🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

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

I'm just going to briefly rest on the "I told you so" armchair in the scream wing. The chaos and letdown DM is experiencing after golden DBs visit is difficult to watch. I keep having to remind myself that she's a willing victim, otherwise my guilt is bad, although it's self-inflicted this time.

I'll finish off the bottle while you've got it out

Am in the exact same situation. It’s her review next week after about a year. She always presents well although this time she may not manage as well. I agree, it’s excruciating when the psychiatrist asks in front of mum … eg I said she doesn’t really shop for herself and she looked at me as if I’d stabbed her. In her eyes I just pick up the odd item. So this year I’m handling it differently and hope it will work better. I rang the psychiatrist’s secretary and had a good chat. The secretaries are usually great. I have written quite a detailed letter to the psychiatrist explaining exactly what mum can and cannot do etcnow, and I’ve hand delivered it to the office so he has time to read it before mum’s appointment next week. I can’t guarantee he won’t ask me anything but I’m hoping that having read my very detailed account, he shouldn’t need to and will be able to take her protestations about cooking, shopping and going for walks on her own with a pinch of salt!

@greenbeansnspinach very wise thing to do. I think also that different areas of NHS don’t communicate well. DH spoke to MiL GP who visits nursing home who said she needed to be put in a new additional drug for her behaviour / anxiety - DH (because I had prompted him) asked what the assessment by the mental health team had thought. GP seemed to say ‘no idea’ they don’t consult me? And of course things can be slow, a year after I wrote to the GP asking for help to understand the system and my role in it - the one everyone assumed I would take on and did - I get a text message from the GP surgery offering free online talking therapy 🤣.

DH thinks he needs to visit MiL more often and that doing so will improve her mood and cognition. I think he is desperate to be recognised by his mother long enough for her to know he hasn’t forgotten her. I do understand that this is about him, but he isn’t listening to what the staff are telling him, MiL is on a slow declining path, and his mother disappeared along the way. Maybe the new medication will work to stop the screaming angry phase, it would help all concerned.

will be able to take her protestations about cooking, shopping and going for walks on her own with a pinch of salt!

If you have a clued in doc, try positioning your chair back a little so you're just out of your mum's eyeline. Then you can nod/shake/pull faces in response to the questions directed to her. Doesn't always work, but with someone cooperative on the other side of the desk you can convey quite a lot.

NoBinturongs
That made me laugh: exactly what I used to do....the things you can convey with a slightly raised eyebrow 😂 (no botox for me!)

I asked DH about this, he was a GP for years in a retirement area and had a lot of tricky consultations with the elderly. If he saw a daughter (not always but often) shaking her head vigorously etc he would often say something like, "I think it would be helpful to hear what your daughter thinks." He said it sometimes really helped move things forward but sometimes not - the patient wouldn't usually say much in front of the doctor but he wouldn't have liked to be the companion in the car on the way home.

They do get it but it's a delicate situation, they don't want to lose the trust of the patient which could make things worse for the patient in the future. His own DM will talk to him but has refused to see a GP or anyone about her officially undiagnosed dementia despite his best efforts.

I think also that different areas of NHS don’t communicate well. DH saw his cardio nurse yesterday and mentioned his GP had asked him to get a blood test (which involves either a 4week wait or a 10mile drive to the next town). She said “I can do that”, looks on the computer for what was required, nothing there. They have two systems, not everyone has access to both, blood was on the other system. She ended up guessing what she thought the GP wanted and did that (She guessed right - GP texted to say no need for test)

free online talking therapy What’s that? - ChatGPT?

His own DM will talk to him but has refused to see a GP good to know the professionals have the same problems as the rest of us

Haven't been on for a while, my sister and I are definitely on the bad daughters bench whilst one of my brothers is definitely 'golden child'
Tiny bit of progress, my mum agreed to see her GP!
My DH took her on Monday, nobody could go in with her as she shut the drs room door in his face.
Her conclusion was it was a waste of time and the GP blamed everything on her age..
Caught up with GP record... Referrals to community rehab as she's been having huge mobility problems (her version being that her legs don't work) and Elderly Mental Health (we've been asking for this referral for nearly 2 years, GP always answered that mum was refusing to consent...
Meanwhile in the real world, by Tuesday morning mum stated she definitely hadn't been to the drs and hadn't seen my DH for ages, all whilst unleashing a string of expletives at my DF for daring to suggest that she did indeed go to the Dr the day before.
Every single phone call now starts with 'I haven't killed/murdered your DF yet' (not said in any way joking and then telling anyone that DF is in fact driving her insane.) Unable to retain any information for longer than a nano second yet still both insist they are coping just fine and have no intention of doing POA.
So we plod on, no doubt the appointment will be sent directly to her which she will then ignore...
Then she rings my sister every morning thinking it's Sunday and thinks it absolutely awful that my sister won't go and sit with my dad as surely going to work just gives sister 'something to do'
DM tells anyone who will listen that she herself is too busy to spend any time at all with DF.. not sure what she's busy at!
She'd dearly like to give DF away, seems to have missed the part where he actually has to agree to go, as he is an obstinant sod any suggestions of day care, respite, time away from the constant volley of abuse are met with no... and the social worker still says they both have full capacity and she can't discuss our parents as mum has told her not to...

