Hello, first post!

New to Carers Connect
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Hi,
I’ve been having a read of the posts and feel so much better and less alone already!

I’ve been caring for my dad for a few years now…he is 78 and has COPD and end stage pancreatitis. I am 44 and have three teenage boys, three dogs and a husband and we run our own business.

He’s always been very independent and although frail and not great health wise he was driving up until March of this year. But night times he would call me, maybe 11pm if he was stuck on the toilet, 4am if he was scared about his breathing this was maybe every other night and I’d have to go up to check on him, I did his washing, cooking and shopping.

In late March he got a pretty bad chest infection and ended up in hospital…the short story is he ended up with sepsis, nearly died twice, was dicharged twice with re admittance within days. The consultant advised end of life care for COPD and pancreatitis and dad and I decided that a nursing home was the best option as we had already tried carers at home.

So, 5 weeks ago dad was discharged to a local nursing home which is really lovely, the staff are great and the care is very good.
But dad hates it, he moans about everything, he is obsessed with writing notes about what time the food comes, when his meds are due etc. And all he does is stay in his PJs all day, smoke and wait for meds. He hasn’t had a wash/bath or shower since being there, it’s a nightmare to get him to change into clean pjs or change his bedding.

When he was at home he was taking far too much medication (think 10 30/500 codeine tablets in a 3 hour time frame) and the Dr changed him to patches, the patches have been upped and he demands Ora morph on the dot every six hours…he wants to go home as he says they are not giving him enough medications. He is grumpy and rude to me every day, my children don’t want to come to see him as I get upset.

So now I don’t know what is going to happen, he still has his flat and the home is being funded as end of life through continuing Healthcare but he is calling the housing manager tomorrow to see if he can move back…of course the flat is still his and he could move back…but he is 5stone, reliant on strong medications and he will be alone all night again…I’m worried that will will be back at square one again in terms of declining health, nighttime calls etc etc.

He won’t listen to me…he is so stubborn…I know he is frustrated and his whole life has been turned upside down but I don’t know what to suggest as he is poorly.

Thanks for reading this novel! Feels good just getting it down in writing.

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Hi Tamzin
Many of us know the problems of the stubborn moany elderly, it is very common indeed.
Sadly it is Dad’s illnesses that means he needs residential care. As you say you have tried care at home and that isnt enough and isn’t sustainable.
He’s constants calling and monitoring of meds does sound like he has developed a bit of addiction to them and is grumpy because the Home keep charge of them and aren’t letting him over medicate. He’s probably going thorugh some withdrawal

I’d call the housing manager and pre-warn her of the potential problem. She probably won’t want someone who needs full care.
However if ‘officials’ become involved they may well deem that he has mental capacity and can make his own decisions, irrespective of how unwise those decisions may be.

All you can do is say you cannot help at all if he goes home, and that strangers (paid carers) would have to do everything. No one really likes being in Residential care, it is something to be put up with. My 96 year old mum takes the attitude "I survived boarding School and the war, I can survive this)
All of them moan and groan and grump.
Rather than arguing try changing the subject. Keep visits very short and don’t go in every day. Let the Home do most of the work and don’t expect him tonhappily settle. It will be a win just to keep him there.

Oh, and if he’s end stage, try contacting local hospice who may have all sorts of ideas and support

I think you have to be be very firm, you are now the parent and he is the awkward child. It’s difficult to change attitudes of a lifetime, but you have to say “No” to him

Sorry if this a bit muddled, it’s not an easy situation

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Thanks so much for your reply MrsAverage, everything you say makes total sense.

I agree with the role swap of parent to child…it’s so depressing too!

I’m going to pop in and see the manager…she is great and really approachable too and I know she will understand as she has seen dad at his moaniest!

Like you say care at home hasn’t worked and it is nursing care he needs due to it being end of life care, although Dad says he isn’t going to die anytime soon and he is probably right. He will be stubborn to the end!

It’s such a stressful situation for all involved…and yes you are right about the medication addiction. It’s been a recurring issue!

Thank you for the tips about visiting, I feel so guilty as there isn’t any other family, dad is an orphan and there is only me to go and see him. I need to realise there isn’t anything more I can do.

Once again…thank you and I like your mums attitude.

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Hi Tamzin,

My mum ended up being so frail that a nursing home was the only option left. She lost the ability to walk after sepsis, I was told that even a live in carer at home wouldn’t be safe, as mum had to be hoisted. It wasn’t what mum or I wanted, but it was what she NEEDED.

Dad cannot take up all your life, however much he probably thinks you are his “little girl” who should help. You are also a mother with children to look after, and they have to take priority of what dad wants. If dad went home, he would be back in hospital again, because he is nearing the end of his natural life.

I would suggest that you googled “Signs of Dying” at this point, and read the articles written by people who have worked in the hospice movement. You might find it helpful to read in advance. Dad might deteriorate very quickly, or have several years left. Has anyone been open and honest with you about how much longer he is likely to have left?
Think also about funeral arrangements. The more you do now, the less traumatic it’s going to be.

Maybe say things to dad like “the doctor/Matron says you need to get a bit better before you can go home…” If he starts being rude or shouting, put your coat on and GO, immediately. You do not deserve to be abused, you are doing your very best.

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Thank you so much for taking the time to reply.

Honey Badger ~ Yes you are so right. He is physically addicted and doesn’t feel he is getting enough medication at the home, this is because he is used to managing his own meds…and not well either. The Dr had moved him from oral opiates to patches due to the fact he was over medicating and also buying OTC codeine as a top up. I’ve explained to him that he won’t be able to take the Ora morph home unsupervised.

As for the time left, we were told 8-12 weeks at the hospital and he was sent home (to the home) with continued heath care for end of life care.

I haven’t been to see him for two days now…I told him I needed a break. I’m dreading going there as I don’t know what to expect in terms of him wanting to go home…but I’ll just have to deal with it as it comes.

Thank you so so much for the advice. I think the next step may be to make a GP appt and also a COPD nurse appt so we can discuss the reality of what he wants to do.