Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

DM cannot cope without her hearing aids and goes into a complete panic if they break down. It’s one of the more stressful aspects of life as she is completely dependent on them but continually loses them or gets them wet.

However, I am myself a reluctant hearing aid wearer so I do understand why people dislike them.

I find them immensely uncomfortable (I’ve tried in ear and moulds). They make my ears itch and I have tiny canals so they never sit correctly and after a while they hurt. They also amplify anything tinny like cutlery and dishes in restaurants and muffle the things I want to hear like speech. I’ve fiddled with the settings over and over. They come out if I remove clothing over my head or get caught in hair brushes. I lost one in the garden the other day as it caught on an apple tree branch as I bent over to weed and it pinged off into the air!

I’ve taken to wearing only one as a compromise. I persevere because I’m aware of the dementia connection and because I know it drives DH nuts although he acknowledges that even when I’m wearing them I still don’t catch everything he says.

I’ve lurked here for some time on and off and I think it’s guilt bringing me to post - and a dilemma.

This will sound silly but I have been enraged by being asked to put a mattress over on a bed I freshly changed, having cleared it if a monumental pile of junk and laundry only a few weeks back. It has not been slept in since. I’ve been told this is ‘only one small thing’ I am being asked to do.

Apparently it is the lack of a mattress protector that has meant she wouldn’t sleep in it and has continued to sleep in her chair (not the newly accumulated junk and laundry now on top).But it is not and she will not sleep in it no matter what I do to help. And everything I do for her feels like this - utterly pointless.

she tells me she does not need help despite not emptying rubbish, not running the dishwasher, not cooking, eating regular meals or putting washing away. She can’t change her own bed. So I have decided that if she’s coping, then she can cope and I won’t go round tomorrow. But I feel bad because I always have and because I think there is early dementia exacerbating what have been ongoing behaviours.

@Runaway1 This does sound like perhaps the start of dementia- do you think your DM could be persuaded to go to the GP for a check up? Regardless, I totally understand how you feel and something I learned from this thread that has really helped me is 'If you have to choose between guilt and resentment, choose guilt'.

My DM often claims that she is prevented from doing things she knows she should (or forced to do things she knows she shouldn't) because she needs someone to do something for her first to make it possible. Eg. Can't go out for lunch with friends because she needs someone to take her to buy new clothes first (despite having lots of nice new clothes), has to pile up junk in the spare room because she doesn't have the right sort of bin bags etc. If someone does what she claims she was waiting for, there will be a new 'reason' the next day. I try to work out what's really behind what she is doing and try to help her address that but have to accept that whilst she has capacity to make her own decisions often there is nothing I can do, but nothing to be gained from running myself ragged trying to do everything she asks me to do.

@bigdogpaws thank you for your words of wisdom. Yes, I think this is what I need to do - react less from an emotional place and let her do what she wants to do, which is probably mostly to express anxiety. I have to accept how things are, not try to fix them.

Regarding the hearing aids, I think they can be very difficult to wear - my mum won’t wear them either although she really struggles to hear. Ironically she did try them the other day and accidentally flushed them down the loo!

@Runaway1 , I feel your pain. It's so frustrating, isn't it. We want the best for our elderlies, and it's difficult to accept that they don't always see it like that.

It's difficult too to know when cognitive decline starts to impinge on a preexisting lifelong difficult personality and stubbornness.

Re the bed, have you asked your mother what the real reason for not using it is? Or is she unable or unwilling to express that?

I have sympathy for those with parent(s) who will not use hearing aids. I don't even bother to try with my father. He has never listened to anyone anyway so being literally deaf has made no difference to him.

There is zero point in bringing up the link between dementia and hearing loss either. I am afraid I am reciprocating the attitude given to me when I was young. He showed no patience to me and dismissed any concerns at every turn so I am not putting the energy into wanting to help his health-related issues.

I have stopped repeating myself but my enabling mother always repeats what I have said to him. Thankfully she has stopped putting him on the phone when the latest tech-related 'emergency' arises as it was a waste of time.

It doesn't stop his monologues though. Those can go on for ungodly amounts of time. I go over there to sort out issues and I have to have a blow-by-blow account of what happened even if it has no real relevance to the situation. It is utterly soul crushing.

@PurgatoryOrHowINeverLearnedToStopWorrying I would be tempted to say "sorry, I didn't catch that, could you repeat it" all the way through his monologues. He might get fed up and storm off.

Mum has been going to a day centre on Saturdays, only a couple of times so far, and has decided it's not for her. But didn't tell me until I arrived at her house to pick her up. So I said "That's fine, it's your choice. Did you tell the organisers that you wouldn't be back when you left last Saturday?", knowing that she's too passive aggressive to ever take an action like that. Then I pointed out that any time during the week would have been a good time to tell me that she wasn't going anymore, instead of waiting until I got up early on a Saturday and pitched up at her door. So then she went full on martyr, and insisted that she didn't need me to do anything ever and would just stay in her house on her own because she didn't matter and everyone would be happier without her. So I said, "OK, I'll bear that in mind" and came home. I'll pick her up tomorrow to take her to lunch at my DB's house and she'll have completely forgotten wanting to be left in the house all alone.

