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Where do I start? - Page 2 - Carers UK Forum

Where do I start?

Socialise and chat about other areas of your life
Well done John. You're amongst real friends here. Keep up the good work and know that we're all here for you and listening. Image
Another one listening and wish I could say or do something which would help.

Yes, the responsibility on carers' shoulders is enormous. Not a week goes by when I don't wonder if doctor or ambulance is necessary.

This Forum is my lifesaver - here you will always get a listening ear and people who understand.

Take care,
Another one listening here - nothing new to suggest but sending (((hugs)))

wifey xx
Just want to say thanks.... knowing other people are in the same boat and that I'm not alone or unique does help.... I wish I could say things had eased up but they've not really... we're kind of drifting along in an alternate universe right now where things appear normal on the surface but....

We are counting down to a psychiatrist appointment which is coming up very soon and then hopefully we will get answers, or at least a few better questions....
OK, keep us posted. I'm crossing my fingers things will get better. When you hit the floor, there is only way left ... upwards.
Hi John, I'm afraid there are many doctors etc. who just don't recognise how hard we carers try to make our carees lives better. I've been caring for my son for 34 years yet at a recent meeting my views were ignored by the social worker of 4 months!! I didn't argue at the time but spoke to her afterwards, making it clear that I did know my son's capabilities and his weaknesses. As carers we need to find ways of doing things which are OK for us and our caree, with a bit of compromise. If the painkillers are wearing off in the middle of the night, have you asked for long lasting versions of the same drug? They are available on the NHS but not offered readily, so ask your pharmacist for details. If your partner is leaking at night, ask the continence nurse at your practice to come and talk to you both. It might be that other products are more suitable for night time use. Using smaller cups for drinks rather than mugs might reduce fluid production at night. It's OK to say here if you are fed up - I had to break a holiday with my son (learning difficulties) because mum was admitted to hospital. Again, a matter of working out what the top priority was at the time. Are you getting any "me" time each week?
Hi John

I'm new around here, and still exploring the forum. I know that feeling of 'not knowing what is for the best' as you try different things, with very little guidance.

When I'm in that position, I remind myself that the important thing is that I AM THERE, even if I don't know what is best, even if what I'm doing turns out to have been the wrong thing. We can't love perfectly, we can't care perfectly, but we CAN be there when our loved one is suffering, so they know they are not alone.

I hope you can get a break soon, and that the psychiatric appointment sheds some light for you both.
Hi John,
I hope you got the appointment you were waiting on and that things are a little better. I am new to the site and when I saw your post, I knew exactly how you are feeling. I am in the same situation with my husband who has incurable cancer. I am also finding it very hard. We can only do what we think is best. I wake my husband up if he sleeps through his meds time, when he complains, I say better now than be in pain later! For a while, he used to rant and rave at me, taking his frustrations out about having this terrible disease on me as he is a non-smoker, non-drinker and used to play squash 5 times a week. I had to stand my ground and he is better now. For a while, he kept on telling me to leave, that I shouldn't have to put up with it all. I told him I married him in sickness & in health and if it was the other way round, would he leave!? He admitted that he wouldn't so he has not said that particular one for a while now. When we love someone, it is so hard to see them suffer or be in pain but that is exactly why we are there, because we love them, want to help them want the best for them. No-one could look after your partner like you can.. simply because you love him.