Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@TrayofRoses there is a lot of autism in my family, including I suspect my mother, but it is a difference not a disease. It does sound as though you are the end of your tether and that work and home life are too similar, I think your idea of trying to find work in a different type of setting (non-care) is a very good one, with the possible end goal of moving out from your mother’s home. I have a couple of friends who pack orders in warehouses and really enjoy it.

Neither of them have ever really respected boundaries but I've been able to keep them at a distance before. I know that in mum's case the dementia is behind a lot of this- in many ways she's like a small child repeating 'I want' without considering practicalities or the impact on anyone else.

I want to apologise for the wording I used in my last post, especially the phrase “neurological diseases and bullshit.” Reading it back, I can see why people found that upsetting.

What I was trying to express was how overwhelmed and burnt out I feel right now. I work in care and I’m also dealing with some very difficult and confusing behaviour from my mother at home. I’m worried there may be something neurological or cognitive going on with her, but we don’t have any answers yet. It's so hard because I am consistently written off.

Earlier in the thread I compared some behaviours I’m seeing to autism and used the word “disorder.” I realise that may also have come across badly. I wasn’t trying to insult autistic people or suggest autism is a disease. I understand autism is a spectrum and many autistic people live full and meaningful lives.

My post came from stress and worry, not from any intention to offend anyone. I’m sorry for the wording I used and I’ll try to be more careful in future.

Again, I do apologise and I wish you all love and peace.

@TrayofRoses take a breath. The point of this thread is space to support and vent all in the same space. We understand this is a tough situation.

Big hugs to you all.
🌻🌻🌻🌻🌻

@TrayofRoses 💐 thank you for listening to what people said and apology totally accepted here. I do appreciate it's a tough situation you're in. Your mum sounds really hard work and quite infuriating at times and a job in care on top of that must be a lot. If there is any space or time you can possibly take away from other people's needs, that might be a help just so they don't feel so all consuming.

I appreciate the apology too, clearly life is very difficult for you at the moment.

Nothing really has changed much here. DM in some gastric distress yesterday but that resolved itself in the traditional way. The problem is that DM barely eats. DB waffled on about 'they' could give her things to help this. Shut up when I pointed out that would require getting a lot more liquid into mum which isnt going to happen.

So DM is very slowly sliding down life's exit ramp. DB still convinced they have conversations about things. DM is just comforted by having people talking around her.

@TrayofRoses who, if anyone, comes to the house to see your mum and her behaviour? Or does your mum ever go out? It sounds like your siblings are all abroad - do they have plans to visit? Could you ask them to? Has the GP seen her recently? Is there anything you need an appointment for? Could you ask the GP to conduct a memory test on her if it has been a few months since he last did? Could you say she is exhibiting signs of anxiety re the washing machine cleaning, rage at times for no reason and also forgetfulness to put washing in the machine but not start it etc see if he thinks it needs medication? Or see the GP yourself about your stress which is at least in part caused by your mother’s decline. If it’s the same GP he might start realising your mother’s behaviour is changing.

If none of that is appropriate, gets you anywhere then all you can do is look after yourself and wait for her behaviour to cause a crisis or event that no one can deny. It’s a tough situation.

@TrayofRoses
@Choux has given you very good advice.
Good luck

I don’t know why this has annoyed me so much but DH had a chat with one of the neighbours about the fact DPs are moving into a care home next week ( fingers crossed). Apparently when DH told him how much it cost he was astounded and asked why one of us didn’t just move in with them and pocket the cash. He then added that his DPs are very insistent that they should never be moved into care.

I joked with DH that we should offer him £150k to move in and do it if it was so keen, after 3 hrs with DM going through unnecessary paperwork in minute detail and trying to convince her that she might want to put something additional to a knitted shawl and one skirt to join her many packs of Tena pants in the case, I was pretty much done as I imagine most people would be. DF seemed quite jolly about going into the home, goodness knows what the consultant said to him but by goodness it has worked.

I am guessing his DPs don’t have dementia or he has female siblings to do heavy lifting.

