Trying to care for someone with acute psoriatic arthritis

WornOut
WornOut Member Posts: 5
edited 25. Feb 2011, 10:44 in Living with Arthritis archive
The title of this thread is ‘trying to care’ as opposed to ‘caring’, simply because I am at a complete loss as to what to do anymore.

I am 21 and my Mother is 44. She completely riddled and debilitated by psoriatic arthritis. She began to develop it shortly after having me at 23 and it has gotten progressively worse until the present day where she can no longer seem to find any relief from medication. She has been virtually bedridden over the past couple of weeks and I just don’t know what to do for her.

She is understandably very depressed and angry with her life. With the recent clampdown on the benefits system she is now fretting over losing her source of income and it feels like she has given up on life completely. I want to be able to tell her that there is something on the horizon and that there are people out there that with which she could find some solidarity. I want to be able to tell her that she has a reason to wake up every morning and not want to wish she was dead. Her attitude is that there is nothing more anyone can do for her because she is probably already on the highest medications and government benefits available, so life is only going to get worse, which terrifies me more.

For many years a lot of care has come from my grandmother, which took a lot off my mind as I was growing up and trying to concentrate on my studies. She is tough as nails but at this point I am very concerned with her quality of life and I know that probably one day soon, all of the caring responsibility will fall on me. If things stay this dreadful I cannot see myself having a normal life in the foreseeable future. This is not to say that plenty of people don’t go on and live happy, full lives while caring for someone, but right now my Mum is in an absolute state and I have never seen or heard of anything quite like it.

Recently I have been trying to do some research but I have a very busy life and I work full time. I had my fingers crossed for there to be some kind and knowledgeable people on here that could offer advice as to how they cope, and if there are any last resort options that might be available when all the obvious ones seem to have been exhausted. I do not know all of the details with regards to her medication but I know she is on pain patches and methotrexate and was once on steroids. The latter was the only thing that seemed to help but she was taken off them a few years ago after she says she ‘failed a bone density test’. Maybe joint replacement would be an option but quite frankly they’d need to replace everything... shoulders, hips, knees, ankles, I cannot think of any joint that is seemingly unaffected.

I am only 21 and I am absolutely mentally exhausted so I cannot image how hard it must be for the people that are forced to live with the disease itself.
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh WornOut, I am so, so sorry. I have read your post (I too have PA) but I need some time to think about all that you have said. Your poor mum. This is a pig of a disease, there is no doubt about that. There are quite a few of us on here with PA, we DO know what it is like and I can understand why your mum is feeling like she is - and why you are feeling like you are. I will come back with a proper answer, I need to think it through though. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi WornOut

    Your username says it all, I am so sorry to read your thread. I feel very sorry for both of you. Life is so unfair at times, isn't it? I take it you live at home? Could your mum have some carers come in to help her out or does this happen anyway? Is your mum computer literate because she could join and get to know some of us on the forum so she will not feel so alone and desperate. It is good to talk even if there is no easy solution. Or even to read some of what others write on here. She or you could phone the helpline on 0808 800 4050, number at the top of the page. Many people on this forum and others have been helped greatly by getting in touch with them.

    I cannot help with the medication for PA etc as I have OsteoArthritis. Is there something that your mum could become interested in. My grandaughter has brought new meaning to my life but then I am quite a bit older than your mum. To feel useless will not help matters at all. I can well appreciate that. We all need to feel we have a use in life. I visit a lady who is going blind and she says she feels useless. We do have some laughs together and she looks forward to seeing me, as I do her too. Another person visits her on a regular basis as well as her friends. Is there something in your area that arranges these kind of visits?

    I do hope that some solutions are found for you and your mum.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Right, I've had a think and a ponder, and a number of issues strike me.

