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I'm not strictly speaking a carer, certainly not in a physical sense, but I'm finding it harder and harder to deal with the cognitive and memory issues my husband has with MS. Kind of hard to explain without going into lots of detail but I find the extra responsibilities and stresses I experience as a result of this are having quite a bad an impact on my MH at the moment.
Currently pinning my hopes on a hunch that he might also be hypothyroid, which at least would be treatable. TBH I'm going to be pretty down if that proves not to be the case and we just have to get on with it.
To get to the point, I'm wondering if any people who are carers get any sort of psychological support or counselling or whatever that helps them? I've toyed with the idea of asking my GP to refer me back to a psychologist or psychiatrist but not sure if there's any point.
Cheers xx
Hi Jane
i can sympathise with you on some of this, as my dad had MS when I was very small and I remember seeing him decline gradually at a time when there was no other treatment for MS other than putting people in long-term hospitals.
Have you tried any of the following:
* GP/hospital social work referral
* MS Society
* council social care department
* local respite care organisations (not sure where you are in the country, but I know quite a few regions have them now
It does sound as though support for you is a good idea though - from working in the NHS myself, I know that carers put up with mountains of stress without a murmur, but I know there are organisations out there that might be able to help with some of the practical stuff.
Hello Jane C,
Just wanted to say that my heart goes out to you. We have the same problem with my daughter.To explain that she has been well brought up and had a good education,good job,good life --till her early thirties.In 2002 after being in remission for 2 years she has had full blown MS.No remissions and is in hospital at the moment because she cannot walk at all and her memory is at its worst.The point I am getting to is that she hates me (no one else) She swears ,Curses me and cannot wait for me to die. This is why she lives on her own .She has upset me so many times ,but I have learned to put up with it,because it comes with the illness.I will not desert her.Getting there.The MS help line is no use at all. My Gp knows of the situation I am on medication to calm me down. Can your Gp suggest anything?there maybe a group with folk in yout position. I wish I had a solution to the way life has treated us.
I know telling you all this will not solve your problem
but I will be thinking of you and hope i have not upset or offended you.:flowers:Take care
Nellie :hugs: of course you haven't offended me. I'm so sorry your daughter is like this - makes my husband's probs seem minor. I really feel for you :weep: My husband has been nasty and cruel at times but nothing sustained like you face. It does help to be reminded that you are not the only one whose life has been affected by this horrible disease. I'll be thinking of you too, what a horrible situation you are in. If I can ever be of any help or support please ask :hugs:
Blueangel, thanks very much for those helpful suggestions. I think the time is coming when I will have to get some support. Not sure how I;m going to explain to husband why I need it as he can be very sensitive and volatile at times. I also feel there's that thing with because he doesn't look ill, are people going to take me seriously? Just some things I need to get over and I will explore your ideas if things don't improve xxx
Hi Jane ...... This may be of no help whatsoever BUT! I was in Hospital recently in Scotland and noticed some posters on the walls for carers groups. Now I'm not sure what they were for or if they have different groups for different illnesses.
Maybe contacting your local NHS hospital could help or I'm sure the Citezens Advice could let you know of any help groups in your area.
I hope you find some help and peace of mind.
Take Care,
Julie xx
Thanks Julie, you made me get thinking and I discovered we have a Princess Royal Trust for Carers centre where I live - am considering seeing what they might be able to offer xx
I know how much you have to contend with JC and I'm really sorry you're struggling atm.
I hope your husband's symptoms turn out to be of a treatable nature, rather than a progression of his MS - but I definitely think you should push for extra support, not only for yourself but for hubby.
You had that alternative "mineral" treatment in the past which helped (I know you had to go private) - could you not look into similar treatments available on the NHS? Just an idea.
Otherwise, you could always discuss other meds, Jane. I'm on pregabalin for pain but it's also very useful for anxiety conditions.
I really hope you find a way forward with this as it can't be easy.
I admire you for not only being a carer and wife but for also working despite all these issues.
Never surrender JC.
:flowers:
I've grown up with my mum who's epileptic, it has always been uncontrollable - and my sister who's severley autistic plus lots of learning difficulties and asthma etc. I'm not the primary carer, when my mum's not out of it she does fab but I am a carer in the way that I'm looking out for my mum, physically helping her when she collapses supporting her when my sister kicks off (she's very demanding and quite volatile), or just helping round the house when I'm home. I myself suffer with dyspraxia, depression, anxiety and possible OCD as well as some long term health stuff too.. Dad's not around, thankfully (or sadly, however you want to think of it) he lives thousands of miles away in the UAE..
