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Frustrated and worried

Hi all. Am posting here as a Carer for my daughter who is 35 and currently living with me. Diagnosed 9 years ago. She has had a rough ride and naturally anxious but does not listen to advice. Or only listens to what suits her. She has isolated herself and I am finding it increasingly hard dealing with the moods . I have had to retire early to be around as she won't leave the house .

i feel guilty when I stand back but  also worried that I am doing too much. naturally I cannot speak to any of the health professionals as she won't give permission.   Where we live In the north of England there is not much help so  I am really stuck. Any advice would be much appreciated as I feel that I have almost reached breaking point.

Oh dear, it saddens me to read about someone who isnt dealing with their disability very well.

Your lass (I`m in Yorkshire) is very lucky to have a mum as loving and caring as you.

But  try telling her that eh?

So if she wont let you speak to any of her medics, what else can you do?

How disabled is she? I am wondering how she sees herself. ie has little self esteem.

I think something needs to be done as a matter of urgency ,as we dont want you to go under too.

Do you have a partner? Have they got any useful input?

What about contacting your social services yourself, for a carers assessment?

They do have a strong opinion on how well carers need to be.

Other than this, I am struggling to think of any better advice.

Let me know how it goes,if you do decide to ring the social services, yeh?

Do try to look after yourself hun.

luv Pollx

Thank you Poll for your advice.  You are right  she has little or no self esteem and probably has become isolated because she cant go back but scared of moving forward.

I will contact the GP surgery and see if they can help but I know that the social services are really strapped for cash.  I have a disabled uncle and he has had such problems with carers not turning up or even saying they came and he must have forgotten as he is elderly ( but there is nothing wrong with his memory) it is disgusting.

She is not that disabled but tends to avoid doing things that are a little difficult - the phrase  I use  " you only get out what you put in " is wearing a bit thin .

I have now begun to feel guilty when I meet a friend in town for a coffee and think I should be at home and she should be out enjoying herself. I know I should not beat myself up and maybe I am making things worse by doing too much.

Sorry about the rant but just low and frustrated.

hi rosebud

i'm in greater manchester and there is lots available here.

whereabouts are you?

if there is an ms therapy centre near you, i'd advise you to try there.

you would be welcome as a carer and could go without your daughter to find out more.

please follow Poll's advice and make sure that you have help for yourself.

good luck

carole x

I know this is a strange question but I am wondering whether I should stand back and not make her so reliant on me. What do you folks think?   I know that I do too much but it is a difficult situation and I think I may be making matters worse she is not a child but she is still my daughter.

I suppose that she is sort of stuck at the moment but isnt really accepting help from the professionals for instance when she has any appointments she tends to cancel.  I have another daughter who lives in scotland but do not like bothering her as she has a young family. However I just am not sure how we can continue to live like this.

Sorry about the rant but it is good to get things off my chest sad

 

Hi all

Just an update  ( although not much has changed). Daughter still stuck at home not doing anything to help herself!  I believe now is the time for tough love however this may turn and bite me in the bum if I am not careful.

I have spoken to a friend who is a trained counsellor and she says it sounds as though my daughter is suffering from "secondary gain" I looked this up and it seems to fit.. It is when someone has got used to attention and feels safe behind their illness. They also quite often dont realise this is what they are doing so it is no good confronting them as their illness becomes a security blanket.  I know the best thing for her would be to start working again at least partime but this is not going to happen at the moment due to fatique. ( she worked in a kindergarten).

Has anyone got any suggestions as I am struggling with frustration and feel l whatever I do is wrong?

I have MS

Hi Rosebud45,

We all as MSers or carers react in different ways.  It gets really complicated with close family. As a techie I would ask, what would your daughter do if you broke your wrist or leg? If she could push herself under those circumstances it would seem that she is not trying hard enough while you make things as easy as you can (as most mothers would) You might need to be kind to yourself by pushing her a bit harder. In the longer term you might both benefit.

I reserve the right to be way off track or out of order, but I sincerely wish you and your daughter all the best.

Mick

Hi  Rosebud, You sound like a lovely mum......I think we all need some one when we are ill and you are your daughters rock but maybe she has come to depend on you too much. Often depression and disability go together i have been unwell for a few years and its severely affected my mobility, but by far the hardest thing to deal with was the depression i felt as if id completely lost my confidence and that effected friendships too,  because i had to rely on carers that made me even more sad, the biggest change came for me after going for cognitive behaviour therapy, at first i didn't feel i needed it but i'm so glad that i had it i still have down days but i feel a lot better now and have even started doing voluntary work.....which has been amazing, iv'e met loads of new people and no longer feel isolated or completely useless. One other thing which helped me was getting a dog, he's actually trained as an assistance dog.....but i'm sure having a pet dog or cat would really help with the positive endorphins, many of the people on the forum say its helped them.

