Cockroach cafe 🪳 Spring 2022 🪳

@countrygirl99 sorry about the fleece! Hope there are some inspired posties about.
@Marylou62 welcome- you really have some s@#£ to deal with. Rant away- we can’t solve anything, but can listen and offer virtual gin.

When my Mum was diagnosed with dementia and/or alzheimers in the summer last year, I knew you were all here but I so couldn't come and talk to you as ....? I think I was so frightened of what was about to happen to my Lovely, kind, intelligent wonderful Mother..(I had been a nurse on a Geriatric ward during my training) We'd never ever had a cross word (teenage rebellion as side!) until all this started and in April when coincidently my Parents and I all tested positive for covid (I'm 250 miles away) , I came up when my DF was hospitalized.(He's very poorly with Prostate cancer and heart and kidney failure)..

That 10 days nearly broke me and gave me a new understanding of what my DF dealt with for nearly 2 years.. My DM insisting on going to bed at 6pm then up again at 11pm for the rest of the night..Trying to get out of the house,(I locked the doors and although she was angry, she'd been going to the neighbours for months in the early hours and I couldn't expose them to covid.) She was packing bags, taking photos out of frames?, hanging clothes up, taking them down and packing them again etcetc..It was exhausting..she wouldn't eat and the weight has droppped of her very quickly.

Then DF came home and it was chaos. She was very agitated and wouldn't leave him alone wanting him to take her away from the horrible woman who'd been hitting her (me). He went to cuddle me as he could see how upset I was and she flew at us screaming that was I happy now taking her husband away from her..She thought I was my DFs girlfriend. I was devastated.

I left the next day (as had to work) after sorting out sleeping tablets for her (didn't work at all except to give her night terrors on top of everything else). Since then she got so bad and tried to take her own life..She pleaded with anyone she saw (family only..She didn't say it to the Dr or MH nurse). My DF found her taking tablets and she was admitted for emergency respite. He rang me heartbroken and at the end of his tether..I called SS at 10am and by the time they'd rang back at 5pm I'd rang around 27 homes..Luckily I found one that would take her that night..She was just starting to settle after two weeks when she fell and fractured her femur..

I'm here at Dads again for a few days (giving him some TLC and feeding him up, cleaning the house and changing beds etc..He's a difficult man but I know he's so ill and devastated about Mum).The hospital say she's recovering how they'd hope her to. Visits have either been horrendous (screaming in pain) or like yesterday when she was joking with the staff and actually introduced me as her daughter.

Dr's rang today to get him to make an appointment to discuss his recent blood test..but he's said he doesn't want to know.

I'm sorry for the long post (I'm sure you all could write a book about your experiences and apologise for all the mistakes) but I feel able to let it all out here..thanks for reading..

She posted it😥

Aaargh! I left my favourite lightweight, fleece hoody at mum's on Saturday. You know the type that is ideal when you are sitting in the garden and it's not quite warm enough but unzipped is perfect. As soon as I realised I phoned mum to check and she offered to post it and I told her don't, I'll be up next weekend. DB has just messaged that nephew just spotted mum coming out of the post office. Now there is a random number generator that intervenes between mum's address book and writing the address down. We coped when we had a regular postie in the village who realised when stuff was mis-addressed but she retired a couple of years ago. I'm never going to see my favourite fleece again am I. I'll phone her later and if she has posted it my best chance is a post on the village Facebook page.

I found visiting mum to be very stressful because of the conversational landmines. Don't talk about the house, gardening, anything "home". I found it easier once we'd reached the stage where she was wanting to be back to the lounge within ten minutes.

I have never been close to MIL so if she's living in the 1960s when I visit it doesn't bother me at all. I'm not distressed by the reality of what I've lost, the change from the woman I used to know. We've been low contact for decades and if I knew she had any other visitors then I wouldn't go.

