So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

Hello, new to this thread as at the start of this unfortunate journey I fear. Can I ask how do you fit it all in? Do you work part time or not at all or reduced hours? Does your work just let you be flexible if you need to drop things and visit? What about kids and family, is it just a case of abandoning them and letting them down to go and help elderly parent?

@Facecream24

Hello, and welcome. I'm relatively new here, but have been an unpaid carer on and off for many years.

The person I'm currently responsible for is now in a nursing home, and a fair distance away. I am self-employed and manage more flexibility that way (but my earnings take a significant hit and my career development has stagnated agajn). I set aside a day a week for caring responsibilities (so try to do the admin then too). This is only possible because she's cared for by the NH staff.

When I lived with the person I cared for (a different family member), I worked over FT hours as they were unable to work. It was horrendous and has had a long-term impact on my physical health. I had no outside help.

If possible, reducing working hours or having flexibility is helpful. Overall, having done this on and off for years, I'd say get paid / outside help in as soon as possible and set really firm boundaries with the person you care for (I can do x at y time, i cannot do z,etc). I ran myself into the ground and it wasn't worth it, in hindsight.

There is a local carers charity who've been a great support to me. You need to think about your own wellbeing. I didn't before and I wish I had. I hope you've got support around you as that also makes it easier.

I don't. I'm the breadwinner so I can't reduce hours at work (plus work keeps me sane) and my children come first because when I grew up the elderly grandparent was put first and I hated that. Ultimately my priority is keeping a roof over my family's heads.

I have boundaries in place and I push back on everything so the care home (one very elderly relative) does everything like medical appointments, organising hair cuts etc. POA, once set up with the banks (this bit can be a pain!), can be done with online banking in the evening etc. Keep it very simple with direct debits/standing orders and not multiple bank accounts.

I flex work in the sense that I will fit in a Zoom call with medical staff or the CH for a review during work hours. I don't answer the phone when I'm working. I don't get involved with house maintenance, cleaning, shopping, lifts to hospital because I can't (I have offered to organise online shopping but this wasn't wanted) as I'm at a distance and it makes more sense for someone local and available to do it. I do look up local services like patient transport or handyman and make sure they have their details.

I truly wouldn't let my own life be impacted by caring for an elderly person.

You can say no, and help them to arrange care for themselves. Get a social services assessment, and don't agree to be the de facto carer yourself. You've got far too much else going on in your life.

And do start looking at care homes as it's best to be prepared for this well in advance.

I support my mum who lives 100 miles away. She has carers 4x a day and I visit once a week to check on her and do her grocery shopping and any laundry. I ended up dropping from FT to 30 hours a week, visit mum on a Friday and then have a proper weekend with DH. I was burning out doing it on top of a FT position, as well as all the weekday admin, phone calls etc.

I am fortunate to have a fully WFH position with a boss that doesn’t care about core hours as long as the work is getting done, hours are recorded accurately and we meet the clients when they want (her boss went to the gym during the day and blocked out their diary to do it!) So on days where I’ve taken mum to medical appointments I’ve been able to log on and keep work ticking over from her house and make up time during the rest of the week. I recognise though that I’m very lucky in this regard.

Dropping hours was annoying wrt pay and pension contributions but to be honest I’d always vaguely planned that by this age (late 50s) I’d start reducing hours with a view to winding down to retirement in a few years anyway. I think I resent the decision being forced upon me though.

i don’t have children of my own, but one learning I have that works for everyone is to put plans and systems in place so that you are not the default solution to any and all problems. At the start of all of this, any issue would see me hoofing over to mums because I felt the responsibility to fix everything and keep everything nice for her. Now after a near breakdown, counselling and a sertraline prescription, I have some guiding principles. Is this issue something that HAS to be addressed NOW, ie is she injured or does it impact her safety? If so, does it have to be ME that sorts it, or can I call in someone else?

If it’s an issue that does have to be addressed and by me, but not right now, then it waits until the next Friday visit.

if it’s an issue over and above my minimum standards of ensuring mum is safe, warm and fed, then I may address it if I have the time and energy at a time of my choosing. Otherwise I will let it go, and the silver lining of mums dementia is that she’ll forget whatever she was bothered about. Eg she received her usual seed catalogues in the spring and decided she needed me to order her bedding plants for the garden - she has lots of flower beds. I asked her who was going to plant them, water them, deadhead them and dig them up at the end of the year and she just looked at me. I removed the seed catalogues and nothing was said again.

The result is that mum is fine, the house is in need of attention but it is secure and functions. A cleaner keeps the kitchen and bathroom sanitary, a gardener cuts the grass and keeps on top of the weeds. We’re buggering along just waiting for a crisis to force any kind of change.

