So bloody exhausted waiting for someone to die 4

Hi @kippersmum, df has been restless, keeps trying to get out of bed and has been hullcinating, seems to be stuck between memories, dreams and reality. I stayed all night to keep him calm but I'm exhausted. They started the syringe driver last night. How are you doing?

@Totallybannanas just checking in really. How are you doing? It's been another shite day here and I expect it's the same for you. Lots of morphine syrup, you will understand how swallowing anything is nearly impossible. However Michael Portillo saved the day with a programme about the history of railways! Just thought I'd mention it in case your dad is in to the same thing. On iPlayer xx

My mum has really stopped eating since a bad fall a year ago accelerated her decline @AgitatedGoose but her care home are determined to make her live on shakes. Every time I go in, she's got one in front of her. The body is giving a pretty unmistakable message here, but they will keep trying to force nutrition in. She weighs 33 kilos.

@SinisterBumFacedCat Sadly I don’t think the Assisted Dying Bill will be passed in the UK for a long time. I wish it was legal here as I dread the thought of ending up in a care home dependent on others. I have money set aside to go to Switzerland but if I can’t do that I hope I’ll have enough insight to stop eating and drinking.

It’s a start in the right direction. So many of us have witnessed the worst of it in our parents I hope that one day we will be able to do advance directives requesting assisted dying if you are diagnosed with dementia and crucially at what point you would like to go. My DM had a few good years, I was basically at her beck and call running around organising everything, but she was still enjoying shopping trips and days out and dancing watching Top of the Pops. The last few years have been hell, shouting and attacking her carers, crying, screaming, hallucinating and terrified. No real let up beyond the occasional tranquilliser. Just left to exist like this for probably another decade. No one would choose this. I will do everything in my power to ensure it doesn’t happen. I have my escape plan.
Unfortunately it will probably come to the point where generation rent start getting dementia and there’s no handy house to sell off and fund their care indefinitely. It’ll be a financial necessity, it should be a compassionate one.

@Totallybannanas reading your journey so far has helped me more than you will ever know. I'm not on my own but complicated family dynamics certainly makes me feel like I am. I feel sorry for not posting sooner but I just couldn't. Sending you so much love from someone who absolutely gets where you are. Thank you

@kippersmum thank you sending love and strength to you too.

Hello please can I join this unfortunate club. My dad has a weird type of mds leukemia after having shedloads of special chemo radiotherapy at Clatterbridge for tonsillar cancer. He got kicked out of hospice for not dying quick enough and is now in a local nursing home

Please can I mention @Totallybannanas here. I've read your journey of caring for your father and I haven't added anything useful. I'm so sorry. You have had a very similar journey to me . Just thinking of you xx

I have no idea why people keep on talking as though the assisted dying bill will help in cases of people with dementia. It won't.

Thank-you, nothing really prepares you for the reality of watching someone die, even if you know it's coming. I haven't really spoken to anyone in "real life" about it not even my DH. I kept having flashbacks to his last moments and tbh my DM behaviour in those moments did not help. I took myself off immediately to sit quietly on my own but was followed, I understand she was upset too as was DB but I was the one talking to staff, making decisions and sitting with him late into the night making sure he was settled. Then when DF passed (despite him being a terrible father) I was exhausted and broken by the whole experience of his dementia and watching him pass, I was leant on again by DM and DB as if somehow because I'd held it together the last 3 years now I could support them instead.

If he's asking for food and water and is able to swallow, the staff have to give it. Sorry about the typo in my previous post. I meant to say decline.

Sounds like they are still offering food and drink if he wants it. His mouth seems so dry and he keeps asking for sips of water.

@Totallybannanas I’m really sorry to hear about your Dad’s decide. If food and fluids are withdrawn your Dad probably has not much more than a week left. I was lucky that I was given time off work to be with my Dad and although I still feel traumatised by the whole experience I’m glad I was able to be there.

I'm so sorry Totallybananas, very difficult indeed. You can only do so much especially if you have other responsibilities. But I imagine they are flexible in the care home in these situations, if you are able to spend more time with your dad. Big hug to you

Hi, haven't posted for a while. Things have declined and dad is being heavily medicated and lost all mobility and power to his legs now. They have mentioned he hasn't eaten for 2 days, barely drunk. He is struggling to keep anything down, and is mainly asleep. They are talking about withdrawing food and fluids, and have started mouth care. He did gesture for a drink so I sat him up and I gave him a few sips. I noticed his eyes look sunken, and it's hard to focus. He is losing his voice and difficult to understand. I know medication has been upped, so it's hard to know. How long should I be staying with him, and when will we know he is close? He is in a home and they are checking hourly, but I do worry especially at night when they are less staff.

@Tara336 I'd had an episode three and a bit years before my Dad actually died where I had to hang about the hospital and it was awful. Counselling might help, I also did a lot of running and some crafting to try and order my thoughts.

I remember being really horrified when he pulled through knowing I was going to have to go through it all again.

Hugs, it is a profound and often deeply painful experience. In my case my mother had been in decline for almost ten years and her physical suffering was acute. It was an incredible relief when they switched to palliative care and the focus moved from prolonging her life to easing her transition. Thinking of you - these are hard days xxx It will ease and the grief will make space for some of the good memories to come back, little by little....be patient and kind to yourself. Lots of love from this internet stranger/

@Tara336 I can empathise here as I found being with my Dad when he was dying really traumatic. Have you thought of having any counselling?

Hello @Tara336. I’m very sorry and a bit frightened to hear it was so hard. I hope the trauma fades over time.

How are you as well @Totallybannanas?

Just checking in, I have been on this thread from the start, but just stepped back a bit. My dad passed away in June. It was very sudden (I'm my eyes) I sat with him for his last days and hours and it is possibly one if the most traumatic things I have ever been through. I was having flashbacks for weeks. End of life care needs to be better and kinder, the staff were wonderful and did the best they could for my DF and us but it was still awful. I'm glad he is at peace and away from the bloody cruel disease

Thank you, it's been bloody hard. Harder then I thought as he isn't the man I thought he was.

I think walking away is the best option, to be honest. I don't think I've responded to you before, but I have been reading your posts. You have given all that you have, and more to your father, and it's not enough for him. It will never be enough for him and you are going to end up broken.

Step right back - stay away - look after yourself and your family.

My suggestion is that you take at least one week, ideally longer, with no contact at all. Then set a limit - maybe a 15 minute visit twice a week, and if he's unpleasant to you, get up and leave. Don't do his washing, don't take in any food. He is in a care home - he is being looked after.

Pay attention to what your DM said to you.

Take good care of yourself. Walk away.

Hi guys, had another bad day today. Df picking fault with his nursing home and saying anything to make me feel guilty. Telling me he is in pain and the home aren't given him his pain relief. When I spoke to the nurse they had gave him everything and could give more. He then told me he was abandoned and asking to go home. I made the point that he could go home but no one could be with him 24/7, I have a job and a family. I wasn't losing my cool. He then told me how he looked after his mother, and that I had a choice. He then said fine he would go home and slit his throat. Absolutely, horrible. I told him I wouldn't be manipulated. He then denied it and said he was desperate. He has asked me to go out again today. I just feel like walking away.

So sorry @Radionowhere 💐

So sorry you are going through this @Radionowhere - and for your DH. Sending strength for the days ahead. A peaceful passing at home is about as much as we could all hope for. I’ve been comforted that my dad got that too.