    1. A little more detail on your mum's meds would help. I too am on meth and steroids - I am devoting this year to coming off the steroids as they do have long-term health implications which are un-nerving, unsettling and unwanted. They are lovely little pills 'cos they do give you the illusion of feeling better but they can cause steroid-induced osteoporosis: is this what your mum had? I am on other meds too, there are many treatments out there, all aimed at reducing the impact of the arthritis - could you find out what she is on, please, or what else she has tried? How often does she see her consultant?

    2. How bad is her skin? I am fortunate in that the 'P' bit of my PA does not flare that often, thanks (I think) to one of the meds I take. The psoriasis itself can be ugly, uncomfortable, unsightly and distressing, and certainly not good for one's morale.

    3. As for the 'A' bit of her PA you say that almost every joint is affected: is she still able to walk, with sticks or crutches, or does she have a chair?

    4. Depression can certainly become a factor when one is dealing with trying to live with a chronic condition - and I am thinking of both of you as candidates for that. Your mum, for obvious reasons and you, as you are on the outside of it all and trying to cope.

    5. I can understand that you care about your mum, but I think there is a limit to how much you can do for her. She is still a young woman, albeit one in the depths of despair at the moment. Chronic illness can make the sufferer become very selfish: the world has to be geared to the needs of the patient, no-one else's needs matter because they are not ill. This is wrong on so many levels and bases. Fundamentally this is your mum's health problem, not yours.

    6. I cannot help on the benefits side of things as I don't know much about them (I am still working, afer a fashion and won't be able to claim anything when I do stop so I tend not to keep informed about them). The CAB may be able to help with information or give some advice about your mum's position.

    7. I think you would benefit from ringing the helpline here, and chatting to them. Don't worry if you cry - they will listen and talk to you when you can. I think your mum needs more help from other sources, not just you or your gran. She may not want that, but unless she starts helping herself a little more I think you will have to put your respective feet down and be a little tougher.

    I know what your mum is going thro - but I have always regarded the PA as my problem, and I have to sort it and deal with it. I do have a great deal of support from my husband (even tho he does not understand it) and a fabulous level of support from the people on here. I have been extraordinarliy low with all of this, on more than one occasion, and know I will be again, but I have to sort it. It's MY problem. No-one can change my circumstances - that is down (or up!) to me.

    I think your mum is very very lucky to have you. I hope she appreciates you and all you do - I suspect at the moment she doesn't as she is lost in her own misery. That's all well and good, but that misery should not be loaded onto you - it is not yours. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • jean123
    jean123 Member Posts: 642
    edited 30. Nov -1, 00:00
    I would like to echo what dreamdaisy and others have said. Please contact the Helplines - it is a free number on a landline. They are very very helpful, and are a wonderful caring team.

    Best wishes,

    jean123 Forum Supervisor
  • frogmorton
    frogmorton Member Posts: 29,827
    edited 30. Nov -1, 00:00
    Oh worn-out!!

    Poor poor you and poor poor your Mum too.

    PLEASE please ring the helplines you and your Mum if she will. My heart goes out to both of you.

    I am convinced - despite the situation seeming so very hopeless - that there really is hope and stuff can be done for her and you too.

    Please do not loose touch with us on here.

    Love

    toni xx
  • WornOut
    WornOut Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you all so much for your speedy replies, I feel a little bit better already. And thank you again to everyone that has drawn my attention to the helpline, I will definitely check it out. :)

    Elnafinn, life is unfair at times... I would go as far as to say it is often an absolute b*tch! I do still live at home and it has not yet reached the point where we need carers, but I can see it heading that way. I may try and convince her to have a look on here because simply seeing that she is not alone and that there are people coping with the condition could improve her mood tenfold. She does not have much to distract her right now but I'm sure I can find something.

    Dreamdaisy, I really appreciate you taking the time to write all of that out. To answer your questions:

    1) Glancing at the prescription medicine cabinet I can see buprenorphine transdermal patches, oxycontin, tramadol, methotrexate, metachlopromide, sertraline, salazopyrin, lansoprazole, folic acid, migraleve. There may be a couple more but those are all of the main ones I am aware of. Osteoporosis does ring a bell although I am not sure if she was diagnosed. It is not something she seems overly happy to discuss with me but I must find out about the consultant visits. Normally she goes with a friend to the GP or the hospital and has never taken me.