I don't think of myself as a carer either to be honest but I know that what's going does have a effect on me and how I feel. And on the other hand, how we feel has an effect on who we support - i.e. if I'm unhappy, that makes my mum feel worse etc - which I suppose might be happening with you. So it sounds daft but if you can get the right help for you that may help your husband a bit too, to know that you might be a bit happier with things.
I know none of that's in any way as bad as what you must be going through however, might be able to offer you some advice.
Definitely chat to your GP, mine has been an absolute lifeline and I couldn't cope without her. They might refer you on to counselling or pyschology, is what they have done for me but I suppose it depends. Mine is thinking about putting me on meds as well to see if it helps at all, I wonder if you've tried that?
Do you have good support from family/friends, sometimes its good just to escape from it all - even if that's just a chat on the phone?
Do keep your GP informed - and keep telling them how it's affecting you. As much as I don't like writing this, if and when things get worse you might want to think about respite care or someone else coming in just to give you a break occasionally, if your GP knows how much things are affecting you this may be easier to organise.
Princess Trust are pretty good, I was involved in their young carers scheme a lot in my late teens, most towns have a carer's centre that you can give a ring, or just pop in for a chat. Most hospitals have dedicated offices for carers too, for info and support.. Carers UK (google) are quite good as well, my mum gets newsletters from them fairly regularly and they're always organising trips, talks etc... I think both also have phonelines or websites, and one of them definitely has a forum too.. They take on anyone who's supporting someone with a long term illness or disability - which you are so they should definitely help.
As for explaining to husband I really don't know. I know with my sister she
was told respite was a holiday from mum and myself - when I'm at home we share a room so she's thrilled to get I'm aware though that it will be quite different for you and so maybe this is something your GP can help with.
I do hope everything works out (and that this message isnt too long!), PM me anytime if I can help at all hun, best of luck and God Bless :hugs:
Linda x
I am full time carer for 2 people. I can think of a few things you could consider.
I would certainly contact Carers UK for advice but you may also have a local carers charity.
MIND often have local support groups and if you have one near you they can offer support with anxiety issues.
There are also carers groups run by various charities.
I would also advise that you see your GP and ask to be referred to the local mental health team because they will probably help you in more than one way. They will certainly be able to offer counselling and/or therapy. They may also have a carer support worker who will support you with any issues you need to talk about. They will also have their own mental health support groups where you can talk to others.
One other thought is that often churches, hospitals and surgeries also provide free counsellors who are free or only ask for donations.
The GP will certainly be the main route to support but I'd also suggest searching on the Net together with looking in papers, on noticeboards at the surgery etc to see what groups are around.
The Gp will be the main route to more support but often it's also a case of seeing what's available via charities in your area.
Hope that helps.:hugs:
MM, Linda and Bill, I am really touched by your posts :hugs:
MM, you are a top man and always such a great source of support for me, I really do appreciate it. I think I'm on quit enough meds with my heavy-duty dose of Prozac but Ill bear your suggestion in mind if things get worse. I'm still on my minerals and they do help to an extent - they're specifically named on the Scottish NHS "banned" list for getting on prescription though :mad:
Linda, I really appreciate you taking the time to post so much info. It does help to be reminded that other people are going through similar. I am lucky enough to have a couple of friends I can talk to - unfortunately I don't get to see them to often.
You and Bill are both right - I do need to speak to my GP. I guess I've just found I've felt fobbed off by them about other things and am scared that will happen with this as well. At the moment, I can keep it in mind as a possibility to hang on to, but if I actually do it and don't get anywhere, then it's something else that has become closed off to me, if that makes sense.
Suppose I think they'll just see me as crazy because my husband's issues aren't physical.
Too much thinking I think! But thank you all so much, you are all such a big help xxx
Hi JaneC, I can't offer any advise re your daunting situation....but I'm sending you hugs :hugs::hugs:xx
sending a big bosom down hug too Jane :hugs:
new member .......but always here to rant to by pm. brave sassy lady :ohmy:
WE NEED to keep our identity despite what life dishes out and we have to get stuck into ........hope you find some support Jane .
the problem is I feel that this sort of huge benefit to carers cant be measured for the govt targets ...how the hell do you make a tick box questionnare for something so intangible?
ha ............another rant for another place Jane x.............hope you brave lady get some serious assistance .
but not holding my breath .
love xxx
What an incredible bunch of people you lot are? How on earth do you cope? Talk about unsung heroes?
