support is going on, every day, for people who apparently are living independently 💐

God, that’s brilliant @PermanentTemporary. I wouldn’t have thought of doing that. The bottom line is that many of those things wouldn’t happen if not for us so I guess we need to let them know, eg the pills . I set them out once a week, she takes them first thing and is good about remembering. So far. I’ll get on to doing that later.

@BestIsWest I'm not an expert, though I do work for a stroke team so refer people to SS quite often. I guess I would suggest taking a piece of paper and imagining a day in the life of your DM without any support at all. So, she wakes up (does she have a sense of time?) has a wash, dresses herself (can she do this or have you had to remove clothes that she can't manage? Does she recognise if clothes are clean or dirty?) comes downstairs ( is it risky? Does she remember to turn lights on, wear her glasses? Would she replace worn out slippers and if so how, or woukd you do it?) makes breakfast (can she do this herself? Do you think it's risky? Do you prompt her to eat with a phone call, Alexa reminder etc? Does she finish her food and drink, or makes tea and leaves it undrunk?) Takes pills (can she manage this herself? Are you reminding her?)

Go on through the day, visualising her at home, working out what she would still do OK with, what you give support with, whether or not you are happy to do this long term. Identify the red flag areas you are worried about.

Wishing strength to @BestIsWest @user14541775 and @Newmum738.

Welcome back @funnelfan we missed you - sorry you’re back into the fray of visits though and thank you for the reminder to always put our own health first.

I’m full of germs so can’t visit DF (in nursing home) but am doing the unseen support of chasing social care about funding and all the PoA paperwork (never ends), also have a medical appointment to transport to and from next week. But also incredibly hopeful about an offer for DF’s millstone of a house.

Thank you for this wisdom (I think from @PermanentTemporary) - the training to be frugal about anything you could do yourself was lifelong for them and it doesn't change easily - it is a good point and I am really trying to be understanding but for DF this manifested in a DIY and self sufficiency shopping addiction.

This time last year DM was referred to Social services by her GP after a fall (typically during the only five days I was away on holiday last year). Anyway Soclal Services got in touch yesterday and we finally have a WhatsApp video call on Monday with them to do the assessment. I guess it’s to see if she’s fit to stay at home and whether she needs carers in but I’m not really sure.

She’s got Alzheimer’s and poor mobility but just about copes so long as DB and I shop and clean for her . Any ideas what I should expect or ask? My biggest concern is her diet. I don’t think she eats enough and we can’t be there every mealtime.

Another newbie joining 🙁off to see darling mummy in her nursing home. It'll be nice to give her the chance to tell me I want her dead, am trying to steal her money, am disgusting, a bitch, am evil, a witch, etc to my face instead of on the phone. "aw hun but she's your muuuum bless"

@Newmum738 I get the burnout and endless solo decision making. You have an awful lot on your plate, it's no wonder it's affecting you. I hope you can get SW to help.

Hello everyone, have been on holiday abroad for the first time in two years and managed the whole week without a phone call from or about mum. Had a lovely time, put on half a stone without trying, oops. Just gearing up to drive over for usual mum duties and the anxiety is back, think I’m going to have to ask the GP whether I need to increase the dose of sertraline as the effects seem to be wearing off.

@Newmum738 welcome, have you seen your gp? I suffer with physical symptoms of my stress too and gave in to medication after resisting the idea for a while. It does help.

Sending sympathy. Hope S Services can help.

@MotherOfCatBoy it will be made redundant. I could apply for other things but I'm not going to. They are offering for me to go early if I want that. I feel like you say, that it's an opportunity to take some time out and get things sorted in particular get myself well!

Hi @Newmum738 is your job inevitably going to go - just a question of time? If so taking the redundancy now might give you exactly the breathing space you need, even though it might be painful to let it go. (I’d say differently if the role weren’t slated for redundancy- I’d be advising you to access all the help your employer can give you and make sure HR can support you). You could spend a bit of time sorting your Mum and then go back on the market with a clear head and a valid reason for a gap.