getting help with care

[Ladypinkdoor]

I posted before about hoping to take my partner on holiday - which is looking unlikely and also irresponsible. He has cirrhosis which is fairly stable, having paracentesis again soon - but he’s tried and weak and pretty much not able to do much.

The trouble is that he insists he is fine, can look after himself etc. In short, he’s in denial - so it’simpossible to discuss with him the possibility of getting care. I need a holiday but don’t want to go away without some care in place, but he won’t hear of it. I end up being brutally honest about his condition (ie that he will die from it) but that makes him even more stubborn. He refuses to engage with or understand his condition.

I can’t think how to convince him that both he and I really need help.

Has anyone else come across this and what have they done about it ?

Any help gratefully received.

[Aotea2012]

It’s a difficult situation. Denial is a psychological response/protection. It is probably his way of coping. All the evidence is that he will need carer support if you are away but the last thing he will want to do is admit that as it means he will have to face up to his situation, which is probably too traumatic for him at the moment to handle. I can see you had some really helpful comments to your holiday question. I’m not sure I’d discount getting away completely. If you got a holiday cottage not too far from your home/hospital it would still be away. They are normally in lovely locations and he’d be able to rest. Take all his drugs et al with you and set it up as if he was at home. You can get a bit of a change of scenery and nip out to explore if you want to get some respite and who knows the change of environment may give him extra energy and he can join you on an excursion. It’s really hard…I do hope you’re ok.

[Ladypinkdoor in reply to Aotea2012]

Thankyou for your reply. The problem is we have a house in Greece and his heart is set on going there. He says if things go wrong (nobody will insure him) I shouldn’t worry but just leave him.

Bonkers. So hard to deal with…….

[Roy1955 in reply to Ladypinkdoor]

It's the £100,000+ bill for diverting the airplane if there's a medical emergancy in flight and the medical repatriation can be another £50,000.

[Glorydays2 in reply to Ladypinkdoor]

I am in a very similar situation. My husband was diagnosed with decompensated liver in March. We had a 3 week holiday booked which the Advanced care nurse advised we should cancel as his body would not cope with the flight. One very unhappy husband who insisted he was going regardless. I told him he would be going on his own as I could not imagine anything worse than spending time in a foreign country with him in hospital and not being able to understand them and vice versa (also the expense if he should be in hospital). Also just cancelled another 2 week holiday for his 70th birthday, he has now accepted that he wont be going anywhere abroad.

Sadly trying to convince him to go anywhere here in the uk seems to be a no no as well. We did have one night away in a hotel to celebrate a 60th Wedding Anniversary of my Uncle & Auntie, however he has mild hepatic encephalopathy and the different surroundings added to the confusion which was very difficult to cope with for me.

Good luck with your husband and hope you manage to get a holiday closer to home. Im still working on my hubby. fingers crossed for some warmer uk weather.

[Yorkybar]

my vote would be a hotel with support/ assistance in place. I went to a hired cottage as the fit carer and was exhausted. At home I had what I needed in place and reachable. Away in the hired cottage I was up and down like a yo yo. From my perspective it wasn’t worth it and set my own health back.

[Buddythezhu]

I’m on this site because I have AIH but just wanted to share my experience of being next of kin of my extremely stubborn dad who lived with cancer for 20 years. He never told anyone anything, he was extremely unwell but always carried on until the cancer spread to his eye and he went blind and I managed to convince him to use Uber, he lived alone. Because of his GP I had a visit with the palliative care team, he agreed with everything then once they left, told me not to nag him. Refused to drink ensure for weeks, wouldn’t let me pick it up. He flew to Los Angeles alone 3 months before me passed away. It’s an extremely difficult situation. My dad never accepted any help until 10 days before he passed his oncologist admitted him to hospital and he passed away 10 days later in hospital. He never wanted a carer, refused to go to a care home, didn’t want palliative care. It’s very very difficult. If it was me I would not leave him, how would you feel if something happened and you weren’t there? I went through all this with my dad while I had to have bowel cancer surgery and I live alone. For me, I put him 1st.

[Ladypinkdoor in reply to Buddythezhu]

Sounds familiar. What an awful situation. But maybe he just decided life is for living, not for being medicated.

I have been reading 33 Meditations on Death in which the author very much advocates minimal medical intervention for older people. They should be allowed to live (and die) as they would wish…..

I appreciate your answer whatever. Thanks.

[Ewife]

Hello...sympathies for you...my husband was similar. He knew what was wrong and how serious it was but just refused to think or acknowledge/give in. It was like he was having a power struggle with the illness. I had to find ways to care for him in disguise, subtle things so that he didnt feel he was giving in to the illness. Occasionally we would have a frank discussion about it and his response would always be - " what do you want me to do? Give up, roll over and die?" Eventually we found a happy medium - i still used my tricks, but he accepted there were some things he couldnt do. I remember one time we cancelled an invitation out for a dinner party because he wasnt well enough, but i heard him say it was because it was me that had an eye infection!!!!! But i just gritted my teeth on that one.The thing is, in a wierd way, he NEEDED to believe he was ok - otherwise i think he would have rolled over and died. I had to take a step back and accept this was his way of getting through.

So you might have to "enable" him a bit, pretend the care isnt care. Does he have a close friend or relative you could ask to stay with him for "Fun" for a few days while you get a weekend break? Someone you can confide in and explain your concerns??

Atb

Ewife

[Ladypinkdoor in reply to Ewife]

Thankyou for this. From what you say your husband got through this and is out the other side. I only wish the same could happen here.

I go out to work every day and leave him all his food and medicine but if I’m not there he hardly eats a thing. It’s so worrying and nobody else who has looked after him is as persuasive as me. Which makes me 100% responsible for him, which is exhausting emotionally.

Difficult to know what to do, but I’ll manage I guess.

[Oldbits]

Hi, I understand your frustrations, been there. I too have a husband who was in denial for a long time. He was scared of the future and being angry helped. This changed when the penny dropped and he started to deal with it. But it is different for everyone when that happens or if it happens. I went away for a wonderful weekend with my daughter and left him to it. It was really hard to get back to it and settle back down and he'd got himself into such a pickle whilst I was away, which was obviously all my fault and not the fact he couldn't cope. If I'd had someone to pop in who was clued up it might not have been so bad. When he stopped denying and turned things around we planned a holiday and got away to Italy for 2 weeks last year. I can't really offer any advice but understand the exhaustion and frustrations. I swam, went to the spa and walked to make sure I got a break. Plenty of coffee and cakes on my own in shops with a book too. Xx

[Ladypinkdoor in reply to Oldbits]

Sorry - I only just saw this. I’m glad things turned around for you finally and am keeping my fingers crossed the same happens here. At least you got the two weeks in Italy! At the moment I’m trying to encourage him to at least come out for a walk instead of staying in bed most of the day. He just says he’s tired. Grrr.

Anyway, thanks for the sympathy and understanding.

[Oldbits in reply to Ladypinkdoor]

Just keep plodding away, planning things for when he feels better. He'll say he won't get better, if he's like mine, and that hurts. I just took my hubbie to garden centre for coffee and he found that exhausting and he too could have got a gold medal for napping. Tiredness is part of the illness but we were told you're healing when you sleep as long as you're eating. That was in 2020/21. In 2023 he was well enough to get insurance so off we went to italy. Make sure to make time for yourself too xxxx