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.

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.

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.

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 😔.

@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.

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).

Yes, talk to the care home. My father has been clear he doesn’t want to go to one of the two hospitals, but he does want everything to be done to keep him alive . The pointis,there has been that discussion, and it’s been written into his care plan

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.

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

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.

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.

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.

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.

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!!

My mum would not have tolerated any sort of paid company. She had plenty of friends (which to be fair, she did) however she could not entertain in the way she used to so if she had a friend to visit I had to be on hand to provide tea and cake. Even when the visitors were trying to support me and were more than happy to make her a drink etc she would still call me to come out.

Hi everyone, I’m new to this thread though have posted on the board before about my dad. Just to give some briefish background: he has been in a nursing home for 5 weeks following a 6 week hospital stay for a fractured neck and pneumonia. Before that he was living independently at home though we were increasingly having to give him more help. He’s 87 and has been on his own for 12 years since my mum died.

He is regaining some mobility. He’s on an ‘at risk’ feeding regime as he has an unsafe swallow following the neck surgery, but we’re hoping that’s improving too. He was diagnosed with delirium in hospital and is still very confused - we suspect that there may have been some underlying dementia that has surfaced with the trauma.

Our dilemma is ‘what next?’ Although he hated the home at first he has settled a bit, though still complains about the ‘endless waiting’ and ‘appalling communication’. Staff are busy and although they’re mostly kind, they often just sweep by without really listening to him. He’s well cared for but not nurtured, if that makes sense. He’s an intellectual man - very bookish, uses long words, has a dry sense of humour - and I think some of the staff and residents don’t know quite what to make of him. As he’s improved physically he’s now one of the more able people in the nursing section - and he doesn’t really need nursing any more. However he is reportedly often very unsettled in the late evening and night - he’s had a few falls where he’s tried to walk on his own.

Today when we visited he was asking us what the plan was for the future. He keeps talking about us all moving in together which we’ve tried to explain can’t happen. It’s heartbreaking as it’s so obvious his ideal outcome would be to live with one of us. We explained to him that the choices are

• staying in the care home


• going back to his house with live in care ( though his house is not really suitable for someone with limited mobility)


• selling his house and buying a flat or bungalow very close to one of us, again with live in care.

It’s very difficult to know which option he’d prefer as he’s so confused. He talked today about wanting to be more independent but also said he liked being looked after.

I don’t know what I’m asking really! Just some shared experience I guess. How on earth do you know what’s best?

Hi it'a a difficult situation to know what to do for the best. It sounds like he will not need a nursing home as such so one option would be to look around for somewhere else, maybe a residential home where people are more able and sociable? Homes differ so much, you may find one where he feels more at home but obviously it will be unsettling to move him. The confusion is common during and after a hospital stay and this may ease as he settles more but like you say, it could be the beginning of dementia.

I looked into live in care for DM but we dismissed it at she would have needed a nigh carer to as she gets up so many times in the night. You could potentially have the same problem. It could work but it is a lot to organise, selling his home to buy a bungalow and then finding a suitable live in carer who he would be happy with.

Good luck-it sounds like he can't live on his own anymore so that does narrow your options down.

@LaBelleSauvage123 I'd ask for a conversation with the home manager and whoever arranged the nursing place. See what they say about what sort of service can meet his needs and work from there. If he doesn't need nursing then you can look at assisted living, residential or going home with live in care, but do be aware with live in care that you have to seperate out day and night carers and it can get difficult. Unfortunately it's not so much about what he wants rather what would be in his best interests... Selling his home and buying a bungalow only to find that his needs are higher than that could be potentially very distressing

That’s good advice, thank you. We’ve got a meeting booked with the nursing section manager tomorrow so hopefully that will clarify things.

The other thing to bear in mind with live-in care is that it may not be that easy to find someone given the current shortage of carers, particularly someone who meets your df’s intellectual needs.

But hopefully your meeting will clarify tomorrow will clarify what you df’s needs actually are - it can be difficult to work that out as a visitor, particularly if the person isn’t very clear themselves!

I emailed some agencies when he was in hospital and they keep contacting me saying they’ve got live in carers on their books. And there are also some local micro providers who do live in care. I think he probably would be happier in a house with 1:1 care. There’s a bungalow for sale in our village at the moment and if he lived there we’d obviously be able to pop in and out all the time. But I do worry about managing carers. I have a disabled son who lives at home at the moment but will be moving into supported living in the next few years and finding carers for him is a nightmare. Not sure I could do it twice over.

