Caregivers

[Negeen]

Are any of you guys caregivers? What's that like?

[Hidden]

Fulfilling and rewarding - you caught me on a good day

However, without careful management and help from Headway, Carers Centres and Social Services it can descend into an overwhelming spiral of depression and ill health - a very dark place. Been there, not going back!

Wouldn't ever want to give it up (unless OH made a miracle recovery).

Dev

[dillyd]

HARD WORK but the alternative is even worse cos it would mean one of us wouldn't be here.

Luckily now I do get some support which means I can have some me time. Without this not sure I would have coped so well.

The worst part is feeling helpless when you can't do anything to make your partner feel better other than just be there for them

[fiona49]

Totally rubbish

[Stripes1967]

For me it is very stressful and frustrating that no one out in the real world understands this disease ( most doctors). And hospitals. I hang in there for my daughter and keep positive about the ignorance we face from day to day. SLE in my opinion is worse than cancer and should be treated with the same care and dignity. I have been to every hospital in the Orlando area one time or another and some several times. The consensus is they just make you comfortable and boot you out with no care in the world about who takes care of them. A lot of the Dx that she has are knowledgable and understand the things that caregivers go through and that certainly helps. It is a tough job especially if you work and juggle Dx apts at the same time, but for my daughter or anyone else with Lupus, I would do anything to help them be comfortable.