DF in nursing home and messaging me about being in pain..

[Totallybannanas]

I've not heard from him all day. He has stage 4 oesophagus cancer, and has recently been admitted to the home. He wasn't coping at home psychologically, always ringing the district nurse over pain and nausea and sometimes I'm not sure how genuine it was if I'm being honest. Only because he wanted them to take him into he hospice. He would tell me he couldn't breathe and yet was absolutely fine. He would say he had nausea, but then stuck his fingers down his throat. He was very anxious being on his own especially at night. I feel he is now anxious in the care home. He's just not settling there, although staff seem lovely. He doesn't like having to wait when he rings the bell, he moans about the food etc and them not making his bed. He says he wants to go home, but I know he wants me to care for him and I can't be there 24/7. He is very anxious and demanding.

The last few days he's been complaining of constipation, they have gave him medication for it yesterday and he went once. He just text me 30 minuted ago to say he is now constipated again, in pain, bloated and feels like he is burning up. I've tried ringing the home but now answer, due to doing the drug round, I've text dad to ask when the nurse comes around with the drugs to ask them and let me know. I just feel guilty and torn as to what to do. Do I go out at this time of night or do I try and ring again? I don't have the direct number for the nursing unit.

I would do my best to ignore his messages.
You're not going to satisfy him and he's got you into a very anxious state.
When you next go to see him, ask the nurses if he can have something for anxiety.

It's really hard, he could genuinely be in pain but based on previous experience it didn't always feel like it. Alot was anxiety, but if he is in pain and burning up then I feel awful if his needs aren't being met.

Has he always been like this?
Have you got any siblings or is it just you who is trying to cope with this?

And if the nurses are doing the drug round, he can tell them himself how he's feeling. I don't really understand why you would need to call them if they're about to see him anyway.

I'm so sorry if I sound harsh but it sounds like your dad is very good at making you feel guilty.

js it spreading in his brain? That can make behaviour very odd

I’ve had several relatives die from oesophageal cancer. It’s the worst thing I’ve ever seen anyone go through mainly because the pain gets to a point that nothing is working and when it gets into your brain and spreads everywhere else everything is past a level of agony they can cope with. Also it messes with your brain and the way you’re coping and he’s also having to live with the fact he’s dying. That doesn’t mean I think you should be looking after your dad yourself if you don’t want to but I think you should address with the doctors whether your dad needs not just a different type of pain meds but also something to relax him like cannabis because this is another part of it and also the side effects of morphine are horrible too.

It sounds like he is in a better position to ask for help with his situation than you are. He’s on the premises, and has a phone and a call button. You are off the premises and have a phone. He’s got 2 extra options over and above what you’ve got.

Sounds like a GP appointment to review medication, particularly around pain management, side effects and anxiety might be in order. If you want to be proactive you could suggest that and say you’ll arrange it if he wishes.

I think you have to trust the staff in this situation. My dad is in a nursing home, he's not able to communicate at all now so we have to trust them. We certainly wouldn't be able to meet his needs at home, so have to let go of any feelings of guilt (my sister has found this particularly hard)
I don't think you can assess whether his needs are being met from messages from him. It sounds like you are very anxious too, though understandable. By responding to his anxieties with more anxiety you're not going to help him to settle. I mean this kindly, but take a deep breath, phone in the morning and discuss his care plan etc properly so that you dont have to feel reactive all the time. Care staff have a lot to do at night, they will check on him and seek to review medical matters as soon as they can. It sounds like his pain relief will need adjusting as well if necessary.

I agree re a GP review. The thing is that if he is suffering ‘total pain’ then anxiety is a recognised component of that, and it is potentially treatable, perhaps with midazolam alongside pain relief drugs. But I’m not a doctor, so I’ve no idea what he needs, and tbh neither do you, so make sure you share the pain by leaving messages at the home. At my mums home it does take a while to get through the answerphone message but eventually in theory you do get put through to the nurses’ office. I’d leave as many messages as you need to telling them that your dad is in pain. It’s their call what’s causing it and how to treat it.

I really wouldn’t think that he would be any better off in your home even if that were feasible. He went to the hospice because his symptoms couldn’t be managed any other way. He was discharged to a nursing home because he needed 25 hour care in some form. One person with other responsibilities cannot possibly provide that alongside all his medical needs. Please don’t worry,

A side effect of some pain medication is constipation. I was on codine after surgery and the constipation was awful.

They could try to get on top of that, I used Laxido, he’d need several sachets a day, two wouldn’t be enough initially.

I was calling to make them aware he's texting me that he is in pain and discomfort, and I wasn't aware they were doing a drug round until I called and couldn't get through as a care assistant answered. Its just me really, other sibling not actively involved. I don't know if he had always been like this, he was a weekend dad so I never really lived with him, I've learnt a lot in the last few months! He must be in some pain or discomfort, but like I said it's so hard to tell just because of his anxiety and emotional state. He said he the nurse is getting pain relief but it but maybe an hour. There are a few things with the home that aren't perfect, but he has only been there for a week. He is meant to be on a soft diet and they haven't been giving him that, but he can ask for it and is capable of doing so. But all of a sudden he has become emotionally dependent on me and incapable of speaking for himself.

He has just come from the hospice so has medication for anxiety, pain and nausea. He doesn't have the 'Just in case meds' though. But I will check with them tomorrow. Because he is under discharge team.for 4 weeks, he doesn't have a registered doctor at the home yet so apparently this delays things. I don't really understand the whole process to be honest, everything seems disjointed. His nurse didn't seem aware that his cancer is at the stomach junction until I explained, as I said it could be constipation or maybe the cancer. He thought it was higher up which is worrying.

Really feel for you. When my Nana was in a home she was absolutely unable to ask the staff for anything at all. Not sure if she had lost her confidence, or if she was just unused to asking for anything but it was really such a shame. Sending you a big hug.

Thank you, I'm just tired of this guilt. And it has become a burden on me. I feel like he wants me to say come on let's go home and I will look after you. I can't do that anymore. It's too much for one person.

You're absolutely right. It's far too much for one person.
You must try very hard not to feel guilty. This isn't your fault, and you've been doing your absolute best to help your father, for ages. You're exhausted and worn out by all this and I don't think he realises the effect this is having on you.

Women who are middle-aged and older are more shouldering the burden of caring for elderly parents while still working themselves. It's now known to cause a breakdown in the women's mental and physical health and to actually shorten their lives.

@Totallybannanas there's a long running series of threads on this very issue, where you'd get support and advice. Do come and join us. I'm on them under a different user name.
Link

Thank you!

Ha! I see you're already on the thread.
I do think it's the most helpful thread on here for women who are trying to juggle a million things, with a demanding and dying elderly parent.