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

Ps. This thread has really got me thinking , in a more selfish (?) And proactive way.
I hope that this is OK to post.

I tried to talk to DH about it, which tbh is rarely a great experience. Emotionally complicated stuff can make his head go arghhh a bit, and it becomes a bit fraught.

Basically I wanted to tell him about some of the issues the thread bought up, and what I ( me) wanted to do in the not too distant/ unknowable future. Namely an Advance Directive ...and to discuss the issue of perhaps my deciding not to want to carry on if I feel my quality of life isn't great. Unless voluntary euthanasia is legalised.
Both of which we've talked about before. I thought he was in agreement. We've both stated officially that we'd like to donate our bodies if possible, and that we want direct cremation/party. Fine and dandy.

Trouble is, it rabbit holed into a load of " oh yes but what if/ you'd have to word it precisely/ the medics will do what they want anyway " - even use by dates on medications (!). When we got to the point of him saying he's sure family would rally round if I needed support ( Oh yeah ...biiig trigger statement for me), I thought Nah. I'll set it up myself. Quietly, and as efficiently as possibly. The way I want it. Its not up for negotiation.

I think that, as our relatives get older, and as we also age, it becomes harder and harder to have these discussions. Other people's stuff gets in the way. DHs M is alone now, mid 80s. He loves her. My son loves me, but I won't want to live with him. Id rather live in a commune if it comes to that. Social, independent, people around just in case. Health - I hate the idea of chemo/radiotherapy, even though one DSis is going along that route. Her choice, and I hope it works. I'm supportive. But I don't want to end up like my M. They say that the only certainty in life is death, and people accepted that. But now they don't?

Although I wouldn't mind hanging around as a metaphorical fly on the wall, to see what happens to mankind. But as an atheist that probably won't happen . Drat. Can't have it all ways

@keepon welcome to the thread. My experiences the last year have certainly made me look at things differently. I absolutely do not want to leave my DD with the problems I've been left with. No idea what DF would want re his treatment (DM has explicitly told me what she wants) clearing out years of hoarding and carrying out house repairs and decoration as their house has not been touched for years it's mentally and physically exhausting and everything is guess work as far as DF goes so we are just doing our best. Everything has been written down for my DD she knows where to find her instructions and I have no clutter anywhere now

@Tara336 . Thank you. Id love to de-hoard my house, but unfortunately DH can't. And I mean can't. It runs in his family. FIL died a couple of years ago and his sons are still trying to palm off his stuff, to other hoarders. They still havent gone into the large attic 😱
My DB says hoarding is complex and not as easy as throwing things away. He gave me the phrase 'aspirational hoarding', which I ended up doing as well now ie keeping things that you'll get around to one day. In my case it's craft stuff. And clothes, and books. Feels like a grieving process letting go. But I am doing it. Not foisting it on to a family member as its 'sentimental'as my M tries to. There's so 'stuff in the world now we're literally drowning in it.
It helps that we've decided to stay here as long as possible, so no keeping hold of anything that can't be on display/used now.
DS shouldn't have much to go through, I hope. I give him permission to call in the house cleaners. They sound much more empathic than I thought 🖐

@KeeponReading I've got a great big plastic trunk of my sentimental things and I have created a rule for myself that if I pit something in I have to take something out. My DF had some interesting stuff like his old school books etc so we have kept a couple but we threw the rest as there were tons of them he probably had never looked at then since he put them in the cupboard. His shed and the garage were really hard work, we sorted through everything and found used metal paint tins where the bottoms had rusted through and separated from the top they were that old, we got a clearance company in for that, they charge by weight so was a bit expensive but a relief. I definitely think with DF it was an emotional thing hoarding and it made me feel guilty throwing things but I think it's been a relief for DM as she was having to live on the chaos. I know DF would go mad if he knew what we have been doing though.

@KeeponReading welcome and I’m in the self-reflection stage as well, thanks for sharing your story. I want to get my wishes recorded as well as minimise and declutter - I haven’t found my clutter threshold, nowhere near yet and still have DC at home living in the clutter. I don’t want that for any of us.

@Tara336 I’m still at the very edges of hoarding parent’s stuff and exhausted by arguments about obvious waste like leaked batteries. There is so much more but losing control is causing focus on individual items.
I have discussed with my siblings that we will just get things to the stage where a clearance company can come in and do the rest but ‘by weight’ is a bit terrifying when there are 6 rooms stacked full.

@FiniteSagacity.
💐
I find the 'stuff' drains my energy. Id never be a minimalist, but everywhere you look is rammed. Always a reason you shouldn't get rid of extraneous items. I'm going to have to be harder. More sneaky ?
Anyway, I've removed us from the main thread enough. It's avoidance, and the addiction of support.

