Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

@Eclipsing Thank you. I think I will make myself comfortable- I suspect I will be here for a while. I will bring snacks.

@bigdogpaws an aunt did the whole moving in together thing with DGM. DGM given a small granny annexe despite providing practically all of the capital. Over time aunt ran through all of DGM's money.

I dont think aunt set out to rip off DGM she was just rubbish with money added to a strong sense of entitlement and a fairly grasping nature.

Later on aunt had plans to do the same thing with DM. Fortunately DM realised what was happening and moved away before aunt could firmly get her claws in.

@GnomeDePlume Sounds like a lucky escape for your DM. I think, like your Aunt, Brother doesn't exactly intend to rip mum off but he has never really grasped the idea that her money/assets etc are not his. He lived with our parents until his mid 40s and never paid a penny (not even for his own food, despite not eating the same as them) and they have continually provided him with financial help when needed. So I think he just sees this as a continuation of that situation but now with a partner and child in tow. He is also terrible with money- for example, he complains that he never has any money left at the end of the month and can't afford things like car repairs but buys more take-away meals than anyone I have ever known. I've overheard him on more than one occasion commenting on how much money Mum has in the bank- with seemingly no realisation that much of this is lump sums from pensions and intended to last for the rest of her life. I know that Mum is already paying for some of their expenses and Brother's daily 'little treats' from the local take-away but she agrees to this and if he's actually looking after her then it's not much in the scheme of things. My concern is that if/when they all move to her house they she will be paying for pretty much everything for everyone and won't have money left to pay for care when they inevitably decide that they can't manage any more.

Some small wins last week....

DM has a GP appointment booked for around 10 days time to discuss ongoing mobility problems etc.

A support worker has been arranged for a visit once a week for shopping/cleaning etc.

We visited the estate agent for a very useful chat about how to gee up selling DM's place in the current slow market.

We also managed lunch out and a wander round a non-supermarket shop - first social thing we have done together in months.

I did shopping and gardening as well!

I'm starting to feel like I - and DM - are very slowly getting somewhere at last.

I struggle with this too. I can’t bear to see her unhappy, doubly so when it’s a fixable problem and/or of her own making.

It gets harder to pull the threads apart and know when to be the counsellor, when to be the enforcer, when to be the obedient child etc.

I have said to DM I can listen and sympathise about her personal problems or I can do something about her practical problems but I can’t really do both effectively.

Eta: in case this sounds callous I should add that DM has many resources to fall back on such as a counsellor she has been seeing for a decade and many many old friends, she could be discussing her existential fears with. I am actually happy to listen but I can’t do everything, it’s very hard.

I feel the same way.

I feel like I'm mid transition from child to a caring role.
There are times when she's more than capable and I can take a step back and she still wants to look after me and is proud of me (I just finished and passed an 18mth long course).
But there are also times when she needs support and I have to step in and be a bit bossy to solve problems. Especially when they're easy and she just needs to tell me to drive her somewhere so she can buy a thing.
Or tell me she wants me to accompany her to an appointment rather than implying that she'd be fine until I probed more.

There are other times when I have to be careful to not turn back into a 15yr old being snappy and eye rolling when she's being daft (not binning her expired debit card and wondering why it didn't work 🙄)
But she's also being a teen with me now, mentioning important stuff (like another fall) in passing.

Mothering the Mother continues.

Mittens yes to all of this. Solidarity ✊❤️

Yes, to echo what others have said above about having an LPA with a sibling. It’s an absolute nightmare if you’re not close to them or in agreement. My “D”M fondly imagines that I have a close and loving relationship with my “D”B and we would work together to care for her.

The reality is I haven’t spoken to him for more than a year and he’s very unlikely to want to do anything and will leave it all to me.

DB and I have both health & financial LPAs for DM.

Health works well because we can act separately though of course always in DM's interest. We disagree on what is in her interest. I have advised the CH nurse that if she wants the answer to be 'yes' then she is probably best asking me. If she wants the answer to be vague, waffly and patronising then ask DB.

Finance is tricky because it is joint so we are supposed to act together. DB has been doing DM's finances for a few years, logging in has her. As DB makes it difficult for us to meet up I have decided to let him get on with it.

I need to share my triumph.... 26 days after my mum was discharged form hospital to be cared for in bed we are getting a level 3 mattress for her hospital bed as after the best part of 6 weeks in bed she is developing bed sores. Now she is getting out of bed, as her regular carers are amazing and so much better than the hospital physios, I am told the the equipment service can change the mattress as before she was in bed all the time so they could not do it. But being in bed all the time was why we needed the level 3 mattress in the first place.... I have no idea how many telephone calls I have made and how many people I tried to cajole into changing the mattress but finally I have got somewhere.... I have had five years of this madness I am not sure I can cope with another five years

@QueenofAssam I’ll celebrate that win with you 🍷

Mum’s funeral is this Thursday. It’s all been organised in plenty of time.

