Cockroach Cafe - Autumn

Hello.

Can I sit down with a hot chocolate and listen to the talk, please? My 77-year-old dad is in the process of being diagnosed with dementia. I’m not ready to talk about it in detail but I think I need to be here.

I agree with @EmotionalBlackmail. do think about it very carefully. Looking after elderly parents can literally be a full time job! I’m actually regretting not emigrating (like my brother did!😂). If you don’t work and are happy to be a full time carer that’s fine but if you have a job as well as your family it will become untenable.

Both me and my sister live about 45mins in opposite directions from our parents and there is often an expectation that we will take them to appointments which in actual fact would be a 10/ 15 minute taxi ride each way for them (which they can easily afford) But for us could take 3/4 hours out of our days and are now happening almost every week. We both have families, full time jobs and heaven forbid social lives! The more you do for them them the more they expect and it does them no favours in the long run because by doing nothing themselves they become more incapable.

I'm going to go large and have a Manhattan tonight.
I've been fuming all day about the 5 months wasted refusing painkillers but will only talk to DM about it when I can be calm and rational. She is her own worst enemy at times, which is her decision I guess but not really reasonable when I am the one picking up the pieces all the time.
Anyone contemplating moving closer to elderly parents, think very very carefully about what and how much you are prepared to do. I really wouldn't move teenagers unless you have to or unless they are keen on the move. Most will resent leaving friends behind and may struggle to settle in a new school. If the new area is more rural/has less public transport/fewer facilities then your DC may really not enjoy it unless they are into countryside pursuits. It could really damage your relationship with them if they feel forced into a move and feel their needs and wants are being given less priority than those of their grandparents.

Yes, the no painkillers thing also rings true here actually. ‘I just don’t like to take them, really’. Fine, but do you like to be in pain (and be snappy and make everyone miserable because of that)?

@outofdatepantryitems I agree with pp pointing out that proximity can mean a greater number and frequency of tasks to do for ERs. But I think the issue of moving teens to a new school is bigger. Are you contemplating this move solely to look after the relatives? If there are no other pressing reasons, then I would think very carefully about which relationships you want to invest in. In a decade’s time, will you be glad you did this?

I wouldn’t have dreamt of moving DS for the benefit of my elderly DPs.

Hi , I’m new to this thread but not new to MM.
The mention of not taking painkillers really resonated with me. My DM is 90 , frail , heart issues and has dementia. She was diagnosed earlier this year . I’m her carer although she has carers 2 day for personal care and meals . She won’t let them do housework or laundry as her daughter (me) will do it . She then complains that they don’t do anything!!!.
she’s also got Osteoporosis and gets back ache , but won’t take painkillers as she doesn’t want to rely on them. And when she does take them , she takes one 200 mg and says they don’t work. So it’s interesting that others with ER have a similar experience.
I also have a golden balls brother who lives in Ireland and sees her about 4 times a year. And a sister who’s a 2 hour drive away and only visits mum when I’m away which is about 3 times a year . And yes I do resent that I do everything for our mum and they swan in occasionally.
Anyway thank you for letting me rant . Tea with milk please x

@Eclipsing Thanks for the reply. Mum's been having the treatment for at least 2 years now, so it sounds like it may come to an end before long but would be something to make sure I highlight as important if I am no longer the person organising it for her.
She decided to stop driving almost as soon as her vision problems started, which I am now very grateful for because she certainly wouldn't be safe to drive even if her vision was perfect. We did have a discussion about whether we should remove the keys to DF's old car just in case (she has refused to sell it since he died and seems very attached to it) but opted for disconnecting the battery instead so she doesn't have to know.

Do think carefully about moving the teens even if it isn’t peak exam time. They’ll have established friendships and routines. My parents prioritised elderly parent over me when I was a child and I still resent how much of my teens was ruined by this.

Also be wary of how much you could be dragged into if you move closer. I have moved closer - gone from 5-6 hours away to 2-3 hours distance but I wouldn’t want to be any nearer. If you’re very local they come up with the expectation that you’ll take them to every hospital, GP, optician, dentist appointment, take them shopping every week (with an obligatory stop and lengthy chat about them in the Tesco cafe) and be on call to sort out the problem with the boiler, TV remote, phone that doesn’t work.

How much free time do you have? And are you prepared to have it taken over?

My mother has advanced MD and has had injections into one eye for this. The other eye was deemed too bad to treat by the time she was seen at the hospital.

She has no dementia diagnosis but (like all our ERs, I think), definitely has cognitive dysfunction. She managed the injections pretty well though.

Eventually there came a point where the treatment ended as the consultant felt that the situation was stabilised and there was nothing else to be done. I can't remember how long that took - about 18 months in total, I think.

I think my DMs eyesight has declined a bit further since then but of course other issues come into play, not least the cognitive problems. Also, injections are only suitable for wet MD and that can coexist with dry MD, for which there is no treatment. So yes, eyesight can (unfortunately) continue to worsen despite the treatment stabilising the situation that it's meant to treat. But I don't think the injections would be given for ever and a day; the treating team will assess each time and eventually they're likely to say that they've gone as far as they can.