DM is also one of those who refuses to wear her hearing aids so every time I leave she will say something to me as I leave the room but then can't hear if I reply, forcing me to walk back into the room and repeat it. I have taken to pretending I haven't heard and just go.

@Runaway1this is one of the saddest stages, where you’re doing as much as you can, but they actively reject it. They are trying to prove their independence in their own way, but really all they’re doing is hastening the end of any actual independent living.

Take a huge step back, contact social care about your DM. It’s really hard because of course you want to do right by your DP, but if they reject everything you do, well realistically there is nothing that you can do that will help. Lovely in theory I know, hideous in real life.

Thanks for you kind words @eclipsing. There have been so many reasons for the bed - the wrong bed, didn’t have a mattress topper, fear of slipping - all very understandable, all resolved with our help, none led to any change. I think it is really that she falls asleep in her chair. I need to find more compassion and patience as it is likely cognitive decline.

@rookiemere thank you for your kindness and practical advice. I think you’re right, an assessment is needed. I will go round tomorrow and apologise and start to talk about this.

It's probably not this, so apologies, but does she sleep in her chair with the lights on all night? My Granny hated turning off the lights and leaving the room in darkness to go up to bed, it really worried her. My dad got timer plugs for the two lamps in the living room and set them for half eleven, when she would have gone to bed, so that she didn't need to leave a room in darkness late at night.
And this, absolutely this from @rookiemere They are trying to prove their independence in their own way, but really all they’re doing is hastening the end of any actual independent living. My friend who is a vicar says this too.

@Runaway1the person you need to be most compassionate to is yourself. It’s a bit like the mantra for families of alcoholics - you didn’t cause your DM to have cognitive decline and you can’t cure it - unfortunately unlike alcoholism ( which was probably not the most useful analogy to use) your DM has no control either. So when you’re making decisions often what is best for her may not be what she wants to do. Sometimes taking a step back helps professionals to become involved, sometimes it doesn’t, but honestly you are doing the best you can whatever you do so hold onto that.

Like I said, I've been telling my mother for a long time that in my lengthy experience, those that are best able to maintain independence are those who accept help whilst problems are still small.

But of course, she says this doesn't apply to her because she doesn't need any help ----

Does anyone feel guilty when they tell their loved one no? My mother keeps asking to be taken out and is really draining when she asks over and over. I visited x2 daily. Sometimes we go for a drive. If I don’t take her she gets really annoyed.

Just posting as an alternative to actually banging my head against a brick wall. Thinking about Mum's long term care feels like watching a car crash in slow motion, with no power to do anything to stop it.

Mum's dementia medication has significantly reduced her anxiety and delusions, which is great, but she still doesn't feel that she can ever live alone again. She had been starting to come round to the idea of looking in to paid carers and/or residential care options but she is now once again adamant that she must live in her own home and must not be cared for by 'strangers'. Brother is still promising that he and his family move in with her and that she will never need any formal paid care. His solution to what happens 'if' (he still seems to think it's unlikely) her needs increase is that they will pay the daughter of a family friend to come in as needed to take care of her whilst he is at work. This person has no training or experience in elderly care, has children with additional needs (one currently home schooled) and although she is lovely and has often offered to help out if we need could not possibly be expected to be Mum's only day time carer as the disease progresses. He is not willing to have any further discussion on the subject. He also refuses to encourage or facilitate Mum going to any day centres (I have found one very close to her that would collect her and drop her off, so no effort needed from him) or social groups- he says she has more than enough social contact with his family and her existing friends. So she spends most days sitting alone during working hours, with no one to speak to and limited activities she can do herself due to poor vision and increasing cognitive issues.

I am also attempting to get LPA sorted whilst Mum still has capacity. Brother is adamant that he should be LPA but it seems clear that he thinks a) it's all unnecessary as Mum won't really lose capacity fully and b) if he has power of attorney and he lives with her as her carer he can spend her money as he wishes and does not need to keep any records, since she would otherwise have to pay for carers so it would all be spent anyway.

Of course, since Brother is promising Mum exactly what she says she wants (but not necessarily what she needs) and she has capacity to make her own decisions, there is absolutely nothing I can do . Neither of them seem willing to consider that if Mum had a bit more outside help and social interaction we'd probably be able to give her a better life for longer. But I think it's only a matter of time before Mum needs more than they can manage, by which time her finances will be in a mess and she may not even have LPA organised.

So much wisdom being shared here so nothing to add but thanks and to pour @SockFluffInTheBath a glass and cheers solidarité 🥂
The bar is fully stocked for anyone who needs it 🍸🍸🍸

<opens the cocktail 🍸 bar> I used to know how to make at least 40 different kinds, so there surely must be something I can make in here for you all. Requests please 🧑‍🍳

I highly recommend taking a step back. I have had to due currently to my kids SEND needs and DH's incapacitation due to his injuries. Hasn't stopped the incessant phone calls throughout the day and requests that DH come and put him to bed, but I don't have the capacity to give it my energy right now. DF has carers, is fed and watered and has been taken to his many medical appointments, the world hasn't fallen apart due to me and DH not being there everyday. That will have to do.

