Cockroach cafe 🪳 Spring 2022 🪳

[MereDintofPandiculation]

Welcome! Those of you who have been before will notice the Bad Daughters’ Room is now called the Kumquat Room, and there are a couple of fine kumquats in the Conservatory.

Check also the Stationery cupboard with, among other things, the 🪳emoticon ready to cut and paste.

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

@Fantasea the only plus for us is that my parents home is housing association, so I just repeat ad infinitum 'ring the housing association ' not that if works!!!
Spoke to Dementia UK nurse yesterday... We're doing all the right things, basically need to keep contacting her GP (so let's just wait for the crisis to hit in other words)
Thing is, we don't even know 'what' this is, only that her personality, language, outlook, just about everything, has changed over the last 8 months....

@countrygirl99 . That is absolutely beautiful. Thank you for sharing it.

Hi all.. It's been generally quiet for me but I know that my DB has been kept very busy. I've not had any emergency calls from my DF just calls asking my opinion on bringing DM home.. She asks all the time and he's lonely. Difficult conversation, trying to be tactful and gentle when all I want to do is rage 'No Dad..I know you are lonely and miss her but it would be incredibly selfish and she will be devastated when the inevitable happens and she has to return to the home. Everyone you ask has said the same!' (Should have written this all in CAPITOLS!! But you all know what it's like)

I visited her 2 weeks ago and she seems to know who I am..But she admitted to me around Christmas time that although she knew that 'The Man' (my Dad) cared for her she pretended to know him because she didn't want to hurt his feelings . So who knows? I keep having flashbacks of her sitting in her chair in the nursing home just staring until she sees us then jumps up thinking we've come to take her home..I'm crying now.. The look on her face will never leave me.

She's been in an assessment unit for the last 8 weeks..(we were told 4 weeks but on the bright side it's saved Dad £1000s. This is not a criticism. .She is safe and as we all know SS is on it's knees). I managed a phone conversation with her yesterday where she told me she had a new job! (she used to be a nurse and has quite often told me she helps the 'nurses' lay people out and give people their medication..all in a little girl voice ..) I cried after that call..in Sainsburys. (Can I just boast and tell you that she was one of the most qualified senior nurses in her area, Senior Sister, Modern Matron, Nurse prescriber , Chairman of many ethics committees.. I am devastated for her and myself but Alzheimers doesn't care)

Hopefully she'll be moving to a permanent home next week..They've told my Dad that he can come and have lunch with her...It's nearer too and he's hoping he can use his new mobility scooter which he bought for £3000 and has never used..Very bumpy track leading to a very busy fast road..and he's partially sighted. What could possibly go wrong?! (I tried to suggest a 2nd hand one but was told to keep out of it..only to be told last visit that 'did you know I could have bought the same 2nd hand for £150' !!?)

I've bent over backwards to try and be gentle in my replies to him..But every time I open my mouth I seem to annoy him..So the word/sound 'hmmm' is used a lot.

Oh.. and my DSIL organized a cleaner for my Dad a few hours a week..He told my DB that he hoped I wouldn't be upset! (as if I'd miss a 5hr journey to clean 2 urine/poo stained toilets!! My poor partially sighted father has prostate cancer and his previous bowel cancer have made him doubly incontinent..I willingly cleaned for him but I sure won't miss it!)

I have changed jobs too as I wasn't visiting as much as I would like..Mainly to give my DBs a break..I will now have Thurs and Fri off. Costs me £100 a journey in petrol but luckily we can afford it so far..(and on a happier note God willing I'll be able to care for my future grandchild. My DD is now 15weeks..We gave my DM a framed scan photo and she went around the CH showing everyone.) My present job I didn't have Fri/Mon off much and going up Saturday /home Sunday is a killer...

Thankyou for allowing me to vent..I have caught up with all your news and I'm so sorry for all of you in such difficult circumstances ..You lovely bunch of people make me realize that I'm not alone in this incredibly hard journey ..Nearly every word written I can relate to ..
Finally..That poem...One of the most beautiful things I've read..Thankyou..(even tho I've now got a headache from crying so much.) X

Sorry Exexpat. I didn't see this..SIL is making a good recovery but left with weakness and is having physio...
Thankyou for asking and I'm so sorry for your loss...x

I know that "look" and the disappointment when you have to say no - although we say "not today". My mum was in rehab for three months while her needs were assessed and they waited for a place in a home. It was very unsettling for her. She has been in the home now since October and is just beginning to settle.

