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Attitudes and mixed messages

C

carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
My daughter has recently been diagonosed with "possible CD", She has been in hospital for nearly 3 months now she is 21 years old.
She has been passed from pillar to post not only in this 3 months but for years leading up to what has now become according to the "specialists" have CD. She has had years of "Fits, blackouts" and been diagnosed with "postural hypertention", sometimes as many as 5 a day and then goes to 3 a week.
She has been offered counciling in the past, but has not had very good experiences. In April she had some kind of transient fit, I was there with her and so were two paramedics and she really was not well. She was observed in resus in A and E for 30 mins. But then recovered fairly well, and once mentioned that she had these "fits like this often" but had been told they were due to hypertention, was immediately told to go back to the GP for a referal back to the neurologist.
During the time of the transcient fit she had pins and needles down her face, her speech was quite and slurred and she had pins and needles in her right arm and leg.
Having rested 24 hours after the episode at the A and E, I expected her to be better, but she wasn't, it appeared later that day she lost all use in her right arm, it would not move at all and it was very cold and appeared to have poor circulation. This was also happening to her leg but she could drag it.
Within two days her foot had turned in and it looked like she had a stroke although by then her face and speech was back, but some discussions were not as they could have been. Words were a bit mixed up in some places.
She was admitted to hospital after quite a push, and she has been there since early May.
She has been told she will need physio to walk again and she will also need counselling. and has been told that she must accept that she needs both!
She has recently refused to see the Psychiatrist having had two sessions with him because he has offended her by insisting that she has probably been raped or sexually abused, as this is usually the case with people like this! My daughter is adament no sexual abuse has occured. I beleive her, as I know her whole life we as a family have had trauma after trauma, with two other children that have disabilities and I beleive that the last two traumatic bereavments that happened 18 months ago are behind some of this!
Things started to get out of hand at the hospital and so we requested a Multi discipline Team meeting.
One doctor/ nurse Physio or OT said one thing and then another would say another!
My daughter has been so co-operative and wants to fully recover, but it was all getting out of hand and she just couldn't cope with so many people telling her so many different things!
From this she got a referal to a Neuro Physio who works closely with the ward physio, setting tasks and for her to do daily and then he comes to assess her weekly, this was working well. The Physio has now started doing just alternate days!
She was told that she needed to also have counselling and has agreed to work with the Psycs team but doesn't want to work with him. (He still feels she is hiding something!) This appointment as been set up as an outpatient, so has had to be delayed becasue she is still an in patient!

She lived independently in a flat that is not accessible it has lots of concrete steps outdoors to get in to it and the whole community is on a very steep hill.
Now my daughter uses a manual wheelchair for getting out and has lost the centre line of balance so cannot bend in a sitting position without falling over, there is no way she is going to be safe on those steps or able to get out independently.
She now has a social worker who has linked in with an OT who has declared the flat unsafe and yet to get things moving she now has to wait for the consultant Psychiatris to come off annual leave to write a letter to the council to get her moved.
We have now been informed this could take up to 6 months for the whole process to go through and for the move to happen. My house is totally unaccessible and if she came home then she would officially have a place to stay so rehousing would not happen.
Apparently if she was over 50 there would be an easier solution!!!
:confused:
I am so frustrated that she is between a rock and a hard place, she has also started to withdraw, not speak, shout at me angrily! I suggest something to her and she tells me to butt out, then she asks me to help her get out of there I sart to support her and chase things up, and social workers and doctors all liase with her because she is 21 and not a child anymore, which I totally respect, but there are some days lately she hasn't got a clue what planet she is on!
Every day she is having difficulty making simple choices such as what she wants for dinner, let alone making choices about where she wants to live and how she is going to do it. :(
Whilst I want my daughter to own control of what happens to her without sounding like a neurotic Mother I want that to be right for her but also for all of us. After all its usually us her parents that support her in time of need!
Its almost! from staff when they want to get a point across "its my daughters decison that counts" but when that goes wrong then it appears to be "Mums" job to pick up the pieces.
For instance, the social worker has explained all about the benefits my daughter can claim she has signposted her to them. It is now down to my daughter to ensure the forms are done, (Remember she can't right now as her right hand isn't working!) Oh yes we can ring the number on the form and ask for help to complete it! Oh but then she is in hospital and only has her mobile phone!! :mad:
My daughter and I in the past have had a very good relationship with ups and downs no more than any other parent and daughter. She is totally depressed at the moment and is continuously angry and snappy. I totally understand what she says some days she doesn't mean, but have told her that I am not going to keep putting up with her anger at me, as I don't think it is acceptable. I deserve more respect than that! and she can't keep pushing me away and then wanting me to help and pick up the pieces. But then I am the one that feels so guilty!
I love my daughter, and she knows it, but this situation is tearing us both apart. Since the Psych has diagnosed her with CD, some of the hospital staff attitudes have changed!
My daughter can not use her right arm at all and drags her foot when walking and cannot move her right leg without support, she can only do 10 steps before she falls this is after going round in circles and falling.
Some attitudes appear to be "she is doing it on purpose!"
The only help she asks of them is, undo her bra at night and put cream on her left arm and side for her eczema, in a morning, she asks to be assisted in and out of the shower (Its not accessible) then she asks for support in drying her left side, putting cream on and fastening her bra and doing her hair.
Everything else through out the day she does her self.

