Cockroach Cafe - Autumn

I agree. The only blessing dementia gives is that most of the time she doesnt know her situation. On the thankfully rare occasions DM is lucid she is upset.

@MysterOfwomanY
I'm a practical planner, who wants to feel useful.

@bigdogpaws we have a lifeline alarm service with a pendant and carers going in twice a day. When I say around all the time I mean really on hand to sort any disasters out. I don’t visit every day.

The issue is from my point of view that he is away EVERY weekend, assumes I am therefore on hand to pick up shopping, newspapers, keep her company, arrange and take her to any appointments, do all the admin, sort out the central heating, fix hearing aids or any niggling thing needing doing as if my time is of no value and I’m not allowed a week where I don’t have to think of her needs.

He texted me yesterday to say her central heating wasn’t on and could I sort it out! He was in her house at the time FFS.

@MittensTheKittens the discharge team / Occupational Therapists ...can... do that, or a lot of the scoping and planning.
Whether they concentrate their efforts more on people with no nearby relatives or friends, well, that's a good question.

There's no downside to fitting a key safe and I don't think it's hard. And ditto checking the loo works!
You can order groceries on the day nowadays with deliveroo etc.
The rest, you may want to see what the OTs say :- they may advise some special sort of bed... Blah blah.

I shall be interested in what they recommend for my ER. She'd deteriorated in the fortnight before she was admitted, and the carers were wrangling her from bed to wheeled commode to stairlift to wheelchair to living room chair.

My plan is to see what the pros advise and go from there. I am retired with my own set of dodgy joints so I'm sure as heck not moving any furniture without good reason and good notice!

There has been a first mention of going home, with four carers a day.

However, no one has given me a list of what I will need to do before she can come home.
I'm assuming:

• Key safe needs fitting
• Rearrange downstairs furniture
• Move bed downstairs
• Make sure she has food
• Sort out falls alarm necklace
• Get a plumber to check the downstairs toilet actually works
• Clothes rail/underwear storage.

But who knows...?

She's not going anywhere soon, but I don't want to rush anything

@BestIsWest Apologies if you've already explained this, but does your DM really need you or DB to be around to keep an eye on her all the time? What would happen if you were both away?
If she really does, it sounds like there needs to be a discussion about why, and what could be changed so that she would not need it (eg. falls alarm with a care company who would go out in an emergency, community transport to appointments etc). I completely sympathise with the useless brother issue (mine also is apparently unable to remember anything without someone to prompt him multiple times, and too 'busy' to keep a diary or calendar). But isn't the bigger issue here why you can't both be away for the same weekend if you want to?

Those were her words, I suspect more of a hobble given the dodgy knees.

If smell is anything to go by, DM's kidney failure has advanced a bit. When I went in at the weekend I could smell DM before I even got into her corridor.

@NeedMoreTinfoil did she "run and bang"?
Impressively athletic if so!
You can't win, those of us with mobile ER watch with horror as they get into scrapes.

Yes, this was our experience. Mine went into A&E over a bank holiday weekend when neither of us could get there - me for medical reasons, DB because he was too “busy”.

She was seen pretty quickly, although was there for 24 hours before going to a ward. Staff brought frequent drinks and offered sandwiches and fruit.

DH is back. He wasn't able to have the difficult conversation with DM that she won't want to hear, but will go back next week

In better news, she was able to go round the supermarket with DH (not done that for months) and "all the electrics going wrong" was just a tripped lighting circuit. Her version to me - the cooker "blew up", which took out all the power and caused her to run to the neighbours and bang on their windows for help. They couldn't fix it so she then had to spend the "entire night in the cold and dark with only a dim torch" until the electrician came out in the morning. I had wondered why electrician blamed bulbs for taking out every circuit, now it makes sense. She didn't think to check and use the lamps or the electric heaters which were all still working. And the GP says she's fine....

I feel for you @MysterOfwomanY.

We had a week (Monday to Monday) away last week. DB texted twice during the week to find out when DM’s Flu jab was. I had already told him twice, both by WhatsApp and face to face. Then on the Friday, he phoned me to find out ‘what are the arrangements for the weekend?’ i.e. ‘Are you around to keep an eye on DM so I can go off to my caravan for the weekend and get pissed?’

