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

Stiffy, you can't keep doing everything that you're doing. I know it's really not easy, but can you halve the number of visits? You'll make yourself ill otherwise and they won't particularly care.

This.

I know it's hard, Stiffy, but you need to step back.

Stiffy big hugs to you. You know this is unsustainable and this change to your work patterns is a chance to change the routine with your parents.

Having already had a month off for stress and knowing that parental care needs only increase as time goes by means you are at prime risk of more future stress leave. And that's before adding in that you want (and need) to be there for your daughter as she does GCSEs. You can only do so much.

What did your parents say when you were signed off work? Were they sympathetic? Did they try to put less pressure on you or did they only consider themselves?

As a start what is the thing that takes the most time or irritates you the most? Could you say that you eg can no longer clean their house as you need to save your energy for things that only you can do like your job, your own housework, being there for DD etc. but you will help find a cleaner for them if they can't clean. Then just stop cleaning and see what gives.

Do you think they qualify for attendance allowance? getting that helped me tell my parents that was to pay for help with whatever they needed.

Could you say 'no visits on work days and only 1-2 visits on non work days are going to be possible. Two hours max per visit. So what can we outsource to others to make this work?'

Also don't hide the stress. In the last few months of looking after my mum and dad before he died and she then had to move into a care home with relatively advanced dementia I cried in front of dad on a couple of occasions as 'I am just finding it all too much today. It feels like a lot of responsibility'. I think it helped us have conversations about how to structure things for him to see we needed to spread the workload.

Still hanging in here and reading others' stories with horror!

So far only one brink of death episode but they survived that and got back to 'normal'. Only with added moaning and 'I could have died, you know'! It's entirely possible they could go on for another 10-15 years with increasingly frequent episodes of this. And I'm hyper aware that my child needs me a lot for at least the next 10 years and by the time we get to 15 years DH will be heading into 'elderly'.

@StiffyByngsDogBartholomew

Please prioritise yourself and you're DC. Without going back to the original thread why are your parents not able to get other care in to help?

Is it just that they prefer you?

@choux they have carers twice a day abd then also in a 3 hour block although that has only just started. They get attendance allowance at the lower rate which dad gives to me towards fuel etc as they already have more money than they can spend.

ive tried to reset things since I was off sick and been going in less and taking more time for myself which I intend carrying on with the new shifts. He forgets it's a 40 mile round trip for me to go on my day off

Dad just wants company all the time, mum is quite difficult but also he makes his life very difficult, much harder than it needs to be. he just doesn't want to be in the position he is in and his ideal day would be carers being there all morning, a friends being there in the afternoon and then me being there all evening to make their dinner and stay overnight. naturally this doesn't happen ! Generally I go in for an hour and a quarter after earlies, an hour at least on lates, the evening of my first night shift as Dd has to stay there, nothing on my second night, pop in for a coffee on my way home from my last night shift. Then one whole day per 4 rest days however that works out and usually they come over on Sundays.

My aunty is down this week visiting so that will take the pressure off for a few days.

My goodness @StiffyByngsDogBartholomew , you really need to put your foot down and say no. From your shift pattern I'm guessing you're in law enforcement. I have very close relative in the force. It's a very stressful job. Please prioritise yourself more. It's not selfish, it's essential

@StiffyByngsDogBartholomew I'm still here too. Saw DF yesterday, went alone as DM always wants to leave as soon as we get there and its a long drive so feels a bit pointless if we don't stay a bit. Because DM wasn't there DF took more notice that I was and was speaking a bit and was very with it. I said a couple things I needed to say and it was a weight of my mind even if it meant nothing to him it meant something to me to have said it out loud, I felt a weight lift off me. Physically DF looks bad and has awful swelling of his feet and told me several times he can't breath or gets puffed out easy, I assume his hearts not so great now.

