Cockroach Cafe - Autumn

I think I find it hard as she wants to go to the doctors straight away and shows me something like a rash and I will ask how long she has had it and it will be something like 1-2 days but then rushes to the doctors and I have learnt not to say ‘well wait a week to see if it just goes’ as that isn’t the right answer but don’t feel like I have the level of empathy as my emotional limit is exhausted with just keeping on top of admin for two houses.

And then I feel awful as she is a great MIL and is kind but I feel exhausted myself and just cannot give anything else on top of the practical support I already give.

Oh yesterday’s visit to MIL did not go well. I ended up being very short with her several times.
It was the pre op for her pessary removal op. She was v cross at having to wait 30 mins to be seen, convinced they had forgotten about her. She was v cross at all the “nosy” medical question, v cross they couldn’t tell her exactly what op entails, v cross they couldn’t tell her why dr apparently hadn’t given her a hysterectomy 20 years ago, v cross the pessary had been put in “ without her knowledge “ two years ago. Is that possible? She was in hospital for the prolapse, surely she would have had to sign consent? I didn’t, but didn’t have POA then, and there was no one else. She says now she would never have let them do it, but I’m not sure, she’s been fine with the pessary and it’s helped her loads. If she’d only looked at the hospital letters telling her to attend follow ups…
We then had to phone consultant’s secretary to find out about op. They said she would have to heal before they could stabilise the prolapse again.
That was it, not going will just live with it, too much hassle, am incontinent anyway(?) just want left alone…
I do get it, she’s scared, and tired. But an unresolved pessary can cause all sorts of really serious problems. The Drs aren’t going to these lengths to remove it for shits and giggles. Somehow the whole thing is my fault, or to do with me somehow and it is causing resentment.
Plus she won’t stop criticising her carers. She will only allow two 15 minute visits a day to administer eye drops. They also take her rubbish to the bin, then ‘play on their phones’. But they won’t do a hands turn for her, do nothing etc,etc…because she won’t let them! She would never even let them make her a cup of tea, wipe a dish or anything. So now they know, so they don’t offer. And that is their fault, they’re just lazy, she says to anyone who’ll listen. Then gets cross with me when I point out she won’t let them.
Now I’ve got to wait on hold for operation date. And just pray she tells me!
If she refuses the operation though, I’m going to seriously struggle though, I’ll have to distance myself for a bit,which feels very cruel, but I cannot keep trying to persuade her. She needs to come to the decision on her own I think.
oh, sorry for yet another rant!
( plus I went on Wednesday, planning an afternoon out prior to going to house of doom, but my train was cancelled 3 times, twice when sitting on it then delayed so when I arrived I only had time for a quick meal before I had to go to her house not the relaxing museum trip I’d hoped for, and then had to face her mood because I arrived an hour after I said I would! Now I know, train is not better than plane for this journey, it’s all a 6-7 hour trip to get there whatever way I go.)

OMG @Podgedodge what a nightmare.
I'd have needed valium after that lot.

Thanks @TheBroonOneAndTheWhiteOne
Most annoying thing, I’m not feeling great digestion wise and alcohol exacerbates it so couldn’t even drink😂😂

@Podgedodge Sounds very much like my Elderly Relative. I find the best thing is not to question what she says about "they didn't tell me they were going to do x, y, z", or any of the other very-likely fictional encounters with medical professionals she talks about, but just to tum-tee-tum along and make sympathetic noises (while in my head focussing very deliberately on my shopping list or drive home or planning a nice run, so I'm not actually internalising any of her moaning). She just likes to blame someone and likes the attention. Same with the carers, she appreciates the sympathetic noises.

The thing that really helps me is sometimes when I'm talking to ER, I imagine I'm in a play. I find that helps quite a lot with producing the "right" emotional response without letting the negativity and resentment be internalised.

Oh no! Sounds very much like my mother and I suspect we will have this exact scenario going forward. Finally after three years of her refusing treatments, refusing to go to appointments etc she was finally fitted yesterday with a pessary for her prolapse. He refusal for treatment had got so bad that it was literally hanging down between her legs which meant she could hardly walk anywhere. Turning point was finding a carer she would actually listen to who attended the appointment with her despite at 8am refusing to get out of bed and telling my Dad she was too ill and to cancel the appointment.

Our relief was short lived when I realised it needs changing/cleaning every 4-6 months so I think we will end up on the same merry go round as you with her refusing to go. Even the complaint about waiting for even a short time is my Mum all over. Apparently they should give her priority because she’s old!!

However, as you have POA, can you not set her GP app on your phone? It has been invaluable at times to keep up with appointments and know what’s going on? It also means we can see what’s been said in appointments to make sure she’s doing what she’s supposed to be doing. Neither me or my sister are local but if we know she’s meant to be using cream twice a day or whatever we can tell the carers so they can keep on top of it. My mother supposedly has capacity but she has the memory span of a gnat (complete with the never ending’ ‘no one told me’) and such poor cognitive function that she can’t grasp that refusing to do anything about her prolapse means her mobility continues to be greatly reduced and she’ll be in pain daily.