@rookiemere
Hmm. That neighbour is what eldest dc would call "a knoblord"
🙄🤬

That is a very satisfying word @Raven08 and I think applicable to many of the male siblings of this board.

😂 @Raven08 sounds about right!

Thank goodness it is happening @rookiemere I guess you can squirrel in some actual clothing into another bag at another time so your DM isn't left just wearing tena pants.

Two days in a row poo accidents here usually timed for mid-afternoon when he wants a visit. DH not impressed as it gets everywhere 💩🤢. Hard to know at times whether an accident as DF is quite confused at times or tactical pooing to get someone there, because he got upset with DH last time he went because he hadn't answered his phone when DF called wanting him to put him into bed and hold his hand. He was calling the wrong number and it wasn't bedtime.

I'm seeing mum tomorrow.
She has an appointment with the dietician that I arranged.
I'm not looking forward to it.
I'm not planning to go again until the following week 😬
My sister has confirmed she has printed off the POA forms and is sorting it out.
My brother hasn't responded to any messages since I told them I'm stepping back- this is normal behaviour for him, sadly.
Mothers day next week...
would it be weird to post her card? (Blank inside, no gushy messages or "greatest mum" verse. I always try and get the plainest card I can find..)
She usually comes here for all "occasions", (including mothers day).
Not anymore!.. I wonder what she'll do?...my brother has spent the past 20 years only ever going to his pils for every occasion (his wife will not go anywhere else and to my knowledge has never cooked a meal..)
My sister might offer but she has lots of pets that aren't very well trained and they stink so doubt mum will want to go there...
Pils were here last Christmas (and mum, obviously) so we could actually have a christmas on our own this year!
I know, I know its only March
😀

Well, I thought we got somewhere with DGM yesterday agreeing to more home care visits - and to pay. But then it seems DF has other ideas of trying to combine paid care with the temporary package the council is likely to offer to save money. DGM says she thinks the council carers won't be any good (they were awful last time) and doesn't want them. DF doesn't like watching his inheritance drain away though I guess. I just know she'll be in hospital again in a few weeks.

DF hasn't gone away on the break he supposedly so badly needs because I refused to stay there all week "just in case" the CH try to discharge her without the care being sorted, and he turned up yesterday afternoon about an hour before we left. He says I'm uncaring and will just leave her to it. Which I wouldn't, but the reality is, I'm 3 hours away, and have a family and animals that I can't just up and leave at a moment's notice.

I'm getting to the point where I can't carry on helping them any more. DF is burnt out, ill and exhausted, but won't say anything to DGM because it makes her cry and makes her feel a burden to us. Ditto broaching going into residential care. DF was also shocked when DH said to him that I was also exhausted, becoming burnt out and unwell because I work a full week, try to juggle supporting him with things in the week and then spend a lot of weekends doing a long journey and dealing with DGM. It doesn't enter DF's head that I'd be impacted, because as far as he's concerned, I don't really do very much and he doesn't ask much of me.

I'll be going next weekend and then I'm going to have to take a break for a few weeks. I can't keep doing this, I'm in tears nearly every Monday morning after doing the trip because I'm so drained and can't face the full work week ahead. DF doesn't think my health or needs matter at all next to DGM's or his.

I just need to step away and leave them to it, don't I?

Yes, of course from the outside it’s easy to say so but this is MAD @CrazyGoatLady you are half killing yourselves! Yes the CARE of your DGM is a burden, not her, but it is. You have responsibilities that don’t just disappear. I’m so sorry not to recall the details but it is crystal clear that your DGM should go into respite care and you shouldn’t go anywhere next weekend. Your DF so obviously needs a proper break.

Yes you do . I think when you get to a stage of dreading your own life ( work and crying at the thought of the coming week ) plus how we view our parents / grandparents now we are caring for them and how they view us ( as carers not actual loved ones ) it's the time to scale everything back and allow actual non family people to come in a fulfil that role .
You then revert to visiting socially only .
My mil only now sees people ( family included ) as there only for her benefit . I think she has forgotten how to love people and now sees us as a commodity to use .

