Cockroach cafe - summer

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.

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.

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 .

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.

@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.

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 🥂

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

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.

@QueenofAssam I’ll celebrate that win with you 🍷

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

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.

Mittens yes to all of this. Solidarity ✊❤️

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.

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.

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.

@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.

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

Come and sit next to me, @bigdogpaws . It's actually quite peaceful in the Bad Daughter corner once you get used to it, and there's plenty of gin to hand.

DM had cancer when she was in her 60s and was adamant that she wanted any and all treatments to give her as much time as possible. After several years of very invasive and unpleasant treatments she got the all clear and has been cancer free ever since (now in her 80s). So, of course, everyone in the family agrees she made the decision. Brother is currently using this as 'proof; that Mum wants us to always insist on any and all possible treatments for any illness. He is livid that I have suggested discussing ReSPECT forms/end of life care etc whilst Mum still able to express an opinion. The last time I suggested we discuss this Brother's comment to Mum was along the lines of 'She wants to talk about you signing something to say they're allowed to not give you treatment if you are ill. You'd always want to have medication to get better if you were poorly wouldn't you?' I have given up now. In her current state, Brother is telling her what she wants to hear- that she's fine and will get better soon, she doesn't need to make any big changes and he and his family will live with her so she can stay in her own home without any outside help and everything will go back to normal when that happens. According to Brother and his partner (who apparently knows someone who knows all about this), they don't really need LPA etc because they will be living together as one big family so they can just sort everything out between them 'if' Mum can't manage any more. All I can do is watch from the space in the sidelines reserved for Bad Daughters until it all goes wrong.

I’m avoiding ringing mine because she’s asked for something I cannot achieve. I suspect it’s a Mexican standoff. She’s not ringing so she can assume I’ve achieved it. I’m not ringing because I don’t want to tell her I haven’t and then face the tears and recriminations.

What a waste of energy.

As for discussing EoL care, she is very opposed to voluntary euthanasia and any attempt to talk about EoL is likely to be taken as a suggestion that we bump her off, and a whole landslide of nastiness towards us will be unleashed.

So whatever her wishes may be, they will remain unknown, and that's down to her.

It took me something over 10 years (!!) to get my mother to agree to doing an LPA. She eventually did with bad grace, but only for financial affairs, and although it's registered it's not activated.

She won't let my sister and I near her finances if she can help it (which is quite hurtful actually, does she think we're out to rob her?). Can't do any internet banking. Can't see to sign cheques. Has to go into town by bus to withdraw any cash. Says my brother can help her with it all (he's the only one of us not named on the LPA and the only one of us to have already been scammed several times over the years.).

What could possibly go wrong?

I think she genuinely thought that if necessary we could just sign stuff on her behalf etc. She dealt with my grandmother's estate and my father's but they both died around the turn of the century when regulations were much laxer!

When I told her that without LPA there was no way we could legally access her money, eg to pay the bills to keep the roof over my brother's head, she glared at me and told me I'd just have to do it illegally then!!

I can't offer advice on how to care less or how to wash your hands of ridiculous situations, because it's taken me most of my life to reach that point. But my mother's stubbornness and rudeness has gone a long way to relieving me of the emotional caring load.