    2) I am aware that the psoriasis bothered her somewhat before the arthritis took over, but it was never enormously severe. There is the occasional flare up but it is manageable.

    3) On a good day she can travel short distances with crutches. We have discussed the idea of getting a chair but at the moment she is not very open it. She sees things like this as ‘another nail in the coffin’ but I do feel that it could be a viable option if I only I could get her to consider it more thoroughly.

    4) She is without a doubt overwhelmingly depressed. I understand that the sertraline mentioned above is an antidepressant and she is quite heavily reliant on them. I myself am just about coping, largely because I still have some remaining optimism and a group of good people to fall back on. Unfortunately she has almost entirely alienated herself from friends and family and refuses to make contact or see them, even if they want to visit her. It is a vicious circle; she is unhappy because she is lonely but does not want to see anyone.

    5) You are absolutely right. The illness has changed her to the point where I don’t even know who she is anymore. There are times where she has been selfish but I have not really thought twice about it because I knew how distressed she was. We need to start meeting halfway, because at the moment every day is a constant struggle to agree over the simplest things.

    6) I do not know too much about the benefits side of things either, haha. This is definitely something else that I need to research. I am sure that if she was willing to stand up for herself and her rights rather than completely accepting defeat, she may well find herself in a better place financially and mentally. But again, I must do some research!

    7) I will definitely check out the helpline – thank you to everyone that has drawn my attention to it. There will almost certainly come a time when we need to bring in outside help, if I am to continue to work or simply not be at home 24/7. It is so difficult to put your foot down for fear of hurting your loved one but I suppose there is such a thing as ‘tough love’. You are right, she does need to help herself a bit more because I am absolutely, one hundred percent certain that she has not made full use of all that could be available to her.
    I am a firm believe that for every problem, there is someone that has overcome it. It is just a matter of helping her to realise that there are always options available and people to talk to.

    Sorry that my first two posts have been so ridiculously long!
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi WornOut :smile:

    You are truly a wonderful daughter. As you say, we do sometimes have to be cruel to be kind. You have your life to lead too and you should not have to shoulder all this responsibility at your tender age. My mum was unwell for a longish time and I used to visit at least one day a week and she got to rely on me so much to do everything in that day and also left any decisions to me, things that she was perfectly capable of answering herself. Really simple things like, where should she put something. She is quite well in herself now and I do not go once a week anymore and she makes so many decisions and just gets on with it - this was like she was before I kind of took over. She is much better for taking more control of her life. She knows where we are, an hours journey away on a good run, she has one of those alarm thingys round her neck, and all is fairly well for the time being. I know this is different from you and your mum but taking a step back sometimes can be a good thing for both of you.

    If you live at home perhaps you would like to see relatives, family etc so perhaps you could invite them over.

    It does not matter how long your postings are on here. It is sometimes such a good idea to write stuff down. I think it really helps. Please do continue to do so as often as you like.

    It would be good if your mum called in here even if only to read about us all to begin with. I have been on this forum for well over three years now and it has helped me greatly. It makes one feel useful too if you can help others with arthritis problems and situations and I have learned a great deal by being a member on here.

    You are such a lovely girl, your mum is very lucky but she has to learn to accept that you have a life too.

    Sending you over a big hug,

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You have no need to apologise for the long posts - you have a great deal going on and a great deal to think about, and again you have given me a great deal to think about! :smile:

    Arthritis is isolating, there is no doubt about that. None of my friends have it, none of my family do, I was the only person I knew with it (I know I see lots of people at the hospital but you never really get chatting when in waiting rooms and you rarely see the same patients twice!) but when I found here I suddently realised that I was not that alone, not really. The wonderful people on here DO know what it is all like, how utterly OVERWHELMING it can all suddenly become, and how very hard it can be when one topples into the black pit of depression. And believe you me, we all topple from time to time, with varying degrees of speed and depth, but we all do. We are only human and this balsted pestilence tries us to our limits - no matter what form of it we have.

