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COPD - Carers UK Forum


For issues related to specific conditions and disabilities.
hi everyone
i care for my partner who has copd moderate.
his mental health hasn't got worse due to his illness yet . Like many of us i rarely get out with him not being able to walk far . he has a walking frame with a seat on which the social service have provide us with.
I feel though he is slowly getting worse and that in turn is making him more house bound .
we cant afford a mobiltiy scooter as he doesnt get disability allowance but attendance allowance due to his age.
I often find it hard to sleep due to being scare that he might stop breathing any minute or his cough will get bad and i have to ring the urgent care team out.
It also make me feel isolated and invisiable sometimes as everyone that visited always seem to ask how he is and never how i am which hurts me the most .
As those that do only come when they want something except for one friend .
I think if it wasnt for my hobbies and writing my fiction books i would have gone mad by now. but i feel that i need a not from caring but from the home we live in . The last holiday we had was seven years ago .

i also miss going out just for a couple of hours for a coffee and a chat but as there is no one to sit with him even though he keeps telling me to go out , i dont feel that i could leave him.
And i have not on near me that i could talk to that is going through the same as me .
so that increase my isolation . yes i have facebook but that doesnt give me the same feeling as talking to a real person face to face.

I have a support worker from the local carers centre who does my listening ear but what i would have liked is a support network of carers like me that have each others contact details so if we wanted to meet up for a coffe or go out for the day together as our breaks we called each other or even picked up the phone to chat if we couldnt sleep when things where tough.
As we can understand more about how it effects the ones we care for .
anyway i'll let you all go and take care carol
Does your partner have a lifeline? The carers support worker should be able to work with SSD to find a carer who is suitably qualified to deal with COPD so you can enjoy a day out. There are electronic monitores which can warn you if breathing stops, so you could then sleep better.
hi everyone
i care for a partner with moderate - serve copd .
he is not on oxygen as yet . but ive noticed that when the oxygen levels drop he gets a bit forgetful and repeats things. also can some times get low moods.
he walks with a modilitiy walker that he can sit on if he get to breath less .
Im dreading when he gets the oxygen in the house. but he has recently been told that his colon cancer has returned and due to his heart problems they are not going to remove the turmor but control it through radio therapy . also are going to put a smaller stoma bag on as where the cancer is will make bowel movements painful.
ive found that if he has actmel in the morning then snacks and a main meal at teatime he copes better . so your not alone .
take care carol
bowling bun
nope he hasnt got a lifeline in as yet . im think about getting telecare in so i can get out.