I've totally had enough of caring for dad!

[Totallybannanas]

I've posted a lot on here. He is 80 and has stage 4 oesophagus cancer, we don't have a prognosis and he is still eating and drinking. He is still mobile but very slow and shaky. I have put my whole life and job on hold to care for him following diagnosis and hospital stay, weight loss. I have co ordinated care with local authority, pushed for a care package. We have one carer a day, who does very little because dad doesn't use her. I visit daily to cook for him and ensure he's taking medication. Take him out and general company and to keep him going else he would just sit and decline, doing nothing. We have had mood swings up and down, and emotional times. It's been a rollercoaster. Long story short, I have gone back to work (much to his dislike) on a phased return and still popping in daily. We had a few good days after he was on steroids and work gave me normality. Anyway in the last few days he has had nausea and has become doubly incontinent. He has also lost more weight. His mood has changed and he seems confused and angry and he just isn't the same person anymore. I spoke to a catering for carers charity and they emailed the local hospice who have taken him in for respite. He has said he wanted to go to a hospice, but even that he moaning about because he can't get a decent cup of tea or he has to share room. He's been texting long lists of stuff to get him (hospice is 30 mins away) so I don't really want to be going back and forth. I just feel mentally and emotionally done and ready to let him to go. I feel stuck and in limbo and now I am resentful. He wants to go into a home, but I know he won't be happy there and will moan about that too. It's like his world had stopped and so should everyone else. He seems to think he is the only one who is dying and has this disease 😔

Sorry to hear you’re struggling I know how it feels having had similar with my mum and now my dad with dementia. I would definitely support him going into a home as this would take a lot of pressure off of you. And then restrict how often you answer phone calls or texts - maybe block him for certain parts of the day. At least if he’s in a home you know they will call you in an emergency.

Thank you for the reply, I know I need to set boundaries but I just feel so guilty especially as he is dying. To be honest,. I didn't expect him a. To change personality and b. last this long.

@kgal has given very good advice. A home provides 24 hour care and support which you cannot give even if you wanted to.
His going into a home will afford you some time without constant thought, organising and visiting but you won’t have just left him to it.
Be proud of what you have done and accept that now is the time to share the burden.

He would be definitely better in a home with 24 hr care. Doing it yourself will exhaust you. If he he is in a home then you become his daughter again and not a carer. Time to spend with with properly as a daughter.

You have carers fatigue and have done an amazing job so far, but regarding the seeming "selfishness" element, everyone I've known in hospice/end of life/cancer treatment and care have been similar, as they know logically others go through it but they're the only ones going through their pain, their prognosis and facing their own demise.

It sounds like a home would be best for him and you, and you can take a step back on the caring side and just go back to being his daughter again, and yes he'll moan but it sounds like he will anyway, it's such alot for everyone when a parent reaches the end of their life, especially with an illness like cancer.

The sudden change in mood and cognition, nausea and incontinence points to a medical issue, likely unrelated to the cancer. He needs to be seen by his GP urgently, as he may be dehydrated in the recent heat, have an infection or have something else going on medically that needs investigation.

If he's new to the hospice, staff won't necessarily know his baseline and that a recent, sudden and significant change has happened. You need to tell them so they can arrange medical input.

Once this has been investigated, you can discuss what you want to do next, but I would be cautious of making any sudden decisions on your part in the midst of what might be a resolveable medical issue.

Have the hospice tested for a UTI? That can cause quite sudden changes in older people. It is the best place for him. How long will they keep him? You can't just give up work indefinitely. It's very common in these scenarios for parents to want their children to do everything, certainly more than they can handle alongside their own lives.

I agree with @roundaboutthehillsareshining that the sudden personality change is nearly always a sign of an infection. Could be chest, water etc but I would get him seen.

What you are going through is extremely difficult and it sounds as though you're alone in providing this level of care? I think the best option for both of you would be for him to move to a home where you can be comfortable knowing he is having his needs met. This will mean that you can change to seeing him because you want to and not because you need to, which will be so helpful to you mentally.

I'm so sorry, I'm going through similar with my mum, it is exhausting , not only the physical side but all the admin that goes with it, There's not a day goes by without me having to phone the district nurse, gp or carers (who also do very little).
Its such a difficult situation but a care home sounds like the best option, you can then go back to being his daughter rather than his carer.

Monday, although I'm hoping they wont sent him home and maybe they can find a home or respite until a suitable place. I just wish I knew how long he had. I've taken today off as I was so ground down yesterday and today. When I looked at nursing homes before he became poorly he told them by daughter can do some of my meals and my laundry! I feel like I have made a rod for my own back! I just want to go back to my life.

Do you know what I'm not sure. I did think this when I finally came home last night and had a chance to think. I will.ask. He does have kidney disease too so wondering if toxins are building up from his medication as he is on steroids and lorazipam.

This is so so familiar and without the boundaries it gets worse and worse as health declines. I found after a paramedic gave me a talking to that Mum was using learned behaviour to manage what I did for her (which was everything!).

Dont listen to the moaning. You really dont have to so if that means only going once a wek as opposed to 3-4 then so be it. I know its harsh but this could go on for months and months. Also what are you going to do with his current home?

Does he own his own home? Can he afford a care home?

Agree with MichaelandKirk. My mum was adamant that she wouldn't go into a home despite vascular dementia and increasing frailty. Initially she tried to make out nothing was wrong but I gradually had to take over everything. I fell into the trap of allowing her too much of a say on how care would be done until I was cooking all her meals from scratch because she refused to have any ready meals. I was doing all her cleaning because she wouldn't have anyone else on the house. Nobody else washed or ironed her clothes well enough and I was having to sort out all her finances which were complex and disorganised and" She didn't want anyone else knowing her business"
All this whilst working full time with 2 teenage children. I was also the main wage earner so going as carer full time was not really an option.
I get how scary it must have been. Each little loss of independence must be frightening for your parent and I think that is probably part of the issues for OP.
The crunch came when mum had a stroke and lost most of her sight. She was adamant she could still live at home. In the end I became so ill with trying to juggle everything that I had to go to the doctor. He was superb. He said that what I was doing was not sustainable and despite my efforts it was time to let the professionals take over.
I think that you, OP, are reaching that point.
The doctor and a colleague visited my mum and asked her to do some simple tasks like make a cup of tea which of course she could not do. He managed to convince her that she was not safe to be on her own and that I couldn't cope with the extra load either and she agreed to go into a care home.
The relief to me was immense.
I chose a care home that was very like the style of building she used to favour for holiday hotels. Nothing clinical with a big lounge area and separate dining room set with tablecloths like a restaurant. I was lucky. Her finances could support this.
Mum stayed there for 5 years until she passed away and was looked after to a high standard all the time. She admitted she felt safer because she wasn't on her own but liked the fact that she could retire to her comfortable en suite room if she wanted to. She started to call it "home" in conversations
The carers did a better job of monitoring her general health than I could ever do. They were really on the ball with her medication and a local doctor visited on a regular basis.
Visiting became more pleasurable for all concerned with no stress. We made some good memories in those last 5 years.
In her last days she knew she was dying and one of the things that gave her most peace was that the home had agreed she would not go to hospital because she had said that would be her worst fear
She was looked after by myself and her two favourite carers.
Her last word to the three of us was " thank -you," and she just curled up and went to sleep.
I know the care home was definitely the best decision.

Thank you for sharing your mum’s story @CurlyKoalie. I’m sorry for your loss but glad she settled and you were able to be a daughter again.