Trying to care for someone with acute psoriatic arthritis

dreamdaisy

Oh caterina, I don't do this often, believe you me. Tears. DD

skezier

Hi Wornout,

I echo the fact your mum is lucky to have someone care as you do. Its a credit to you at your age.

I am the worn out hag thing as well and the pa is good at taking all hopes and beliefs of self value i find. I kinda think it could your mum to join the forum as well cus she would feel less isolated.

Its a very isolating condition and your so right its worse when it attacks someone already fragile.

That's where this forum could help her so much. See if she could join cus there are people here who so know where she is just now.

Know where you are too flower my mother was fairy dependant for other reasons and a shattered human being as well. Its hard on you, that i do know.

Its just an idea but do you think your mum would agree to go for some counselling? Its so difficult to get your head round the unseen enemy inside that's eating you and taking everything you hopes for away.

I know in my own case counselling helped me come to terms with it all to a degree and taught me ways to deal with the bits I couldn't cope with.... mostly but we all have wobbles now and then.

It kinda sounds a bit brutal but you are also in need of some life of your own.

I wish your mum could know that she will be ok and shave a life despite the bone shift stuff. Counselling may well help her, i might have just been lucky but I know where I'd have been without it.

You hang in there and I so hope your mum will come and talk to us as well. She must be carrying a fair degree of guilt as well.

You hang in there and she just needs to know she will be ok... some 'just' eh? Wish i knew how she could get that though. A cyber ((( ))) and a bucket of hopes. Cris x

dreamdaisy

Hi WO, I hope all is as well with you as it can be. I've hit a metaphorical wall, at a fairly high speed and am somewhat stunned - it happens every now and again. I promise an answer in due course but I think our lives have collided at inconvenient times. Sorry. :oops: DD

WornOut

Oh Dreamdaisy, you have no need to apologise. You and everyone here have already helped me more than you can imagine.

Tillytop - it turns out we do have a local Carers Centre. I am sure even the website is going to be an invaluable source of infomation.

Elnafinn - I think I may take your advice and print out some of these replies. They really have been that great.

Reading through all of these replies and other threads has been such an eye opener. Mum has convinced herself that she has the absolute worst of the worst. I am not attempting to belittle her suffering but I really do believe that there are people on this board that have gotten through tougher times (Caterina57's would be a pretty powerful example, in my eyes). She’s fallen into a downward spiral of despair and as much as it upsets me to say this, there are some very obvious psychological issues that cannot be ignored forever.

Over the past couple of days I have tried very hard to project a happier and more positive mood in the hope that it will rub off on her and tentatively, I can say there has been a slight improvement. I planned to make an appointment with her GP and have an intense discussion about what is going on. My Nan did this last year after things went downhill and the outcome seemed fairly positive, although short-lived. Unfortunately he appears to have taken some kind of extended leave of absence. I know there is one other doctor she quite likes at this surgery, so I’ll try that person instead.

After some poking around I have discovered that the next consultant visit isn’t until April. I absolutely need to talk to a medical professional and review her medication because another thing I have discovered is that she doesn’t say everything that needs to be said. She is the ‘suffer in silence’ type and I know this because it doesn’t just apply to the illness, it applies to absolutely everything. If she’s hungry or thirsty, half the time she’ll even fib about it in case it could be a hassle to anyone to bring her stuff. In reality it just makes us fret twice as much!!!

Thanks to everyone here, this experience is a lot less lonely and daunting.

stickywicket

From all you've written about your mother and especially if she 'doesn't say everything that needs to be said' to the doc, it's a fair bet she's also the sort of person who expects the doc to remember things she's said in the past, regardless of the 100s of patients who have passed through his/her hands in the interim.

I'm always having to remind medics that I've had ops, endoscopies - even cancer so many years on. Of course they forget and things get lost in wodges of notes. If she can help the doc I'm sure it'll be better for both of them - indeed, all of you.

Keep up the good work.

frogmorton

Hi worn out

Just popping in to see how things are going for you.

I should say tentative improvemnt too....definitely in you and maybe in her too.

I too looked after my Mum after my Dad died so I understand the carer's role too well. If you are not living under the same roof - I would recommend you don't. I was a single parent with two young children when my dad died and my mum had Oa and heart problems.

We lived about 6 miles away form her so l was able to go every day which I pretty much did.

She too lost the ability to make simple decisions and in the end I was writing cheques for her and everything :sad: She let me go to the docs with her and it was really useful.

She died three and half years ago and you know....I am so glad I did that for her (it was almost a nightmare at the time), I have no regrets.

I Hope we are helping you through this forum and am sure things can only improve for you.

Lots of love

Toni xx