    Right, looking at your mum's meds there is nothing startlingly unusual to me eyes - I have injected meth, sulpha, omeprazole (like the lanzaprole) and for pain relief I have cocodamol, 50mg tramadol, slow release 100mg tramadol and liquid morphine for the '**** me' times. I don't think her depression meds are doing enough for her - but please remember I AM NOT A DOCTOR. What she can take for that could possibly be affected by the meth etc, of that I am sure. I am surprised that, if her arthritis is as bad as you say, there is no mention of an anti TNF treatment - those are drugs such as infliximab, enbrel, humira, rituximab etc. Has she ever been tried on any of those? I am on humira - I am not that impressed with what it does (as many on here can tell you! :grin: ) - compared to some who are on it my results are negligible but I am aware that life would be worse without it.

    I can no longer walk far, I can do about six-eight minutes then I have to have a nice sit-down, so I do. I have been on crutches since 2002, and a chair/scooter is the next stage. I won't fight that - it will mean that I can do more, go further, join in with a few more events perhaps - and get home from the pub far, far more easily! :smile: (You have no idea how important that is. My love for my husband only just beats that of my love for beer.)

    I don't think that your mum is ready to be distracted yet - she would appear to be having a good old wallow in the self-pity pit, and sometimes that is a necessary thing. It becomes harmful tho when it starts being a habit - are we at that stage now? She is fighting contact with people and yet is lonely - I know that all too well and I make a deliberate effort to keep in touch with friends. They keep me grounded. Here keeps me sane. There is a very small difference between the two! I suspect your mum does not recognise herself - you lose a great deal when arthritis moves in. I am not the person I was when mine began, back in 1997. That relatively, active, cheerful, happy-go-lucky girl has long gone. I am a pain-riddled old hag now, and that is on a good day. I do try to remain upbeat tho, because I have to. My arthritis is a strain but I will not let it affect me to the detriment or myself, or my other relationships. It cannot be allowed to do so. End of story. Your mum (metaphorically)needs a good kick to get her round the U bend of depression, but what that kick is, how it should be administered and when is not easily determined.

    I think you are right in that if she regained some control of her 'destiny' that could help, but she is not in that place yet. Does her GP know how low she is? Sometimes pills are not the answer, perhaps some counsellling would help. I don't often suggest that (for a number of reasons) but sometimes things can overwhelm to such an extent that you do lose sight of yourself and need that guidance from another source, from someone on the outside of it all. I think, tho, she would be resistant to that.

    I cannot think of anything else for the time being, sorry. I have to go and do chores and start preparing the dinner, yuk,yuk,yuk, so not in the mood! Never mind, eh? Beds don't make themselves, neither does food magically appear. I wouldn't mind a bed fairy and a food fairy! I'll be back later, probably, if not then definitely tomorrow. I will be thinking of you both, but mostly of you. You are valiantly fighting a battle that is not yours - and that is not on, not in my book anyway. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • spacey
    spacey Member Posts: 126
    edited 30. Nov -1, 00:00
    hi wornout, others have, and can give you much better advice than I can. I can only sympathise with you and say that to some degree i know how hard this is. My own grandmother has had for as long as i can remember very disabling and debilitating RA. She is now cared for in a residential home and at times as well as being in so much pain and housebound she also has periods of depression. Please keep talking on here and the help line and I wish both you and your mother well x
  • coco67
    coco67 Member Posts: 2,374
    edited 30. Nov -1, 00:00
    Hi wornout, im glad u found this place it is a fantastic life line in many many ways, i cant add to what has already been said but to say welcome and hopefully one day your mum will look in here and if she gains a little of what i have in suport etc then she will gain tons.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Wornout,

    i am sorry you have had to find the site but welcome and i really hope you can get your mum top look in as well cus this lot will try and help her as well as you.

