Cockroach cafe 🪳 Spring 2022 🪳

My DM couldn't bring herself to pay so much for an occasional companion for my late DF. Instead, she found a little army consisting of wonderful, tolerant cleaner, gardener and home help. Took some doing but they're still on the scene, keeping an eye on her now. Approx £18/20 ph and they do a bit of what they're supposed to do too!!

Okay thanks @BinaryDot £25/hour to, at this point, have a chat and make tea, seems a rather nice wage, but seems it’s a case of supply and demand.

I have looked at chat and tea services locally, there were a few who were offering company rather than care. Some were charities, some agencies but some were individuals. The search term I used was "townname companionship service elderly". The one with rates on was £18 an hour (S Yorks). If I was looking to do it myself I'd put a note in the newsagents window and see if I could find someone local. That way they can chat about a shared past.

One of the local care agencies does transport and escort to appointments, I didn't realise that you could buy this in until I saw them picking up someone.

It's hard when elderly parents don't recognise us Hairbrush or don't respond in the way we expect, hard not to be hurt even when they are no longer 'themselves'.

DrBlackbird before my DM went into her care home and before I could persuade her to use an agency (she was very resistant to 'people coming in') I found it was very difficult to hire a carer independently: agencies were and are the main gatekeepers and there's a shortage of carers. Volunteers are restricted to very specific roles I found and being volunteers they can't be asked to do things as and when needed. I found someone who would help for a couple of hours (in addition to a cleaner) temporarily while she was on mat leave, she was a qualified carer and I paid her £25 an hour (which is what I later paid an agency but they take their cut from that, the carer gets a fair bit less). You could try asking on a local community forum on Facebook e.g.

Okay many thanks @Lightuptheroom I’ll look them up.

We’re thinking £15/hour, we’re in the Midlands. Hoping that’s a reasonable amount given it’s pretty light touch atm.

@DrBlackbird I know in some areas AgeUK do a 'befriending' service which might cover what you are looking for?

Have just found this thread. Many voices of experience that sound helpful and reassuring (at the same time sobering about where deterioration can lead).

My MiL still lives alone but her dementia is getting worse. So far we’ve managed with a daily agency visit and us and SiL. She doesn’t want to go into a care home as she’s lived in her house for 50 years. She can be on auto pilot there.

We’d like to try to find some additional care for another two hours a week. We could ask the agency but although they’re kind workers, it’s someone different every day, they can be rushed and a bit abrupt.

It’d be great to find the same person. Even if my MIL can’t remember the persons face or name, I’m sure having the same person would at least offer some sort of subconscious comfort.

Anyone here pay an individual rather than an agency? If so, what’s the usual rate per hour? It’s pretty much just company we’re looking for atm and to make a cup of tea.

During mum's last stay in hospital someone had a discussion with me about just this thing @OhPleaseJustLast. They said that packing mum off in an ambulance for every minor bump was not doing her any favours and that they thought it would be better for her for the GP to attend her at the nursing home. Did I agree? Well yes, she'd had numerous falls at home where we'd decided between us that she'd be fine with a couple of paracetamol and dusting off the walking frame for a few days. I was absolutely certain that I knew what my mother's view was which was to avoid the hospital at all costs (and that was before covid).

@OhPleaseJustLast after MIL moved into her care home she had a visit from someone, I think a social worker, who went through her preferences in different situations about whether she wanted to go to hospital or not. Took ages as everything has to be yes/no answers. Afterwards the same person had a long conversation with DH explaining what his mum had said. Her expressed preference is no hospital unless necessary for pain relief or short term for diagnosis.

I mean, at some point surely they should weigh the benefit to him, against the harm it’s causing to move him from care home to A&E to assessment ward and so on 😔.

Df back in hospital again. Apparently less responsive than usual and high blood pressure. Am I a complete cow to wonder what the point of sending an 80 year old with dementia, a large chronic brain bleed and a DNR off to hospital is? Anyway, apparently the brain bleed has spread. Which a few months ago would have worried me, but since he survived the initial massive brain bleed, and has sailed through covid since, I’m inclined to think the man is indestructible.

The sad thing is that it is a confirmation of the way she is when I am with her. She won't make eye contact with me - only with my cousin. And she talks about me as though she is talking to one of the grandchildren "I heard mum did well in her exam". And I end up talking about myself in the third person! Also I am sad for my uncle who isn't well himself but drove 30+ miles to visit her. He was ok about it and he believes me and my other uncle when we say mum asks about him all the time. But he was upset that she has deteriorated so quickly and he hadn't been able to see her more often.

@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.

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

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

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.

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.

@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!

@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.

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 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'

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?

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.