🪳 Cockroach Café Spring 2024 🪳 🪳

[MereDintofPandiculation]

I’ve had a good clean of the place, replenished supplies, and brought in pots of snowdrops and daffodils to remind us Spring is just around the corner.

Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.

If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something mor savoury, so for the moment it stays.

@NoBinturongsHereMate that sounds one holy mess. Fingers crossed for you.

Not sure yet, @MotherOfCatBoy. We were on '1 year plus', and had been for over a year, with the heart. Cancer was only diagnosed yesterday and there are some scans still to go before prognosis and discussing treatment plans.

It is rather, @countrygirl99. Doesn't help that cancer had already been a focus of dementia-related obsessive fretting (he had some high risk factors). I'm hoping the dementia has progressed far enough that the cancer news won't sink in. And there has been a lot more than a fair share of it in the immediate family recently, so it's likely to be particularly distressing for his daughters.

@NoBinturongsHereMate Some difficult thinking about treatment options. Experience here is that hormone treatment (if relevant) is a doddle but even not very aggressive chemo can wipe you out completely. I imagine with dementia it might be difficult to get hold of the long term benefits firmly enough to motivate during short term side effects. And weight control is interesting “oh good, he’s put back on a bit of weight” (cancer induced weight loss) - “but is it just water retention?” (heart). I feel I need a project manager to coordinate the 5 medical teams currently dealing with bits of DH’s body, but it seems that the designated project manager is DH. I imagine you are feeling the same. Good luck!

Golden balls has actually been down and visited mum for a couple of days. I must be fair as he did cover some appointments and jobs so his visit was very useful. Went back home yesterday lunchtime. I went up for my usual weekly visit in the evening (would have organised a different day if he had let me know he was coming but never mind). So I asked mum if she'd been up to anything special "No, just the usual". OK then. A bit later asked her if she'd heard from brother recently. "Not recently. I did pop round to his house a couple of weeks ago and we looked at a load of photos of the first house we bought". Brother lives 5 hours away and I'd be surprised if loads of photos of mum and dad's first house exist anywhere, they never were one's for many photos and they moved from there in 1963. I just smile and nod.

With a two bank holiday weekend looming I'm wondering what crisis there will be this time.

It always seems to be at bank holiday weekends!

Having a bad mental health weekend! My mum is visiting and it's often hard to be around her. She doesn't understand the impact of her condition and how it affects me and my family. She's very critical and she thinks that she can manage her life without help, not realising that it seems that way because of all the things I do for her. I'm feeling like I'm having a mental breakdown. My anxiety had dropped to 3 and now back up to 16 🙈

@Newmum738

What sort of things,are you doing for her ? And what would happen if you stop ?
You really should try to put yourself first if it has such a bit impact on your mh .
You have to look after yourself before you care for others.

Banking, making sure her mobile phone works (she's had a new card so phone not paid and I'm locked out of online banking). Sorting out care and support. Booking everything for her. Helping others to clear the spare room and organising a home sharer. Having her to stay and organising transport, support and entertainment. Trying to sort out the trust my parents put their home into whilst she has proof of capacity to make decisions about it (the company is an absolute nightmare so harder than it could be). Dealing with the guilt that I won't move her closer to me. All whilst trying to work in a senior role and look after a young child. I'm at breakdown point again so think I need some time off.

Feel like I need 6-12 months off from work and care so I can get myself well again!

@Newmum738 after some counselling (I can relate to the feeling of needing months off work just to put myself back together), I now have two new strands of thought that help manage the burden.

does this thing have to be done? Does it relate to my mums core safety or welfare? Is it a must do or a nice to do to relieve my feelings of guilt?

if it is something that must be done, is it me that has to do it?

In this way of thinking, I focus on mum being safe, warm, clean and fed. Everything else is a nice to do if I have the energy. So in your case I would say having her to stay appears to be a non-core task that you’re doing because it is nice - but you don’t have the energy, so why have her to stay when she is so critical and you don’t enjoy it?. Getting her spare room sorted so a carer can stay would appear to be an important task, but did it have to be you that did it, could you have paid someone else instead?

i know that organising and paying others to do things is a task on its own, but it is worth it in the long run because you end up with other people you can easily call on. I also have let go of mums previous very high standards of housekeeping and have a “good enough” standard instead.

@Newmum738 working in a senior role you must be used to delegating and buying in specific skills. You must be used to saying no to stuff you can't take on properly. You need to start applying your work mindset to caring as well or you'll break.