I’m still in the thick of a horrible situation as DD2 has high support needs. She was showing signs of psychosis on Sunday. I needed to give her the strong emergency meds and call the crisis team. Thankfully the knock out sleep did a factory reset on her brain and she is back to functioning extreme anxiety. I have told her if she is not well enough for the funeral, it’s ok to just come to the meal afterwards. Or if she needs to sit at the back of the crematorium for a quick escape that is also ok. DD2 is waiting for a MRI brain scan as she also has some worrying symptoms that could be physical rather than mental health.

The social worker who could not see any learning disability needs only mental health needs in DD2 (and therefore zero help given) has come to the house and done a carers assessment on me and is recommending I do get support so that is something.

For everyone in the trenches of caring for parents I urge you to have the conversations about their funerals now. My mum was open to talking about what she wanted and it really helped. The only thing we didn’t talk about was what clothes she wanted to wear. I suddenly got stumped with what should she have on her feet? Funeral directors advised no hard shoes for the cremation. I had wanted to get her some fabric slippers, the sort with the grippy pimples on the soles. Alas none in the shops. Had to go with knee high pop socks for her legs and fluffy socks for her feet.
As mum had been in pull up pants for weeks we did a black bin sweep of her care home room instantly she died she had no knickers. I asked the funeral directors did they put knickers on the deceased? I was told they would dress her in anything she would have worn in life. So I provided knickers as well.

Start writing the eulogy whilst they are living. So thankful I had the foresight to do much of it in the run up to her death. Believe me you won’t feel like doing it after and if you have extra care giving duties as I have you will be time poor.
Im going to sit with mum for the last time tomorrow. I didn’t have her embalmed, meaning the coffin will be closed. Mum will be taken out of the cold room and dressed and put in her coffin tomorrow before my visit. She will be wearing a skirt I made her and a crochet long waistcoat her own mother made her in the 70’s. The waistcoat would be bang on trend again. Funny that. It gives me comfort to know she is wearing clothes she loved , made by people who loved her.

@MittensTheKittens
thank you.
you have expressed so well the dilemma that looking after an elderly relative can be.🩷

Bloody well done @QueenofAssam 🍸

@BeMintFatball - thank you for sharing and I hope the funeral goes as well as these things can and your DD copes well on the day so you can get through it. All great advice about preparing what you can in advance - there are lots of decisions and emotional things to work through. A time poor solidarity cheers to honour your DM 🥂

@NeedMoreTinfoil @QueenofAssam Great to hear about your small wins- they don't feel so small when it's your reality do they.
@BeMintFatball It sounds like you've got an incredible amount to deal with. Very wise words re discussing funeral plans. Having been through it fairly recently with DF, I know it's the small things that trip you up (like your example of what to put on their feet). In our case there was an unexpected quandary about what sort of charity he would like donations to go to.

@EmotionalBlackmail @GnomeDePlume My parents were well aware that Brother and I have never been close, that Brother is not the best at planning/admin and that we have very different approaches to almost everything. Yet they made wills that require us to act jointly, didn't appoint an LPA when they were fit and well and won't have any discussions about funeral plans etc (and have left no written instructions/letters). I think at some level their thinking about the will is that responsibilities are joint then it's 'fair'.
Re LPA and funerals I think they have just wanted to put off dealing with it. I suppose they always assumed that one of them would sort out everything for the first to pass, then they would have plenty of time to 'hand over' to us before anything was needed for the surviving parent. Unfortunately by the time DF passed, mum was in the early stages of dementia and not in a good position to consider these things. Yet another reason to make realistic plans when you are fit and well.

Well another successful visit was had yesterday.

Nothing tech-related other than the usual minor questions about the smart phone from my mother. The thing that stands out, though, is not the unrelenting negativity surrounding the phone (she has always been enough to make the most optimistic person break down) but the increased swearing she inserts into a sentence; it is like a teenager trying to be edgy with f-ing this, f-ing that.

Flashing light bulbs and how nothing is never easy with them: A simple job with the lights flashing turned out to be more of an issue (due to terrible ceiling) and the job couldn't be completed in the best of ways. No one's fault just a typical it-had-to-happen-at-their-house.

The issue was my father and his lack of appreciation; I swear I could stand there moving my hands around repositioning the planets, the galaxies, Heaven and Earth and it would not be enough. He said nothing afterwards and was instead ordering my mother around to do the most menial jobs that he could have done e.g. cloth to clean up dust etc.

How do you all cope with the total lack of appreciation for the things you do? He has always been like this and I utterly despise it. No "please", no "thanks", barking orders and she jumps to his command. It has completely shaped how I see men and I am so thankful I am with the polar opposite man to him.

We are both back there tomorrow to try and resolve this new ass ache.

