Cockroach Cafe - come and try our new sunroom

[MereDintofPandiculation]

Welcome, come and see our new sunroom/conservatory, open just in time for the colder weather, and opens straight off the Bad Daughter’s room.

Anyway, come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

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. So cockroach mes amis/amies, and may you all live to fight another day.

@countrygirl99 I can't imagine how tough that is while you are dealing with your own grief as well.

When you have the meeting about her needs can you suggest it along the lines of "the shock has meant your memory is poor and you need a little bit of extra support for the time being"?

Everything we have done with my mum has been "just for now" because she can't grasp time at all.

I think we will have to take that approach. She is adamant that it's only DB1 who thinks she has alzheimers as she has forgotten the appointments with the Consultant.

That sounds really hard Country.

I managed to see DM last night, and she seemed more like herself than she has been since the stroke. In that she spent the whole visit moaning and criticising anyone and everything. Any guilt I had been feeling was swiftly negated.

I had forgotten I had two appointments today - one with the counsellor and one for a zoom meeting tonight. Just had an hour with the counsellor and feel exhausted. I hope I never put my kids through all this.

@countrygirl99 so sorry you're going through this. It's a proper double bubble isn't it. I remember that stage of dementia with my mum, it feels like being gaslit doesn't it. Hard to keep your composure.

I spent the morning with my mum who was awake the whole time. She's bed bound and seems stable still, managing to drink sips of water or tea without coughing too much and has a little soup when she fancies it. She was talking but making no sense at all today. I got the photo album out and showed her photos of when she was younger, which she seemed to like. She was talking about Bethesda today. No idea what that was about.

@freshcarnation

This going to sound bonkers, but did your mum ever have TB as a youngster?

I only ask because my dad once started muttering about a place I'd never heard of which turned out to be the rehab sanatorium he stayed in when he was ill, in Kent.

I can't remember what it was called, but there's a Bethesda medical centre in Kent that's been there since the 20s so just wondered if your mum had had a similar experience.

Could just be a religious thing if she's a churchgoer.

@countrygirl99 I'm so sorry you're having to cope with your mum's dementia on top of your loss.

Nothing much to report here so will just wish everyone a week that improves and many 🪳🪳🪳

I hunk you could be onto something @NewYearNewMinty. She's certainly not religious and the Kent connection is there..

Could I join if I may please?

My elderly mother moved to be near me last Summer after my cancer diagnosis. She had never been happy in her previous town, where she and my father retired to 25 years ago. She moved here with the purpose of helping me, yet the only 'help' she has given me so far is accompanying me in the car to my appointments and using that time to offload her latest list of complaints. I try to see her most days for some company, but my main role seems to have evolved into the person she can unashamedly and constantly moan to. She seems unaware that I would like nothing more than to be able to do simple things like browse in the high street, go out for the odd meal, have a coffee with a friend, and lead as much of a normal life as Covid permits, but I'm simply not well enough. I feel I am being punished for having cancer, yet she treats my condition with the contempt of a cold. She can manage to look after herself, just about, but needs an enormous amount of support with shopping, using the computer, admin in general, working new appliances, I could go on. She has never been keen on housework, to put it mildly, and this coupled with appalling personal and food hygiene is so much more apparent now that she is local. She also has a shocking temper, sulks like a teenager when things don't go her way (most of the time) and is generally thoroughly unpleasant to be around. Before she moved, adult DD and I were treated as 'visitors' and so shielded from most of this.

I know she's lonely but any suggestion of joining a club to make some friends is met with resistance, even though she knows I would take her. The other day I suggested she rang one of her old neighbours for a chat, 'Sheila would love to hear from you' and she triumphantly told me, 'well, I wouldn't have anything to say', well that's me told. She just wants to moan and doesn't want a solution to anything.

I'm so grateful to have found this group and thank you all for having me.

@Fantasea welcome and how are you doing? Are you still having treatment?

I can't imagine how tought that must be for you.

My mum is similar in the using me as a verbal punchbag/therapist and being reluctant to do anything to help herself...it's so frustrating!

Do you have any other support for yourself?

Why do you see her most days?

Hello @Fantasea sorry you have to join us with the double whammy of elderly and cancer.
I’m in a similar situation- supporting dm up the road plus going through cancer treatment.
It has made me step back and be more selfish, and dm does slightly pause before launching into mega moan.
All my medical team have told me firmly to put myself and my health first. You must do the same. Back away.
She can get a cleaner. You must go for coffee with friends. You cannot make her happy.
Contact Macmillan etc for counselling support.

Well yesterday was "fun". Mum phoned (again) to tell me dad had died and panicking about where to start organising the funeral while I was driving up there for the meeting with the celebrant that she had forgotten. When I got there I had to explain that we had all been to the funeral director's office, that we had already been chosen the music, coffin, flowers etc and just needed to go through everything with the celebrant and tell him about dad so he could talk about him. Good job DB and I were there or the poor celebrant would know nothing except dad used to like showing chrysanthemums which he stopped doing before I started primary school. There must be people with dementia who don't have family to help, what happens?
After lunch it was social services to plan help for mum. Which she absolutely doesn't need. Oh no, she always remembers to eat - the drastic weight loss without medical explanation is a total mystery, just happened. And she has a lively social life despite not picking up on her previous activities after covid restrictions lifted. And her friends often give her lifts to clubs social events despite having given up driving a year ago/died/gone into homes etc. And she has no problem remembering what day it is despite turning up for appointments on the wrong days, constantly asking what day it is. So we left it at 2 visits a day to remind her to eat (which she constantly tries to cancel) and us encouraging her to go out more. I have had a chat with the only one of her friends who still drives so hopefully that will help.

