The Cockroach Cafe 🪳 Spring 2023

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

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.

@DrBlackbird husband attended memory clinic with MiL as at that time no official record of her dementia. They asked her to remember some numbers from the beginning, asked about what books etc she was reading, where she lived etc. Also asked about social life and family. It was useful to have it on record, and of course there are different dementias with different progression and issues so it might help to find out whether it is vascular or a type linked to Parkinson’s - they talked about medication and I think often depression is an issue and also sent husband home with all sorts of organisations and groups, local and national, E.g. befriending services and the dementia nurse team who rang me, that can offer help.

MiL was mild to moderate at that stage, but family had been in denial so it really helped me as I think she had signs for 2 years prior to the appointment. The letter after was four pages long detailing her results and doctors conclusions etc. I found it fascinating if not quite accurate in places where MiL made a few things up 😮.

Friends mother bern referred because she refuses to admit she has problems and it is becoming difficult to help where someone refuses to admit they need it …. A common issue I know.

Thanks @BestIsWest doesn’t sound inspiring. Did the medication make any difference?

@DrBlackbird we had a bit of trial and error with the medication. Donazipil made her feel sick, she was allergic to the Rivastigmine patches so she’s on Memantine. I’m not sure if it’s working or not but I haven’t really seen much change in her since my Dad died 3 years ago - she was forgetful and dependent then and had been for a few years.

ok thanks @BestIsWest I think it’s really too late for medication now in any case.

I’ve started a new thread for any of us having to deal with the sadmin after losing an elderly. All welcome.
And sending gin, chocolate and 🌺 to those in the trenches. Please look after yourselves.

I’ve been to memory clinic myself. I guess it’s to look at the scale of impairment and assess the type. For example, the much talked about drugs that slow the deterioration have no effect on some types of dementia.

I had two or three hour long sessions filled with tests, “which is the next pattern in the series?”, “give me a word with no connection to the word I say (surprisingly difficult)”, “join the dots in order, A, 1, B, 2, C etc”. “Repeat back an ever increasing list of numbers” (I used to be able to do 11, I can now reliably do only 7, very depressing). It went into lots of different aspects of cognitive functioning.

I think DM struggled with the pressure to perform - it was quite stressful for her.

@MereDintofPandiculation those all sound extremely stressful to me! Not sure I could repeat 7 numbers reliably let alone 11. The clinic does not sound useful for an 87 yr old who remembers us, but nothing past the previous 5 minutes. I’ve found it odd how much conversation relies on past/future events MiL still surprisingly lucid if you talk in generalities about human nature.

as I said, it might help to ascertain what type of dementia - it could also help build a picture if care needs change. It is a psychiatrist with dementia expertise that carries out the tests, I wonder if they call it memory clinic to sound less scary, but these are highly qualified people - you can look up the clinic and their staff and CVs first if that helps. But of course there is no obligation to go. Personally I feel the more try NHS sees the big picture the more they have to invest in it. If people don’t get referred and diagnosed the true picture won’t be presented and it could hinder both research and future funding and number of staff trained in this important area.

Yeah, well I enjoy all that stuff, thoroughly enjoyed the whole experience (apart from finding my number memory had nose dived), but I was thinking while I wrote it how stressful it might be to another person.

There was considerable flexibility in approach. They started by trying to assess my innate intelligence to decide which tests to throw at me.

When my Dad was going through similar, he was referred to memory clinic by the GP, and it was the memory clinic, not the GP, who administered the short questionnaire. He scored just above “dementia”, and they diagnosed “mild cognitive impairment “. Then he had his physical crash and 3months later was in a nursing home. If that hadn’t happened I don’t know if they’d have done more tests, but I rather think they thought it was too much for a confused 96 year old

Is it possible to get a carer to visit my DM just once a week for a couple of hours to give her a bath & wash her hair?

How do I go about finding someone?
Roughly how much will it cost for, say 3 hours a week?