Roundaboutthehillsareshining, sometimes I pretend I'm in The Truman Show.

I know it says thanks, but the reaction was a genuine round of applause for your performance!! It's a funny kind of dissociation, isn't it?! ;)

to everyone dealing with ER who refuse scheduled treatment then get cross when things get worse or they have to wait

My DM is quite the opposite. She would like to be taken to the GP/hospital for 'tests' for any minor ache or illness. She has a cold at the moment and has called me several times this week to ask if she should be going to the hospital about it. I think she likes the attention but if she didn't obsess about her medication/going to the doctor etc she could have the same time spent with her doing something enjoyable. She is also pushing to be given bowel and breast cancer screening (she's past the age cut-off for automatic screening invitations). She survived cancer previously and I have tried to gently suggest that at her age and with her other conditions surely she would not want to have years of invasive treatment again if screening did show a problem. But she and Brother are adamant she should be treated exactly the same as if she was in her 40s and in good health.

I assume those with ER who are sensibly between these extremes and accept appropriate treatment but don't want to visit the GP every day/accept that they are not immortal do not feel the need to post here!

@PerdreLeBleu , solidarity! Sound so similar, it’s actually quite comforting. I am generally being contacted now, but the problem started when I didn’t have POA and we are dealing with the fallout now.
For those recommending acting a part, every time before I go I tell myself to not argue, that it makes not a blind bit of difference, and I’m getting a wee bit better, but after the night and day of it my patience runs out. I dont have much to start with. It would be so much better for me if I could make myself do it, it’s my own fault. I will keep trying…
(one of the )thing I find most difficult is she asks for confirmation of what she says, and won’t stop asking till I give it. And I feel I’ve let myself down if I agree with the stupid things she is saying, and then I hear her on the phone to my daughters saying… and your mum agrees that… I know they know better, but it doesn’t sit well with me. It is a me problem I know.
@bigdogpaws I can see the opposite problem is just as frustrating!
I was so lucky with my own parents end of life, was horrible but not this long drawn out half life poor MIL is in. Or seems to be from the outside.

@bigdogpaws my mum just feels like she's dismissed when she does go to the doctor.
She's pissed off that she got signed out of the falls clinic and her GP surgery hasn't followed up and checked on her after they took her off one blood pressure medication.
She is still falling over and cross about it.

I'm a newbie to these threads and I recognise, and sympathise, so much of what everyone else is dealing with. I could definitely do with a very strong gin.

I think the extra care place my mother is in can no longer deal with the level of support she needs but I'm really struggling to get her to do anything about it. Yesterday was a particularly bad day because, after a shitshow of accompanying her on a trip to the hospital and back, she had to wait for the carers to transfer her from the wheelchair to her bed. She really was uncomfortable and needed assistance but it needs two people to use the hoist safely so I can't do it by myself. This has been a problem for a while now so, and with her full agreement, I called her social worker to ask for extra support.

I spoke to the social worker and told him what was going on, he then spoke to my mother and she said that everything was fine and she didn't have a problem waiting. The instant she put the phone down on him she was in tears again about how cruel the carers were being for making her wait. What the actual fuck? I'm now left trying to convince the social worker that I wasn't making it all up and that she really does need more care than she's getting.

Apologies for draining out but after yesterday I feel like I've aged ten years. I think she needs to be in a care home as she's pretty much bedridden now and the extra care place really isn't set up for that level of support. But she doesn't seem to understand that I can't just wave a magic wand and get her the support she needs if she just lies to the social worker. Gah!

The well known phenomenon of "performing" for officials. So frustrating.

It's a thing?!? I've got so much to learn...

Definitely a thing. You should have seen the performances my mum did to convince social workers she was coping well with no help. Even convinced them she was managing her finances on the computer when she'd never done internet banking in her life, even before dementia, and my brother was dealing with everything financial. Ditto doing all her own cleaning when there were cobwebs thick with dirt everywhere.

My mum will go to the GP at the drop of a hat (the surgery is about 200m from her house and she’s always going in there). But every interaction turns out to be a catastrophe of huge proportions, if she gets a slightly irregular blood test result, or one needs repeating she spends days weeping and wailing. She too insisted on keeping having cancer screenings “because we don’t get any less likely to get it just because we are old” with absolutely no idea of the implications of a positive screening result.

The cognitive decline is shocking. I have had yet another day of fending off texts demanding to know who she gets her gas and electricity from (I switched her in Feb to save £60 a month and must have had to tell her several times a week ever since) and also demanding that I switch her back to British Gas and Southern Electric “because I knew where I was when it was them”. The fact that she now has cheaper bills, smart meters and direct debit so it doesn’t matter who she gets them from is completely incomprehensible to her. Also I talked it all through with her at the time, did it on my laptop at her kitchen table with her there. She has got capacity but grrrrr.

Sympathy @JeffLebowski it’s a horrible place to be and yes many of us recognise your situation, so welcome and do sound off.