Thank you for the lovely welcome ladies

@NewYearNewMinty Yes, the punchbag/therapist is me! I have ovarian cancer, I had chemo and major surgery which finished in the summer, just before Mum arrived and now I'm on maintenance chemo tablets which I self administer. The side effects are mild compared to the infusion chemo I had, but I'm still not well enough to work. My adult DD whom I'm very close to lives with me and I have good friends.

@notaflyingmonkey I see her most days, probably 5 out of 7, as I feel guilty she's on her own even though she lived alone for years after my father died. I've put in one small boundary now (finally) in that I swing by usually in the morning after I've dropped DD at the station and try and confine my visit to an hour.

@thesandwich I'm sorry to hear you're in a similar situation. The reference to going for a coffee is that my immune system is so poor that I'm keeping out of the way of people at the moment which Mum doesn't seem to understand.

I should have added, but easy to forget, I have one golden sister who has always stayed well away and whom Mum makes constant excuses for. She is close enough to visit for a day and chooses not to, she's so busy....

@countrygirl99 I'm sorry to hear about your dad

Welcome Fantasea. I drop in from time to time. The cockroach cafe and its many inhabitants will keep you sane. My DF moved nearer us and I struggled with boundaries to begin with. I now see him a couple of times a week to be talked at and hear a long list of woes. He has very little interest in what goes on in our lives. He makes a lot of stuff up so I'm sure when he sees other family they hear a load of shite about us. I compartmentalise a lot. I don't introduce to any of my friends and I don't involve myself with any of his neighbours or a couple of clubs he goes to. He doesn't need care but I arranged a cleaner twice a week, mainly to put another boundary in place that I wasn't going to do it and partly to get him used to someone going in to help him. He was not a good dad and not a great husband either. I am a better daughter than he deserves, I do what I do as I promised my mum before she died that I'd look after him.

Mum is creating chaos. Yesterday she phoned me 3 times and DB1 twice to tell us dad had died. Despite being told several times that the funeral is all organised and being reminded about various details she forgot a funeral director had been engaged. She phoned a different one snd instructed them. All sorted now but I am worried that mis February I will still be saying "yes I know dad died, we had his funeral last week.". We've tried leaving notes around thd house. We've tried making her s list of goings that need doing with eho is found them and crossing off tasks as they are fine. The list disappeared and dhe has made dozens notes with odd tasks on that we find sll over the place. She won't accept she has a problem so won't accept she needs help. DB has had to remove sll important paperwork from the housemaster she started to get rid of stuff she didn't think was needed anymore.

Oh countrygirl thats so distressing.I'm looking at the time you posted too and thinking you're not sleeping! Are you getting any space to grieve? My mum has forgotten that her boyfriend died but it doesn't have any practical effect as she's too impaired to live alone. The scraps of paper ring a huge bell - my mother had 15 different diaries on te go at one point with random things written in them. But she didn't often look at them to see what needed doing. Perhaps luckily.

Have you made her GP aware Country?

GP is aware as are Social Services but it's hard to help someone who won't accept they have a problem. I keep thinking yhat maybe we should just step back from trying in a few weeks and wait the crash to force the issue but obviously now isn't yhe right time. Mum just forgets all the upset and phone calls so thinks we are making a fuss about nothing and that she is behaving totally normally.

I suppose, a silver lining is that she doesn’t know. From her point of view, it would be really distressing to know her mind, her essence, was disappearing. But unimaginably tough for all around her.

I would hate to know I had alzheimers but it's a nightmare for everyone around her. Between us we had 6 phone calls yesterday to tell us dad had died and everyone time we told her everyone know and everything is arranged. I had 2 calls15 minutes apart and then because I had put my phone on silent for a Teams call she phoned DH 20 minutes later.

@countrygirl99 I wish I could suggest something that worked for my mother. I ended up with a sheet of A3 paper taped to the living room door with reasssurance in marker pen. The never ending phone calls brought me to my knees but she was blissfully unaware she'd just made 16 phone calls at five minute intervals, it couldn't possibly be her on the answering machine and someone must be playing a prank. I taped notes to things (this is the plug for the fridge, don't switch it off) and someone would have ripped them off by the next day. There is no capacity to learn from past mistakes when you can't remember doing them.

The only thing she would believe were the scales but she had no idea why the weight was dropping off her. MIL had a bowel scan for her unexplained weight loss, it had a four day run up where she had to drink gloop. I could have saved her the effort and the NHS the time because it was perfectly explicable - she didn't eat enough. If I could turn back time I would have tried to get mum in for respite sooner which would have made her more amenable to the idea of a longer stay. Covid scuppered that for us. The slow decline because of missed meals is easy to miss.

If you can keep the carers going in then it's getting them established for when she needs more support in the future. I would argue that she doesn't have the capacity to cancel them as she isn't aware of the consequence of that decision.

I feel for you, I really do.

Same as Knot. The only thing that helped really was when she lost the ability to make phone calls.

I found the notes didn't work once the cognition was too impaired - she could read/write, but not actually take in what they said. The penny dropped for me when I was reading the shopping list I had left for her to add things to - each and every entry said 'toilet paper'. Like The Shining.

@notaflyingmonkey How are things with you? How (and where) is your mum now?

knot I suspect mum is actually eating 3 times a day but a "meal" may consist of a slice of toast or 1 sandwich and she doesn't realise that she has hardly eaten anything because every meal was a light snack. Because her sense of time is totally skewed now she will insist that she did something today/last week when it was actually last week/today. She may well remember eating something and think it was today for several days. And she will cook something and put half in the fridge snd insist she has eaten the second portion the next day when it's still in the fridge several days later.