Jane, I had a thought from reading all of this. Do you have a good GP? If, as you state you feel you are being fobbed off, go to the practise manager. As you know I am the unofficial carer for my inlaws. One is 90 with alzheimers and the other is 75 in a wheelchair with MS. I am lucky enough to have a fab GP, in fact there are several at my surgery who are brilliant. But my inlaws have a GP who is a waste of space, I don't understand how he is allowed to still practice tbh. I have asked for his help so many times and I am just wasting my time so I went to the practise manager. He did his best to step in and help but this GP is an ignorant git so I reported him to the GMC.
A GP has a duty of care to your hubby and you the family, but many will do as little as possible.
Amazingly my inlaws are getting much better care from their GP.
If you get stuck or don't feel upto asking shout, I'll help you if i canxx
if I actually do it and don't get anywhere, then it's something else that has become closed off to me, if that makes sense.
If you get fobbed you, you shout even louder until they listen because just as Ditzygirl says, A GP has a duty of care to your hubby and you the family.
I've been lucky that I now have a good Gp who does all she can to help me in my situation, even though she agrees with me that I need a magic wand to overcome the issues I have to deal with in my caring role that I have to cope with.
Suppose I think they'll just see me as crazy because my husband's issues aren't physical.
It makes No difference whatsoever if the caring role involves physical or mental issues. Whoever we care for, we are under constant stress and if we don't get the mental and/or physical support we need then we become a patient needing even more support ourselves so all Gp's should realise that if they don't look after us, we'll be visiting them even more.
I must admit it is a subject that really makes me angry because when I was first a carer I received no support at all And had a full time job to contend with. Eventually the pressures of trying to cope with both became too much and I ended up on ad's myself. Things became So bad I resorted to selfh and od's, and even then the Gp's would say "Why are you wasting our time when there are "genuinely ill" people that need help" and "Think of the person you care for". I always used to think to myself "What about ME?" No one lifted a finger to help me cope. In the end, when I heard of a carer who jumped off a bridge with her disabled son, I realised I wasn't the only one suffering from lack of support and that made me determined to try to help others rather than give up myself.
The only way I've found that works, is to keep shouting because the one who shouts loudest is the one who gets the help. We really shouldn't have to though and nor do we feel we have the energy but fighting for our rights seems to be the only way that works.
Since that bad spell, I managed to get hold of a cpn, helpers I can pay for through social services who have allowed me time to myself to do things I like and a carers support worker I can talk to. I also got to see a psychologist who helped me see alternatives and also counsellors. It hasn't answered everything but it eased things.
You're far from alone with these feelings and like Ditzygirl, I'm more than happy to help you in any way possible.....but if your Gp won't listen, keep shouting until he gets fed up you and is forced to refer you to the support available to you.:bighug1:
paula lynne
14-03-11, 10:08
Hi Jane, Im sorry, only just found this thread. Weve PM this, so only thing to add is to reiterate the excellent advice youve been given. We are all rooting for you and your husband and wish you love and hope as you see your GP. Big Cwtches lovely girl x:bighug1:
I have found caring very lonely, it is the toughest thing I have ever done.
I have had battles with Occupational Therapists, social services and this awful GP, not to mention the other family members who avoid the tough stuff.
I have cried, got stressed, thought about walking away but I just can't do it. My father in law completely trusts me to look after him and that is a huge compliment. No one can help getting old or sick.
I wouldn't wish this on anyonex
Thanks for the hugs, sharing of experiences and advice everybody. It is all a huge help. I'm at the doc on Wednesday so will try psych myself up for bringing up the issue. If only I could take one (or all of you) with me
:bighug1: :bighug1: :bighug1:
If only I could take one (or all of you) with me
I'll be with you because I'll be thinking of you.:hugs:
Ditzygirl...I so much empathise with you. I could have written that myself because of how I'm feeling.:weep::hugs:
I take my hat off to ALL the cares out there.:bighug1::bighug1::bighug1:
If only I could take one (or all of you) with me
I'll be with you because I'll be thinking of you.:hugs:
Thanks so much Bill :hugs:. It may sound daft but when I'm sitting in the waiting room I'm going to imagine my NMP friends are with me and encouraging me xxx to you all
Good! That's why I said it in the hope you'd feel less alone. I'll also be watching to read how you got on!:winks::hugs:
Brilliant piece of psychology Bill! Lol. Ah well,doc's this afternoon. Husband's blood tests normal so bullet must be bitten :weep:. Feeling very upset and anxious about it :rolleyes: but in a couple of hours it will be done :) xxx
paula lynne
16-03-11, 12:35
All the best Jane, will be waiting for your report with baited breath. Fingers crossed for you both love x
scottishcantona
16-03-11, 12:56
With you every step of the way x
Bill - thank you for your words.