@fufunnelfan that is very very useful advice!

I also agree with you about doing things because you feel guilty.

I feel very fortunate that MiL was only a stress and worry to the extent that some of you are having, for the period between Carers at the flat and the care home, about 4 months. But it was an exhausting and difficult 4 months and I didn’t have the other pressures @Newmum738 . I did get locked out of online banking and as PoA spent weeks trying to sort various direct debits etc I remember in the middle of it all feeling really low when I got through to a young women at the bank who was so kind and sympathetic - her mother ran a dementia care home and she had worked there. She sent me a hamper to apologise for all time wasting and problems they had caused.

as for houses in trusts, good luck, selling of those trusts to people is often unncessary and just causes complexities, I have seen some poor advise and adverts etc and usually the only winner is the salesperson - they may have also sold a life insurance policy (which might be useful one day - but often very expensive). MiL has very small life insurance, it has taken me 6 weeks with PoA just to get some details from Royal London. I have done the maths and she has paid in £2500 and her assured sum is £1500! I understand how they work and why this is, she has lived a long time!

91 this week, needs purée food and help eating, sometimes refuses, sleeps a lot or shouts out for her sister - recognised DH for a brief second then got distressed and confused. He left daffodils in vase (bought by me) and bright coloured card (bought be me) and he bought her some giant chocolate buttons which she seems to be able to cope with - but only one. 3 months ago she would wolf down a chocolate eclair in seconds.

I emailed the home about buying her some new smaller elasticated waist trousers, waiting for them to confirm what size, 3 years ago she was 14/16 and now maybe a 10.

mostly small problems for me now. My own DM now has falls alarm - yay. DF thinks it is unnecessary! DM also said yes to me taking a spare walking frame on our next visit! DF making lots of little mistakes with dates etc - DM repeats lots of stories but can be quite sharp and with it - when she can hear. Luckily they have fab next door neighbours - DM & DF are treating neighbours to a Chinese meal out to thank them - neighbours are driving which is a relief in itself. DM admits her age and problems, DF in denial about his age and DM - thinks she will get better mobility and has insured her car…..

but as a say small worries for now. Thinking of you all. Teenagers were a breeze in comparison.

Do any of you have an idea of the isedulness/feasibility of spinal block instead of general anaesthetic for surgery in someone with dementia?

I know it should be easier on the heart, but does it reduce cognitive risks at all?

@NoBinturongsHereMate I didn't know anything about GA causing an increase in dementia symptoms. I had a guilty panic after reading your post as Mum had GA last year. I have googled and Alzheimer's Society says there probably isn't an increase in risk. They don't say anything about spinal blocks: www.alzheimers.org.uk/about-dementia/managing-the-risk-of-dementia/possible-risks-of-dementia/general-anaesthetic

My Mum called me to tell me nothing and woke me up in the early morning.. Again. Does anyone have any recommendations of a way to stop her doing this for no reason whilst encouraging her to do it if it's vitally important? I have seen GroClocks recommended. We used them when my children were small but they seem to have changed the design since then and made it less clear (apart from the colour). Any other ideas?

I've put a great team in place for her but unfortunately, I appear to be the manager! They check in with me all the time so even if I don't need to do anything, it takes my headspace. This weekend, her PA was clearing the spare room for a homesharer but it's obviously not her stuff and lots of it is my Dad's so she wanted me to say what could go. There is a lot of non-critical stuff though so you are all right that I should start thinking whether it's critical for her safety and welfare. The trust has been an absolute nightmare but the company has been dreadful so I think they will voluntarily step down so I can appoint someone who will be helpful! I've been dealing with them for 15 months now and you would not believe the incompetence!

My Mum called me to tell me nothing and woke me up in the early morning.. Again. Does anyone have any recommendations of a way to stop her doing this for no reason whilst encouraging her to do it if it's vitally important

@FiveFoxes if you find something, let me know. I’ve had to accept the off hours calls as part and parcel of the whole thing. Mum can only make outgoing calls on the phone downstairs now, she can’t work out how to operate the one next to her bed (she’s had that design for 25+ years). The ones in the middle of the night telling me the heating wasn’t working because the radiators were cold were memorable. As she has carer calls 4 times a day I know she’s never more than a few hours from a welfare check, which helps my peace of mine enormously as I live 100 miles away.

I wonder if I’ll ever get used to the phone buzzing without jumping/heart sinking. I actually got one early this morning from mums carer instead, she’s not quite right this morning and the carer wanted to know if she was like this yesterday (she knows I visit on Sundays).

