Cockroach Cafe - newly refurbished for the summer

GOD burning the medics and surgeons can be infuriating when they do that. I
They think they're being clear but they are hugely undermining the team approach.

The cup of tea lady will have been the OT. Maybe call her. Give her the message you want him to hear from the team - you need carers, you'll do fine with them, lucky to be in your own home etc etc.

We have thankfully managed to get MIL back on the anti-psychotics, so we are back on manageable terms again.

However, she is due to have her heart op next week, so we have absolutely no idea what that will bring! TBH we are sort of hoping she doesn't make it through the op. She has a miserable life (mostly down to her own miserable personality) poor health and limited mobility and now the Alzheimer's (still not officially diagnosed, but with obvious symptoms) on top of that. Sadly, I think this is too much to hope for.

I'm dreading the aftermath 😱

I'm considering whether there might be quite a few of us doing our 15 years at the same time. Perhaps the Bad Daughters Prison Wing.

I raised the subject of carers coming in and that went down like the proverbial

I think you and your DH absolutely have to get over to them the realisation that this is non-negotiable - because it is. That you will not and cannot provide all the care they need and the pressure on you will be too much. There's no point anyone arguing about it because it's going to happen.

In fact, I would start putting the whole process in motion, the care providers are used to this resistance and will help you persuade them.

Thanks @Words.

I've already found that OTs and SWs are assuming that we will be able to carry on as we are and it's not possible.

Today we're taking MIL for a look round the care home that's very near to their house with a view to a stay for respite care until FIL is home. I have made clear to the hospital OT that he cannot be discharged without a care package as we cannot provide the care they both need. I can see that as you said I'm going to have to be a broken record about that.

Visited FIL yesterday and he moaned at me for about a while about the lack of physiotherapy he's getting, the cleaners waking him up with their floor polisher, the accent of the woman who came to talk to him about whether he could make a cup of tea (???) and the fact that other people in his 4 bed room have the absolute nerve to have conversations with their visitors.

Then the surgeon came to see him and told him he was doing well etc and so FIL asked when he could go home. Surgeon said that wasn't down to him - medically he could go home tomorrow but what matters was his mobility in terms of discharge. Stupid, stupid man! So now FIL thinks that he could go home immediately if it wasn't for the fact that the physios are ignoring him.

So, as it wasn't going to get better, I raised the subject of carers coming in and that went down like the proverbial - they won't do things how he likes them, they'll steal things, they'll be unreliable etc, etc.

I stood firm on that and then told him that we were considering moving MIL to respite care until he was home and we'd got a care plan in place for him. He took that rather better although obviously he tells me they'll put her in a room and ignore her.

All of this while reiterating that they're fine, we mustn't fuss, they can manage, we mustn't put our lives to one side because of them etc.

I managed to leave without strangling him but this is why they're not living with us ever. Fifteen you say, @MintyCedric, with good behaviour? Hmm...

Good advice @Words!

Mum gets AA
She's had a blue badge for 3 years and it's been an amazing help for hospital visits etc
She's now in a ground floor flat in a sheltered complex which means no stairs, and it's really cheap as the heating is included in the rent
She's decided today to get Wiltshire Farm foods to deliver a hot meal and pudding each day which will mean she might put some weight on
I'm POA for health and finances
She has a Will

Not sure there's much more you can do preparedness wise.

We are all doing our best - and some of you are going above and beyond - so cockroach all x

Nor me sandwich .

Reading these posts has made me reflect. First with my late Dad, and now my mother ( she is much younger), I've been dealing single handedly with this for 20 odd years now.

So my cockroachy observations learned the hard way:

Apply for attendance allowance and for all that is holy get a PoA in place. And get photographic ID.

Blue badge makes hospital appointments easier.

I never , ever considered having her live with me. It would wreck my life.

If you signal you are available to care, even partially, the services absolutely will step back. I grey rocked it. No. This is an unsafe discharge.I cannot look after her. I do not live locally. I have a busy professional job in another city. No. It's none of your business whether I have dependent family or not. ( yes they tried to guilt me as well) Repeat over and over.

Do not get into a situation where you are at their beck and call. Pay someone else for this purpose if the person can afford it. Prepare for emotional battles over this person, but don't do it yourself.

Set boundaries. Hah.

It's a hellish time, and it can go on for far longer than you think remotely possible so protect yourself with that Teflon. Seek out others in same boat but avoid the saintly martyr types.

Pick your battles. I vividly recall one dreadful winter driving in the dark for miles and miles after work over to the hospital in an attempt to get to the bottom of my mother's diagnosis, as no one would discuss her over the phone, despite PoA. The roads were treacherous and icy ( this is hill country) , I was ill myself, and my beloved dog was dying. I should just have let it be. Nothing much was gained apart from more stress for me. I don't think I would do that now.