They are now telling her that she will have to manage on her own as she needs to learn to be independent if she is going to live on her own!

The Social worker has already told my daughter what she will need when she leaves hospital and has been kind enough to sign post her to the right forms for benefits, think she may have forgot that my daughter has lost the use in her Right hand!!!! So physical support of form filling is needed.

My daughter has already planned to have a carer to support in the morning!
Is it really ever likely she is going to recover fully? particularly when there are no systems in place to support appropriately.

We cannot be refferred to the clinic in London, as she is still in hospital! so no other referals can be made until she is out and able to go to her GP.

Any suggestions ideas how we get the message across to staff that CD is a
condition worthy of humane support? :rolleyes:
I came across a very interesting website by the way called www.neurosymptoms.org this site really explains some of the symptoms of functional weakness really well.
I have already taken leaflets to some of the staff and will say that even the Pysch thought it was good. But they were about "Functional weakness" as soon as you say CD" attitudes change drastically!

Sorry its a long one! but just wondered if anyone else had CD as severe as my daughter appears to have it! as you can see I am not totally convinced she has that! Her GP thinks its MS by the way!
But as the Physc says "This is the best fit!"
I have read every thread on this forum and each one is different, its a great site to help you feel you are not the only one going through it!
Anyone dealt with anger and frustration in a positive way?
:grouphug:
Many thanks
 
E

eagle6764

Member
Joined
Jul 18, 2009
Messages
9
Location
West Clare, Republic of Ireland
All too common.

This is a story that could be written by 10,000 people all about different subjects. It just reaffirms what we all know. Whether people admit it or not public and professional opinions are automatically set against people like your daughter. I've had epilepsy since I was 10 and I didn't find out till I was 17. I took a turn is what my own parents would tell me.

The only thing I can suggest that I have found to be useful it to seek some kind of advocate, a person who can work and be listened to by health professionals and not be so easily ignored as you and your daughter seem to be, but may also be able to work with your daughter in cementing a more constructive relationship with you.

I don't know where you are to know whether this is even possible but I wish you all the best - contact me anytime and if i can help i will.:)
 
C

carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
Thanks for your response, guess I was venting a little frustration when I wrote that this afternoon, but you are absolutely right! thousands of people could tell a similar story I am sure.
Sorry to hear they took so long in diagnosing Epilepsy with you.
I am pretty certain that my daughters "episodes" are that of an epilectic nature" but will never get listend to becasue I am just the parent!
Thats one thing why I am so frustrated about this whole scenario, I though CD was only supposed to be disagnosed when all other tests had been ruled out.
The EEG is still pending due to being made for an outpatient appointment! so we will see.

My first thoughts of my daughters diagnosis, was that she had a fit and it had left her with this disabling condition, but it appears possibly not, becasue the scan is clear and there is no brain damage.

I am in England, so things slightly different here. but thanks for your response, it feels better knowing someone has at least understood!

best wishes.
:clap:
 
E

eagle6764

Member
Joined
Jul 18, 2009
Messages
9
Location
West Clare, Republic of Ireland
Venting frustration

Thanks for your message.

