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.

What we did was delete the banking portal on my parent’s phones and then set them up on mine and my sister’s phones (me Mum her Dad) and put our own phone numbers so we get all notifications etc etc. They just use their cards as normal and we’ve never had any issues (well apart from the constant forgetting PINs which is whole other issue). Having said that, again, because we have access to their banking app we have been able to unblock cards when it’s been blocked due to wrong PIN being used. They’re with Lloyds.

Just checked. If I wanted to I can just change the phone number on the banking app. To those posters who have parents who don’t want online banking get them agree to it and set it up on your own phone. They won’t get pestered with alerts they don’t understand. Obviously tge person needs to agree to you doing that but it makes life so much easier. My sister has access to all my parents accounts online and can move money, pay invoices etc without them getting involved.

Lloyds here too, but because I am also Lloyds it all goes through my online banking, I don't think it would work trying to set up the app separately for her as well as me unfortunately. That is what I have done for her other credit card though. I just need to phone them (again). It seems to be one obstacle after another though, I wanted to cancel my Dad's Natwest Credit card and it took registering LPA on the portal, several webchats, going to mum's house and getting his passport, taking it to a branch, a call to a different department. Everyone I speak to is very helpful but it's like wading through treacle.

I had my DH's a/c on my phone, as well as my own.

I just had to log out of mine and log back in for his.

Bank of Scotland (which is owned by Lloyd's).

I'll have to think about that. I use face id for all banking apps and it wouldn't know which one I wanted to log into and I don't really want to go back to PIN numbers. It is all just a lot of hassle to change one phone number and email address though, so I think I will just make the call on my day off. I will have to get Mum to agree to it all as well and that's another difficulty, because of the anxiety.

Sounds like you need a burner phone 🤣

I do! Then I could get mum to text that all day every day instead of my actual phone. Sorry mum lost my phone.

Well I just suggested changing the number on her account to my number. No she says, I need it for passcodes when I'm buying things online. But 2 hours ago she didn't know what a passcode was. Aargh.

Barclays doesn't allow use of the app for Attorneys. So anything for mum, I have to log on via the website which is a pain.

Hi everyone,

I am so sad to be here but also so comforted by the fact you (we) are all able to share what's happening to our loved ones and ourselves and that it's understood - to a degree, anyway. I feel so alone tonight despite having family around (how helpful they are is another story but they are here so that's more than some have, I know).

My mam is 75 and has had dementia for six years officially although I think it has been longer since the start of change of personality etc. I looked for respite care last year which kicked off a year + of a huge mental health crisis. She obviously (on reflection on the past now as an adult and with more knowledge) has always had fragile mental health and likely mood disorder but had managed to cover and compensate when her memory etc were working and her brain was working with her rather than against her. Anyway she has spent the last 14 months from the respite straight into a mental health specialist home run by the NHS. They have been amazing and tomorrow she has to move on (I should be grateful for the period as they are meant to be there for a 12 week assessment and treatment period)... I am terrified and was made to make the decision on her nursing home alone. I have probably made the wrong decision, I just hope she - and they - can cope. I think people with dementia and challenging behavioural and psychological aspects (many people I am sure!) should be receiving a level of care like she has the last year and a bit which has just about kept the wheels on..can't fight the feeling they are about to fall off. The MH home was an NHS/health facility and now she is back into social care.

Nothing really to ask I am just hoping I cope over the next few days with the transition and of course even more so that my mam can cope. She is much calmer now on risperidone and I am hoping that is doing the heavy lifting as I am so worried that the staff and care and strategies she has been able to benefit from are also a big part of why she is much more 'manageable' now... of course she hasn't improved or got better as that just doesn't happen.

Please wish us both luck! I feel so awful that I am not caring for her but I can't. I have too many other caring responsibilities (severely disabled older son, nursery age child, severely mentally ill brother and then my dad who is doing well but also needs me) and even if I didn't I'm still not sure I could or would anyway. That is a soul destroying thing to recognise in yourself that you can't and/or won't do what would be the right thing to do on paper.

Sorry for rambling. I hope you are all ok, your loved ones too and maybe I'll have some advice or support to offer at some point too from my experiences. Instead I've just barged in with a self-pitying (and mam-pitying) essay!

@apapuchi 💐come in and sit down, this is the place you can rant or vent without judgement from any of us.

We are all on different journeys but yours does sound to be a particularly heavy load to manage.

There is no guilt in your DM being in a NH. It will be the best place for her. You would not be able to offer her the level of care she needs on your own.