    i can't add anything to whats already bee said but just wanted to leave you some support as well as a nice to meet you. Cris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning WornOut, I hope you both had a good night with sleep being involved somewhere along the line. I also hope that you are feeling a little easier in your own mind this morning - you and your mum are not on your own with all this, we are here and will do what we can to help and support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Morning wornout
    I think everyone has given you great advice so there is nothing I can really say. I have RA and got that after having my daughter. I was 25 and now I am 48.
    I just want to send you a hug((((((((((())))))))))) and hope that your mum can try some other meds to help.
    As for a chair and scooter .....I have had both for about 15 years.I was quite young and didn't really like either but it made life alot easier.
    Please try to persuade her to use one. You can hire them at the mobility shop if she doesn't want to buy.
    Take care lovely
    Juliepf x
  • frogmorton
    frogmorton Member Posts: 29,827
    edited 30. Nov -1, 00:00
    Hi wornout

    I too hope you are feeling more optomistic about teh present and future now than you did befoer you found us.

    Can I agree with Cris (skezier), woudl your Mum come on her and chat to usn lot? A lot of us do suffer with depression too and coping with a long term illness like this IS depresssing.

    She would benefit a lot l am sure.

    Love

    Toni xx
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Wornout, nothing to add to the excellent and indepth advice you have already been given. Just wanted to add another welcome.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • WornOut
    WornOut Member Posts: 5
    edited 30. Nov -1, 00:00
    I am overwhelmed by the compassion by the people on this board, hugs all around and thank you a million times over. You have all given me so much to think about and I really do feel so much more optimistic now. I know that it is going to be an uphill battle to get Mum back on track but I am not going to let her throw her life away.

    Elnafinn, ‘she got to rely on me so much to do everything in that day and also left any decisions to me, things that she was perfectly capable of answering herself. Really simple things like, where should she put something’ – these lines really resonate with me. As much as it pains me to say this, I feel like Mum was never a very hardy or assertive person and this horrible disease has robbed her of what little autonomy and self confidence there was to begin with. Believe me, I am going to try with all my might to get her to have a look here because the users of this forum are such great examples of how to go on living life.

    Dreamdaisy, I couldn’t possibly accept you as an old hag!! You’re far too nice for that. Although unfortunately you would be correct in that the wallowing has become a bit of a habit. She tried counselling but found it very unnerving... I, however, did feel like giving it a go. It was scary but I knew that I was losing my way and needed bringing back to reality. I don’t think many people realise how being confronted every day by such a despondent situation can really affect your state of mind.
    Although I am not a doctor either, I get the impression that your meds are more powerful that what she has. I am wondering if there could be any benefit in changing doctors because I have never been overly impressed with my local GPs and nor have any of my friends or family that have been there. Maybe I am a bit naive but I do wonder if a fresh set of eyes would result in a slightly different approach.

    I think that my tale is one of the more gloomy examples of how PA can utterly wreck a woman that was fragile to begin with. But with a bit more time, I really do believe there is scope for more cheerful updates. Watch this space. :)
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Whatever else is wrong in your Mum’s life, she has a wonderful, caring daughter.

    Hi WornOut,

    With arthritic illnesses it’s all too easy to end up accepting little losses of mobility and capability here and there until it hardly seems worth hanging on to what’s left but, I can assure you, every bit helps. The more your Mum can do for herself, the better she’ll feel. A wise old orthotist once told me he could tell which stroke patients lived alone and which had families around them – the former got better more quickly as they had to do things for themselves.

    You might be right about a change of GP but only you can decide that. If nothing else it might make your Mum feel that a fresh start is possible.

    I’m sure things will improve for you both. I really hope so.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • cherrybim
    cherrybim Member Posts: 334
    edited 30. Nov -1, 00:00
    Oh, bless you WornOut you are indeed a wonderful and caring daughter for your Mum.