And that's partly because I'm due this morning to go to visit M for a couple of days. A mere 3 hours drive away. . And i don't want to ! I have a visceral reaction to being in the same space as her. After avoiding visiting for a couple of years ( see, I can pull the old age excuse now as well ! My mother was, and is, the queen of excuses), my underlying state has switched from fear ( yep) to irritation. Especially when she play acts' nice', to try to manipulate me, or snaps at me as if I'm 5 years old.
I'm taking my gardening tools, and hopefully can escape into the garden . Or should I say jungle. She cancelled her gardener, who she can well afford.

There's such a common theme on these threads, of elderly parents who have plenty of financial resources, refusing to pay for cleaners, gardeners and carers.

I have a theory about that, because - as you say, it's a recurring theme in threads like these.

I think it's a combination of the parents feeling like that's utterly profligate, so it's seen as out of the question.

And i also think that they're happy to run their daughter into the ground to make up for it.

Perhaps that's too harsh, i dunno. 🤷🏻‍♀️

@ChimpanzeeThatMonkeyNews profligate is such a good word to describe the attitude to not giving anything up. I’m not without any empathy but DF is in a nursing home with a DoLS it’s not IF his hoard of stuff goes, it’s how and when.

In more lucid moments I was recently subjected to ‘you earn more than I did in my last job’ - basically it is assumed I can pay for his needs with my money as well as my time and energy. Never mind the grandchildren he never asks about or that I might not get such a good pension as his generation did. There was also saving of stuff ‘for future children’ because all his grandchildren grew too old for stuff while he wasn’t looking that blew. my. mind. This was accompanied by ‘I can still change my will’ if you won’t do as I say.

I honestly questioned why I keep going back and am having a break this week as I’m fortunately not in bedside vigil mode at the moment. Running daughters into the ground is right.

Good luck with gardening distraction @KeeponReading.

@FiniteSagacity I think the last lot of rubbish cleared was about £150.00 but there was a lot of very heavy stuff in there and filled half the garage if that helps give you an idea of costings. We also had lots of scrap metal which obviously is free to get rid of with a call to the local scrap man. There's still a lot to clear but it does feel better and little more organised now. I just need ti get through to DM that she needs to carry out some urgent house repairs before buying things she doesn't need (ie huge TV),.I've done some repairs myself plus helped decorate 3 rooms but it's exhausting on top of work and running my own home right now.

My DF was also under DOLS order after being sectioned due to his dementia (violence/wandering) so you have my sympathy as some days he seemed lucid and would come out with really stupid comments/ideas about his situation. In the end I found telling him he was "a ward of court" helped as it was something he understood easier (kind of) and stopped blaming me for the situation (it always has to be someone's fault)

Thanks @Tara336 - it does always have to be someone’s fault!

I'm here being run into the ground, waiting for an ambulance - 2.5 hours so far because DM (91) has fallen over in her house and has severe pain in her side. My car got damaged at the weekend in a fairly frightening incident (not driving) and I'm trying to sort that out at the same time, and DM just says she'll pay for taxis for me to travel (I can cycle to her house). Started a little meltdown from me about stopping just trying to throw money at me and actually care about my wellbeing and get some proper support (she has none, refuses). This is the third 999 call in 2 months leading to two previous hospital trips, one two week admission. I'm starting a new job next week, God knows what's going to happen then. Cancelled my plans for tonight, I feel like I can't have anything nice it gets ruined. I'm really hungry but feel like it might be bad form to order a Deliveroo, though it will probably come before the ambulance! Just venting, thanks for reading!

@SierraSapphire that sounds horrendous. Is your DM still on the floor?

I think you should order the Deliveroo, you need something to eat. I am guessing your DM can't manage taxi transport to hospital?

Once you are at work, the solution is, you can no longer be the solution. I know that sounds callous, but you will need all your energies for working (I was utterly exhausted when I resumed work after a break) and you need to keep your job so you can't drop everything to attend to your mum. It's often said on here that it takes an absolute crisis to bring about a change.

I'm so sorry and hope the ambulance gets there quickly.

@SierraSapphire God definitely order yourself the Deliveroo what a nightmare your having! Maybe after this being the third 999 call SS may step in and take over? It's all to easy to let this take over our lives because we rush from one crisis to another without the time to catch breath and work out a sustainable plan

@HellonHeels DM can't move without crying out in pain, I can't get her up. I'm not sure I'd enjoy eating sat here either, I'm hoping to escape to Pret if they take her off! The Deliveroo would have been here but the ambulance isn't!

Ok thanks for the encouragement, the Pret is coming 😁. Trouble is she's a self-payer and emphasises to soc servs she's fine, so what can you do? (Rhetorical question!)

You ignore all calls and messages from SS when they try to discharge her into your care.

Grey rock 100%

You are NOT AVAILABLE.