Sadly the change in environment may trigger a further downtick in cognitive abilities. The coping strategies your DM will have built up may not work, 'the dining room is just after the picture of a dog' type of thing.

This may not be permanent as new coping strategies are learned but is as well to be prepared.

Sympathy @apapuchi that does all sound very hard but you are doing the right thing. I think my DM is ND and she certainly has extremely high levels of anxiety (which blighted my childhood and adolescence and is now getting worse and worse as her memory goes) I can only see things getting worse. Everyone here is very supportive.

This morning my DF has an introduction to the local Dementia service. I’m pretty sure he will just say how he needs to be doing activities outside the home 24/7
DM (has cancer and awaiting post radiotherapy tests) will say they don’t need anything.
So DSis and I will attend by phone.
Not looking forward to it.

That’s really helpful to know. We’ll be getting to this point soon, I think.

On the care home/nursing home subject, the reality is wherever they go it’s unlikely to be perfect. I went through guilt because DM has deteriorated since they went in earlier this year and many of the staff have poor English which doesn’t help with the situation.

However as DH keeps reminding me they’re much better in a clean, safe environment which is 5 minutes drive away so we can visit frequently without having to try and sort out all their house and health issues an hours drive away.

Unfortunately all the options- particularly with dementia in the mix - are a compromise. What everyone really wants is for the elderly person to revert to their previous selves, or pass away peacefully in their sleep at a great age.

So don’t be too hard on yourself if there’s teething troubles with a location change. You will have done it for the persons best interests.

Mum's first care home, chosen by DB who slagged off all my suggestions, was a disaster. Badly understaffed and when I visited during one of the mid 30s heatwaves there were no jugs of water/squash anywhere to be seen for visitors to give residents a drink and no sign of staff in the lounge/dining room areas (where there were about 20 people sitting) to ask. Room call bells were going loudly and constantly just outside the lounge making it hard to chat. Thankfully after less than 3 weeks they told DB to find somewhere else because she wasn't settled (she has Alzheimer's for god's sake). Her new home is much nicer, more peaceful, always staff around and the residents are much chattier and she's making friends. The staff have quickly got to know mum and are good at learning her likes and dislikes. Unfortunately the cumulative effect of the moves in a few weeks has completely scrambled what was left of her brain and she is massively more confused than she was 2 months ago. She has now forgotten everywhere she lived since 1963 but thinks she is visiting a day centre and will need to go to the supermarket on the way home.
Every so often she completely panics because she can't remember where she lives and I have to walk her to her room. By the time we get there she thinks there isn't a lounge and she is going to be shut in her room so I walk her back to the lounge where she panics because she can't remember where she lives. On repeat.
She insists she goes out a lot but when you ask her what she does she talks about hobbies she hasn't done for 15 plus years.

@apapuchi your post mentions guilt for not being able to do what would be 'the right thing, on paper'. Personally I think it's very damaging that we see so many references (usually from people with no idea of the realities of elderly care, especially with dementia involved) to family looking after elderly relatives being the 'right'/'best' option and comments along the lines of 'they looked after us when we were young, now it's our turn' etc. This narrative completely ignores the mental health and other needs of the carers and the fact that care homes/nursing homes have multiple trained staff members, specialist equipment and experience whereas typically family who act as carers are just one or two untrained people with lots of other commitments who end up burning themselves out trying to effectively work 24/7. Surely the 'right' thing, if you they can afford it, is to find the elderly relative somewhere to live where they will be safe and looked after, then visit and spend time with them as a caring relative.

I have had to say no to taking Mum to one of her (many) routine hospital clinic appointments tomorrow. I told her, and brother, that I couldn't do it when the appointment letter came through a few weeks ago and organised for another trusted relative to take her. They were not keen but they are insistent that she must attend any and all medical checks, appointments, vaccinations, screenings etc offered and did not want to postpone. This week I have had multiple calls every day asking if I can take her instead, starting with a polite 'is there any way you could rearrange other things so you can take me' and moving through tears, pleas, and now 'why are you so horrible, you don't care about me, you just want me to die.' It's clear to me that we are stuck in a sort of no man's land where Mum technically has capacity to make her own decisions but her decision making process is stuck at 'Don't want change. You can't make me.' I am getting to the stage where I feel like I need to say I won't take her ever, just so that she is forced to agree to another option or not go and we don't have weeks of upset every time I can't make it. Part of the problem is that she has a set 'routine' of what must happen on an 'appointment day' involving being taken to her own home (she is staying with brother) beforehand to 'check her paperwork' (the appointment letter) to make sure she knows what to take, what to wear, where to go etc then get changed in to the appropriate clothes get a bag of 'things they might want to see' together etc before she goes. This means whoever takes her has to arrive to collect her several hours before the appointment time (and drive across town several past the hospital once to collect her and again to take her to her own house before even setting off for the appointment, often in rush hour morning traffic). I have a journey of at least 1.5 hours on top of that to get to her town. She will not accept that I have checked her appointment letter, or accept any of the other changes I have suggested to speed up this process so even a 10 minute appointment takes up a full day. On the one occasion that I had to just pick her up and take her without going via her house she had a tantrum in the car and was very distressed throughout the appointment. It doesn't help that brother actively encourages her to insist that I should take her every time- I try to encourage her to see the positives of other options (eg. won't it be nice to see Linda when she comes to take you to the doctors, you love talking to her about her garden) but he tells her all the reasons why it will go wrong if I don't help and how selfish I am for not being there. This morning I have already had 'You've went on holiday a few weeks ago, so you can take time off when it suits you can't you!' and 'You don't care what happens to me- go off and have fun, I'm sure Linda will tell you when I die!'