    Reading everything through again it would seem to me that your dear Mum is very depressed and as everyone on this magnificently helpful forum knows depression walks hand in hand with our unwanted relation arthur.

    I would wish for you that you speak to the Helpline on here. I'm positive that they will give you the best of advice. Possibly the second step would be for you to go to the doctor with your Mum. I do realise that she may well be resistant about this, very natural if she's so very down.

    For her level of pain her meds (to me) don't seem sufficient but as DD always says "I'm not a doctor" and neither am I.

    I first had RA when I was 33 but with wonderful support and care I had many years of remission (or "burning out" as they say) OK it's now come back to bother me again at 66 but I'm positive that your dear Mum can be helped a lot more than appears to be the case at the moment.

    Do keep in touch, everyone on this forum is only too happy to be supportive at any time and in any way :grin:

    Cherry x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear WornOut

    If you could get your mum to have a look on this forum, I like you, believe it would do her good to see how supportive we are of each other and new people that call in. If she was brave enough to post she would be welcomed with open arms and it would be something she could do and get cyber friends and not having to go anywhere.

    Perhaps you could read out some of the replies you have had or print them out. It might be good for her to read/hear what others say who are"sitting on the fence" so to speak with you and your mum. Perhaps if she reads it from others, it may make her think more about things.

    I do hope that you do go out and are able to enjoy time with your friends as well as being in a full time job. You should not feel that you must be on call to your mum, all the time, however hard this is for you and of course her too. There may be a time when you no longer live at home and will have your own life to lead. Living at home makes it difficult for you, I can see that. Both of you need support in different ways.

    I think it would be a good idea to change the gp is possible, from what you say. Are there quite a few doctors at the surgery or would you have to go elsewhere? Try to ask around which doctors others find supportive. Preferably a gp with an interest in arthritis if possible.

    Chin up, you are doing so well, looking after your mum but you do have to have a life of your own and have fun with others of your own age too.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi again, WornOut :smile:

    If you are not going to change gps in the very near future you could write him a letter detailing your concerns about your mum. I did this in desperation when I was so worried about my mum and her mental state and with not living at home, this made it extra worrying for me. It makes no difference that you are living at home though if you decide to write.

    I sent it recorded delivery to make sure the letter was delivered. Not long afterwards my mum received a telephone call from her gp and he asked her to come in to see him on some pretext which I cannot remember what it was. She went along happily, feeling quite pleased that he had contacted her! :wink: When she was with her gp he mentioned that he had got a nice letter from me and my mum replied, oh she worries far too much about me. :roll:

    Anyway, things got moving quickly from then on and she received the attention I felt she desperately needed. The gp did not reply to my letter - it was my mum that told me about it. I did receive copies of letters that went to and fro regarding this whole scenario until the medical profession were pleased with her progress, but probably only because I asked him to do so.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dvaidr
    dvaidr Member Posts: 25
    edited 30. Nov -1, 00:00
    Dear WornOut. I have PA and it truly is a horrible disease. I had to come home from work today at 10. I just couldn't handle the pain and this awful foggy-flu feeling you get with it. My Grandmother also had it and my Grandfather cared for her the best he could. Of course that was then. I know that your are relatively young, but to me you are like a breath of fresh air. You should feel very proud. Like everyone though, you need a break, not least because you're missing your young life. You really need to seek help since there is help out there, (in varying degrees and quality). In the UK, there is absolutely no way you should be forced to struggle like you are.

    I've recently had a run in with a Rheumatologist. He didn't want to treat me even though my P is at it's worst ever and the fact that I was rapidly deteriorating didn't help matters. I kicked him into touch and sought a second opinion - that's a laugh; I've only had PA for something like 14 years!

    Please, please get in touch and explain the situation with a GP and DEMAND, (you don't need to nasty, just forceful), something be done. You and you mum are entitled to a life.

