need to rant

[ffsitsshit]

for years we have been dealing with ill health which is getting worse and worse
its been a roller coaster for ages up down up down
each day the phone call is expected to say they have passed but then they pick up again and balance precariously on the top of the roller coaster before it crashes down again
now its crashed down again and its a nightmare
nobody can help but its a mess
we don't know if this is the end or if its going to pick back up again and haul up the next hill ready to crash again
im cant sleep, i don't know what is happening
i think its time for this roller coaster to be pulled off the tracks

If it's bad for you , imagine what it's like for them .

yeah i know. that really doesn't help.

I think it’s hard for people who’ve lost parents to read this “i think its time for this roller coaster to be pulled off the tracks”. It makes it sound like you wished they were gone. Sorry if it’s not what you meant but did t doesn’t come across well

i'm sorry to have caused upset
just the constant this medicine that medicine this surgery that surgery
none of it works

It's exhausting for you and distressing and undignified for the sick parent. This isn't who they are and it isn't who you are. Ask them to help you make a list of little fun things they like to do. Even if it's something tiny like a favourite tv programme. Quality of life is really hard to maintain when it's all about the medical stuff. But that's where the successes - and comical "disasters " can be.

I think it’s hard for people who’ve lost parents to read this It may be hard to read but you don't have to answer when someone's clearly at the end of their tether.

ffsitsshit

So sorry op for you all. What help are you gett8ng? Worth seeing gp?
It is so hard.🌺

ffsitsshit so sorry, for the record I have lost a beloved parent but that does not stop me empathising hugely with the despair and desperation you are feeling. Some lives do go on too long due to endless medical intervention and it is terrible for the loves ones - as the last memories are filled with the endless horrors, it takes a long time for the happier times to re-emerge. You are entitled to all your feelings, including that enough is enough for everyone concerned. I hope that the rollercoaster is able to end with some dignity and you all find peace.

thank you. they have very advanced dementia and are clueless about what is happening, they think i am my teenage son at the moment.

Oh so sorry ffsitsshit so you have effectively lost your parents already and are living in the advanced dementia horror show where the body is still there but your lovely mother and father have gone. That is so hard and I know it feels so unfair. Please try and take care of yourself however you can, because this can destroy your own physical and mental health. Take care x

I'm so sorry ffsitsshit, that's really hard. I am often grateful that my grandmother and father didn't get dementia and were able to eventually dig their heels in and say, "I have had enough. Let me go." Although in the case of my grandmother, her children had to argue with the doctors to get them to acknowledge her wishes.

oh OP I am so feeling for you

my dad is dead but I wish he had been spared all that and I am desperate that my mother will somehow avoid it...and in time, me! I think I'd do myself in before I'd go through all that.

what is the situation medically? Are you in that awful place where doctors try to do everything in order to avoid being sued?

some honesty if it helps you....I always ask posters on this board how old their parents are. It's because I hope that if mum gets to 90 or something I will have been able to detach somewhat.

my dad said himself, in his last attempts to avoid medical intervention, "this is torture for the family". Do not be made to feel guilty by anyone saying "I want a parent back" - they have no idea what you are going through unless they have been through it themselves. and then if we want a parent back, we want the healthy happy one, not the one that spent ages yo yoing in and out of hospital!

My very sorry, op. What a nightmare. I think it's deplorable that our society allows people to live like this. It's just cruel.

bellini "Ask them to help you make a list of little fun things they like to do"

no offence bellini, but I'm not sure I've seen many posters on here who have a sick parent who could actually do that. Spending ages in hospital doesn't usually mean anyone having any mental space to find lists of "fun" things to do. The elderly person in the hospital is often distressed and terrified and probably wouldn't know what the word "fun" meant.

@ffsitsshit I hear you and understand. Been on this journey for a couple of years, DF died and I naively thought hings would get better. They didn't as DM's issues rapidly became worse.
Dementia is a terrible diagnosis for both the sufferer (and boy do they suffer) and their family.

If you do Facebook have a look for a closed group Dementia Connection a non-judgemental support group of other in a similar journey, also RSAS dementia carers count either on facebook or here:www.dementiacarers.org.uk/?fbclid=IwAR1L_QfJBHypeOc7l1DrgxgXbbi3VkmZ7kg-Gne2RCu5RALJyeHQEv1y1eQ they offer brilliant courses which I have found very helpful.

My parents are both dead now. They were both very ill prior to their death for a long time. They didn't have dementia . I understand now that the op's parents do. It requires a different sort of care.
So, frankly, I do know what I am talking about having endured the misery of caring for sick parents who are fed up of being sick. And how important it was to try and retain quality of life for them and to find ways to give them control over a shitty situation.