Mum doesn't have a phone. With her cognitive decline, poor eyesight and loss of feeling in her finger tips she was struggling with the landline before she went into hospital, let alone a mobile, but she misses it so much.

I've missed my dad every day since he died nearly 10 years ago but I am glad I don't have to consider his feelings while navigating mum's needs. I really feel for you.

Thankyou Ithink...I remember when my DHs Mum died and him saying he knows I'll have to go through it one day. (30 years ago now..She had him at 42.my DM had me at 22) Never in my wildest dreams did I think it would be so bad for them both at the same time.. But my Bestest friends Mum died when she was only 15 so I have thanked God every day for my Mum still being here..

FWIW my Mum was put on a low dose of antidepressants for arthritis pain and it certainly mellowed her out. So I definitely recommend enquiring about this if someone is old and cranky (... putting it charitably!).

One of the few good memories of mum's final year was her saying that she thought she'd reached a point in her life where she was truely happy with no worries. I did wonder at the time whether that was related to the antidepressants the home thought she'd benefit from, when I had suggested them over the previous ten years I'd been dismissed.

MIL routinely asks if I can drop her off at her mum's on my way back. There's obviously lots of reasons why I can't, I usually say that I'm going straight to a friend's house and she'll be expecting me.

When my mum saw a specialist and was finally properly medicated (large doses of an antipsychotic and antidepressants) things got a lot, lot better.

Finally getting a chance to catch up on this thread. This must have been a long and stressful journey for you exexpat but I am so glad to hear your optimistic plans for a future for yourself. I’m at a slightly earlier stage than you in that DM has been on end of life care for a while now, having declined in health a few months ago. I’d always imagined EOL was fairly precise, as a prediction, but apparently not. All I can say is how thankful I am she’s in her care home – it’s an aspect of care I hadn’t thought about before.

I’m gobsmacked by your DM’s move Fantasea, I can’t imagine how someone decides to do that. I hope you can indeed step right back.

The comments about GPs I really sympathise with, it is a crisis isn’t it.

Minty that sounds like a bit of a transformation with the Citalopram – I so hope they’ve hit on the magic formula.

DH and I have been really busy with sorting out FILs funeral and arranging clearing ILs bungalow etc but thus weekend has been full on social! Saturday was the wedding I made a fuss about mum not being invited to. Would have been about a 75 minute drive but we had to pick mum up from the opposite direction so was 3 hours🥱 each way. We were dreading the repetitive conversations but in the end mum's refusal to admit she needs to wear her hearing aid worked in our favour and she sat quietly in the back because she couldn't hear when we spoke to her. Behaved OK at the reception but did introduce herself to 2 people she has known for years and asked if they were bride or groom side. 1 of them is mother to her GGC!
Yesterday we were invited to DS1s partners family party. She is Chinese and it was proper Cantonese party food. 4 different duck dishes, lobster with crispy noodles (divine), shitake mushrooms with "hair" - a sort of algae, sticky prawns, 2 pork dishes, abalone, sea cucumber. I don't think I'll need to eat again for a week and we brought home loads of leftovers as well.

I’m a bit of a lurker here but find being on here really helpful, just knowing others are going through or have gone through the same or similar. So on that note I wanted to share some good news I got today, to give those working their way through the social services funding maze some hope that there is light at the end of the tunnel.

Following a fall a few months ago my df, who had recently moved to a home due to progressing dementia, had a massive brain bleed and although he survived, he returned to the home with significantly increased needs. They had to put 1:1 care in place, and so the home, guided strongly by our social worker, applied for 1:1 funding (FNC, I think? I’m still unclear on the terms). I’m told they make you go through the whole CHC funding process to get 1:1 now, so when I was told that we were successful, I assumed it was for the 1:1 fees only. But it turns out we’ve got full CHC funding, which means no more care fees at all!

I mean, at the end of the day, my dm’s money was almost gone anyway and we were mid financial assessment with social services. None of us cares about the money as such, but to have the whole topic just taken away is just such a massive relief. And to have the outcome of anything relating to social services admin be a pleasant surprise rather than the opposite is also refreshing!

@OhPleaseJustLast great news. It's such a relief when a burden like that gets lifted.

Absolutely! There are times when I sit in the mass of paperwork representing our house admin and my father’s and think “I just can’t cope!” and have temptations drawing up a POA and handing everything over to my son.