    I feel so strongly about this sort of thing that I've written to the Chief Exec of the hospital where the Rheumatologist is based. Don't settle for second best!

    Good Luck.
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi wornout
    just popping in again to wish you and your mum well, and to let you know I am still thinking of you.
    Juliepf x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Wornout and welcome from me too.

    I am coming belatedly into this thread and I can see you have already had some great replies.

    I have just had a thought (I don't think I am repeating something which has already been said, but apologies if I am). Is there a "carers' centre local to you? We have one in this area which is run as a charity and is there to offer support and advice to anyone caring for someone, with, I believe, a particular focus on young carers like yourself. If there is nothing listed in the phone book, you could contact your local Citizens Advice Bureau to see if they know of any such organisations. The CAB might also be a good starting point in terms of advice about benefits etc.
    Thinking of you.

    Love Tilly xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello WO, it's good to hear from you today: yet again you have provided much food for thought and I have been thinking - my answers are coming but they are cloudy, nebulous, not truly formed yet. One area that is troubling me is that you mention a GP but not a consultant - does she have one and how often does she see him/her? I see mine every six months and in between that I meet a rheumatology nurse, so basically I see someone every three months. I also have access to a rheumatology helpline, which is a useful source of support and/or back-up. My GP cheerfully admits that she is all-at-sea with the meds I take but she knows that the hospital are doing their bit. Does your mum have a similar resource? I know that provision varies widely throughout the country.

    I am not staying long: it's been long day, one way and another, and I am now doing the dying-duck-in-a-thunderstorm thing, but I will be back tomorrow (yes, yes, I know what you lot are saying, what a surprise! :smile: ) but I am thinking of you both. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi worn out
    I have been reading your post with interest. Believe me I know exactly how you feel, caring for someone is demanding and draining both physically and emotionally.
    I was 19 when my father died and my mother was 53 at the time, and from then on her health began to decline, first with epilepsy and then OA in her hips and knees, she did have a hip replacement but refused to have any further surgery, subsequently her mobilty became very poor, I stayed at home and looked after her combining that with work, and quickly the years passed and other problems came, blindness, deafness, immobility and incontinence, she then got dementia at which point I was caring 24hours with very little sleep. And I was really really worn out. I asked for help from the LA and they felt that I was ok. Eventually one day I snapped, I rang my GP surgery told them that If I didn't get some help I was leaving, (my case was packed and the dogs had their leads on- even though I had no where to go) I must have been in a state because within two hours a psychiatrist was knocking on the door, he prescribed new meds for mum which made a big difference and demanded that Social Services undertake a full assessment of mum and me!
    (as a carer you are also entitled to an assessment) The upshot been that Social services agreed to pay 17.5 hours care a week on direct payments
    ( which my sister recieved to care for mum whilst I went out to a part time job 15 hrs a week) It may have not been much but it saved me, they also agreed to a few weeks respite care. sadly it was whilst mum was in care she suffered a massive stroke and died just three years ago.

    I am telling you this because I truly understand how it is for you, and as you and your mum are both very young you need to get all the help you can so that you can both enjoy a good quality of life. I was in my late 20's when I started caring for my mum and she was very demanding, insisting that I do things that looking back she could have done for herself. I was 51 when she died!
    The result is that I am now on my own - I never married or had children and at times I am quite lonely. I am lucky that I have a good group of friends that have been with me from my school days and I have a sister who I am very close to. I have shared in their childrens lives and they now have children who I love dearly too -- but they are not mine - I have never had a mothers day card or had the joy of a child saying I love you mummy, neither have I had a husband or live in partner - who would want to take a lover and their mother!
    I don't regret looking after my mum I loved her dearly, but what I do regret is not getting the help that I needed so that I could live my own life, and yes I do regret not having children
    Believe me the years pass so quickly! I really hope that you get the help that you need and are able to live your life how YOU wish to
    Cath