My mum was very anxious around that point too, and I can't blame her; losing eyesight really does impact on a person's ability to care for themselves, and of course our ERs tend to be past the point of learning new tricks and new gadgets etc to help with limited vision.

One thing - is she still driving? You can still be legal to drive up to a point with MD but the combination of that and cognitive decline can be a killer (literally) behind the wheel, even if the person thinks they can drive.

Generally any kind of sensory loss amplifies the effects of dementia, so I'd expect her team to be willing to continue until she's not able to tolerate the injections. Even if the treatment is just holding it at bay, she will have better medium term quality of life with some vision than vision that is deteriorating quickly.

Just wondering if anyone has any experience of injections to treat macular degeneration when the patient suffers from dementia? My DM has been having a check up every couple of months for several years, which often results in her being given an injection in her eye. Afterwards she sometimes has some discomfort but she is always extremely 'careful' for the week after the injection (not wanting to go out or see anyone to reduce the risk of infection etc). Currently she understands the checks and the procedure, and doesn't seem to find that distressing. The week of being 'careful' I think is probably unnecessary (I've not seen any official advice to that effect) but again doesn't seem too much of a problem. Mum's vision is pretty bad and but I think we're approaching the stage where this is more about the dementia than the physical eye problem- the last time she went they said the macular degeneration had not changed but she was adamant that is was much worse. She's also finding it increasingly difficult to follow the instructions for the tests. I'm wondering at what stage people generally stop having the checks/treatment in this situation. Or does it continue indefinitely? It's difficult to discuss with the HCP because Mum hates the idea of stopping any sort of treatment and rather enjoys the attention of it all.

For complicated reasons relating to family politics etc, I an expecting to be removed as a contact for these appointments before long so as well as getting an understanding for myself I'm wondering whether this is something I need to try to make sure someone is aware they need to keep on top of when I am no longer sent the details, or whether actually it's something I should be trying harder to discuss with the consultant whilst I am still involved.

My parents certainly believe painkillers are some sort of defeat. A weakness of will. DF has extensive dental operations without any pain relief, he can't see the need. DM is worse as she believes all doctors are out to rip her off (in Ireland where gp care wasn't free until she qualified for old age and disability benefits), so is difficult about any medication. Her dementia is making it harder, she doesn't believe she needs any medication at the moment.

Oh gosh. This is an on going battle with my parents but generally due to my mother’s stubbornness and a refusal to listen to anyone’s advice. We’ve had a life long situation of her refusing to take medication although some of it is linked to a pathological refusal to listen to anyone’s advice so she would rather be in pain than take a pain killer that someone else has advised her to take.

If she complains of being ‘in the worst pain ever’ and you suggest she takes a painkiller you’re immediately met with ‘they don’t work’ or ‘we don’t want to live on painkillers’ even though refusing to take them results in time wasting trips to A&E or calls to GPs. Unfortunately because she’s an overbearing bully my Dad goes along with what she says. We had one farcical occasion where they rang 999 (but got told to ring 111 who sent out paramedics) because my Dad was in so much pain he couldn’t walk. He’s got long-standing arthritis in his left leg. My sister was getting hysterical messages about how he couldn’t walk and they were going to take him to hospital. Apparently when the paramedics arrived he jumped up off the settee and was walking around happily and had to be told to sit down. Paramedic explained to my sister that he’d checked his medical records and his leg had been checked out on numerous occasions and he’d been told to keep moving and take the co-codamol he’d been prescribed. Apparently my Dad said ‘they don’t work’ despite having not taken any that evening.

The following day my sister messaged him to take some paracetamol when he got up to pre-empt any pain that day. Several hours later she gets a message that it’s a miracle and he’s had no pain whatsoever and he can’t understand why! It’s infuriating but alcohol does play a big and negative part in their decision making.

Re painkillers - I wonder if the average nonegenarian was brought up without much pain relief available (when did paracetamol become widely available to buy?) My mum will unwillingly take 1 500mg paracetamol per day whilst complaining bitterly that they don't work.

I know she had problematic side effects with stronger painkillers she was given after one medical episode and I think she's worried about that again. But her cognitive difficulties seem to mean that she can't grasp the differences between different painkillers, no matter how many times she's told.

Having said that, I don't doubt she is in pain with arthritis and I'm sympathetic. But she has the tablets, she just doesn't take them.

I (selfishly) thank my lucky stars on a weekly basis, if not more often, that I'm 250 miles away from DM.

My relationship with DM was very difficult until I was in my 30s (much better now but still uneasy!) and I made an active decision then to keep my distance, knowing that if DM needed help when she got older, it would largely let me off the hook.

I'm aware that many people would think me a conniving cow for this but that's how it is.