@funnelfan great advice for @Facecream24 clearly a path well trodden. I’ve tried to adopt a ‘pick your battles’ over the years but I’ve also learned that with multiple siblings in our 50s we are rarely in synch. One of us always has some kind of issues in our own lives so tempers get frayed.
I wish our mother would accept some help from a cleaner or some meals on wheels service but she refuses. She’s beyond stubborn.

Can I ask how do you fit it all in?

I read on here some time ago that you need to be very clear about your boundaries and stick to them, otherwise you can easily be drawn in and sucked down.
If you have other responsibilities you need to think about your priorities.
Do things on YOUR terms.

I work full time and am a lone parent to a 15 yo. I have a very understanding manager and can work flexibly.

I still feel bad that I ignored a whatsapp msg (saw the notification but didn't read the msg) until the next day, by which time FIL had spent a night at the police station following allegations from my very unwell (dementia) MIL. She was not assessed as lacking capacity until a few days later - it took this crisis to speed the assessment along.

I didn't read it because it was Easter w/e and I had plans with my own family and I needed that time and they wanted to see me and my sons. I did end up giving up my Easter Monday to support them.

The more someone relies on you the less they may seek out other support.

Please please do all you can to get your mother to accept extra help. Mine didn’t, and was so vain that she would turn away the Sainsbury’s food delivery guys as she didn’t have her make up on, despite the fact that she was starving and had no food in the house. She is now in a shocking condition following a fall and is pretty much paralysed.

Thank you all for your advice. It all feels so overwhelming already and we’re only just getting started! Your words of wisdom and advice are appreciated. It’s hard dealing with such huge feelings of guilt and I can only imagine that will get worse too. I’m only circa 40 so am not in a position to either want to reduce hours or afford to unless a good drop in living standards which I don’t particular want. Kids both primary age too so I don’t want to miss my time with them and leave them resentful of me. DM so far has been fairly self sufficient. Already has a cleaner, online shopping, a neighbour that drops in regularly. Sibling and I are on different pages though unfortunately and can’t see that changing. Long time of not getting along but they have definitely done more so far out of choice and I think a closer bond with DM.

@Facecream24

You're a similar age and life stage to me. You're right to prioritise your own little family, that's a good thing to keep in mind, I think, otherwise it can and does take over. Great that you've already got cleaners etc involved as well.

What are the differences in what you and your sibling would prefer for DM?

Can I just poke my head around the door of the thread, creep in at the back, and sit here very quietly just for some solidarity.

Mine and my siblings’ journey on this path began a number of years ago and the toll on our mental health is getting quite severe.

@Facecream24 I work full time and am an only child so everything falls to me. It's hard to relax and I feel I'm in a constant state of hyper alert waiting for the next crisis. The journey to my step father's house is 3-4 hours drive. When my Mum died earlier this year I had to take unpaid leave from work and there have been other occasions where I've either used annual leave or condensed my hours into four days. I resent the financial cost of visiting and have ended up spending money on treating myself afterwards because I feel so stressed.
You definitely need to set boundaries about what you can and cannot do. I have a list of local tradesmen I can call upon to do any repairs to my step fathers house. My step father has plenty of money but doesn't like spending it and wants everything for free.
I was very careful about not getting dragged in when my Mum was alive and extremely forceful with social workers that I was not going to give up my job and exist on the pittance of carers allowance. She ended up in a care home. I didn't attend meetings either in person or online as they were always at short notice and in work time. Most of the meetings were a pointless tick box paper exercise such as two assessments for CHC funding. As she had Alzheimer's it was very obvious this was never going to be awarded.
I think it's very important to prioritise your own life and not be guilt tripped into doing everything.

I’ve found this thread so helpful about setting boundaries and being clear about what you can / will and can’t / won’t do.

My DM wants to live in her own home but won’t accept any help (cleaners, carers etc) and we are saying that we can suggest things to help and will make contact with people but it’s up to you to actually do it. We’ve had enough of her agreeing to something and me organising it only for her to cancel it the next day.

We have written to her GP who took our concerns on board and spoke to DM but DM won’t accept help. GP helpfully suggested contacting social services - yeah been there, done that, SS were great but DM won’t engage with any help they can offer or with any other community services.

So it’s stalemate. DSis and I aren’t budging and neither is DM.

@PatchworkOwl it’s more our views on what stage she’s at seem to differ but also what appears to be expected going forward. I’ve taken all advice on board and sent a clear message setting out what my intentions are and for what I can and am willing to do so at least my boundaries are now clear. I guess will need to see how it pans out.

@SabrinaThwaite that sounds incredibly hard but good you and sister are on the same page. Can I ask how often you end up seeing your mum?

