Cockroach cafe 🪳 Spring 2022 🪳

@rhetorician my mum never acknowledge the amount of help she needed at home. She told the social worker "She makes my meals and sometimes takes me shopping." She would also wax lyrical about my late aunt and how well she cared for their parents and great aunt and say that she could never do what my aunt had done. Yet she never realised that the care she needed was way in excess of what my aunt had provided. It is only now that it is recognised that she has dementia that I am able to come to terms with how she behaved. I still love her but I miss who she was.

We have managed to sort most of the bills now without the expense/stress of Court of Protection. It's a bit different for us I think because we have the same address as my mum. I have been assured by the Council (by email if not on paper) that I can continue paying money into mum's account to cover her bills that she paid on behalf of the whole household and they will not count it as income. We have also managed to switch utilities without her "permission" - very straight forward and we are paying a quarter of what we paid before.

@Knotaknitter ah, that makes sense. She's thinking of her parents then - who had twin girls who died before my mother was born. It's all so sad

@rhetorician We talk a lot here about family care being invisible, it preserves the ilusion of independence because you're just doing a few jobs while you are there on a social visit. It's not that your help is needed or anything. Once you start having professionals through the door then it's obvious that you've crossed the line into needing care.

In the later days I felt that mum preferred my sister even though I know I'm an only child. Mum thought I had a sister and two brothers because her memories were of her looking after four children. She was the eldest of five, I should have worked it out sooner but it took months to get to the bottom of "the other one". "Don't worry about it love, you have a day off. I'll ring the other one and get her to do it"

The "tea and biscuits" diet rang bells @Knotaknitter - after a lifetime of rigidly patrolling her food intake (and mine) my mum lives on shortbread, tiramisu and hot cross buns...

@Knotaknitter - thank you for sharing your experience, which sounds quite similar to mine. My mother is utterly resistant to any help, particularly if she has to pay for it. But as the (lovely) dementia nurse pointed out, she is failing to recognise that I am providing that care. As I say, I've two kids, a full time job, a partner who doesn't drive - and I am lucky enough to have the resources to pay for a flight to the UK every 3 weeks, and to (touch wood) have good physical and mental health myself. Emotionally I haven't really processed this yet - there is a huge void at my back - but also my relationship with my mother hasn't always been good - hilariously () she keeps asking if she has any other daughters - presumably the ones who are better than me...

But your points about boundaries are very well made - I have sometimes felt a bit judged by medical staff for not being there 24/7. Luckily I know my mother would not want me to put my life on hold for her if she was of sound mind - and indeed, my mum walked away from her own mother who had early onset Alzheimer's...

Your post has really affected me this morning @Knotaknitter - I had 3 years of hell (I used to be toofaroutallmylife), but looking back I don’t know what I would have done differently. I’m not an only child, but my sister (for good reasons) wasn’t able to help me, which somehow made it worse. Doing all that with a Full time stressful job, 2 kids (one of whom had surgery twice in that period) and cancer.

Last year, clearing and selling mum’s house, was brutal - the guilt was crippling, and I had to explain to mum what I did, which made her furious. Every time I visit her, I have to go through this again, being told things like “you’ve killed my dreams” and “I thought I had a family that loved me, but clearly I was wrong”.

Shes still alive, in a care home. She looks incredibly well, and I’m told she loves karaoke. I’ve had to disengage emotionally- I do still visit, but I’m afraid if she starts to get angry I leave.

The only way I managed to cope was through drinking heavily, so I’ve given up completely now. It’s very irritating that it came to that, but I am coping much better now I’m sober.

sorry - I just needed to get that out. Cockroach all!

Welcome to the club no-one wants to join @rhetorician. You can sit with @IthinkIsawahairbrushbackthere who is also looking at court of protection (I saw your other thread). You could say that you don't want to do it and social services will act, no-one can make you do it.