2 things:

1st) If there is nothing on the scan then you should do things, when they do the EEG, make sure they do a 24 hour one, that would tell them a lot more about the pattern of your daughters attacks and may lead them somewhere that they hadn't thought of. It is not pleasant for the person having it done, I had one done in the Maudsley Hospital in London which is where I am from and it's tedious. Don't let them fob you off with a standard one.

2nd) Again, if there is nothing on the scan then that tends to point to something similar to meningitis or that family of illnesses, unless you have reason to believe that your daughter banged her head badly but that would show on a scan. The other thing is that traumas that your family suffered can affect different people in different ways - some people take stress related fits. Is it inconceivable that your daughters problems with her arm and leg are due to that or even and i know this sounds crazy but has anyone ever suggested that she took a stroke?

This is all guess work on my part - some of it anyway, but whatever - keep venting your frustration there's nothing worse than not being heard or understood, hang in there, I've been through a lot of what you described and it's hard but mental strength is half the battle.

Good luck and keep in touch.

John.:)
 
C

carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
Hi John,
Gosh you are quick in replying and thanks again for the advice on the EEG, she has had the heart monitors and the turntable test which showed postural hypertention, but my dispute with them is that sometimes they are faints and she can carry on afterwards and sometimes to me they look more epileptic, where she is totally out of it, slightly disorientated, often a little argumentative a few hours before, at first I thought this may be PMT but then I noticed a pattern forming and she would get quite fussy! nothing seemed right kind of fussy, also fidgetty, then she would have what I would term as an "episode", following those kind she would come round a little dazed and confused and then be quite tired and be better after a sleep, those kind tend to be approx once a month where as the others we were probably seeing up to 5 -10 a month. Very often worse prior to menstruation. My dispute for years now has been could she have both? epilepsy and Postural hypertention?
As for the stroke my husband works in the medical profession, and I work with disabled people in education and he was fairly adamant she had a stroke, the only thing that doesn't fit, is that the although the she had pins in needles in her right side she could at the time move them after a few hours but then further weakness/paralysis came on gradual over 48 hours and her speech and face tingling came back within a few hours!
But can you believe it took 5 days for them to actually take any blood?
Bearing in mind she had only flew back from america 5 days previously, which was also the week they announced the swin flu was in Mexico!

As for the family trauma's yes I agree, stress can casue all kinds of difficulties for different people particularly with the last two they were two very special people and sadly missed, and one of them tragically and suddenly killed, she hit rock bottom when it happenened, she became agrophobic and was diagnosed with ocd, and put on medication, it took 6 months to get her out of her flat. Even then that was down to strategies I supported her with on simple goal setting, although to be fair her GP was very understanding and did support too.
But the bit I don't get and to me doesn't fit CD is that for the last 6 months she has been the happiest person alive, she worked hard to get her life back on track, and we worked hard at having a purpose for each day, she set herself a really difficult goal of going to america to stay with some friends. She did this, flew out there all alone and came back and was on top of the world, 3 days later got a cold, high temp, seemed to have a bit of cold virus, complained of headache, then 2 days later, became very argumentative just over how much milk was in her tea! had this massive transient fit, totally out of it for 10 mins and then all this.

I cannot comprehend if its CD, how she could have appeared so well, and then this happens and they say the nearest fit to it is CD, from everything I have read I just cannot piece it together, and with the way she is being treated I feel I must at least try to piece it together cos if I can make sense of it, maybe I can help her make sense of it and then she can get better.

At first we were told, it appeared she had a virus, possibly a fit and the part of the nervous system that controls the right side has switched off.
Which in essence appeared sense. All staff on the ward where she is have been pretty superb until lately when the Psyc has now stated in her notes possibly CD, and now all of a sudden some attitudes are changing, when in fact nothing within her condition has really changed!

Thanks again
C
:)
 
E

eagle6764

Member
Joined
Jul 18, 2009
Messages
9
Location
West Clare, Republic of Ireland
What a Mess

You know it's no wonder you're in such a state, there seems to be a total lack of co-ordination more so than even your first post indicated, I suspect you are right in your instincts you know, and you should trust those. It is extremely common to be bad tempered or irritable before a fit and certainly to need to sleep after one.