My mum was very similar when she moved into the home in October. It is only now that she has started to settle, She is quite calm when we visit her now although she still asks if we have come to bring her home. For me it only an afternoon (and that is because it makes it easier for my cousin if I go home with her for an hour before she takes me home) but I find it so stressful, mostly the unknown of how she is going to be rather than the stress of the actual visit.

When it comes to counselling I'm not sure if it is the same all over the UK but I have had a free course of counselling through Cruse and Bereaved by Dementia Project. It was so helpful. I can really recommend it.

@notaflyingmonkey so sorry to hear about your visits. You’ve got plenty on, not least thinking about your own health. Please speak to home about not visiting for a while, and your db- is he closer geographically?
and consider gp/ counsellor for support for you.
🌺🌺

She isn't like this when DB visits, and she has no memory of me visiting, so I do wonder whether the guilt/obligation that fuel my visits is actually worth it for her.

I'm exhausted by my guilt-induced insomnia, so had chocolate for breakfast at 5.30am.

Can you ask the staff if she benefits from your visits? We stopped visiting GMil, as she was distressed by us. If you are in a position to visit every day and keep up the familiarity that's great. When you can't, I'm not sure what the best thing is to do.

Just checking in.

Saw DM yesterday and she was tearful, angry and confused the whole time. The staff say she is cheerful and chatty with them, so I seem to get a different version. It is a 2 hour drive for me, so a visit takes the best part of my day, and is a grim way to spend my Sunday.

Sale of house is due to be going through next week. I'm trying to give away as much stuff as i can, have hired a van for next weekend to clear the remaining items. In the meantime, I have a pile of my things including my grandfathers WW1 army papers on my dining room table that I need to work out what on earth I should do with them (1935 jubilee matches, etc) was thinking when I have time I should photograph them and offer them to the IWM.

My mum refused to see the doctor for ages as she was convinced there was nothing wrong with her memory ( she forgot all the problems and arguments so they never happened). In the end she consented to shut DB up. Of course now she forgets she saw the doctor/consultant/had a brain scan/diagnosis so it doesn't help day to day but it's there on the system.

That sounds so hard, @Lightuptheroom .

Have you tried talking to professionals even without her permission?

When dad was ill, everyone (hospice, social worker, consultant) spoke to us (children) despite our not having been formally given permission. I think they were able to judge for themselves the extent to which others needed to be involved. Admittedly, that was with a terminal diagnosis for him. I think they could see that mum was as much use as a chocolate teapot.

I've also spoken to the GP about mum without her consent, to explain what I was concerned about. Obviously the GP couldn't answer.
There's such a risk then though, that the GP will accidentally drop me in it by saying something when they next see her.

Thank you. She is probably very frightened, her sisters have all had dementia, one died last year, the other is very badly affected. She has friends who she will state that their children have put them in a home, when in reality the friend is unable to look after themselves. She is currently presenting to professionals and friends as completely fine, to family she is very very angry but seems to have no knowledge of the aggression and angry outbursts once they have occurred. We've logged each incident, there have now been 2 safeguarding alerts in the last month, so clearly something is happening. We can't call it dementia because we just don't know if that's what it is. She does have other health and mobility issues, the GP was supposed to refer her back to the rhematoid consultant, but it didn't happen. None of us have her permission to discuss anything about her with anyone, so they ring her about everything, including dad's ongoing health problems, which then causes more angry outbursts because she says she doesn't want anything to do with it. Then back we go around in a big circle. Thanks for your help and advice, so much appreciated

For us it was going into hospital after a fall that precipitated investigations. They were originally going to release her with an increased care package but it became obvious even with physio in the rehab hospital that she could not be at home. We had the added issue of severe osteoarthritis. Twelve months on she is in a nursing home, completely immobile and doubly incontinent.

I think you have to flag it up to Social Services each and every time so that when there is a crisis the pattern is already established. MIL would agree to speak to the doctor but by the time the surgery rang she had forgotten they were calling and slammed the phone down. By then she wasn't eating regularly, couldn't tell the difference between the tv remote and the phone, couldn't make a phone call, couldn't work the washer - but she was "fine" apparantly. It took a week in hospital for a fall for her level of confusion to be identified but I don't think she ever had a formal diagnosis.

