So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

So today we had kids activities cancelled last minute and had a free day to put the Xmas tree up. Pangs of guilt that I instead didn’t go to visit DM with my newly free day. I’m going to help put hers up next week but can’t help with the guilt of being a crappy daughter because I’m not there every day and worried about her increasing confusion about things. I’m tired of feeling guilt but at the same time can’t bring myself to spend more time with her when trying to balance full time work, kids and that two hour round trip.

Be good to yourself @Facecream24
You can't be everywhere at once.

Sorry to hear you're not well @PatchworkOwl
It's such a difficult and emotional time.

I don’t know if I’m even in the right place

My lovely mum has had a diagnosis of lung cancer (stage 4) for the last 2.5 years and has now been diagnosed with an untreatable brain tumour. And promptly sent home from hospital.

We are patiently waiting for a care package but at the moment, are cobbling 24/7 care between me and her siblings. I’m an only child and she desperately doesn’t want to go into a home,

I hate myself for thinking that it would be merciful for her to have a heart attack in her sleep but don’t know how long we can handle being carers as well as working full time with my own young family.

Gosh, that sounds terrible @Guineapiggiesmalls and yoiu’re definitely in the right place.

Given the seriousness of your Mum’s condition I think you need to be impatiently waiting. We’re here to provide a shoulder and a safe space to let off steam x

@Guineapiggiesmalls I'm so sorry about your mum, and furious on your behalf that she's been sent home like this.

On Monday, ring the GP and ask for an urgent referral to the district nurses. Also ask the GP for end of life medications to be prescribed, so you've got them there when they're needed.

It's shocking that this has happened.

Thank you.

The district nurse dropped off the emergency bag of drugs earlier, which is reassuring but makes me wonder if they think death is closer than we realise. Mum seems to have rallied today, but is struggling to walk and is very forgetful.

I truly don’t know how people manage years of this. The anticipatory grief and the pressure of caring is exhausting.

I truly don’t know how people manage years of this. The anticipatory grief and the pressure of caring is exhausting

Yes @Guineapiggiesmalls it is very, very draining.

Can you get help from the home hospice team?

@Guineapiggiesmalls I hope between you you've got some time off work. Unbelievably hard time for you.

You go on because you don't have a choice and because you don't know at the time just how much longer it will go on for.
if someone had told me in 2020 that mum would still be here seeing in 2025 I think I would have had a meltdown.

I’m sorry if me saying that came across as insensitive, it definitely wasn’t intended that way. I can’t imagine how rough it must be living this for nearly five years. I feel like I’ve been on edge constantly for the last two months and even that has been overwhelming.

Although I’ve lost a lot of family, it’s always been in hospital so the idea of being at home and it being long and drawn-out is alien to me.

Not insensitive at all. This is what this thread is for.

I was out at a drinks party last night and was chatting with a guy (school dad) who I’ve known for 10 years but haven’t seen for a while. He was tipsy and slightly agitated and his first words were basically forgive me but my mother has just died after 7 years of dementia. We talked about the emotional toll on the family and the difficulties of looking after aging parents coupled with kids still at school. So even though he was relieved, he was clearly in distress. We’re all heading for the same rollercoaster of emotions, but we’re in different theme parks IYSWIM.

I’m sorry if me saying that came across as insensitive, it definitely wasn’t intended that way. I can’t imagine how rough it must be living this for nearly five years.

@Guineapiggiesmalls I'm pretty sure that @StiffyByngsDogBartholomew didn't think you were being insensitive. She was just remarking that we literally don't have a choice, and that not having a choice makes our lives very difficult.

This thread is for venting those feelings and supporting each other through it. You're in the right place, and we understand what you're going through with your mum. How is she today?

Definitely not insensitive. I’m exhausted with it all particularly as my step dad now seems incapable of sorting anything out and it’s all down to me. I’m absolutely dreading Christmas as I’ve no alternative other than to spend the holiday period with him because he’d be on his own otherwise. I’ve even had to use precious annual leave from work to do this. He goes on about money all the time yet he’s saving £££ every month.

@Guineapiggiesmalls deffo didn't think you were being insensitive x

Hello, joining in this thread, thank you @TheShellBeach for signposting it to me. I've read some posts, but not the whole thread, so apologies if I get things wrong. 2024 has been a spectacularly crap year, as I have lost my husband in complicated circumstanes and now I am dealing with losing my father.
My 93 year old father has Parkinson's and has been in hospital for the last 4 weeks, to be honest for not much of a reason, but once he was there it has proved a challenge to get him out. However I hope he on his way to a care home in the next few days. I realise I have spend such a long time on tenterhooks with every call from my parents, and now I really have the feeling that I have lost who he was. He still has capacity, and both my mother and I believe he is shutting down mentally. He told me that when he ended up having to put his father in a home almost 40 years ago (he had some form of dementia) his father never spoke to him again, and I fear this will happen to me, so on one side I almost hope the call will come announcing that he is dead, but on the other, that somehow I will get a bit of him back again when he gets out of the hospital environment. So much of life feels on hold at the moment.