@CrazyGoatLady yes you must step away ! I will give your DGM a free pass not to understand the impact on you - she is so old and frail that all her energy will be focused on herself through necessity, but your DF should recognise you have a job and a family and don’t live close.

You have done so much and my fear is if you don’t step back now the cycle will repeat itself with you and your DF in the future.

I would be very blunt with your DF or get your DH to if he takes it better from him. DGM needs to take what care is offered particularly if she wants to stay at home. You have a job, DCs and live a long drive away, he is worried about your mental and physical health, you cannot be a regular part of the caring equation.

My mil only now sees people ( family included ) as there only for her benefit . I think she has forgotten how to love people and now sees us as a commodity to use

@MayBeee yes, this is unfortunately how DGM has come to see us all. She would say she loves us, but she no longer knows how to show it. DF is also going the same way and you are right @rookiemere he will be the same if I don't protect myself here. The final straw yesterday was my SM asking why the boys don't come and help when I said about being exhausted and strung out. They are helping by looking after the animals and the house all weekend while we go and help/visit. I refuse to ask DS2 to not do his sports or DS1 to take time off work to go down to help. They visit with us in school holidays and that's it, I won't have them dragged into propping up a 90 something great grandparent who won't accept reality.

@CrazyGoatLady
This is madness.
please start enforcing boundaries.
Your df and dgm are being incredibly unreasonable.
How dare your df assume you don't do nuch!!!!
Maybe get your dh to tell your df you're stepping back?
Sadly, in dhs family, we,have experience of not getting appropriate care in place due to money/inheritance. It didn't end well 😕

'I think she has forgotten how to love people and now sees us as a commodity to use' I've noticed this with elderly relatives. I wonder if it's part of a sort of 'survival mode'- they only focus on their own needs. As well as expecting me and B to do everything for her, if anyone has ever offered any form of help to mum she considers them part of her care/support 'team'. It doesn't matter if she barely knows them, doesn't like them or their own health/commitments. This includes her SIL (Dad's sister) and my MIL who are both a similar age to her but fitter. They are both have always had a very different outlook on life from her and she has always previously said she finds them irritating/foolish and she doesn't want to spend time with them (she has declined every invitation to Xmas day etc from us over the years on the basis that MIL will be with us and she doesn't want to spend a day with her). Yet now she is seriously suggesting that one of them should invite her to live with them.

@CrazyGoatLady I think you're right to step away, as hard as it will be. It sounds like your DF is worn out too, but it's not fair to expect you to burn yourself out because he has decided that he won't agree to a proper external care package for your DGM. There are quite a few of us on here battling with a similar issue- where one family member is refusing to accept that external care is needed and expecting to be able to dictate what everyone else will do to facilitate that.

@CrazyGoatLady your SM is delusional. How many generations of healthy working age adults does she expect to sacrifice their lives to keep a frail old lady at home ? Her savings are there to be used for her care.

When I was up at DPs yesterday- first DF in hospital then a long visit to DMs sorting out stuff - it was a nice sunny day outside. I had 30 minutes in the sun because I sat and ate my lunch at a car park beside a walk. I felt sad because I was missing the first nice day of spring, but relieved because we are finally moving towards the end of the heavy lifting as at least the care home is only a few minutes away. Also as their only DC sadly it is right and proper that the responsibility of caring sits with my generation ( thank god for DH). Even if DS were older than 19 it would never occur to me that he should be involved in actively caring for this GPs and in fact I have discouraged any movement in that direction as it’s simply not appropriate.

We all have a finite number of days in the sun, let this be your wake up call to protect some of yours.

I am starting to wonder if the unreasonableness, unloveableness of some elderly people is a very natural stage. It allows us to let them go.

@GnomeDePlume a bit like teenagers being so unpleasant you can’t wait until they move out ?

You could have something there. A FB friend posted that he is still upset that his DM was taken from
him so suddenly 6 years ago by dying peacefully in her sleep. Whereas I suspect I will mostly feel relief at their passing, but I am hoping the care home move will allow better emotions to surface once I am no longer chief gopher.