(I have an old Enduring Power of Attorney but that kicks in only when I lose capacity. Can’t face getting a POA just yet)

We now have a massive problem courtesy of my mum's GP. We contacted them as things have deteriorated again, GP rang my mum and asked her to go for a memory test, stating that my sister and I had raised concerns about her memory. My mum then made a set of highly abusive phone calls to me calling my sister and I filthy names and accusing us of only wanting to steal her money. She has banned us from visiting them.
Why did the GP name us when we specifically asked her not to due to the problems it would cause.
They now have 2 extremely vulnerable people with no support at all.

That's frustrating, but from my all-new experience of communicating for and on behalf of a confused relative, not surprising. There's always an unexpected surprise around the corner. Is she likely to still remember the ban tomorrow?

@Lightuptheroom Perhaps worth writing to the GP again briefly to explain the outcome? 'You should be aware that following your contact with my mother giving her information we had passed to you in strict confidence, she has abused us verbally and refused to see us again. As you will be aware, she is physically and mentally declining and has now cut herself off from her remaining family support. Please bear this in mind in future contact with her. Yours sincerely'

Thanks, yes, have sent almost exactly that to the GP, I'm not sure if she will remember on not tomorrow, memory retention is about 10 minutes at the moment

@Lightuptheroom hopefully she is loke my mum. You can have the most terrible upset one day and she has completely forgotten it ever happened the next. Every so often she gets it into her head that DB has had a big family get together and not invited her. She phones him up and is really vile. A few hours later she has no recollection.

@countrygirl99 I know what you mean, she rang me and called me an evil shit stirrer, then rang me again 5 minutes later to tell me dad's car has passed it's MOT!

My sympathies Dint even when the direct physical care burden can be lifted, holding everything in your head and administering another person's life (often in some sort of crisis) can be overwhelming. I acted on your advice to only apply LPAs to Mum's accounts one by one as needed and that has cut down stress. If this whole experience has taught me anything, it's to sort out my own LPAs and similar. Currently I don't have any in place, and as I have no partner or children or other relatives, it will mean giving my LPA to a friend or a professional. I have other single friends, including my closest friend, so I think we will swap. We can only do things bit by bit and when we have the oomph.

OhPlease I'm so glad you got that funding, it must be such a relief.

Lightup Gah! What was the GP thinking? Or not thinking more like. I hope Countrygirl is right and your DM just forgets the circumstances.

My DM is on end-of-life, her docs and carers are slightly bewildered she is still here but since the Liverpool Pathway controversy, EOL care seems very cautious. DM is largely out of it, fortunately.

Sad call from my uncle today. He is mum's only remaining sibling, two years younger than her, and they have always been very close even though they don't see each other that often. Every week when my cousin and I visit her she asks "Have you spoken to Uncle Hairbrush? How is Aunty Hairbrush?"

He went to see her today for the first time for a few months and she didn't know him. He explained who he was, who he was married to, and she said that she had never heard of him! He mentioned my other uncle, her brother in law, and she said he visited a couple of times when she first moved in but hasn't seen him for a year. He visits every week.

She told him that the only visitor she ever gets is my cousin. I know she isn't sure who I am but hearing that she doesn't even remember I visit has really made me sad.

That's so hard @IthinkIsawahairbrushbackthere. Bloody bloody bloody dementia.

Hope at least in your case @Lightuptheroom the forgetting works to settle things down again.

@IthinkIsawahairbrushbackthere The lack of recognition is hard but it might be different again another week. The first time mum asked me who I was it was physically painful, all the breath went from me as if I'd been kicked. The next day, she knew me. MIL had a period of not knowing me, one day she asked every twenty minutes who I was, at the moment she remembers my name although I'm not convinced she's clear about the relationship. It's like looking through fog, there are clear patches and then everything shifts again.

Thanks,@BinaryDot . Feeling better today. There is now nothing in the greenhouse waiting to be potted on/planted out. I feel calmer all round. Good plan re best friend.

@IthinkIsawahairbrushbackthere I know she isn't sure who I am but hearing that she doesn't even remember I visit has really made me sad. She was confused at seeing someone she couldn’t remember. At that instant she couldn’t remember you visiting, or confused you with your cousin. It’s an aberration of the moment, nota permanent state of mind.

Actually knot has just expressed that far better!