Michelle x

hi rosebud,

so you're still stuck on what to do.

so sorry because my son had a nervous breakdown in december and he stays home all the time so i know how you feel.

i really do recommend the ms therapy centres.

best wishes to you and to your daughter

carole x

Thank you all for being so kind and helpful. I really feel bad about moaning when it is my daughter who is the one that has to cope day to day..  I am sure it is my frustration  that is making things worse and also the guilt when I believe she is not completely truthful with me.

I know that she needs help and CBT would be good but she just does not want to commit to anything it is almost as if she doesnt really want to get better. That may sound heartless but there are many people that are so scared of failing that they dont even make an attempt to try.

Mick I hear what you say and will make sure she just has to do more. My cousin is coming to stay for a few days so perhaps then is the time to make myself scarce.

Carole , I am so sorry to hear about your son,  how is he doing? Hopefully he is getting the help he needs

Michelle, we do have a lovely cat but my daughter isnt remotely interested. Infact the cat can sense this and avoids her!

Quite a while since I posted . These last few months have been quite a roller coaster ride. Can't say things have really improved and  maybe have possibly got worse.  My daughter seems to be getting weaker more from being sedentary than the MS but I don't seem to be able to get through to her.  The physio has told me that she can do,more than she thinks but doesn't seem to want to move forward .

i know that I have probably not helped the situation by doing too much but I am at a complete loss. If I try and talk things over with her she just ignores me. She desperately needs help with her mental state and all the reports say she needs regular psychotherapy  sessions  however she only does this once in a while and often cancels. I  do try and suggest things that may help ( I try not to nag)  then I am not being listened to so then when things go wrong I am the one having to pick up the pieces !

i know that things can't go on like this  but I feel that I am hitting a brick wall. I can't contact her MS nurse or GP or neurologist as she is an adult and wont give her permission.

I have been seeing a counsellor myself which has helped a bit but quite honestly just being told I should look after myself is something I know already. It is actually more helpful to post on here and get advice from people who really understand. Even writing this is a relief !!

This was supposed to be a short update not a long rant so I do apologise !

Eeeeh love! I dont know what to say!

I didnt want to leave your update unanswered, but the only bit of advice I can offer, is to try to speak to your GP or daughter`s MS nurse...even though you havent got your girl`s permission to do so.

If you think her main problem is changing to her mental state, then perhaps this will give you the permission, to speak to medics about her.

I fee sorry for you, you must be at your wits end.

pollsx

I have MS

I agree with Poll, you should be OK to speak with your GP because this is affecting your health. As for speaking with your daughters MS nurse (I am clearly in no position based on knowledge of all circumstances) I would like to think that with your daughters interests at heart you should be able to share your knowledge to enable the nurse to help your daughter. I am sure that I am being simplistic (I apologise) but to me it would only be a problem if any conversation with the nurse were to have a negative impact on your daughter, the nurse , you or the NHS.

I wish you and your daughter the best and hope that things are able to improve.

Good luck

Mick

I recently found the e mail  address for the MS nurse and sent her a message, but never got a reply.  I also e-mailed her neurologist voicing my concerns and received a reply just stating that due to patient confidentiality he could not communicate with me. But would speak to me if I came to her next appointment - have no idea when that will be!!

As far as the GP is concerned he is away for 6 months and they just have locums who dont know either of us.  So you see it is sort of a dead end.

I just have to stand back I suppose and hope that she keeps up her sessions with the psychologists.  What is worrying me more is that I  am not sure how long I can continue to care for her as this house is not suitable for someone with walking difficulties on the other hand I cant very well  just leave her !  She rarely leaves her room  and is just getting weaker  blaming it all on her MS rather than her unwillingness to keep active.    In the last year she has only left the house for appointments and does not allow any of her friends to visit  . Every day there seems to be another symptom, I cant believe she  relapses  every few days -  so I am presuming most of this is down to stress which makes everything worse.

The phrase "caught between a rock and a hard place" comes to mind.  However I wont give up !

Thank you so much for your kind replies.