@MereDintofPandiculation chat GPT that made me laugh. I had that experience with NSI this week, the ‘chat’ kept asking me same thing and saying please go to website and I kept saying I need a human. The 4th time ‘he’ asked me what I wanted I said ‘to rob an effing bank’ please find me a human. Funny enough that worked 🤣

I had an email a letter and a text about filling in a GP survey, but I haven’t been for myself in 2 years and it doesn’t give a place to feedback on the appointments I sat in on with MiL - only at her request, because she couldn’t remember what had been said.

sharing info between hospital trusts also doesn’t happen and as we are equi distant between 2, MIL has had same tests done at cost to NHS because they cannot read each others results. Madness.

@Lightuptheroom so sorry to hear of continued frustrations, I hope something comes of the GP visit, and a referral 🤞. This line between what a patient requests or agrees to and what is in their best interests is another grey area to me. If someone had a broken leg it would get fixed regardless of whether they wanted help! But trying to persuade stubborn elderly parents that they need help is very difficult. A few months ago 999 called when DF blacked out momentarily. After this DPs asked me about falls alarm and I forwarded all the info. They were upset that they would have to pay a tiny monthly fee so haven’t gone ahead. They have plenty of money. My siblings and I are all 2 1/2 hours away, DM doesn’t have mobile and DF doesn’t turn his on. DM so deaf she doesn’t always hear the landline, but it is the phones fault not hers..

I’m up to all the tricks …. Mum is very astute though and turns to fix her eyes on me at every opportunity 🤣

Ah, that's trickier then!

If someone had a broken leg it would get fixed regardless of whether they wanted help! Not necessarily - they could refuse treatment. Though the fact they'd allowed themselves to be taken to hospital suggests they'd like it treated.

There's another grey area around what is in their best interests. Is it in the best interests of someone to "keep them safe" and preserve them for another 5 - 10 years of the misery of dementia when a broken hip and pneumonia could have finished them off quickly? Is it in their best interests to encourage them to have aggressive cancer treatment? Is it in their best interests to take them into hospital, given the frequency of hospital-induced delirium which may or may not resolve? Should you try to encourage them on to a "Mediterranean" diet which they hate because of the long-term benefits to their heart, or at least keep up their calorie intake by buying a box of their favourite Mr Kiplings French Fancies?

DM so deaf she doesn’t always hear the landline Does she know she's deaf? If you lose the top frequencies it's difficult to know you're deaf because you can still hear the lower frequencies loud and clear. I didn't know I was deaf until something prompted me to test, and I found that if I rubbed two fingers together near my right ear I could hear it, but not if I did it by my left ear. Now I've got hearing aids I can't really tell without putting my fingers in my ears if I've got them in or not, except that people don't mumble as much when I have them in. (You lose the s and t and other high pitched sounds, so you still hear the person's voice as loud as ever, but they seem to be mumbling/slurring their words).

and the social worker still says they both have full capacity and she can't discuss our parents as mum has told her not to... Well, that lets you off the hook then ... Enjoy the luxury of the Bad Daughters' Room, and if Golden Boy turns up, he can be shown into the tiny Good Daughter's Room with its hard wooden chair and 1980s vending machine coffee.

Subtle facial expressions… tiny single eyebrow raises … slight downturn of mouth … can sometimes escape the eagle eyed scrutiny!

Should you try to encourage them on to a "Mediterranean" diet which they hate because of the long-term benefits to their heart, or at least keep up their calorie intake by buying a box of their favourite Mr Kiplings French Fancies?

It's a tricky line to walk.

My dad was firmly on the French Fancies side. He had spent years on very careful cholesterol-control diets, but once he lost mobility and independence he didn't want to hang around. So he switched to Fray Betntos pies and steamed puddings galore in the hope he'd have a second heart attack (he said he'd have been very happy to go at the first one, it was very peaceful) before the Parkinsons got too bad.

With my stepdad it's trickier. A good diet and plenty of exercise could slow the progress of the vascular dementia, but also increase the chance of him living long enough to go through worse stages.

@MereDintofPandiculation true .. though golden boy reckons he doesn't have the time to visit them and therefore doesn't want to be involved at all... Also reckons he's never heard mum swear which I find somewhat hard to believe. My sister and I tend to now just deal with obvious things like renewing DF's car insurance.
Not sure if last time I posted DM had lost her driving licence, but the police confiscated it and ever since she says it's all my dad's fault for hitting a neighbours car (he didn't she failed the minimum sight requirements and won't be referred for cataracts)

@MereDintofPandiculation great points and absolute sense. I have a medical student in the family and know a few doctors as friends and remember when one got called to a care home to very very frail person who in many circumstances would not be alive but for great care and NHS, and dr gently suggested to family life was fading - they called the dr all the names under the sun.