What @rookiemere says. We had w sets each and hour away in opposite directions and there were many times we were grateful for the distance. We could say "I'll sort that minor administrative matter/ the problem you have with your computer when I'm over at the weekend" etc. If we were 5 minutes away we would have been back and forth every day. It also meant DH could go to his parents and I could go to mine at the same time and have an excuse why we hadn't both visited (because obviously we weren't there for "nonexistent" care). Each could say oh they had to pop round to their own to sort out a problem. Otherwise between work and parents we'd never have seen eachother.

@NeedMoreTinfoil My DM also scored highly on the GP cognitive test. Luckily the GP listened to my concerns and DM was very much onboard with getting further tests (at that stage she knew there was a problem and was keen to understand what) so DM was referred to the memory clinic. There was quite a wait for her appointment but when she had the full assessments and brain scans etc the diagnosis of alzheimers and vascular dementia was very clear. The diagnosis obviously doesn't solve everything but in DMs case she has been given some medication that helps with some of the most concerning symptoms and more importantly we have been offered lots of advice and signposted to loads of local support groups/social groups etc, plus it means you are in a better position to plan for what's likely to happen next. Getting her and other family members to accept the advice, access the social groups or make sensible plans for the future is the challenge now, and not one I am winning.

@outofdatepantryitems That sounds like a lot. Before you make any decisions about moving your life to be closer to them, I'd recommend you and your DH are very clear (in your own minds if nothing else) about how much assistance you are willing and able to provide to your ER as their needs increase. Being further away makes visits more difficult, but the other side of that is that it imposes a boundary of sorts. If you are living closer will there be an expectation that you are available to deal with everything? Having a bigger house and more money to spend on other things sounds great but are you likely to be able to enjoy that or will you spend years feeling overwhelmed by trying to meet the needs/wants of 4 elderly parents. I, like many on here, have found that helping elderly parents can become like 'boiling a frog'. As their needs increase there's always 'just one more small thing' that over time can take over your life. If you do decide to go ahead with the move, I'd suggest that you have a sensible conversation with both sets of parents about what help you would be able to offer and make sure that they outsource tasks where possible. I think it will be very easy, especially if they are feeling unwell and vulnerable, for all of them to think 'Ah, outofdatepantryitems is just down the road now- all our problems are solved'. Living closer could, of course, be a great benefit for all of you but I think only if everyone understands that it's intended to make it easier to see them more often and provide the support you currently do not as an alternative to a proper care plan.

@NeedMoreTinfoil expect the domino effect. One thing happens then another and another. You get busy standing up the first domino but while you are concentrating on that, the others have already started falling.

Solving yesterday's problem as @TheBroonOneAndTheWhiteOne says.

Going to mull this one over for a bit. Thankfully any move isn't imminent.

@NeedMoreTinfoil
The trouble with that is that when the move is upon you all, the needs will be more pressing and different.

It'll turn out to be another example of solving yesterday's problem.

@Lzzyisgod that's interesting re the link between pain and cognitive ability. I hadn't thought of that. Fingers crossed DM actually starts taking some painkillers and it helps.

@ElderlyDilemmas I have a feeling we will be back for re testing at some point. I am sort of perplexed at the moment as I know DM isn't ok at all at times. It is also important we get her planned house move right so she goes somewhere with the right levels of support. I am not convinced independent living with light touch support from onsite staff will be sufficient. Granted she will be closer to me, but likely still housebound and completely dependent on help with shopping/going to appointments etc.

Going to mull this one over for a bit. Thankfully any move isn't imminent.

@GnomeDePlume No they’re not, they threw their toys out the pram and flounced. It would have been nice to shift the house, but probably not worth it for all the added grief it would cause. A nice clean impersonal transaction will be better all round.

That happened to me and Dmum with the cognitive test. Scored 27/30 which left me gobsmacked. But 6 months later (last week) and she is down to 17/30 and when she protested the GP kindly explained that he had talked her through the next steps 3 times in the last 10 mins . At last I feel believed but it is sad.

Thank you all so much, honestly it makes more of a difference than I could have imagined to be backed up by people who really get it!

@Exhaustedpickle You’re right, of course - it would be nice not to have guilt or resentment but I think that ship has sailed.

@roundaboutthehillsareshiningthanks for the practical info, all really useful points. The trouble is if I start to help, when they can’t have what they want when they want it I fear it will be my fault!

@EclipsingI think they might be, or at least expecting to be driven around and to be helped with things. They’ve just been absent for so long, even when the DC were small and we would have loved even an afternoon off they never offered to help. I know it shouldn’t be transactional, but….

@rookiemereI hadn’t even thought of that, but from what they were saying and the irrational entitlement they were showing, that could quite easily have been the result. I think they’re set on coming, but I don’t have to expedite the process.

@KirschcherriesThat’s good advice, I think renting will be a hard sell but I’d rather a landlord has to deal with their bitterness and entitlement than me.

PS I'm also sending 💐💐💐 to you all. Dealing with these elderly relatives is harder than anything else I've done.