Unfortunately, in my experience, it takes until there is a crisis.

It’s incredibly frustrating and upsetting not being able to do anything. Others may have more helpful advice!

Does anyone know how gp's can assess for dementia or loss of cognitive function if the person everyone is expressing concern about won't consent to any appointment at all let alone memory assessments? My mum is taking more and more risks and venting more and more anger at my dad. The GP and us have raised safeguarding alerts but each time the social services assessment comes back as nothing needs to be done and she presented as perfectly fine... How bad does it actually have to get before anyone takes action?

Thank you for your kind words.. Mum is in a home for dementia /alzheimers...

Mums seems more confused since her last hospital admission (2 weeks ago)
I'm now wondering if she had a very small stroke (tia?)
I won't be seeing her til later as I have to take my car for its mot and wait on for a delivery rock n roll
Dh is off next week (we were supposed to be taking mum away) so might try and have a couple of days out.

@Marylou62 my heart goes out to you. My DM has dementia and it’s so hard - you’re trying to deal with and relate to the person sat in front of you, at the same time as mourning the person you used to know. My DF died years ago, so I didn’t have the same battle you do.

I don’t post much on here these days as things are in a settled state most of the time now (but DM is moving care homes on Monday, so that could go either way!). But the last 3 years of my life have been horrendous due to having to deal with all the issues around DM, and left me with a bad drinking problem that I am now trying to resolve.

You will find that us Bad Daughters are big on boundaries- you need them to survive. That and a realisation that there are some things you just can’t fix.

Good for you, Minty!

Mine is trying to drag me into a 'wedding one'. Last time there was a wedding one, there was a five year fall out that I was trapped in the middle of. I'm not going there again!

@Marylou62 what you're going through sounds horrific. I have limited experience with dementia thankfully (although suspect I can look forward to that changing in the next couple of years).

Will you be able to get some time to yourself while you're visiting your parents? My mum gets really shirty if I'm on my phone so I usually take a novel, colouring book or jigsaw and have just invested in a set of crochet hooks!

@SicklyYellow it does sound like the time has come for your mum to be somewhere residential. My dad was in a similar condition for the last year or so of his life and even 4x daily carers wasn't great as its impossible to time someone's needs/bodily functions etc when they are that frail.

I do hope you get your holiday.

My issues are pretty small fry in comparison to everyone else's but it's been a trying couple of days.

We've had another meltdown about 'L'...I just nod and listen and shrug until she's got it put of her system although obviously the timing isn't great. I cannot understand how someone can be so totally oblivious to another person's feelings but there we go.

She's also most disgruntled that she now has to pay for her TV licence which she doesn't agree with. I assume she cancelled the one in Dad's name (which was free as he was partially sighted by the end) and hasn't purchased one since so has been getting reminders.

She drafted a letter to them saying she'd been staying with me since being widowed. I told her I don't want her dragging me into it and putting me a risk of fines or God knows what else when she's perfectly able to pay for the bloody thing like everyone else has to.

Needless to stay the usual threats about cutting me off financially immediately surfaced.

Unfortunately due to the nature of new employer I may not start work until August which will mean no pay until nearly September.

I've told her to do what she likes...I am absolutely not getting involved with this one.

Hello,

Some of this makes familiar reading!

After a series of falls at home, DM95 is now in a care home for respite.

At home she had 4 carers in a day, but they are struggling to attend due to staff shortages and all agree she now needs 24 hour care as she is increasingly confused and frail.

She can't walk or even stand unaided and is doubly incontinent. Her moods swing between insisting she'll be going home soon and depressed lethargy.

I'm exhausted! I'm due to be going on holiday next month, so am clinging onto that and hoping I do actually get to go.

Pickle.. He did eventually agree to wait until we know the outcome of Mum's operation.. I'm waiting on a call...