And thanks to everyone else. It’s nice to feel not alone when trying to work this out.

@Facecream24 I’m nearly 200 miles away, so not that often. I can head up there when there’s a crisis (not unusual) as I only work odd days here and there and some of it is desk based so can be done anywhere. DH happy to hold the fort at home and let me vent on regular phone calls (DC are away to uni or working now). DSis is about 80 miles away and goes over every 6 to 8 weeks (duty visit, she finds DM visits incredibly stressful and she is still working). DM is not a very likeable person, our dear old dad was a bloody saint.

The one good thing to come out of all of this is that DSis and I are a lot closer than we used to be - chat much more often and definitely present a united front.

Have a mug of tea ☕️and a hug. I’ve been doing this for a year and it’s grim.

Yeah, you can only do what you can, @Facecream24, I think being really clear about boundaries is the way to stay sane in all of this! Hope it turns out OK.

I currently care for my grandmother and had differences of opinion with other family about what support was needed a while back. I would have had support and paid care in place much earlier, and I think waiting added unnecessary stress for everyone. It can be really difficult when there isn't agreement in that respect.

@TheOnlyLivingBoyInNewCross hello. Feel free to rant if you need. I have it pretty easy compared to most on this board, and I know I am not the woman I was 7 years ago when this stage of life really began for me (MIL diagnosed with dementia). I am the total pessimist now, I have reached the point where I am amazed when something goes right. You just get used to things continually getting worse, but somehow never ending.

Another one creeping in to sit at the back of the room. Things have ramped up for my parents in the last year or so.

Dad has a multitude of issues - he’s 75, totally blind (has been for about 30 years), slow growing prostate cancer (diagnosed 15 years ago but no active treatment), wears hearing aids in both ears, had a pacemaker fitted a couple of years ago, has a shunt fitted in his head/neck as he developed normal pressure hydrocephalus which has also caused mobility and incontinence issues. He had a hospital stay a few months ago due to a urine infection and has had a catheter ever since. He’s been getting confused over the last year or so but we don’t know if it’s because of the fluid on his brain.

He lives with mum (70, almost totally deaf, lymphoma - diagnosed 7 years ago but no treatment currently) who has handled most of his care but following the hospital stay adult social services got involved and they now have carers coming in for dad once a day.

I live 200 miles from them, brother is 75 miles away. We’re doing what we can to help, one of us is visiting once a month to help out with any house issues or any other work that needs doing. We have a health & welfare LPA and I’m trying to sort the financial one at the moment whilst juggling work and 2 young children (with DH’s help).

<pours large glass of wine 🍷>

Yup this totally resonates with me. Just over 4 years in parental infirmity and a full day of feeling cheerful is so out of the ordinary now. Balancing home, full time shift work, DHs unfair dismissal tribunal and the hours he is out of the house to try to cover most of the £60k + unlimited overtime salary he lost, increasing parental needs and a teen in the gcse years. Plus menopause.

most of time I just feel fucking glum, I did think that at least if putin goes nuclear I would no longer be having to deal with all this crud.

@StiffyByngsDogBartholomew
Hi. I was wondering how you were!

After the last few years, I now look forward to old age with absolute horror. The way my parents are doing it, it looks like some kind of living death. Both completely housebound, point blank refuse to consider a care home and my dad hates everyone and anyone helping apart from us, his children (who he thinks should give up their actual lives and move in to become full time carers).

Your last sentence resonates SO much. I can’t imagine a time beyond where I am now, when this weight will be lifted.

Absolutely sick of the sight of my parents and their house and totally given up the idea that my mum is ever going to die. I can see this easily going on for another 10 years.

we have had a shift pattern change which now means I spend even more time over there as I don't go home between night shifts. So this week I went there for an hour after both early shifts, today I'm going there now until I go to work at 7pm, I will sleep there between shifts tomorrow and get up at 3 so 3hrs in the afternoon and cook their dinner. Saturday I will go home, drive Dd around her various commitments and try to do some food shopping. Sunday we have to go and deal with some will stuff of DHs childless uncle and drive 2 hrs to do so, plus go to mum and dads on the way. Monday I will be at mum and dads for the day as it's the only free day next week then Tuesday I'm back to work.

plus dad is talking about her having to go into a nursing home in the new year so the attendance allowance he gives me will end and I will be down £340 a month which we cannot afford to lose so I will have to either have no personal spending money or find some bar work.

i just want it all to end.

@StiffyByngsDogBartholomew I think your last post/comment sums up exactly how many of us feel.

If your mum does go into a nursing home @StiffyByngsDogBartholomew isn't your dad entitled to AA on his own behalf? Sounds like you do a lot for him too.