MIL had three or four care packages put in place after hospital discharges, they were free for the first six weeks. During that time she was eating regularly and taking all her medication and looked much better. As soon as payment was mentioned she decided she was fine and ended the service. There would be a slow decline due to her tea and biscuit diet and her stopping all her tablets, she'd eventually fall, be readmitted and it would start again. We went around that cycle far too many times. she was able to make what poor decisions she liked but we all had to live with the fall out from them. She never had a formal diagnosis of dementia as she refused to co-operate with the doctor after agreeing to the appointment.

Your mother has choices, she's had choices in the past too. Only child or not (I am one), this is not your problem to fix. The last two years of mum's life were hell for me, not for her because she couldn't see or remember the consequences of anything she did. I spent all my time managing her life, quite lilerally the only support I had was here. I read my journals from the time and can't believe that I functioned with the stress I was under with mum and MIL in denial about how independant they were. Don't be me, have some boundaries and decide what you can and can't do for the next four years. If you visit every other month don't be pressured into saying you'll come every weekend - be clear and firm about what is reasonable for you.

Can I join: mother is 88, has (still undiagnosed) dementia. She lives in London, I live in Dublin - I'm an only child and her only surviving relative (she's an only child too). It's been very hard - she's currently in hospital awaiting a capacity assessment as they won't discharge her without a care package, and she is refusing the care package. I'm more fun than all that sounds!!

Upsetting visit to DF today. He told my sister last night that I’d rung him and ‘screamed and sworn’ at him. She tried to reassure him that I’d never do such a thing, but he was still convinced today that I’d done it and was obviously hurt and upset. And of course when I tried to tell him that it was a dream, or the result of his UTI, he got very bewildered, saying ‘well how could it not be? it was your voice’. So difficult to know what to do - he’s been paranoid before but it’s always been about staff at the home, not family.

(She's self-funding I should add)

BestIsWest my DM could have gone to live in her current care home after she had one of her falls pre-Covid -she went into a (different) care home for rehab for a couple of weeks and didn't hate it - I suggested we look and got some way with that before she rejected the whole idea. That would have been a good time for her to go but I was told at the time people don't go until a crisis happens, which turned out to be true.

BelleSauvage That's good if your relative has cheaper 24-hour care, I wonder if that is to do with medical as well as care needs? I only know of one family in the whole of my DM's area who managed to get 24 hour care at home funded, normally if you need more than 4 visits a day, the council will only fund residential care. My DM's care home is £1100 a week but the agency I would have wanted, who could provide 24-hour home care by the same carers, quoted nearly £1600 a week. My DM wouldn't have qualified for an NHS contribution.

I wish DM would consider assisted/sheltered accommodation. There is a really lovely one near us. But she has lived in her house for 60 years and considers it such a happy place that she’s always refused to move. Her two best friends live in bungalows at the other end of her village and for years my DF tried to persuade her to move into a bungalow in their street. No way was she moving. It would be great now as she’d have more company.
At least her house has a downstairs bathroom and we’ve moved her bedroom into the downstairs front room (she calls it the ‘parlour’) so it’s all on one level for her.
But I do think she misses out on the companionship she would get in the sheltered housing - I know they arrange a lot of social activities and she loves socialising.

So interesting @countrygirl99 My DM has had the time of her life since going into assisted/sheltered accommodation earlier this year.

She made the decision to move because of physical frailty and I think felt it was a negative step but is has transformed her social life and she is actually far more physically active now too. Last time I spoke to her she was even considering Tai Chi, which would have been unthinkable this time last year.

It has been an eye opener for me too. She used to live in an area with lots of young people, kids and professionals. It was a lovely area but everyone was more able than her. Now she is sharing a space mostly with other very elderly people, an obvious (with hindsight) but unexpected benefit is that she is (by comparison) one of the most active and sparky which has boosted her ego no end.

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

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.

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!’ 😆).

@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.

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.

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.

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!

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

@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

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.

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.

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

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.