You have been through this from day one and probably learned as much as it is possible to about your daughters condition. I think your best best is to follow your instincts and not let people dismiss your opinion, personally I wish I was there when you were talking to some of these people to remind them that they are not meeting their duty of care to their patient. Let's face it, the bottom line is that your daughter could be suffering from a combination of maladies and there has been too much "could be this", and "could be that", fed to you as you mentioned and that in the 21st Century is just not good enough.

Be Pro-actgive, follow your instincts, trust yourself, and give them Hell.

You and your daughter - the whole family deserve better. You can make sure you get the treatment your daughter deserves and the proper attention to detail that should accompany it.

All the best

John(y)
 
J

jornacam

Member
Joined
Jun 26, 2009
Messages
20
Location
N.E. Scotland
Dearest C, The thing that sticks in my craw so to speak, is the 'best fit' diagnosis, There are a whole list of criteria to qualify as CD.
You quite correctly said that medical tests should be completed first, until then, no firm diagnosis can be made. The stroke is unlikely unless the scan showed bleeding, or with contrast a thrombosis (clot). The brain has many areas which can be damaged and then affect subsequent functions as they are intterlinked and close packed.
I feel for you and your Daughter, i too took out my frustrations on those closest to me. Its hard to handle when your body wont work for whatever reason, Its scary, frustrating and annoying. That is doubled when you have no answer as to why and people are guessing, we expect that since they can get man to the moon and grow body parts in labs, that really someone should know what going on. I had many oppinions. In the end i didnt care what anyone said as it didnt alter how i was feeling or my prognosis.
I had many things in place to help with day today activities, i had help from my friends and neighbours. I still rub people up the wrong way but i really dont mean to hurt them. If the proffesionals are all a bunch of idiots that dont use thier ears then who else should she turn too? She has to vent or she would probably end up in a worse state. Try not to take it to heart.
Whatever happens she is still youre wee girl!!
Good luck to you both
S:clap:
 
C

carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
"My wee girl"

Thanks S
I totally understand that my daughter doesn't mean the things that she says and that she needs someone to be angry at, and in a way I am pretty pleased that she is showing this, I see it as a positive sign as she isn't bottling it up.
But it doesn't help knowing that the situation she is in may not change for a while doue to the housing situation and her not being able to leave hospital at the moment, and I am concerned that if she just keeps on getting more and more stressed then something else may happen. She is already having spasms on her left side, if she is startled or moves quickly!
I have given her some space over the last couple of days (at her request)and have not gone to see her, but not sure if I am doing the right thing or not!
If no-ones there she just sleeps and cuts herself off from everyone.
If I am there she just vents out and has a go.
I am seeing her later today and the texts messages going back and fro look a bit calmer than last week! So here's hoping.
The latest is that the Psyc thinks she needs anger managment sessions now!
They are not understanding that alot of what is happenning now with her anxiety and stress levels is due to "their systems" and there is no flexibility". But like you say the physical symptoms are just the same as they would be with any other diagnosis.
She also now has an appointment as an outpatient at the Mental health clinic next week and they will finally take her as an in patient.
Such a shame she has had to start being loud and verbally aggressive to get what she has a right too don't you think!
So we may get somewhere with a therapist! or not! just depends how they are I guess, and how she is on the day. hey ho.
Thanks for your response. I love the " She is still you're wee girl" bit.
She is that even though she is 21 and I love every bit of her!
thanks
C:grouphug:
 
C

carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
Another tangled web we have weaved!

Since the last post on here:
My daughter has been declined a blue badge by the local council due to not claiming the higher rate of mobility DLA. Which she can't claim until she can show what support she needs, and she won't know that until she is at home.

Had another run in with the psychiatrist who has cancelled her out patient appointment as she is still an in patient, despite the fact that he reffered her for it.

Been told she cannot not claim housing and council tax benefit due to the fact she has no intention of returning to her current home.
This is becasue they cannot rehouse her until something comes up as her flat is accessed by 9 concrete steps, a little difficult when you have a wheelchair, and only your left arm and leg to get you up and down them!

Also been handed over by the social worker from independent living team for people with physical disabilities to Mental health team, but they can't help her because her symptoms are physical.

absolutely manic! we will both need psychiatric help soon if someone somewhere doesn't sort this mess out!

Have now got the support of PALS, so some light at the end of the tunnel, but even she is banging her head against a brick wall!

any suggestions??:confused:
 
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