BelleSauvage I agree that you need to have a good understanding of not only what nursing care your DF needs now and in the near future but in the coming weeks and months if it can be predicted. Needs can change very quickly, anyone of 87 years who has had disordered swallowing, may have underlying dementia and is a falls risk could need nursing again at any point. I understand your thinking that your DF would prefer to be in a bungalow near you with carers coming in, it's similar to the scenario I imagined for my DM, but in my case it was built more on an optimistic ideal than reality.

I organised an excellent care company to come in to my DM's bungalow daily, and it seemed for a few weeks that it would be the solution but: DM was a falls risk and had cognitive impairment, she was frail and unsafe and I quickly realised that unless she could afford 24-hour carers coming in, she was not coping or safe and I was very stressed. The hours between carers became uncertain hours when I could expect the careline or a medic to call me to turn out or solve something, and there's only so much of that you can take.

Because 24-hour personal care is so expensive and will need to be self-funded, I didn't really consider it, it would have eaten through DM's money far quicker than a very good care home and you don't know how long someone will live. Even if the 24-hour care was possible, I realised DM needed to be with people, not just sitting in her own home (I live a long distance away) and waiting for the next carer. You may imagine filling the gaps between carers but that is a full-time job and also, as you say, managing carers is also a job: I am very used to complex admin and the agency themselves were very on the ball but I was living Mum's schedule and still fielding calls (from her, from the carers) daily about the care itself, as well as using a daily tracking app and keeping a second schedule for all DM's appointments - carers can do quite a lot but there are limits as to what an agency allows them to do.

After a fall, my DM went to a very good care home (the CQC reports are online) where she was able to be in a social world she could cope with, and all her care needs were met and, most importantly, she was safe. She absolutely needed to be looked after rather than maintain some 'independence' by having periods of not being looked after. In my DM's care home, there are former teachers and business people, prolific readers and film-buffs - and if they happen nod off mid sentence, it's OK. It's also OK when dementia changes them (no 'dementia floor' or other segregation) and there are lots of social activities. Some care homes are also nursing homes but unless someone needs nursing decisions and actions to be taken more or less daily on their behalf, nurses can come in to any care home, as can doctors, opticians, podiatrists and even dentists. And, as I've found, a care home generally provides a safe base for end-of-life care, without the need for hospital.

If I was making decisions all over again, I would never have gone the home care route except as a temporary holding pattern for the care home, which it turned out to be. I don't know if any of that is useful but I think my main point is the care-at-home route can be fraught and relatively short-lived after a certain age.

@BinaryDot our experience has been quite similar. DMIL was coping but unhappy with random carers, and when SIL needed a knee op and couldn't kick in, it was respite, just before COVID Lockdown1. Which was good because she had to stay put, and we didn't worry about who was coming and going as they were stable on staff. When they wore out, we had to organise a move to our area 300 miles away. It happened as planned but it triggered another step down in DMIL's cognitive function. At 93, it has to be expected but there is no denying that she is unhappy and frightened by the tiniest change to routine. A trip to the local MIU last week for a chest Xray ordered by the GP was an ordeal for us both. I had planned an afternoon tea and cake treat afterwards, but she was too traumatised to want to do anything other than get back to familiar surroundings.

I am coming round to thinking that home care wouldn’t work. My dad has just contracted his second UTI in a month and is more confused than ever. My DHs uncle has 24 hour home care though and is paying far less than my dads nursing home fees, which are huge.
If there were more like minded people in the home it would be better. He’d fit right in in your DMs care home BinaryDot. (Today when one of the staff asked him to walk more slowly as she didn’t want him to trip, he replied ‘Heaven forfend!’ 😆).

We did find someone to go a few nights a week as well as the daily agency visit, but I’m not sure that’s enough. Wondering if we’re looking at a care home. She was always so adamant about not going to the point of panic. If she does go though it’ll be another huge cognitive decline. Being in her home of 50+ years does ground her to her identity.

FIL was was determined that when he died MIL was going to have 24 hour carers at home. They were council funded and it was never going to happen but it was a massive and distressing battle with him. In the end we got MIL into a home 4 weeks before he died. It has been perfect for her. She was always a social person but had retreated into her shell as covid and then FILs increasing frailty limited their lives. She has become much more animated, made friends snd joins in activities as best she can. Even joins in singing sessions which she loves even though she can only make random noises. I think if she had stayed at home she would have just given up after he died