Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

Hi, i'm a newbie on this thread, but would appreciate people's thoughts.

My mum (94) has had a brief spell in a care home, which she hated and has insisted on going home. In the end, my siblings and i agreed, on the condition that she has carers coming in at each end of the day, to give her her medications and make sure she's ok.

But, what can we get them to usefully do, when they're there. The house is messy, but they can't deal with mum's clutter. So that just leaves cleaning the bathrooms, which can only be done so many times.

In this situation, as they have to go in, what else can they do?

@CrazyGoatLady
Thanks!
I'm ferrying dd around today, then a few errands.
I'm meeting a friend tomorrow morning for coffee ☕️
I might go and see mum on Friday morning then thats my weekly visit done ✔️

@Sausagenbacon what problems triggered trying out a care home?

She wasn't well and was taken into a and e, then discharged too early. We are live at a distance (over 100 miles away) so decided to put her in a CH for a couple of weeks so that we could prepare the house for a live in 24 hour carer.
However, that didn't get done because we were dealing with mum hating being in the CH, even for a short period.
So we've upped the care.

@Sausagenbacon what is the length of the visit? Giving medication only takes 5 mins so potentially the other 25 mins (or more) could be used for an:
washing dirty dishes, wiping down kitchen surfaces
emptying bins
checking fridge and adding items needed to a shopping list
making drink and bedtime snack for your mum
helping her into night clothes
folding laundry and putting it away

and most importantly providing her with company. If your mum likes the carers and has a 20 minute cup of tea and chat with them it’s money well spent.

I totally get this. Yesterday i couldn't visit DER in his care home as I had some bug, probably Covid. I left messages but still he phoned to tell me he felt abandoned. I seriously thought of going, but last time the care home had a sickness bug they locked down for six weeks and it was pure hell. One emotion fights another.
I work parttime, could go full time but then it would be harder to help DER. So my own family gets much less income. Who should have my time? And when I'm old, who's going to pay for my care?
I don't feel like i've shut my emotions down, it's more like shuffling a pack of cards: who shall I neglect today?

God @ThunderFog ‘who shall I neglect today’ really resonates 💐

what is the length of the visit? Giving medication only takes 5 mins so potentially the other 25 mins (or more) could be used for an:
washing dirty dishes, wiping down kitchen surfaces
emptying bins
checking fridge and adding items needed to a shopping list
making drink and bedtime snack for your mum
helping her into night clothes
folding laundry and putting it away
and most importantly providing her with company. If your mum likes the carers and has a 20 minute cup of tea and chat with them it’s money well spent.

Thank you, that's helpful.
The thing is that she doesn't want carers, and thinks they're a waste of money. But she has to have them.

My mother is exactly like this with the heating too. It's forced and fake fuel poverty because I cover a lot of the fuel costs. The house is often freezing. Not only that her only idea of home maintaince is window ventilation and leaving the windows open all day. It's so so hard in the winter time. She sparing on the fuel costs. She won't even turn on the heating for an hour in the evenings.

Regarding other energy use, she has no comprehension. She has some idea and she wants to monitor my energy use but never never never never never hers. When a bill comes that she doesn't like, she will think it's me. She's not able to understand that first of all it's a shared house and two look at what she's is doing herself. She had the dryer on this morning to put her clothes that she's wearing for the day in there to warm for half an hour. This wasn't the first time she has done this. When 5 or 10 minutes would be more than enough. I considered getting her a towel warmer but she likely won't use it because it will be a new appliance and she will recognise heat from it and view it as a heater.

It's so so so hard. Yes, she's claiming most of the benefits that she can. I gave her a form a few months ago to applying for a home scheme to insulate the house but she won't fill it in.

I think with the form it's executive functioning. I now really think with the dryer, this is memory loss. I think she's putting in clothes and just forgetting. I always grew up with my mother having low use of the tumble dryer with a fear of the bill and now she is completely the opposite.

The next bill is going to be so much higher because of this new war and more rising costs and that will add so much but she she won't be able to understand that and she won't be able to adapt.

There is at least two laundry loads every week where she is washing at 60degrees when there is no need. Like her daily clothes and towel wash. A 40 wash would be more than enough.

Sometimes I would try and take a load of her but that's usually the household stuff like towels but that's always not possible. I have to plan around my work and around her sleep and get everything to align so that there is a load, I am there to do it and the time is appropriate.