Checking in. More than 2.5 years since DF went into the nursing home, he's still hanging on in there...

I need to go and see him before Christmas and am not looking forward to it much. If I'm lucky he sleeps and if not he seems to be distressed.

We had the hospice ladies out to visit today, so no avoiding the ‘journey’ we’re on now… I wasn’t there, but my aunt seems to think they’ll make thing a lot easier on us which is a relief.

Definitely understand the struggle of trying to keep things happy at this time of year when you’ve little kids, we put our tree up last night (despite me absolutely not wanting to). But it on the other hand it feels like we’ve got the distraction of Christmas, and come new year things might look a lot more bleak.

We had a call.today DF found on the floor of his room at the home, no injuries but they said he can walk a few steps with assistance, he was walking ok last time I saw him all be it slowly and with his walker. I am taking a turn to visit Christmas Day I don't know if he will be with us next Christmas but if I'm honest I didn't expect he would this year

Good morning, sadly I'm joining you. My DF was admitted to hospital with pneumonia and heart failure in the middle of November, today he is being sent to a nursing home for end of life care, all treatment was stopped yesterday.

All the stress is falling on my sister who is the only one of my siblings in the UK, my brother and myself are overseas. Dad did want to go home to die and my poor sister was trying her best to sort this but it would have been a massive impact on her life and mum is no use and in fact seems to be trying to manipulate my sister into running around after her, so he's off to a very nice nursing home today.

His heart is failing, he lost the ability to swallow but refused a feeding tube, so his lungs are now filling up with everything he eats. Now that he's not on a liquid diet he's scoffing cakes and has asked my sister to bring in beer for his Sunday dinner. My brother and I FaceTimed yesterday and he just kept saying how marvellous it was that he had all three of us together, he was really delighted.

Durham and Darlington Health Trust have been very good and he was in rehabilitation in Sedgefield for a week and the staff have been truly amazing, they had already arranged funding for him before they told us that he was being moved out to a home, it's removed so much stress from the family.

As a family this is the worse time for us but we have all laughed so much together, I was fortunate enough to get home for a week last week and spent a lot of time in the hospital with dad, these will be the memories I have when he leaves us, we all had such a good time together - my sister and I seemed to revert to being naughty teenagers😀

Thank you all for reading, I'm alone here so it's nice to have somewhere to talk.

Your dad sounds like a right trooper @brittanyfairies and I'm glad he is receiving good care where he is. Hope he enjoys his beer.

@Guineapiggiesmalls I never post, usually just lurk but my heart goes out to you. My mum has a terminal primary brain tumour and its utterly soul destroying a times.

If you are under hospice and have been given just in case medicine, I am assuming your mum has been given a short prognosis. Have you explored applying for fast track CHC funding? It means NHS will fund care for your mother and she will get longer carer visits (about 2.5 hours in total day) than if carers are provided through your local authority. Your hospice should be able to apply for you and its usually approved within 48 hours.

Sorry if I've got it wrong. Just no one told me about NHS funded care when we were told my mum's brain tumour was terminal and it has made a huge difference.

Thank you. The hospice were out this week, I need to chase this up. Having to do all the care between me and my aunts is soul destroying. Mum is less mobile than she was two weeks ago, but when I try and mention hospice she just says ‘whatever you want’ and clearly doesn’t want to discuss it. Our prognosis is 2.5 months median but it’s complicated because they couldn’t do a biopsy (because of other health conditions) and so it’s all speculative. I’m scared this could go on for months on end, and not sure how we’d all cope.

DH in a foul mood. I'm not being supportive enough of him in his all consuming caring. I have no more to give. I think he resents the position he's found himself in but can never admit he doesn't want to be spending this time with his mother, even to himself. So much easier just to start stupid arguments with me.
He's decided that his mother must not be alone for more than 15 minutes during waking hours as longer than that may mean she has to use the commode. She is unable to get herself to the toilet but can still stand and transfer. Anyway, that's his life now. Personally I think using a commode occasionally is not the end of the world, but, no, we must keep her dignity. While everyone else exists in stress and misery. She's significantly better these last weeks. This may go on for many months. Total madness.

My FIL has finally been told by a consultant this week that his lungs are shot from this chronic infection and COPD. And while there are treatments to relieve his breathlessness he’s not going to get better. We all knew this but it seems he has somehow been thinking that there was a cure out there. He’s going to have oxygen at home now and small morphine doses for the shortness of breath. The gold standard framework has been mentioned but I don’t know what that means in practical terms or how long he’s got left. MIL knows this will be his last Christmas, although in September she didn’t think he’d make it to this Christmas so who knows. Does anyone have experience with the gold standard framework? MIL doesn’t have a lot of confidence in their GP surgery but the hospital consultants and community respiratory nurses are very good.