Jane don't worry about being upset, a good GP is used to it. Well they are if they see me anyway!!
Good luck and let us know how you get on.
A good GP will support you because of YOUR health. As you know I have had the toughtest 2 years of my life, but I have learnt sooooo much.
If I can help you in anyway let me know.
Guys having read this it seems we as carers need some support.
There is a very new website called Agonyfriend.co.uk. It has a free forum and one of the subjects is carers.
This experience has been so lonely and people add their two penneth but sometimes they just don't understand.
I know this site is my life line with Anxiety so maybe the other one can be for caringx
Good luck :hugs: let us know how it goes xxx
Hi ya Bill, YES YOU REALLY ARE TOP MAN
Big thanks to Paula, Ditzy, Linda, SC - and again to Bill and everybody who gave me the courage to speak to GP. :bighug1: to y'all. I do have issues with asking for help (and rejection) so I did find this hard but I had no need to worry at all. Doc was understanding and result was a straightforward referral to the mental health team. I do have mixed feelings about this but am trying to remember that having to return to the system I needed to use after PND and the death of my dad doesn't mean I'm going backwards - I have just had some different things thrown at me that I;m having difficulties with.
I also spoke to my husband this morning about how his illness affects me (it's also to do with having CFS myself, I think) and he was understanding as well.
So big :yesyes: to everybody who has posted on this thread for giving me the encouragement I needed to see what can be done to help us instead of thinking we just need to muddle on xxxxx
Glad you got on OK with it all :D
I'm away to try and do similar on Friday, very nervous, going to try and ask about things I've not really ever spoken about before (OCD type stuff)so will see how that goes - when I tried to talk to CBT therapist about it he said he wasn't wanting to discuss it so don't know how my GP will re-act.
I am glad you got on alright though, and that you're being reffered back to mental health, good luck :hugs: xxx if you can ask for help it shows you're a stronger person, so I've always been told anyway xxx
Jane
That is brilliant news, well done.
I understand your concerns about your referral, but this team will offer you the tools you need to cope.
I drives me nuts the stigma of mental health teams.
If it wasnt for such teams I would have lost a very special aunt, who also suffered PND.
No one can help being poorly or struggling to cope, you do what is right for you sweetie, that IS ALL THAT MATTERS!
Glad your hubby is listening too.
And you know where we are if you need us.
You have taken a huge step forward todayxx
:bighug1:
Daisycake - Good luck for friday,
Write a few things down before you go, take some tissues and then go for it. Asking for help is tough - I am rubbish at it, but once you have done it you will feel relieved.
Again you know where we are if you need anythingxx
Thank you Ditzy, have written down some stuff, its quite a lot as have a few questions after seeing gynaecology last week too. They're asking me to ask her to do some tests too - so I'm going to be well over the 10 min limit haha! Hopefully be fine though, I have the first appt so she wont be rushing me out the door or anything I hope
paula lynne
16-03-11, 23:12
Well done Jane, its hard telling it like it is...I hope the MHT give you the help you need to move forward. Glad you had a chat with hubby, always carthartic to get stuff off your chest love x
All the best Daisycake for Friday x
I did find this hard but I had no need to worry at all. Doc was understanding and result was a straightforward referral to the mental health team. I do have mixed feelings about this but am trying to remember that having to return to the system I needed to use after PND and the death of my dad doesn't mean I'm going backwards - I have just had some different things thrown at me that I;m having difficulties with.
I also spoke to my husband this morning about how his illness affects me (it's also to do with having CFS myself, I think) and he was understanding as well.
Just goes to show that often our worries and fears melt away when confronted in the right way and that often worrying feels worse than doing so imagine how anxious you would still be feeling Every day until you sorted it.:winks: Food for thought about anything that frightens us.:hugs:
Took alot of courage for you I know so Well Done!!!:yesyes: Maybe my tactics worked!:D Seriously, I'm Really Pleased for you and also that you're accepting that you've just got different things that need dealing with.:hugs:
One last thought, what about a carers section on the forum? I don't think there's one on here already? What do you and others feel? The section could be for Anyone who is feeling extra stress because someone they care about is ill. There could also be links to other sites that offer carers support. Just a thought as there seem to be a few in the same boat.:shrug:
I'm Really pleased for you Jane. See, I said I'd be checking up on you!:winks::):bighug1:
[/COLOR]Just goes to show that often our worries and fears melt away when confronted in the right way and that often worrying feels worse than doing so imagine how anxious you would still be feeling Every day until you sorted it.:winks: Food for thought about anything that frightens us.:hugs:
Spot-on Bill - as happens at least 99.9% of the time, the reality was nothing like the fear-fuelled imagined scenario.