I'm guessing that the 'I could never put my Mum in a home' brigade are not dealing with this on a regular basis.

Oh god @bigdogpaws that sounds SO hard and your brother is a nasty piece of work for undermining you and taking advantage of you. You are right to stick to this ONE boundary, don’t back down!

I’m getting through the overhaul of DP’s house to get a cleaner in, or at least the ground floor. Have bought a new hoover (me and Henry are now best buds), cleared their lounge, and yesterday me and DH tackled the large under stairs cupboard where they have stored all their paint, DIY stuff etc for 40 years (hoping to make space for stuff that will inevitably need a home when I have a go at the kitchen). Loaded a shit ton of stuff into our van to go to the dump. You can now see the floor in there and walk in without falling over.

Meanwhile DF has fallen over twice in the last week and struggles to get up again. He has made a Gp appt for himself but has forgotten that when I took him to a hospital appt for tests on his balance & vertigo, they referred him to Physio - which he thinks is a stupid idea. To be fair in the long run it probably is, as at 98 he won’t take any action which will improve things and is no longer really able to understand cause and effect here. He’s just old and frail and getting weaker, and besides balance issues his muscles can’t support him well any more. He should probably be in a care home but will resist that til his dying day, so like many of us I am waiting for the crisis that might change things…

I had to control my face when my Mum blithely told a healthcare professional that she will never need to go into a home because she can just have people in to care for her in her own home. As though there is no admin whatsoever involved in that, in her mind she can afford it so it will happen.

As though there is no admin whatsoever involved in that, in her mind she can afford it so it will happen.

But is the affording it at today's prices ?
My mil thinks you should be able to get a cleaner in for 2 hours for around a tenner and that a gardener is happy to work for several hours for £25 !

She's 90 and hasn't caught up with today's prices so won't have them because they charge too much .

It's interesting how easily everyone overlooks the admin and planning involved in these things. For nearly 2 years now I have been dealing with all Mum's household admin and finances (and not in the most efficient way, because she still has capacity and doesn't want to change to online methods etc), organising house maintenance/cleaning/gardening etc plus managing all her healthcare needs, making sure she has adequate clothes/toiletries etc. She and a lot of the extended family dismiss this as 'just a bit of paperwork and a few phone calls'.

Yep, running two households is not just a few phonecalls and a bit of paperwork at all @bigdogpaws. But seeing as it is generally the wimmins doing it it is deemed of no importance as is the four hours spent today taking DF to another medical appointment.

It’s huge isn’t it @bigdogpaws I reckon if you count all the time I spend on my parents admin it would amount to about half a day a week (including all the time spent in endless dialogue with mum because she fusses so much about it all). I don’t have to take her to appointments yet as she can walk to GP and pharmacy and isn’t under the hospital for anything (if she was she is capable of bussing there at the moment), but it will start to happen.

To be fair, DM can afford whatever she wants so she's not going to be penny pinching. She has already started saying things like she doesn't want strangers in her house though, which is definitely going to make around the clock care complicated. And there is a non-negligible chance that she will outlive either DB or me or both of us as there is very little physically wrong with her (apart from eyesight, hearing and brain power) and both DB and I have serious health issues. If she would consider moving into a home at some future stage it would be a lot more secure for her, all we would need to do would be appoint someone (younger and healthier than us) to make sure the care home bill is paid in the event that we can't organise things. If she stays in her own home everything is will be hugely more complicated, lots of little time suckers like organising home maintenance or phoning the care agency if a carer fails to turn up.