That was a response to @RosaWaiting 's observation

Bellini your post was massively tactless to a woman clearly at the end of her tether, as were a few other posters. It is good you have reflected on it.

It's frustrating, I now live with my elderly mother so totally understand that feeling....We are the sandwich generation, we raise our families and then have years of struggling to care for our sick parents. I think you need to try to get some help, see their GP and ask for additional care to help you. Age concern are good for advice too. Try and make some time for yourself each week even if it's just a few hours, or your health will suffer too xxx

I've been at the end of my bloody tether too. Pretty ridiculous to assume I don't know what I am talking about. Having sat for hours watching my sick parents presenting horrible never ending symptoms which I won't describe here, I found it helpful to have some alternative trivial shit to talk about with them to make them feel less like a vulnerable patient and more like the person I knew they were. They didn't have dementia and it's not clear from the original post that the op was dealing with this. So I responded based on my personal experience of a non-dementia sufferer who was dying slowly and painfully.
If the op thought I was tactless, I would be happy to apologise to them.

Bellini's post wasn't tactless, it was a good suggestion.
thanks for the support.
They are in their late 80s but this all started 4 years ago

Have you got power of attorney for health? Can you sit down with their doctors and focus of symptom control , community based care, no Intravenous antibiotics, focus on their quality of life rather than sustaining life at all costs?
It is hard and distressing to watch your loved ones slowly deteriorate. Dementia in all its forms is horrible for loved ones .xx

I also agree with the ' list of fun things' my dad has advanced alzheimer's - no idea who we are. Sometimes shows more interest in mum than the rest of us but otherwise shows no ability to distinguish people. But we visit regularly and try and work out what might trigger an interest. Pictures of
Holiday destinations, talking about ex colleagues, pictures of pets, toys he bought us as children - all these have sparked recognition but took some thinking about what he might remember.

I understand, really I do. My Dad - with prostate cancer, Alzheimer's, vascular dementia, a hydrocele, one leg (the other was amputated in 2017 after a nasty fall and broken ankle), pressure sores, catheter issues and a nasty infected cut on his leg (and breathe!) died 2 weeks ago. My rollercoaster has come to rest, and I am so glad he and I are off it, although I miss him terribly.

All I can offer is that you have to take care of yourself as well as you can. Build some fun into your life - it won't detract from the care you give to your parents, it'll just give you a bit more strength to ride the waves with them. Go out for dinner, buy something stupid and frivolous online, find a trivial hobby (mine is/was making bath bombs) that you enjoy. You need the resilience such things can give you. Talk to your friends and family - I could never have got through the past couple of years without the support of both. Well, actually I probably could have, not having much of a choice in the matter, but it would have been so much harder. Don't be afraid to laugh at some of the absurdities that crop up with dementia - no one will judge you for it.

Just let yourself be human - cry when you need to, laugh if you can, don't try to be 'strong' - there are no medals to be earned. Feel free to PM me if you ever feel the need - gawd knows there were times I wanted someone totally uninvolved in our situation to talk to. Sending a heartfelt hug, sod Mumsnet tradition!

A letter I had printed in the Times shortly after my mother died. I didn't choose the headline. Mine is the first letter.

I have to say that if the illness doesn't wear you down, the State will. No question my mother was trying to be killed by the State for years. It's a war of attrition.

I would say, take it in fortnightly chunks. Also, it's the stuff you didn't do that gets you after, anything you didn't get round to doing but had on the backburner as something maybe to look forward to.

It was when we perhaps 'relaxed' a bit that she went, sometimes it's like the tension and fight is what keeps them in the battle. There's talk of when you walk out the room and then they choose to go. For some, that makes sense because they want it to be private and may feel they are letting you down if they go when family is present.

Beats me why someone doesn't suggest palliative care to the OP. I mean, the State was forever suggesting it to us. Anyway, nice bit of classical music on the iPod, or a turntable playing old records. A cool, airy room, no pain. Small fridge in room.

There is a point when you could be just as effective if you took a less stressed attitude about it all. That said, the week I took that view was the week my mother went.

Still, wish I'd known sooner to stay off the filter coffee, visit the steam room/sauna, get some kind of massage or something...

There's also such a thing as 'anticipatory grief'... Google it. Also, the stress the OP is feeling may be some kind of shared bond with the parent who is also going through the same, you become sort of bonded in that way, so be good to yourself and it may reflect back on them; they may pick up on it. This sounds like bullshit, but I do sort of see it that now looking back. My stress became her stress and vice versa. I just didn't have the energy to push her through any more, both our batteries were wearing down and I didn't have the energy to appreciate the time with her I had left.

Don't get me wrong, we did everything, but love is infinite and my energy was not, so it was always going to feel like I fell short, I suppose.