He had come back from a week in Spain the day before I left for my holiday. I did not at any point contact him while he was away so he could enjoy the break. He called in to see me as we were putting the suitcases in the car so he can’t claim not to have known we were away.

I was so furious I put the phone down on him. Then I had 7 missed calls and voicemails from DM wailing about something. I’m sorry to say that I took the attitude that if she could get to the phone it wasn’t an emergency and texted DB to sort it out. I’m still upset about it and it spoiled the last few days of the holiday.

He goes to his caravan every weekend from April to October and takes it for granted that I’ll put my life on hold to be around for DM every single weekend. Well, no longer.

Ho.
Guess who's on holiday (for a whole 3.5 days) and getting "oh you enjoy your holiday!" texts from ER and, also, from DSis (who lives abroad) "I got this msg from ER insert lengthy message about changing care companies here etc wth" (I paraphrase slightly).

When I politely text ER to see what the deal is exactly - can her care company really not supply more than 1 carer at once? Or ...?
She threatens to block me.

So instead of just running stuff by me like a normal person, ER has made me have to reassure DSis and DStepmum AS WELL. Oh and probably all the others on the family WA chat.

I know ER is safe and I don't think (based on previous) that the hospital is likely to do an unsafe discharge. So I'm not worried. And I'm now expert at letting stuff roll off me.
Could I have done without it though? Yes...

I have mildly pointed out that she can just talk to me but have left it alone for now. Tempting as it was to see if she would block everyone one by one before she realised how ridiculous she was being!

I was told that a stool sample could be kept (well wrapped!) in the fridge if needed. DC has Crohn's and stool samples are something I have loads of experience of. Hope this gross tip may help make someone's life a bit easier.

It makes me so cross. Both ER and her husband were adamant they'd never set up PoA, that it was an excuse for people to steal from them and the Big State to steal their money. Now, with no capacity, the state is about to take control because the demands of deputyship are so onerous compared to PoA that noone in the family can do it.

That sounds so tough, @roundaboutthehillsareshining.

Since I’m single & childfree it’s also all concentrating my mind quite a bit on what to do about my own POA.

What can I do? I'm just expected to do it

@MermaidMummy06 please stick around as virtually everyone here is in a similar situation and having varying degrees of success. Lots of help from women who understand. FWIW, here’s what I’d do if I could go back in time to before my mum started to seriously decline:
-Get paperwork sorted - wills, POA being the most important. Make sure you know which institutions they bank with, the location of the deeds for the house, details of any particular trusts, business or financial arrangement(s).
-Have the conversations with your parents about what support they will need as they age, and their expectations. I found this the most difficult and my mum airily waved away my concerns with “I’ll manage”. What I should have done is ask very narrow questions about specific situations rather than raise broad concerns. You could take examples that crop up on here and discuss with them as “a friend’s parents are having this issue, what would you want to happen if you were them”. Eg you could start with asking them their opinion on your FILs situation and whether he should be treated for every infection.
-Whatever else you do, do not make yourself the default problem solver. It’s a trap that many of us fell into. You start by agreeing to make a phone call on their behalf, the “one little easy thing” jobs steadily increase and then one day you’re facing a parent with a Code Brown and no help in sight. You can’t leave them to sit in their own shit so you have to deal with it, wondering how on earth it came to this.

Do not set yourself on fire to keep other people warm.

@EmpressaurusKitty It makes me so cross. Both ER and her husband were adamant they'd never set up PoA, that it was an excuse for people to steal from them and the Big State to steal their money. Now, with no capacity, the state is about to take control because the demands of deputyship are so onerous compared to PoA that noone in the family can do it.

I used to hold PoA for a distant elderly relative who lived alone miles away. Everything was so much easier - I could organise her into a lovely home, could just Amazon what she needed using a dedicated card I had set up for her account, got her house sold without any dramas, etc. Sorting out her will has been far more onerous, but thankfully I wasn't an executor - she had a very firm policy of separation of those two duties and I respect that completely. Just can't be doing with the petulant "not going to sign a POA" temper tantrums that just result in chaos.....

My parents at least set up POAs with us when they still had capacity. It’s one relief at least now DF has dementia.