I even bought the Dettol laundry cleanser but she refuses to use that.

Her comprehension is very very very bad.

You do have to ignore the guilt tripping @ThunderFog especially when you are unwell.

If it was up to DF then one of us would be with him all the time just in case because he feels anxious when we aren't there. Reality is with three kids and a job that isn't possible so he has to get on with it.

I haven't seen him since Thursday last week because I had to save my limited energy for DD2's birthday and my own medical appointment this week. If I hadn't I would have been completely unable to look after DS. DF has carers 3-4 times a day and DH to put him to bed most nights. He is lucky so I let the guilt go and focus on my immediate family of me, DH and the kids first. I am learning to say of all the people I neglect today it is not going to be me.

God.
That sentence hit me hard 😕
"Who do I neglect today?"
Yep.
They been my life for 13 years 😕

@ThunderFog I recognise the 'who shall I neglect today' guilt. I moved to part time working a few years ago, after many years of stupidly long hours, so that I could spend more time with my teens, so that we could use out weekends for 'fun' stuff instead of chores and so that I would have a bit of time for hobbies/friends of my own. As mum's health has declined, lots of my 'time off' has been taken up dealing with her so of course time for fun things with my family/friends was the first to be sacrificed and when mum's been in 'crisis' I haven't been around as I wanted to when my DC needed me (not to mention the state of my own house). During this time my DC and DH have been dealing with stresses/health issues/problems that I don't feel I've been able to support the with as I would like. Mum doesn't seem able to understand that I have other calls on my time (even if I try to explain) so she complains that I don't spend more time with her and don't do more for her and Brother, or do tasks for her quickly enough. I've had situations where I have left my teen to get 3 buses to college for a test (because the train wasn't working), my washing machine unusable because I can't find a day when DH or I can be in all day to wait for an engineer, working every evening to hit deadlines because half of my work day has been taken up organising things for mum, my own health suffering because I never seem to find time to eat a proper meal etc- but when I am with mum she complains that I haven't done a huge list of entirely non-urgent tasks for her and that I should see her every day.
In my case this is all exacerbated by the fact that Brother doesn't think she should have any external help and certainly shouldn't consider residential care and encourages her to refuse to consider these options.

@Choconuttolata
'Of all the people I neglect today it is not going to be me'
That hits so hard. I've been propping my mum up for over 30 years, and in her late 80s now with declining health things aren't going to get any better. I've worn myself out physically and mentally caring for others whilst being unwell myself and sandwiched in the middle. At least my grandchildren bring joy, rather than the negativity my mother has always been filled with. My health has definitely suffered because of it; keeping going when I shouldn't have, and saying yes when I should have said no. I've got better at being tougher, and now they can have what I'm able to give, or nothing at all. It makes my mother seethe, as she wants everything her own way and done immediately if not sooner, but I'm not going to put myself in an early grave for someone who has at times been cruel, spiteful and neglectful, and can't just blame that on old age and declining health because she's been like that as long as it can remember.
Sympathy to everyone who has spent years putting others first.

I really feel like I've had an epiphany wrt mum.
She wasn't a good mum to me, and I don't love her, but
I've been totally responsible for her since Dad died 13 years ago and I'm done.
She has two other much more favoured children so they can step up.
She can make one of them poa.
My intention is to pop in on friday morning for 30 mins.

Has anyone here experienced prolonged silence spells from their person. Just no conversation. There was one of these episodes a few years ago from my mother which was so odd and I did nothing to warrant it. It was the time I began to think - is she going senile? It was the time I began to think there was other stuff with her too.

As the months and years passed there was only ever more and more and more things. I have almost the length of my arm about her on so many things just no right.

I reckon I am in the pre diagnosis stage of a dementia diagnosis where I am the only person close enough to her to see all these things and everyone else they want to write of my concerns. It seems as if GPs did one module in college and all came to the same learning experience that it's all memory loss when it's not that. There's years of executive functioning issues, poor comprehension, behavioural and emotional issues, ignoring important fixes in the home, paranoia.

I am subjected to regular prolonged silent spells from her. They are unreal. There's no conversation from her anymore unless if she wants something. Her only topic of interest every day are her son's who all live abroad. She asks me every day did I hear from them. As if we don't have any lives and are in touch every day.

Theres no proper talk any more from her. There's no

• how are you
• did you sleep well
• how are you feeling (I have a medical condition and I get sick a lot easily).
• how's work
• how's Pat (my partner)
• What's your schedule like for the day

Theres just no conversation from her.