@NoBinturongsHereMate I wasn’t aware of risks of GA directly linked to increase dementia but dementia specialist told DH any trauma could exacerbate it. MiL went downhill after fall and surgery GA, surgery wasn’t successful so the surgeon and anaesthetist strongly recommended spinal for second op. Hard to say if this was less traumatic, MiL has no memory of it. The difference in her cognition before and after the fall is huge, but we will never be sure what caused the fall and whether that trauma caused more issues than GA. Logically I would say GA has more potential to exacerbate things than a spinal - and recovery from spinal is believed to be quicker with less side effects. The anaesthetist is the person to speak to if you can.

@FiveFoxes we bought a dementia clock, lots online, but MiL was quite advanced by then and couldn’t remember how to use the phone, and told BiL she didn’t like the clock so ge had to unplug it. One afternoon MiL direct dailled DH’s mobile 17 times when he was at work and travelling home.! He spoke to her a few times and others she left VM or hung up. He went round and she had no recollection of phoning him.

i feel there should be a way with clever tech and/or Alexa, but maybe not quite there yet….

Thanks, both. It's mainly the heart side that's a concern- but bonus possibility it might reduce the chance of delirium rather than a direct effect on the dementia. Wasn't sure if they'd try it on someone who might forget part way through that he's having an op. Will try to set up a chat with the anaesthetist.

Another day, another hospital trip, another department. Today it is possible skin cancer. DM has been signed off from the neurological and vascular departments and is gradually coming off steroids, which should help the vascular eczema as she became quite bloated but her GP put her on the two week pathway having seen a spot by chance. Blood tests results mean that an echocardiogram and seeing a heart specialist is also in the near future.
Unlike so many on this thread she is still very independent and I live five minutes away but, and I feel so guilty writing this, my life is spent either doing things for her or feeling terrible for not doing things for her! She is 87, hates having to accept that her body is giving up and I am often the only person she sees in a day.
My life is now so limited, I see her, my DH, and people in shops! I find I am forgetting words - like cardiologist! Post COVID fog, stress or dementia? I’m 65 and, for the first time, feel my age and my mortality.

@Okitsme You really must put more priority on keeping up your social network - they are your lifeline. It’s easier to maintain the networks you have than to make new ones

Start thinking what you can “outsource”. Medical appointments with doctor or consultant you’ll want to be with her, but arrange a taxi to take her to a scan. Don’t rush round straight away for things that could wait a day, even if they’re only “five minute jobs”.

Echo @MereDintofPandiculation @Okitsme you deserve your time and your dm may be around for many years- I supported dm for 17.
and your dm isn’t independent- you are providing the “ invisible mending” that keeps her “ independent” What if you were struck down temporarily? Or went on holiday?
look up FOG- fear, obligation, guilt. And start introducing some other support for your dm. There are private carers around who would take her out for coffee/ shopping etc.
and maintain/ invest time in YOUR networks as dint says.

You are absolutely right, unfortunately my social network is no more and I do need to work on finding new things to do.
DM is deaf and also manages to blank out things that upset her so I’m needed in medical appointments to explain problems etc. We have often wondered why she does it and what happened in the past. Recently, as she is looking back at her life, somethings are coming out that point to a childhood that wasn’t as idyllic as she painted and seemed more like the one her sister said, unkindness and criticism.

It's really hard to strike a balance. Six months down the line from MIL's death, we're spending at least as much time supporting FIL as we did visiting and managing MIL. We were at his house four or five times last week. I haven't seen any of my own friends or family since before Christmas.
It's not that I don't get time to myself. Here I am, fannying about on MN. But what with FIL, and DH's health and work issues, and the DC, I'm running out of capacity to arrange anything more complex for my own wellbeing than hiding under a blanket.

On the point of private Carer’s who will visit, take out, chat, or sink it do a shop and heat up a meal, a friend who is arguably over qualified has recently taken on a couple of elderly clients to do just this work through an agency. She had previous high level medical training but had lots of extra training, tesrs annd work shadowing with all the usual safeguarding etc. She is impressed with the training and has just started with her first clients. The agency charge around £30 an hour, not cheap of course, the ‘workers’ clearly don’t get that. But it is something I have in the back of my mind for when DPs need more help. Also we have a local charity that provides similar - free. I know at first many will be reluctant and for some the cost is too high, but worth a thought, especially if it gives family a break.