We’ve been really lucky too in that his GP has arranged for carers to visit him twice a day to make sure he eats & takes his tablets, but every time my siblings & I think we can stop & take a breath something else happens. I’ve just booked leave on Friday to travel 3 hours, get to his GP when they open, pick up a stool sample kit, hopefully get him to use it & then return it before they close.

This will be the second attempt. Wish me luck.

@MermaidMummy06 I won't be pushed into full time carer mode but won't really have a choice. I know it's not easy but you absolutely DO have a choice. Are you able to speak to your parents, whilst they are still fairly healthy and active, about their plans for if/when they need more help? If your DM will not be able to do anything at all on her own, they should be planning for how she will manage. It's really hard if they won't face up to it (mine wouldn't) but even then it is perfectly reasonable, and necessary for your own mental and physical health, to have some boundaries about how much you will do. With the benefit of hindsight, I'd advise that as they start to need more help you avoid starting to do things that you don't wish to do long term.

Re your FIL- surely there can be a balance where your DH spends a bit more time with you and your DC. I'm sure it's really hard for him if he's constantly in crisis mode but it sounds like things may go on like this for years and he'll probably one day realise that in order to avoid potentially miss spending the last possible birthday/Sunday etc with his Dad he has missed out on the chance to spend ANY of these with his DC.

@funnelfan @GnomeDePlume Thank you. Yes, we have children. When MIL was unwell the DC stopped asking for DH as he was never home. They were quite young then. FIL's quality of life isn't great & I truly wonder why they worked so hard to keep him alive, knowing he'd be shipped directly to age care 'if he survived'. He calls DH multiple times a day for trivial things. I'm waiting for the next health crisis which sees dh rushing to the hospital every few days. FIL has multiple complex health issues. I don't do anything for him - and rarely visit unless unavoidable. ILs have treated me awfully. We've been doing this for years - and I'm exhausted and now looking at the future with my DP's draining us as well.

My dps are healthy and active but they're getting more difficult to deal with & need tech help constantly. DM will need looking after with an allowance kas she can't even pay a bill herself. When DF had a serious accident I had to step in with the finances & even show DM how to withdraw money & DH took her to teach her to put fuel in her car. She's a perfect example of learned helplessness. What can I do? I'm just expected to do it. I won't be pushed into full time carer mode but won't really have a choice.

I was watching HIGNFY last night and the host admitted that he fantasised about doing a crime small enough to get locked away for a couple of weeks just to get away from his family . Sounds like a plan…

I have the opposite, she's obsessed with unplugging things and then wobbles/falls over when she's pulling them out!
I bought her a 'posh' extension lead with surge protection so she would stop fiddling about with her lamps.
She somehow got it into her head that the electrics in the house are bad and she'll over load them, but also won't ask an electrician to visit to reassure her that although they're from the late 70s she has a new consumer unit they're fine for her use.

So my ER lives in the middle of nowhere, so thankfully no neighbours would be impacted if there was a fire. But equally noone would know until the cottage was well ablaze, and as it's thatched, well you can imagine (I certainly can!)...

The complexity is that she doesn't have capacity (formally assessed by MH professional) but she's still living at home as the "least restrictive option". So it's been acknowledged her decision making process is significantly impaired. There's no LPOA in place (read my previous threads for a precis of this!) and noone is really in control or managing the situation. Thankfully she's still in hospital, but she is the poster child of bedblocking and not unreasonably the hospital want her out as they're providing no medical care. It's just while she's in hospital she's in a safe, warm, clean environment with food, water, (no alcohol), etc. As soon as she goes home, none of that is true.....

We need a “wtf” emoji! So many things on this board, I react with eyebrows up to my hairline and jaw on the floor. But also recognition.

Re bins, DF can still put them out, which amazes me. DM still obsessed with the compost heap and cutting up lots of rotting vegetables but at least I don’t think they’re putting food down the toilet anymore since I told them off about it. I’m now on fridge-watch more often…

I do worry about DF leaning the cooker on but at least it is an electric hob, not gas. Their electrics though … 😳 Multiple extension leads, overloaded with too many plugs, sometimes they get hot.. I have told them and told them about this (years and years ago when DS was younger he said “even I know not to do that Mum, Fireman Sam said.”) but they won’t listen or change. Again, capacity to make bad decisions. And of course both of them are too deaf to hear the fire alarm.