One thing I noted is that you mention your mother is in a care facility. Care homes are different to nursing homes. Does the facility your mother is in have a nursing facility? Nursing homes are set up to cater for pretty much any situation.

I was fortunate that a social worker and HCP told me to look for somewhere for my father that would be able to cope with the worst scenario. That way we would never have to move him.

Keep us updated. We are a generation fighting a battle which our parents did not fight.

@JeffLebowski , I second @BlueLegume 's advice. When I was looking for a place for DM I wanted somewhere that did 'through' care. DM started as residential and is now in nursing care. As DM's needs changed so did the support.

Shuffling back in as I think I could do with some like minded people.

My ER is increasingly needing support and we've been in a Doom Loop of him agreeing to more help to then refusing to pay for it - rinse and repeat. The crunch came the other week when the 1 carer he does have went off sick and my dsis and I had to step in and it was completely unsustainable. Im worried about my lovely dsis as she appears to be his default person to sort problems and it's taking its toll - he rarely calls me unless he can't get hold of her.

I'm finding it hard. It's hard that every visit is a slog of sorting meds, tidying (how 1 person can cause so much chaos in a few hours i dont know), cleaning, cooking and washing up squeezed in between work and my dc. And my bloody phone never stops either pinging with messages from the carer or ringing with a list of stuff We have not done or need to sort or yet another problem to solve.

And now the pharmacy has withdrawn the dosset boxes as he said he has carers (yes but not all the time!) so now that's another task to do each week as he can't manage his meds independently.

Lol my DM was up to the eyeballs in decaying old ladies, which was why her line was always, "put me in a home if you need to!". Bless her ♥️

@Lzzyisgod I'm mainly patient and my ER is much better than a lot on here, but once I did shout at her and tbh I do think it can be a useful, um, communication tool, but only of the last resort.

We've had a relatively peaceful few months since FIL died and MIL moved into the care home (apart from her daily complaints about every aspect of care home life and her expectation that DH will spend hours and hours every day just sitting with her).

During the week MIL fell when getting up in the night and banged her head quite badly. So after two days of refusing to eat or drink she was completely confused and the care home were quite concerned so DH spent a large part of his saturday night in an ambulance waiting outside A&E. Not great when we are looking after our 18month old grand daughter for the weekend!

Anyway MIL is in hospital for a few days to get her "stable" again. No doubt the whole thing will set her back for months. DH only agreed to the A&E visit as there was concern about a possible brain bleed. It looks like a UTI and dehydration were the actual issue.

Thanks @BlueLegume . She's currently in an "extra care" place where she has her own self-contained flat but with carers on-site. There's no nursing facility there so if the social worker agrees her care needs exceed what the place can provide then we'll have to move her and, I imagine, downsize her possessions quite drastically. Sadly we're largely dependent on social funding for her care so we don't have much choice about where she ends up.

She had been coping reasonably well until recently when she spent a couple of months in hospital with kidney problems. Pretty much the minute she got back to her flat she changed to being much more dependent and almost infantile at times. Her memory's got worse as well so I spoke to her GP to see if there was a medication change or a UTI or something that might be causing it but he hasn't found anything obvious. In the meantime I'm scrabbling to take over all the stuff that she used to do for herself and the learning curve is steep.

@JeffLebowski you have come to the right place here. The support I have had over several years has kept me sane(ish).

One phrase I have learned to embrace over the years is ‘new baseline’. Essentially whatever the state of someone after a fall/hospitalisation/illness etc there becomes a time where they are worse than they were and won’t bounce back so to speak, hence new baseline. Accepting the new baselines along the way has helped me expecting things to improve too much so any glimmers of a better day are a treat to savour.

There are some great nursing homes out there, I am unbelievably grateful to the one my Dad is in. The staff are amazing and many of them have been there for decades, which for me speaks volumes. I can’t help you but I will say make sure you take time out for yourself. Cliche as it is ‘you cannot pour from and empty cup’. Keep popping in here even just to vent. There are so many of us navigating this and sharing experiences/advice/solutions really helps.

@Lzzyisgod It's so frustrating when you keep having to go over the same loop about getting outside help isn't it. And self defeating really since the time you could be spending with them doing something to help their quality of life (even if it's just chatting and having a cup of tea) is spent rushing around trying to make sure the basics of hygiene and medical care are done.

@JeffLebowski I think you've found the right place here. Just having somewhere to express my frustrations etc with people who get it has helped me a lot. I can completely sympathise with you- my DM complains to me constantly about how awful things are for her but whenever there is a situation where we could actually speak to someone and do something about it she pretends everything is fine.

@rookiemere I hope you get over your lurgy soon and can understand your narkedness. I find that since Mum has needed help it feels her friends, family and HCP treat me as though my whole life should revolve around dealing with what she wants and they've forgotten that I am actually a fully functioning human who has other commitments, gets ill sometimes and (dare I say it) occasionally wants to do something just because I enjoy it. I've had a few occasions where I've felt unreasonably irritated by well meaning extended family members badgering me about trivial things to do with Mum.