I'm Really pleased for you Jane. See, I said I'd be checking up on you!:winks::):bighug1:[/QUOTE]
That's why I couldn't chicken out :), couldn't let down the people on here who have been supportive. Thanks again to you, Linda, Paula and Ditzy for your encouragement, might not have managed it without you. I'll no doubt be back being wimpy when my appointment comes through.
Linda, very best of luck for tomorrow. I hope you are as fortunate in the way things go as I was. Remember, your NMP friends can be there with you if you want them to be xxx
And :bighug1: again everybody
thank you will try to remember that :) she is a lovely dr and trust her a lot so hoping she'll help me xx
I'll no doubt be back being wimpy when my appointment comes through.
Jane:hugs:
Look at it as an opportunity rather than anything to fear. You only stand to gain and have nothing to lose but if you feel you need some support you know where we all are!:winks::hugs:
Thanks Bill you're right as always xxx
Done - not as bad as I thought. Blood pressure still high and I need to lose weight - told her I'm fat (well, I am) and she said cuddly's a much nicer term.. Do need to lose weight apparently but she's starting me on cipralex first, she thinks if I am happier I might take to losing weight better.. I honestly thought I should just put up with the anxiety but she said it's not fair on me, it's too much to deal with and it's basically ruining my life - which isn't good at 19! So will try to solve it. Did mention things I was scared to talk about, she never asked me to go into detail which makes it easier, but she said the cipralex should help with it (intrusive thoughts basically)..
Hope I'm not intruding on your thread Jane by the by, just thought it'd be easier to type an update here rather than elsewhere!
Thank you all for support xxx
Of course you're not intruding Linda. Glad your appointment went well and hope you get on well with the meds :hugs: xxx
Hi JaneC,Hope you feeling more positive. I have been thinking of you and how you are copeing.
There is nothing I can add to what has been said to you.
Take care
Best Wishes
Helen:flowers:
Gosh, I can't believe it's so long since I started this thread! Sorry I didn't reply to your post Helen, was very kind of you to say what you did. I just haven't been on NMP much lately for one reason and another.
Just updating to say I had my initial appointment with the MHT today to discuss what help might be appropriate - and was quite pleased with the way it went.
I had the choice of waiting a year for CBT or psychiatrist; or seeing a psychiatric nurse for eight sessions which would happen in about a couple of months. Was happy to go for the latter as it was a nurse I saw today and she seemed to totally understand where I was coming from with what's happening in my life. The first health professional I've seen in two and a half years that actually seemed to get the fact that it has a pretty big impact on your life when you lose sometimes two days a week to sleep.
She also gave me some reassuring advice on medication. I had a really low spell a couple of weeks ago and was so desperate I ended up speaking to the duty GP about whether I should think about upping my Prozac dose from 40mg. Of course I got the guy who had previously remarked that my dose was "hefty" - so he didn't like the idea at all.
The nurse today said as far as she is aware there is not a problem with anything up to 60mg and to speak to my regular GP, who I'm pretty sure will say go for it if I feel I need to.
I'm feeling reasonably well just at the moment and hope not to have to do that but I feel better knowing it's there as a sort of safety net.
Hope everybody is doing well :grouphug:
paula lynne
19-05-11, 19:39
Glad you are feeling a little better Jane x Thinking of you x
Hi Paula, thanks, I hope you are ok, I'm always thinking of you too xxx
Hi Jane C,
No need to apologize Jane. I have just come across your post.
It's really unhelpfull when one GP is more considerate than another. I have the same trouble.I try to make a prebookable appointment with my Gp. If I go to another one they tend to say something like 'they are addictive you know' or 'do you think you can come off these now?' or 'there is an MS society you know' OF Course I Ruddy well know.
Any way there is no improvement with my daughter,no more treatment. She is in her own flat again with more care. Nothing has changed.
I have been telling the medical profession that she is suffering from depression as she is very angry. At the hospital the other day she did admit that she was depressed,
so they are giving her some antidepressants I have to collect them on Tuesday.
Pehaps they will help her with her mood as well. Sorry to go on a bit Jane.
I do hope you are getting on ok
:hugs:XX
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