Nan has slept for several days now - no food and very little water. When I went in today she woke up and got very distressed. She then had an accident so I had to leave. I don't want to make her upset again - I'd rather she slept and was at peace. Do you think it's bad if I stay away for the rest of the day? They will ring me if I'm needed there I assume. She looks so tiny now - just wasting away. I don't know how she is still with us tbh

I've done all that @TheShellBeach - last time they put in carers three times a day so she gets up at 4am or something to outwit them, then they go away again! The paramedic is trying to persuade her to get carers. (He arrived about 5 mins before the Pret!) They've just taken her to hospital, so I'm off home. Thanks for the company!

DF now cannot walk as he keeps falling so the home have decided for safety he must now be in a wheelchair. DM said he didn't speak at all yesterday just kept sleeping although this heat probably has some effect and makes him tired. I'm going to try and visit this weekend (I live over 100 miles away). I'm trying to create a place where we are at peace with each other because he was far from a kind loving DF as you can get but for my own sake I need to do that. I did tell him how I felt a few weeks ago when he was with it but he denied everything (not unsurprisingly) but I needed to say it out loud to him regardless and I do feel better for it.

I'm in my 40s and have a progressive terminal illness that causes a slow decline - My lungs are destroyed by a genetic condition.

One of my biggest fears is becoming reliant on those around me in such a way it is filled with bitterness on their part (and I absolutely understand how that could be the case - I know what long term stress does to a person ).

Im scared of the day comes that I cannot work any more (I can still wfh at the moment) - the additional pressure on my husband

I do not want to live a life where I have no quality of life. I do not want to live a life where I am afraid and I am gasping for air - (that is how this ends)

I am terrified

This thread has already ripped the lid off a reality I knew was lurking behind a curtain, and I had not really taken time to consider in any great depth.

I will depart this mortal coil long before my husband and I feel bitter about that. We always imagined growing old together but I have FOMO about a life I won't get.

I feel robbed. We had big plans to travel and now travelling to the other room has me gasping for air.

Absolutely, So sad. Leave it until it becomes unbearable.

I hope you are having the absolute best care to deal withthe emotional aspects of this.

So sorry.

I am very sorry about your health condition. I hope you have good healthcare including mental health support for both you and your DH.

from a carer perspective (because I presume that is why you are posting here) you can make your loved ones lives less complicated by discussing with them what your wishes would be at each stage of the illness, and making sure they are written down. And when necessary, please allow them to get in as much external help as they and you need and can afford so that you can focus on just being a husband and wife as much as possible in the time you have. Gardners, cleaners, housekeepers, online shopping, meal deliveries, carers if you need help with personal care. Basically outsource whatever you can of the essentials and drop the non- essentials when they become a burden.

much of the frustration and exhaustion on here is a consequence of a whole host of factors that affect elderly people and their daughters as they age and decline cognitively. It sounds like while there may be an overlap in practicalities, your situation will be very different emotionally.

My resentments with my mum come because if she had accepted that moving to residential care was the best option when she decided to take to her bed all day, by now I could be just her daughter visiting and holding her hand and chatting. As it is, I run her life from 100 miles away - and spend a day a week with her when I am her shopper, her property manager, her administrator, her PA, her podiatrist and general “go to” for any queries, when the answer is always “ask funnel, she sorts everything for me”. I have very little/no time to be her daughter any more. Don’t let that happen to your relationship with your DH. Especially if he’s anything like mine, with a tendency to be stoic and think he’s got to fix everything himself.

Both my parents dementia’s are genetic, I therefore have a high chance of developing it anytime in the next 10 years. I have spent the last 20 years caring in various aspects for my Dad then my Mum. Both are now in care homes but I am still very much involved in their care, it has pretty much taken over my life. My parents are only in their 60’s. I know that if/when I start to get ill how horrible it will be for my husband and kids. Both my parents have been very resistant to care, they have both been aggressive and sometimes violent to myself and care staff. In the early days pride and denial made it impossible to get outside help, they relied on me alone and it became very isolating. They also made getting anything done as difficult as possible as I had obstacles thrown in my path trying to accomplish the most basic tasks thanks to their pride or anxiety. During this time I missed out on spending time with my husband and sons, avoided holidays, I missed out on job opportunities, lost my meagre savings. I am hoping that if/when it’s my time, and that could be anytime soon my long term memory will be there enough for me to remember what I have been through for the last 20 years and know how I should treat the ones I love. Don’t isolate my family, take all outside help, don’t believe the only people who stick around are out to steal from me, let others take the reigns. Having had the experience I have had I hope it will impact on how I behave. I have had years of genetic counselling to come to terms with the potential future.

I’m really sorry you are going through this Slidingdoors, it’s horrific you are now grieving your lost future plans. It’s so unfair.