@StiffyByngsDogBartholomew however much you do it will never according to your parents be enough. They will just take more and more
i think I have said on here I walk past a bench dedicated to a couple who both died in their late eighties and then their daughter who was early sixties who died just after them
thats no bloody coincidence

I’m sorry to hear things are still so hard, @StiffyByngsDogBartholomew . I don’t post often because there’s no change and compared to some posters here I don’t have anything to complain about, but I’m resigned to MIL outliving all of us except my DD. She’s in a care home now following a crisis and thinks it’s Christmas 1954, but there’s nothing physically very wrong- she’s over 100 and could easily go on for another 10 years as far as I can see. The stress is really getting to DH and BIL - neither of them lives nearby and they’re trying to sell her house to fund the care home, which isn’t totally straightforward even with the PoA (thank God we did that, though - this would have been a much worse nightmare without it).

My own DM, age 79, is sensible enough to be planning her move to sheltered housing before she really needs to, so things could be worse there.

Still here. Dm continues to exist. She was taken off all her meds when she had 3 days to live in December. Seems fine, apart from being immobile, doubly incontinent, almost nonverbal, wasting away.

<fistbumps @PermanentTemporary >

@AurumTroyoz Sorry for your loss.

@moggerhanger I hope you're ok. I remember trying to balance up a birthday with a sick parent, it's not nice and it was one of the straws that really broke things.

@StiffyByngsDogBartholomew Like everyone else says, please stop running yourself into the ground woman! Been there and ended up feeling so burned out and sick I was no use to anyone.

@StiffyByngsDogBartholomew Please try to set some boundaries with your parents if you can because the stress they’re placing on you is horrific and completely unsustainable. I used to work a 12 hour shift pattern and everyone thought it was great because I only worked 3 days a week. I had to point out that on work days you don’t get anything else done and it’s a case of go to work, sleep, and repeat. Days off are then spent playing catch up and cramming everything in. It sounds as though one or both of your parents need residential care if they need the current level of input to keep them at home.

I realise I’ve partially graduated from this thread although I still have my elderly step father who is becoming increasingly needy and has no family in the UK.

Another saying you are entitled to put your foot down and say no more, @StiffyByngsDogBartholomew. I realised long ago that I could run myself into the ground for my mother and it would never be enough. Now I do what I am happy to do and have iron-clad boundaries to save me from hating her.

It sounds tough, but it actually salvages our relationship and is the only way it is workable and as a result we get on fine. It helps that she lives 90 miles from me and like your parents she has plenty of her own money so she is in sheltered accommodation which means I know she is in the best possible place. I do remember vividly saying to my OH in 2015 “I don’t think can cope with another 10 years of this” but I had a gut instinct then that this was going to be a long old haul…

I ended up travelling home last night (I live 3 hours away from my mum's care home) as she seemed comfortable enough. I rang for a status update today and they said she'd managed 400ml of fluids and they were going to try her with some yoghurt....

So I now have a grim sense that she's going to rally yet again, and we will go through this hideous loop yet again in a few weeks'/months' time.

How far is it permissible to say "No, absolutely do not poke food down her. How is it in her best interests to be kept alive at this point?" Are the staff duty bound to feed her if she opens her mouth?

I genuinely don't think I can go through all this yet again. I'm not doing the caring, it's true, but the dropping everything and rushing over, the waiting by her bed, and frankly the dashed hopes, are getting me down.

@moggerhanger Oh no. I felt like that the last time my Dad nearly died which was a couple of years ago. My DM was delighted he'd rallied and I couldn't say anything but was horrified we were going to have to go through it all again at some point.

Can you speak to one of the managers at the care home about feeding? They're not going to starve her but my DM has organised for DF's care home to wake him up early to feed him.

@moggerhanger How are they getting food into your mum's mouth. With my Mum they would tap the side of her mouth with a spoon. This unfortunately produces an automatic reflex and the person opens their mouth making it easy for food to be popped in. If they are doing this you could ask them to stop although whether they will is a different matter. Make sure you put any requests in writing and insist they are included in your Mum's care plan.

@AgitatedGoose yes, they touch the spoon to her lips. They rang me a short while ago to tell me she'd had half a bowl of soup. I went and screamed into a pillow.

It's maddening that they think this is something to celebrate.

@TheShellBeach isn't it just. I'm going to try and compose an email asking them what the care plan is going forward, and explaining that neither I nor her sister support ongoing nutrition at this stage. While recognising their caring obigations etc. But for now, I'm going to have a really big glass of wine.

I didn't even know about a care plan. There was no plan. It was horrible to be around.

The absolute obsession with food.