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Newbie - Carers UK Forum

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Hi, I'm lying on my bed while my husband is downstairs in his chair wrapped up in blankets, with the heating on full, shaking with cold!! He has a long term tunnelled line as he is on lifetime I.V tpn, so there's a reasonable chance he has an infection. He refuses point blank to get medical help & tells me if I call a doctor he will refuse treatment. He's scared & in pain, well guess what so am I !!! Feeling desperate but resigned, I need some coping strategies before I go under too. Only people who have been in this situation can possibly understand, well meaning 'make him go to doc' DOES NOT HELP
Any advice on previous post appreciated, I've just joined this site & I'm desperate to hear from other carers who've had to deal with similar. I feel so helpless !!
Hi Anne
I'm listening but I don't know how to help you because all I can think of is the answer you don't want to hear.
I'm thinking that if you had a small child who you suspected of having something nasty and they cried and screamed and said they didn't want to see a doctor, you'd take them anyway.
I'm thinking of how you will feel if his condition worsens overnight and you hadn't done anything. So all I can do is say 'call an ambulance', they might persuade him to accept help or at least dial 111 and talk it through. Any family member you can call to come to your support? Would he allow a doctor if you said it was so that you can be re-assured?
If you think he's really in a bad way you have to call someone, whatever he says, but if you think he'll be Ok till the morning then call the GP then and talk it through with him/her. You have to decide I'm afraid, because you are the one on the spot.
If you suspect his condition is getting worse don't hesitate. Dial 999.
E.
Than you for listening, I've checked on him a few times overnight & he seems ok(ish). My G.P is swamped & unhelpful. I'm afraid anyone who has been in this particular situation, as I have many times, knows that you can't force anyone to do anything. In the past he's felt so rough in the end that he's let me call an ambulance. My mother in law, sister & daughter have also tried, with no luck. Also much as I am frustrated by his choices I have some understanding. He has spent 10 months out the last 20 in hospital & he expresses that he is getting close to discontinuing treatment. I need some advice & support for me trying to support him through this excruciating journey. All I can do is walk with him but it's bloody hard & another screaming match solves nothing. Thanks for listening, it helps to know you care enough to reply, thank you
Can I ask what he is suffering from?
He is 51 years old, I also work full time xx
He has 23 cm of bowel left after a blood clot 2 years ago. He has short bowel syndrome, his nutrition is 12 hours I.v nightly. He also has debilitating osteoporosis & osteoarthritis. Thanks
Hello Anne

Like Elaine I have no advice whatsoever, (my caring experience is related to dementia) but on googling "short bowel syndrome" to find outmore about the condition I found this website:

http://int.shortbowelsupport.com/

Don't know if it will be of any use but might be worth a look anyway ?
Thank you so much for your reply, The link is helpful, thank you, take care ladies thankyou
Hello Anne,

I'm not sure if this will be helpful or completely relevant to your current situation but I went through a similar stage with my aunt. We could clearly see that something was wrong and wanted to help her. She refused to allow us to call the doctors or ring anyone. She was adamant that she was fine and that nothing was wrong, after lots of long talks and honest even sometimes selfish needing and pleading with her to get help. Eventually she accepted our wishes and allowed us to contact the doctors, the reason she didnt want us to call was because she knew it would be back into hospital for her if we got her the help.

It's not easy to see a loved one in pain and suffering, If you think things are going the way you spoke about and suggesting him stopping treatment. The only advice i can say is talk about everything no matter how little it may seem, myself and my aunt spoke about the future and her wishes when she was told she had C.K.D Stage 5.
It was hard to handle at first to think she could just say no and that be the end of the discussion.
Thankfully she changed her mind and started to do dialysis to prolong her life, we did make an agreement for if she ever did change her mind. I think that was mostly due to family pressure on her to stay alive, but knowing someone would stand her corner and fight for her wishes when the time came made things a little easier.

In all honesty, being a guy he probably feels guilty, frustrated, scared and a burden to you and the family. Him rebelling is just his way of dealing things and trying to gain some control, Us men are not the most obvious about what we want to say or know how to say what's on our minds. I know its hard and probably going to give you more sleepless nights thinking about it all but just keep talking to him, don't try to back him into a corner with all the you gotta do this, you gotta do that. No matter how much he may need to get help, It could work the opposite and make him dig his heals in further. If you can try to make him think about his options, so he can choose himself and hopefully if he thinks he's in control he will ask you to call someone to get him the help.

Hopefully some of this will make sense to you and your situation.