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Hello I am new to the forum - Carers UK Forum

Hello I am new to the forum

Tell us a bit about yourself here.
I was going to start by telling my story but after reading some of the postings and replies on this forum I feel very humble by the you.. the people who take the time to help other carers who are struggling with their situation and would like to say a big thank you to you all.

Anyway, my husband was diagnosed with emphysema 10yrs ago and has, over the years been admitted to hospital a couple of times with pneumonia which has not helped and made his condition much worse. He is now in the end stage of this illness and was admitted to hospital 4 weeks ago. They put him on bipap which he has had before and he hated it, he asked to come off of it and they discussed the consequences with him which was....he would die. He wanted to come home to die and he is hanging in there at the moment but very very weak. They have finally given him oxygen at home and the last 3 weeks have been the most stressful in my life trying to get some help with his personal care. We have had to means tested and the only help we are entitled to financially is higher attendance allowance. We now, 3 weeks later, have a care plan in place after my breaking down on the telephone and begging them to sort it.

I am very fortunate and have a good family and friends circle who have been unbelievable but it is when they go home and I am on my own at night that I feel it most. Just when I thought that I was coping well, they have rung me today to say a hospital bed will be delivered on Wednesday. this means loads of moving furniture around in 2 days .... I just wish they had been that quick before.... we have waited 3 weeks for a memory foam cushion for his wheelchair. Still waiting doh

Anyway, I am coping and that's about it but I must say that I have read worse stories than mine on here and think it is dreadful that you have to fight for everything at a time when you least need all the hassle. If I can help anyone I will be more than willing to do so in anyway feasible.
Hi NannyPat and welcome Image
They did the same to me when the hospital bed for my oh arrived. They were supposed to ring the day before so I could arrange moving out the bed, which he was sleeping in so it couldn't be done before, but I got a phone call saying they were on their way and would be 10 minutes!!!!
Hi nannypat, and a warm welcome to the forum. Thank you for your kind and humbling words. Sending you ((((((((((((((HUGS)))))))))))))))))))

Karen x x
Hi NannyPat, welcome to the forum.
Glad you have a good circle of family and friends to support you. I'm sure you'll find everyone on this forum to be supportive too Image
Glad to have you here, BB
hello and welcome
Ahhh thank you all so much for the hugs that is something that is missing in my life as my family are wonderful but not very tactile. The bed situation seems to have been organised now - have volunteers from friends and family all mucking in.

Bless my husband, he wanted to know what was going on and is so concerned that he is causing me all this trouble but have reassured him that he wont even know its being done. I want to cry for him... he is so small and weak now 5-1/2 stone but if I keep busy I wont cry. Image
hi nany pat my wife has emphysema and is on home oxygen for about 3 years it took us along time to get things that she need and i know how you feel at night it can be very lonely if you whant a chat send me a message i am turk Image Image
Hi NannyPat Image

If you feel lonely, come out to play on the forum - have a moan, have a go on the fun and games, and tell us about your day on roll call Image Image

Welcome Image

love cupcake xx
Hi.

Welcome to the forums.

The only thing i can add is have a good cry if you need to it might just help to make you feel a little more refreshed and ready to take on another day..(( hugs )) x
Hi NanyPat and welcome. Big Hug for you. My advice go have a good cry, it'll make you feel better and if you don't want hubby knowing do it while you're having a bath or shower. When life gets too much for me that's what I do and come out ready to face the world again. xxx