@Choconuttolata a Harvey Wallbanger please. It takes me back to living in Hull in the late 80s.

DM is coming up to the 2 year anniversary of her slow car crash starting. 2 years since I last had a properly sane conversation with her.

DB still talks about them having conversations about cricket or current affairs. Yet, when I visit, DM either sleeps or talks about meeting with imaginary friends or long dead relatives. DB is as deluded as DM.

I try not to think about the situation too much as I find myself getting angry especially at DB. There is something obscene about the degree to which he is enmeshed with DM.

I’ve had a rather low couple of days as the frustration outweighs any joys of life. There’s a lot going on at the moment. Herding cats, for the demented self proclaimed Queen of the Cats. Sigh.

Anyway, I was mulling in a self pitying kind of way, on how DH and I have been good to our parents, helpful, supportive etc. All it’s got us is the post of problem solver. We are the ones who step up, resolve, try. And we get told all about all the problems and moaned at because life isn’t the way they’d like it to be.
The reward for hard work has been more hard work. We have siblings. They don’t step up and actually make things harder.

So if anyone is at the start of this process, step back.

@GnomeDePlume I know what you mean about the level of enmeshment. My Brother has always been so dependent on Mum that I think it's actually stopped either of them having a more normal life (Mum spent so much time and energy on Brother as an adult that she didn't have time for any hobbies/interests or socialising with friends of her own, whereas Brother has never learned to be independent or to deal with the consequences of his own actions). I think this making things more difficult for both of them now than it should be and is a big part of Brother's refusal to acknowledge reality.

@PrizedPickledPopcorn I'd second your advice for anyone at the start of this process to step back. I think lots of us drop everything else to be there to handle a crisis with our elderly parents and never get any breathing space to really assess our part in the long term plan; it's just assumed that we can continue indefinitely.

Reading back through the thread, I realise that my previous post makes me sound like a bit of a selfish brat, complaining that Brother is planning to be Mum's carer but not doing it in the way I think he should. Unfortunately the reality is that Brother firmly believes that he just instinctively knows best about everything and will never do any research or seek any advice before pushing ahead with a course of action. This frequently leads to disaster (which he claims was totally unforeseeable and/or someone else's fault) and then he expects someone else (previously our parents) to sort out the mess. My current frustration comes from the fact that I can see that right now we have time to get a proper plan in place for Mum's longer term care and to work out finances etc and gently ease her in to new routines and social groups etc. Brother's 'It will all be OK, we don't need any of that' attitude means that when her needs become greater than he can manage he will expect me to sort out an alternative care plan with no time to plan or look around. I can see that this will be more more distressing to Mum and incredibly stressful for me. We had a similar issue when Dad first passed, where Brother promised Mum that he would deal with all the funeral arrangements and make sure that she had someone with her at all times for at least a month. After the first meeting with the funeral director (intentionally set for the one time I couldn't go) he declared that he'd 'Done all the difficult stuff' and needed a break so I had no real choice but to take over, constrained by decisions and promises he had already made. After the funeral he had the audacity to complain that I should have held the gathering afterwards at Mum's house and done all the catering myself instead of paying a small amount to hire a venue/caterer

@bigdogpaws your post didn’t sound selfish at all. It was entirely evident that rather than moving in and becoming your mum’s carer, he’ll move in, promise her the earth, do nothing useful, spend her money then declare he’s done his bit so everything else (transport to medical appointments, liaising with medics, helping her with personal care) is someone else’s job.

@bigdogpaws like @PrizedPickledPopcorn said. You’re not selfish, you’re a planner with also a life of her own. Your brother is an entitled selfish arse.

Unfortunately you are between a rock and a hard place: but if both of them continue on this path you should step way back. Sadly I think we can all see this means you will lose your share of your Mum’s home one day, but not being involved might buy you more peace. And the ability to say, I told you so…

This is like the game involving the hoovering. She needs a new hoover but can't find the right one for her to be able to push around. (My sister apparently took her to the electrical store but she actually refused to pay the price of a hoover. I suggested 2nd hand/recon, but the rules of the game ban offering solutions to problems so that was Bad). She actually hasn't had a working hoover for at least 6 years, to my certain knowledge, because she got very grumpy with me when I offered to hoover during covid then discovered that I couldn't for want of a vacuum cleaner in the house. Yet we are supposed to believe that she really needs and wants one and the only reason that she doesn't hoover is because she hasn't got to the shops yet.

OMG!!!

I wrote the above last week.

She's now bought a hoover!! (Well, actually a Bosch but I'm not being picky)

My flabber is well and truly ghasted!

PMSL @Eclipsing That will teach you to never underestimate her ability to wrong-foot you, even when you're complaining in private on here.