Dealing with financial institutions can also be hugely stressful, especially if the person's affairs are in any way complicated. I was dealing with nine at one point, all with different procedures regarding PoA, ID etc. That nearly broke me, but I came through it. See photographic ID, above.

My mother still has the power to badly unbalance and upset me, but this happens less than before. These days I get to choose how often I see her, and the home do everything else so that just leaves financial management, so it's much better than it was.

My most pressing issue is how on earth to engage with her, but that has always been an issue, except now she forgets what I said last time anyway.

I'm just prepared now for it to go on for a long time.

Cockroach all.

@BurningTheToast you are in such a difficult situation. Lots of wisdom on here. I could not contemplate what you are planning.
Is live in care an option? 🌺🌺🌺
cockroach all.

*BurningTheToast" I think the OT (or multi disciplinary discharge team) steps in once once the patient is medically fit for discharge, that's the phrase to be listening for. Is there a chance that he will be discharged to a rehab place rather than to home? It's something to ask about because of the impact on MIL.

My mother was dischanged from hospital (England) in April, the day she came out they fitted a key safe and the carers started seamlessly that evening. The fall alarm went in a couple of days later and she was on the district nurse's rounds. She was home alone, there was no alternative. I was answering the phone almost continually but it was all put in place as part of the hospital discharge. If I'd have been willing and able to move in with her then none of that would have happened because there would have been no need. If the family are providing care then the person's care needs are being met and there is no need for social services to do it.

Hopefully there is more chance of a fast assessment through the hospital discharge team because they have the incentive of freeing up the hospital bed, they need to be told loud and clear that FIL is the sole carer for MIL. It's not an uncommon situation, they see it every day.

Looking back, the thing that saved the day for us was a respite vacancy in the home near me. Mum went in for a week when she came out of hospital and after she'd gone back home and everything went downhill they still had the bed. She was happy to pack her bag and go back there long term seeing as she'd already seen it. In a respite place in addition to you knowing she's safe, MIL would also have people round her rather than being alone in the times when the carers aren't there. What we want for our loved ones is for them to be happy and safe whilst respecting their wishes.

Does MIL get attendance allowance? I'm assuming she does but if not it is worth claiming. It's not means tested and if you are a full fee payer you keep it even if you move to residential care (I know you've a lot on and I don't want to add to your to do list but it needs saying)

@OnthePiste - my DM said the same thing when I spoke to her last night - that if SS think that DH and I will provide the care then they're not going to be in a hurry to do anything. If we weren't able to do what we're doing, she'd have to be admitted to a care home or hospital as she can't get herself to the loo without a significant risk of falling or even make a cup of tea.

The plan today is to pin down at OT at the hospital about FIL's likely length of stay, prognosis re mobility etc when he does get home and ensure that he gets a needs assessment soon from the hospital social work team. And I'm going to call some private agencies to see if they can find me someone. Then when we have some likely timescales I'm going to have another talk to DH re respite care for the short term while we get all of that in place.

Have a good day everyone and thanks again for your support and advice. It's appreciated more than you can know

@BurningTheToast 3-4 months to set up a care package? That is unbelievable! My DM's was set up within a week last year. I appreciate there are staffing issues but that is unacceptable. I am wondering if you have given SS the impression that you will be stepping up to do a lot of the care and they are therefore not in a hurry as such? If MIL had no one then they would have to get the care sorted quicker. I can understand a couple of weeks to get it in place but months? No way.

Also, 4 x 15 mins is nothing, they will be in and out of the door with no time to do anything except medication. Push for longer visits, my DM has 4 x 1 hour provided by SS. She had 6 weeks respite care after hospital and came home, sometimes it does them good to be looked after, fed well and it gives them a chance to get their strength back a little. Don't dismiss this option.

The resentment is hard isn't it?
But totally understandable

Burning all our situations are different. I am shattered after 6 weeks of my mum being in hospital. I'm absolutely not going to give up my job and leave my teenage son to move in with my mum in her flat and be her carer. It is possible she would be happier that way but I've spent 3 years listening to nonstop misery because she didn't like that flat. If you are already exhausted and having the look of the flat you'd have to manage and keep clean and all that, maybe don't do it.

After starting the day feeling relatively chipper, it definitely got worse.

The flat was poky and extortionate - for the price they want per month I expect it to be a lot nicer than my actual house. This had a odd smell in one bedroom and just felt bitty in its layout. On the other hand, it did have an actual, proper, wine cellar. And a wine fridge in the kitchen - DS pointed out that given the reason we're moving to it that might come in very handy...

But mostly I was downcast by my conversation with social services. Apparently MIL must have a needs assessment before they can do anything and they've put her on the urgent list for that so two to three weeks. I think their definition of urgent is different to mine.

And then, once they've assessed her needs they can put in place a package of care - 4 x 15 minute visits per day. That will take several weeks, "possibly three to four months" to implement.

FIL will also be assessed in hospital but they can't do a joint assessment until he comes home. I'm starting to see why these assessments take so long...

