So bloody exhausted waiting for someone to die 2

@JellyWellyBoots if you catch yourself thinking “I should…” then please stop and think is it something you MUST do (eg essential care like feeding your daughter and yourself) or is it something that you are putting pressure on yourself to do.

I’m sorry about your dad but it sounds like he is being looked after now. Don’t worry too much about feeling guilty, your emotions will come and go, just try and ride them and you’ll come out the other side ok eventually.

to @DutchCowgirl and @Saz12

@DutchCowgirl so sorry That must have been really difficult for you

@JellyWellyBoots don’t blame yourself. You did as much as you were capable of. Remember, we all know what a state you were in. It’s a miracle you did as much as you did. Thinking this morning that I’d never taken Dad on a visit. And when my mother was dying, I went back to work 150 miles away - had I known it was to be only a couple of days of course I would have stayed. We all have to do the best we can at the time, on the basis of the knowledge we have at the time.

It hurts at the moment because the pressure is off you a bit. Your brain has been holding it all together for so long, and now it can let all the feelings out. This is the beginning of the healing. Be nice to yourself

@JellyWellyBoots please don't feel guilty! Nobody can do everything and even if you had done those things he wanted (and I bet you have in the past!) there would have been more suggestions and demands. There is no way of knowing when something will be the "last" thing - you could have got the takeaway and then so much time passed he'd have forgotten about it. I spent four months once chasing around doing "last" things for someone, to the detriment of everyone else around. Some of those "lasts" ended up being several times over! They also aren't the things I remember about the person now.

You are juggling so so much!

@JellyWellyBoots my experience is the hurt comes and goes. Sometimes it seemed my “empathy-level” rised and i could cry all day about my father. And sometimes i was just doing the job without any emotions. Take your time to live through these emotions, talk to somebody about it (us here at MN!)

I also felt guilty many times about not doing enough for my father. Some people take their elderly parents in wheelchairs on holidays and football matches and stuff. But i really didn’t have the energy for stuff like that, just like you say. I was his only family left and i could bearly manage the essentials. Don’t feel guilty about it for too long.
Try to focus at the things you might still do: bring your father his favorite food. Watch his favorite movie together. Maybe there is a park near the carehome or they have a garden where you can sit for a while.

@Saz12 we were sitting next to our dying parent on the same days this week. I wish you strength to deal with everything. It is a lot.

@TheShellBeach
Thank you for thinking of me.
DF was admitted to hospital a couple of weeks ago due to having 2 falls.
Since then he has has got worse each day. He can no longer walk, stand, sit up, go to the toilet on his own.
He cried yesterday, that broke me.
He is now in a nursing home where he will receive 24/7 care.

I keep crying randomly, I'm ok all day then in the evening it hits. It's like a physical pain, I can feel it in my stomach chest and throat.

There is so much he wanted to do but I was 'too busy' or 'too tired'. He wanted to go to a harbour to see the boats, he wanted to get an Indian takeaway, go for a roast dinner.
It's too late to do any of that now.
The last night he spent at my house I remember going to bed early because I was so stressed and tired. He wanted me to stay up and watch a film.
I keep replaying it in my head. I was horrible toward the end before he left. I stopped cooking, I became withdrawn, hateful. I've fallen out with everyone around me.

He's not dead but the pain is so real. Trying to maintain my sanity and not break down into a million pieces because DD is with me all the time unless I'm at work is hard.
I can't process anything because I can't hear myself think. So many times I've told her to be quiet, please stop making so much noise, stop banging, tapping, jumping, singing.

Weekends are just filled with shopping for food, visiting DF & cleaning the house, taking the dog out. I struggle to do anything more than that and I feel terrible.

How long will I feel like this for? Why does it hurt so much all of a sudden?

Im very sorry to hear the news @Saz12 and @DutchCowgirl. I'm thinking all bereavements take a long time to process, especially carer bereavement.

Posted here before… after almost ten years of caring for my dad he passed away this week.
I cannot yet feel relieved about it. His deathbed was awful. He got a covid infection and a delirium. He got aggressive, fighting, clawing, swearing, difficulty breathing. And it took 3 days like this before he died. In the last years I often wished he’d die soon… but not like this. So sad to watch. I feel really broken.

Oh and we live in a country where euthanasia is permitted, but he didn’t want it, so eventually this was his own choice.

Sorry @Saz12

Sorry to hear about your Mum @Saz12 . I hope her passing was peaceful and I’m glad the home didn’t insist on continuing with fluids or admitting her to
hospital. Wishing you strength in the days/weeks/months ahead.