It's so depressing. Her only topic of interest are her sons. If I was born with a penis she would have an interest in me.

'Of all the people I neglect today it is not going to be me' - @Choconuttolata this should be our thread mantra!

😂 @FiniteSagacity I am certainly chanting it like one at the moment.

DF still very poorly, sleeping in his chair when I checked on him at 3pm, had not eaten lunch and then went to bed before carer arrived at 6pm so refused his evening meal. He was still in bed when DH checked on him at 9pm.

Today I prioritised having the energy for a shower, sat in the sunshine for half an hour this morning and made sure I ate healthy food at all three meals.

What have you all done for yourselves today (however small)?

I took a lunch hour. A whole hour. Walked in the sun, tried to eat healthily (still had ice cream after dinner though).

This year has been a ‘just put one foot in front of the other’ year so far. Days since last call from a medical professional about my Dad = 2

Mum still in hospital (I only know this because I phoned the ward..)
Siblings have gone radio silent 🤷‍♀️
Imagine she'll text me once she's home.
She phoned yesterday asking me to "sort out" her Internet banking (she gets locked out when in hospital ad she keeps looking at her balance 🤷‍♀️ and it took me 3 weeks to sort out last time).
So I told her to phone the bank once she's home.
My hope is that by stepping back she'll get carer visits.
And also that people will realise how much I have scaffolded her life.
She gladly tells anyone who will listen that she is totally independent

FML DF now refuses to go to care home is still in hospital but current infection has been treated so he’s now a bit better.
I have emailed social care to say we do not think he has capacity to make this decision, his DW has been supporting him with tasks and she is now keen to go into a care home ( DH has found one near us) and if he is discharged home we will supply no help whatsoever.
I am working tomorrow so that’s the weekend screwed again trying to get him to agree to it again. DH has done nothing but visit them and try and sort out care homes this week, He has had enough too.

I am feeling grumpy and resentful today and I'm not really sure why.

News from the CH is 'more of the same'. DM can't feed herself so is being fed by a carer. Inch by inch she is declining but DB cant/wont see it. Insists they have interesting conversations and that if carers/nurses/GP tried a bit harder DM would 'get better'.

Yet when I visit DM she sleeps or looks at me vacantly as though I'm not really there.

I do sometimes wonder if DB and I are visiting the same person.

This could go on for weeks and I'm tired of it now.

@rookiemere that must be so frustrating. Has your DF always been quite selfish or is this a manifestation of dementia?

Ultimately it was my DM's determination to 'go home' which drove forward her dementia diagnosis, statement of lack of capacity, DOLS. Though all of this was then overtaken by DM''s sharp physical decline.

Mum had an appointment at OPRA today and we’d arranged patient transport and for her carers to have her ready for them (8am)

phone call 1 - at 6:30am - carer hasn’t arrived, since got myself dressed and had breakfast - mum she’s not coming until 7 and it’s 630am

phone call 2 - 6:58 - she’s still not here … again it’s not 7 yet mum

phone call 3 - 9 am - transport hasn’t arrived and my catheter is leaking

phone call 4 - 945 - they’ve arrived

phone call 5 - 1015 - I’m waiting to be seen

phone call 6 - 1207 I’m finished waiting to go home, can you tell them ? No mum they will sort it

phone call 7 - 1:27 I’m home

She has full metal capacity, just gets anxious. I feel exhausted and now waiting on next call … 🤣

I'm afraid I've come to the realisation that nothing will change with mum until there is yet another crisis.
It'll be interesting to see how my siblings deal - or not - with whatever happens.
Mums not home yet. I think she told sibling noon, but the drs havent sorted the paperwork/meds so sibling promptly came home again. They are enraged. I said "yeah, she did that to me more tham once. I don't go in unless a dr tells me she's ready to go"
They won't have got bread, milk, basic groceries etc 🤷‍♀️

@GnomeDePlume I’m not surprised you feel grumpy and resentful. Your DM is (fingers crossed) peacefully slipping away, and the one person who you would expect to feel the same emotions as you is your sibling.

Instead of being a source of support and mutual comfort, sharing memories at her bedside etc, he’s in denial it’s happening at all. And no doubt when he does finally accept the inevitable he will be all upset and looking to you for a shoulder and offering none in return.

Im getting annoyed on your behalf!