 

 

 

hi rosebud

i have just read the last few posts and see that your daughter is getting physically weaker.

just a thought but why not contact a local gym, ask about memberships and is they have any offers on.

talk about your daughter's situation. you never know they might come up with something.

so if you got 2 memberships, could you plead with your daughter to go with you, saying you don't have the confidence (little white fibs are ok).

your gp may be able to refer you to the gym, there is some scheme for that but i don't know the name of it).

my son is ok. his confidence and sense of security are slowly coming back.

hubby and other son get impatient with him but i stand his corner.

wishing you both all the very best.

carole x

Have you ever thought that maybe her ms is that bad that she can't help it.

 I have had ms 25 yrs now and people still think i can  make myself better by trying harder.i was always a very strong person and could cope with everything life threw at me and people admired the way i coped  BUT now i am too ill to even get up most days, i am made to feel it is because I don't try hard enough.

My ms affects my mind too these days and no matter how hard i try there is sod all i can do about it.I can see how the ms has changed me too and it hurts like hell that there is nothing i can do about it.

sometimes we just have to accept just how ill it can make us.

Hi mrs J

Hope you are doing well and sorry it has been almost a year before replying ! I do get what you say but she can do a lot more than she admits apart when the fatigue hits and of course the hot Summer didn't help ! She just chooses not to do anything at all.   I know it sounds strange but it is as though  she is quite comfortable being looked after and just laying in bed watching TV 24/7

here is an update.. A lot has happened this year..my daughter moved back to her own flat with a Carer coming twice a day. and me popping over 3/4 times a week . She is now in a wheelchair which is sad but safer than falling . It is doubly sad because the physios have said she would be still walking if she had listened 2 years ago and kept moving rather than lie in bed all day.. So regrettably it is mainly down to muscle atrophy .

After knocking my head against a brick wall I do realise that I can't change her. She suffers from anxiety attacks and has to have everything the same each day which I presume is a control /ocd issue.  If something is just slightly different then she has a melt down. A little bit like the terrible twos !

Her sister has only come to visit her from Scotland twice  this year but was made to,feel most unwelcome. She tries to message her or chat at least  once a week but never receives any replies .

 

So we are all very frustrated and do not know what to,do,for the best. She should speak with a counsellor  but point blank refuses. She has a great deal of support from people wanting to help but just isolates herself completely. In fact the only time she goes out at all is for appointments! Which is not that often.   

I really don't know what I should do anymore. She knows that we love her and are here for her but makes such poor decisions and behaves really badly at times. Most carers do not stay more than a few months because of her behaviour and even though I love her I am fed up "picking up the pieces" when things go wrong.    Also my saving are running out quickly having to pay for daily care.  I have asked my daughter to contact Social  Services  but again she refuses and they won't speak to me without her permission which she won't give !!

I feel really at my wits end so any suggestions would be very welcome.

 

Wishing  everyone one a happy and healthy New Year and may 2019 be calm for all.

 

 

I have MS

Hi Rosebud

I've just read all through your posts and the various replies you’ve had. I can’t come up with any useful suggestions for a change in direction except one. Write to her. Tell her in writing how much she worries you. Explain that your money’s running out and if she needs careers, she’ll need to contact social services for a care assessment and financial assessment. Tell her that regardless of her mental state she needs to start taking a bit of responsibility for her own care. 

Tell her how much you love her and how worried you are all the time about the care she needs and her mental state being such that she’s not taking enough notice of how ill and disabled she could become if she fails to attend to it (ie counselling sessions).  And also that she is treating the people in her life rather badly. Her paid carers as well as you and her sister who love her. 

If she doesn’t help herself by taking some responsibility, try leaving her alone for a week if you can, see what happens. I can’t help but feel that as an adult, she may have mental health issues as well as physical problems, but we all need to take responsibility for ourselves. And it does you no good to worry yourself to illness by her, let’s face it, selfishness. 

I do hope that you can find some way of making a change in your lives. It’s been going on for too long that you have been sacrificing yourself for her. 

Sue

Hi Sue

Thank you for your advice. I am sure you are right in that she needs to take some responsibility for health and wellness. I do appreciate that it must be hell to have ones life turned upside down but I feel that she has somewhat just given up and seems to find avoiding doing anything the best route. 

I am taking on board what you suggest about letting her just get on with it and have also voiced my concerns around ongoing care. So will see what happens over the next few weeks.

yes I do believe that there are mental health issues as well but If she doesn't agree to continue with a counsellor/ psychologist there is not a lot anyone can do. 

As a Carer and parent I am in awe of  how people manage to cope with this insidious condition. I have talked with my daughter about taking small steps forward and trying to take things day by day but I suppose no one really listens to their parents !!!!

Hope to come back here in a few weeks to report progress

 

Rosebud