I did a visit to the home today DF very with it. Apparently Drs dont know what they are talking about, are keeping him there for the money and not because he's ill and I should write to his MP to get him out. He has also asked DD if he can live with her and told me I should arrange for him to be released and I can care for him. Like he'll I will!

Really sorry @Saz12 - I hope you can find a way through all the emotional and practical baggage this brings. Well done in helping her to be allowed to die.

So sorry Saz12 hope you’re doing okay.
Mum has good and bad days ShellBeach. I never know which mum I’ll get the pussycat or the anxious and depressed one. We’re about half through clearing her flat, I keep taking her bits and pieces from the flat but I don’t think it helps. How are you ?

Sorry to hear that @Saz12

I'm so sorry.

@TheShellBeach , she passed away Thursday. Thank you for your good wishes.

@Metoo15 Has your mum settled down?

How are you @Saz12

And everyone else? @JellyWellyBoots how are things with you?

@Saz12 I'm sorry your mum is nearing the end now.

I cant see how to edit my post, but on re:reading Ive not said quite what I meant!

I'm currently sat with her, watching her die. Day 3. Im relieved the care home arent insisting on treatment, and glad the syringed fluids stopped when I asked. I think. But I keep convincing myself that this will be another near-miss - awake a lot, though not responding; started to swallow again; breathing has become more regular.

DF has been in care home for 7 years. She has had several health crises, but each time has rallied - endless uti and one incidence of sepsis - taken to hospital and treated successfully.

Has been pretty much paralysed from chest down for last 2 or 3 years.

Ive had a "discussion" with care home refusing antibiotics on her behalf. Now has no sign of infection, but refusing food and water - well, not conscious enough to swallow at least. Been 2 days with nothing at all, before that they were syringing in thickened fluids with minimal success. I feel I'm fortunate in that as awful as it has been, I think shes had the level of treatment that she wanted at each stage. Its not what I would choose, and not what shed have wanted 10 years ago.

You can absolutely challenge it. They will probably say they want to wait for a SALT review. If you want to be That Relative, you could ask them why they felt able to start thickener without a speech review, but aren't able to stop it without.

@AgitatedGoose you can ask that question in a calm manner and with a smile and see what response you get. Care homes should be acting in the best interests of their resident but that doesn't mean independently taking action to make the carer's life easier or to prolong the resident's poor quality of life when the family are not necessarily supportive of that.

I can imagine being in a similar situation to you in the future. My mum - dementia and no teeth - is already on liquid medications. Apparently when she was taking tablets, if they didn't wash down her throat with the water, she would then pick them out of her mouth as she didn't realise it was a tablet and try again. I never saw it myself so can't say if the switch was purely for her benefit or to make the carer's job easier. Or a bit of both. She still eats biscuits, sweets and regular but soft food fine but at some point I imagine they will want you to move her to purées. If at some point mum can't chew or swallow - a basic human impulse - then to me that is a sign she should not have any more life prolonging treatments like antibiotics. Mum would not want it if she could speak for herself.

@AgitatedGoose I'm almost relieved to hear it's not a speechie that's recommended thickener. But I'm also really sad that someone has put that in place without advice.

You can absolutely challenge it. They will probably say they want to wait for a SALT review. If you want to be That Relative, you could ask them why they felt able to start thickener without a speech review, but aren't able to stop it without.

Whether you are nice or nasty, Google the local community speech therapy team and see if you can get your views across aboit your relatives priorities and best interests to the team before the assessment happens.

Now, there is one reason why thickener can sometimes help. Some people don't react to thin liquid in the mouth and only react to heavier fluids. But again, there are other things to try if that's the case - and often it's temporary.

Puree is slightly different in my view. It is really common particularly with dementia to reach a point where any texture in the food just doesn't get swallowed but sits in the mouth. And many people would choose to avoid actually choking on a big lump of meat or something. But again, a SALT review might help get some more options.

Many thanks and massive appreciation for taking the time to write this. I'm really unclear why my Mum is being fed pureed food and thickened fluids. The CHC assessment refers to lack of dentition but she has all or most of her teeth. There's a mention of previous swallowing difficulties whilst in hospital although I suspect this was due to not wanting to eat or disliking the food. I gave Mum a drink from a normal glass when she was in hospital a few months ago with no difficulties. She's not had a referral to SALT.
I suspect that the thickened fluids have been instigated by the home and I'd imagine it's a lot easier to get pureed foods into someones mouth if you're trying to coerce them to eat.