I've spoken to a couple of private agencies and they're struggling for staff too. It seems people are ending up in respite care simply because there aren't other options.

I think we need to find out from the occupational therapist at the hospital how long FIL is likely to be in there - it seems that OTs are the people with the power re discharge - and then look for respite care. DH is sure that we can avoid that if we just reorganise bits of their house so that one of us can stay there more comfortably, and so on.

I feel really guilty for just wanting a bit of our lives back. I really admire those of you who are managing to juggle (sorry - awful term) caring so well while I'm just exhausted and increasingly resentful.

Hmm 15 years [considers it]

What sentence would I get for putting her out of her misery?

Probably out in about 15 years taking good behaviour into account not that I've researched it

It seems unlikely... they could be married by that age! Though I'd be truly horrified if ds pitched up engaged I have to say.

Dm went from the hospital to a nursing home today and I find myself wishing the GP would offer a suicide pill. What sentence would I get for putting her out of her misery?

I'm staying at mums on Thursday as per but planning to get away early so I can spend Christmas Eve with DD as that's our thing since being in our own place.

We'll be back to mum mid morning Christmas Day and stay over, hopefully escape by midday Boxing Day and have the following day at home.

I hate having to chop my time up like this. It's not that I mind spending Christmas with her but the pressure to be there so frequently for several hours at a time is just draining and makes me really resentful. The best present I could have would be 3 days just relaxing in my own home with DD and the cats.

There's also the possibility of a NYE night out which will probably cause WW3 and I'll have to go round on NY day so will be conscious of having to be fairly sensible so I can cope with that.

DD had also announced that she'll be having her friends round if I do go out which I have reservations about especially as was planning to stay at my friend's place overnight to save on taxi fare. She's a very sensible 17.5yo and we're talking a maximum of 5 close friends, 3 of whom I know well and know their parents, the other two have longstanding connections to these three.

I think I'd be fine with it under normal circumstances, just a bit worried they'll get carried away with it being NYE.

Oh gawd 😳 🌲

Mum is coming here for lunch - I did point out of my sister offered I wouldn't be offended if she went there...except an invitation hasn't been forthcoming..

Mum can be very generous sometimes then, like your mum, says something SO weird and unnecessary that I'm left thinking wtf!?

She had her x rays done yesterday. Bloods are arranged for 29th (Loooong waits here for blood tests atm...) and I'm sorting a kidney scan which will hopefully be before her next Dr's appointment on 2nd December

The money side of it drives me nuts.

Mum is not minted but she's very comfortable. Last weekend she made a 'joke' about having to start charging me to use her tumble dryer (once a week and while I'm there I empty the condenser unit and clean the filter).

Naturally when I said 'fine, I'll take it home and rry it indoors' she burst into tears because I was being unkind and stroppy .

On another note, is anyone else dreading Christmas already?

Ah yes, the whittling about money.

Sigh.

After dad died mum got a large DinS benefit. Plus her pension, plus 3 x workplace pensions from from dad (he'd been working since he was 15 so 52 years)

She bought the house they rented then sold up last year making a profit.

She lives alone, her flat rent is covered by her AA payment and she's got over £1200 pm to live off. That's just for food and some utilities (heat is included in rent)

Not counting her savings (she refuses to invest, don't get me started...)

It rather rankled when me, dh and ds1 had to move her because she "couldn't afford a packing and moving company" 😬🙄

Over here, DM was almost back to normal after her post-vaccine illness, just in time for her birthday.

Back to normal means back to worrying about moving into the sheltered flat, worrying about how she will get around in the communal areas of the sheltered block, worrying about the botched job a roofer did on the house (which I am trying to sort out but may involve legal action), worrying that she will run out of money (her pension plus widow's pension make her a higher-rate tax-payer, not to mention all the investments and two houses...). It gets exhausting, but not as bad as what many of you are dealing with.

Sounds like that could be an idea @MintyCedric?

I've got a big trustee meeting coming up next week - should be a formality but there are ways 1 or 2 men trustees who just like the sound of their own voice so I may channel my inner Jackie weaver 🤣

Morning ☕
Mum seems a bit perkier today
I'm feeling like roadkill and have donned the fleece of despair 😫🤣
Dropped ds1 off at university (or rather he drove, I drove back)
Checked on mum.
Now washing/cleaning yadda yadda...
I'm cleaning the oven for some reason 😬
Lovely sunny day here
Cockroach all x

@IthinkIsawahairbrushbackthere

That's really lovely.

I went to a the AGM of the charity DD works for last night which provides grants for community groups.

There were some amazing people there including the local dementia hub team, an art therapy group, outdoor wellbeing group and youth group focused on mental health.

DD has suggested I speak to dementia hub rep about mum. Couldn't catch her last night but she seems very approachable. Think I need to maybe keep a record of glitches for a bit first though as the signs are quite subtle.

Makes a change from worrying about L I guess!