Mil birthday , we took her out to a place she loves and hasn't been to for awhile , paid entrance fee . Nice meal in cafe , paid again .
Surprise birthday cake & candles . Took her home more birthday cake , presents etc gave her a lovely day .
It was something she'd wanted to do for ages and no mean feat to get her ready & out of the house .
No telling us she had a good day , no thank you for the presents , no nothing .
So I commiserate to those that feel unappreciated .

I'm afriad I have got to the point with DM that I no longer care very much. DM herself is long gone and we werent that close anyway. I visit each week out of a sense of duty.

The person I visit doesnt know who I am, doesnt look forward to my visits, doesnt notice when I have gone.

And I will freely admit to arranging things on my visiting day so that sometimes I cant go.

You’ve forgotten to include receiving a message a few days later saying that they’ve not seen you in ages and can you come that weekend. Made worse, that in addition to the lack of appreciation, you were desperately hoping you might be let off one weekend because of all the effort you’d made the previous weekend.

DM used to say please and thank you for everything, but now she doesn’t acknowledge anything I do, it’s just on to the next thankless task - today it was her wanting me to poke something into her hearing aid but I had no idea what I was meant to be doing, so got shouted at for doing it wrong. I know it’s not her fault because of the dementia, but it’s still galling. You read about how people with dementia like to be read to, or have their hands stroked gently, instead DM is insistent I spend my visits counting her Tena pants or locating some inconsequential item and unless she’s in a very benign mood ( having just taken her meds) won’t let any deviation from today’s obsession. If I am really lucky she’s asleep when I visit.

DF is the opposite - grateful for my visit, thanking me for coming, although there was a tricky minute when he seemed surprised I had bought new PJs and said he didn’t need them, although he had personally picked out the pair last time I was there.

It is a lot easier now they are in the care home. I can mostly switch my emotions off when I go in and just do what needs to be done.

In my visits to DM I do things which are notionally for her but in reality are performative or are for my benefit.

Performative in the sense that I want it to be visible that I have been - fresh flowers each week - not just DB.

For my benefit because arranging flowers, tidying up a bit etc gives me something to do and to tell DM what I am doing. I also revive the dried flowers in her room with essential oils. It masks the smell of kidney failure.

Now that DM's memory & sense of reality have totally gone she thinks she brought the flowers and that she is sitting in a chair in her parents' house.

My DM has (largely but not entirely due to the dementia) become the sort of elderly person she would previously have complained about. As a child I had a very elderly aunt that we used to visit who lived in sheltered accommodation and had lots of health problems but always seemed cheerful when we visited and wanted to hear about our adventures/play games etc rather than talking about her ailments. Mum always told a story of asking her how she could always be so cheerful, despite her illnesses and difficulties with getting out etc. Apparently her answer was that if she was miserable no-one would come; she wanted to enjoy her time with visitors as there was enough time to be miserable if she wanted to when they had left. Mum thought this was an excellent attitude. She was less impressed with her own father, who for the last decade or so of his life spoke about nothing but his medications and ailments. Mum is very definitely behaving more like her father and in fact expects me to be available almost 24/7 to discuss her medication and ailments at length. If I try to change the subject and tell her something nice that I've done, or about one of the DCs achievements she will put the phone down and tell me she is very busy. She always did tend to expect me to do far more for my family than she would have thought was reasonable in any other family, but it still feels like dementia has taken away her chance to be the cheerful old lady she may have aspired to be.
I agree with pp, who mentioned the advice about dementia patients enjoying being read to and having their hands stroked. I'm sure that's true for some and it's wonderful that some people find ways to connect. But my experience is that Mum currently just won't agree to anything relaxing or vaguely pleasant when I visit. She could currently quite easily go out, with assistance, and I (as well as some friends and family) have suggested short trips out but she refuses. There's always an excuse of being too busy (having an appointment later that week seems to count as too busy), not feeling up to it or having to wait in for a phone call. I know she probably feels anxious about going out but she manages going to medical appointments and it really feels like she is missing out on a final chance to do some nice things before she really can't.

My father doesn't know who we are anymore. Any hand holding would result in him reacting as if he was being attacked. There's no quiet reading or reminicing, in fact I thought he couldn't speak anymore as he says absolutely nothing to us. When a carer comes into the room though, he can speak. Basic responses and smiles and thank yous. For us, the blank strangers stare.

I've completely disconnected now and spend much of the visit checking if he needs new shower gel.

Dementia is so variable, from individual to individual as well as over time, hand stroking will never be perfect for everyone but if you’re flummoxed by the challenges around communicating it’s something to try.

My grandmother had a phase of anxiety and agitation, then a phase of being blank and passive. Both were distressing for the family.

DM had a very minor stroke a number of years ago and made what on the surface seems to be a full recovery, but she rarely says please or thank you now. Before I twigged I used to object to being ordered around and we discussed it and somehow she does still have some awareness around the issue as occasionally she will add a belated “…please!!” (said bossily after a few beats) which makes us all (DM as well) laugh.