You are correct DM doesn’t know she is deaf and even if she was told she was she would argue. I have continuous tinnitus one side (tested and scanned etc.) and am happy to tell people that it affects my hearing. But my DM never admits weaknesses, never goes to Dr, never took us as children, even when I asked once she refused. Her sister who was clearly bi polar (in the family) and had dementia went into a home after possible attempted OD, and according to DM had problems with her nerves, that’s all - but didn’t have dementia. The truth is my slightly mad, hugely anxious bright & clever aunt had classic Alzheimer’s by that stage as well as Bi Polar. DM would never agree, so we don’t discuss it. Families and honesty and different generations way of dealing with these things.

@MereDintofPandiculation your point on hospital induced delirium is an excellent one. Seven weeks today since Mum was admitted and she is in the full grip (as has been the case with previous admissions). She has moments of lucidity but is mostly in her own world.

On the positive side she has finally been allowed out of bed and has taken a few steps with a zimmer. I’m hoping to visit tomorrow but there is flu on the ward so it is officially closed. However they asked Dad to go down today to try to help persuade Mum to take her meds, and said they would consider a visit from me if I rang in the morning.

Not much has changed here. DN is very frail, has lost alot of weight due to not eating properly. Her clothes are too big for her now but she refuses to let me buy new ones just in case she puts the weight back on. I've tried to explain that at 98 years old it's not very likely she will ever be a size 18 again but... Shes taken to wandering about the flat at night when she can't sleep which results in her hurting herself quite often. Last night she caught her arm on the door handle causing it to bleed profusely. Her skin is very thin and any kind of knock causes bleeding and bruising. I want her to get a TV in her bedroom but, again, she won't spend the money. She spends a long period every day talking to her sister on the phone where they both moan about their prospective children / grandchildren 🤣

Just when we thought things were quiet and settled (dMIL died in the summer, dFIL settled, safe and well cared for in dementia wing of local care home)...

dh got a call yesterday to say FIL had sort-of passed out. Recovered but GP couldn't visit for several hours, did dh want the home to call 999 and take FIL to hospital? From dh and me and resounding 'No!'. Why would you take a confused 93 year old to an unfamiliar and noisy setting? On a Friday afternoon, when most likely nothing could/would be done.

Things settled again and GP said possible tia. But, in general, SILs are more inclined to favour hospital treatment, in the vain hope that something can be done. This incident has passed but if care home can't get hold of dh and try dSILs they tend to panic more...

Just been visiting Dad. How can he on the one hand ask me to invite Uncle Alfred to his funeral and wonder who is caring for his grandmother, and on the other be perfectly aware that it’s King Charles, and recognise Rishi Sunak?

Ah Mere, the mysteries of the brain. Objectively it's utterly fascinating how the connections and memories are made and then fade. But emotionally I find it hits hard when someone you love's brain is misfiring. For me it seems to poke away at the fundamental part of "who they are", much more than any change to their physical/visible body.

DM still retains quite a bit of self awareness and tends to know if she's not right because she rings me and says that she's going doo-lally. In her case I think she's having very realistic dreams when snoozing and then waking suddenly and getting them muddled up - doesn't help her tv is on 24 hours a day too which must play a part.

The brain is indeed mysterious. After MIL had her stroke she couldn't read, write, talk or understand numbers but she could tell the time from an analogue watch and god forbid a meal wasn't served at the routine time or the tv wasn't on the right channel at least 5 minutes before Strictly.

@venusandmars difficult when family have different views about what is best and funny enough was discussing this with BiL - actually not having PoA on health saves family trying to influence decisions or upset where all don’t agree.

I studied psychology at a low level, much of what has been learned about the brain comes from observing changes post accidents, tumours and strokes. It helps that I understand it a little when MiL drifts from moments of clarity to complete nonsense. I could get quite nerdy about it, as I found the biological side so interesting.

Recurring themes with MIL today were that she desperately needs a mobile phone (she had one but never turned it on), no one has been to see her for years, (she gets a visit every week) she wants to go home and asks why am I in prison. 🙁. Many of the strange stories have a route that I can spot. Sadly MiL had some very tough moments in her life. Shame if her brain doesn’t could focus on some of the better ones.

I had a nice visit with my Mum - the first half anyway when she knew who I was. I popped out to the loo while the nurses were re-doing her bed sheets and tucking her in, and when I came back she said she'd never seen me before, she wanted her daughter and nobody had been to see her for eight years. She did say that it was very nice to have met me when I left.

Dad, meanwhile, is limping around with terrible sciatica and getting excited about the possibility of Mum coming home next week. AAAAAAAAAARGH.