@MissMarplesNiece you can get a carer to do that, probably through an agency is best. We use a non profit care agency and they charge £24/hr but I’ve heard it varies. Where you are will impact cost.

@DrBlackbird How did you find a non profit care agency? There are lots of care agencies around here, I don't know where to start finding out how good they are.

When my mum received care ( in her own home ) the care package didn't include baths as for health & safety it takes more than one person to get them in / out of the bath.

Admittedly it’s challenging. In our case, we were lucky to know someone personally involved with this organisation. You could try your local Age Concern? Agree with @RuthTopp that it would depend on the mobility of your DM. My MiL was, up until the broken hip, very fit and mobile.

our local age concern had lists of cleaners etc but the waiting list even for a paid cleaner was two months. I agree re hair wash and bath - depends on mobility of your DM. Caters from agencies have to follow strict safety guidelines so if there are mobility issues will need two. Anyone going into the home should also be DRB checked. CQC also register domiciliary agencies - all care agencies must be registered. £25 an hour and about the rate we were quoted for a carer through an agency too. Good luck, a good regular carer would be great for your DM and your peace of mind too.

I think it would need 2 carers to help DM. It's a very physical job getting her in & out of the bath even with a bath chair that lowers her into the water. Neither my DSis or myself are strong enough.

If your DM can't get in/out of the bath what does she do - a full strip wash? DM saw an OT when she was in hospital recently & they've provided a "perch" chair for next to the basin so she can have a wash down, but she insists she wants a bath.

Does anyone know what happens if a medical professional has raised a safeguarding against my mum for her behaviour to my dad? My mum rang myself and my siblings and was laughing that 2 social workers had been at the house and two police men.

We haven't had any contact from social services at all and according to my mum, the medical professional has reported that my mum has hit my dad. My mum then laughed and said that my dad was saying a lot of silly things and dad had told the police that the medical professional was just irritated with him.

We have left messages for their social worker that have gone unanswered and the duty team just state the messages have been passed on.

We have no way of knowing the truth. My mum has undiagnosed cognitive decline and is very verbally aggressive to my dad 24/7.

Dad in the meantime is obsessed with the idea that if he allows carers etc then they are being watched and their aim is to put him in a home.

They won't do power of attorney

@Lightuptheroom i am sorry to hear this, it sounds very stressful and upsetting for all concerned. Common sense would he social services would want to talk to family. I had a time I wanted to speak to social services to simply as whether the date for MiL to come home was still the following day and the person I spoke to would not put me through because I was not a blood relative. I explained I could not contact DH and I was the person who would be getting the flat ready, had met with OT, etc but she would not budge. DH doesn’t have PoA on health & wellbeing, but Social Services have engaged with him particularly after agreeing MiL doesn’t have mental capacity. Without family help and/or input social services have a harder job, but they have the duty of care. Maybe try speaking to your parents GP? I would assume they would be consulted?

Hello all, sorry can’t help much with those in the thick of it. Sending sympathy and gin.
Tomorrow is DMs funeral. Please think of me and send me strength to get through the eulogy I so want to say.

Oh, good luck @thesandwich, Give that eulogy your very best! Wishing you strength, robust mascara, a big hug and even bigger drink for afterwards.

@thesandwich You don't have to put yourself through this, the day is hard enough without the eulogy on top. You know what you want said, you can hand it over to someone else to deliver. Fabric hankie rather than paper, they stand up better to nervous mauling and if you can, have a sheepdog friend who keeps an eye on you and will rescue you when signalled. The family that we only see at weddings and funerals is sometimes distant for good reason. Otherwise stand in front of a mirror and have a quick practise with "Oh, sorry. I've just seen someone I HAVE to speak to."

thesandwich wishing you all the best for tomorrow, big hug if you want it.

Does anyone find their parents make customer service calls in error? I do like to leave mum to do the stuff she can do but it sometimes causes more problems.

I really struggled with mum yesterday. Lucky I didn't have a two hour journey each way and just went home when I hit my limit.

Thank you kind friends.🌺