PLEASE HELP....need some advice

Replies

By Husband Of Depression Sufferer

Re: PLEASE HELP....need some advice
Tue 24 Jun 2008 12:16

Hi Angel

First all please know that I and most of the others on this site
sympathise with your situation and you are amongst friends.

My gut feeling is dont worry about the school or the Police.I'm sure if they read a letter like the one you've just written, they will understand..In fact I cant imagine anyone not being totally sympathtic to your situation having read the above.

It sounds like you're having to cope with an awful lot on your own.
I think the long term solution is to push for more professional help.I don't know much about MS but given the age of your children I'd have thought there'd be some kind of help avaialble you assist your overall situation.

I'm sure others will respond in due course with more/better advice.
In the mean time i'm here if you need a chat.

Love
Rob
xx

By coffee

Re: PLEASE HELP....need some advice
Tue 24 Jun 2008 12:17

Hi Angel you do sound so distressed you need help so get in touch with your M S society A S A P there website is www.mssociety.org.uk

And their officers are MS Society national offices.

England
MS Society
MS National Centre
372 Edgware Road
London
NW2 6ND

Tel: 020 8438 0700
Fax: 020 8438 0701

Email us using this online form
Scotland
National Office
Ratho Park
88 Glasgow Road
Ratho Station
Newbridge
EH28 8PP

Tel: 0131 335 4050
Fax: 0131 335 4051
Wales
Multiple Sclerosis Society Wales/Cymru
Temple Court
Cathedral Road
Cardiff
CF11 9HA

Tel: 029 2078 6676
Fax: 029 2078 6677
Northern Ireland
The Resource Centre
34 Annadale Avenue
Belfast
BT7 3JJ

Tel: 02890 802 802 as the school they should be more understanding either report them to your local education oR www.direct.gov .
LET ME KNOW HOW YOU GET On
all the best coffee

By polly56

Re: PLEASE HELP....need some advice
Tue 24 Jun 2008 19:09

Hi Angel,
You need a lot of support, I was looking on the site to see if anyone can help me look for some funding to help my husband and me convert a garage into a dialysis room, but after reading your story It does not seem important, I feel very selfish even thinking about it. I would copy the letter you wrote and send it to the school, my daughter had a problem with my grandaughters school and had much the same response from the headmaster and the attendence officer, I only live just across the road from the school and there is a lot of children alot worse than my grandchild, I think the teachers etc pick on the easy targets and leave the ones that answer back alone. Have you been in touch with your local CAB office to see if they have got any support groups that can help you.
Good luck I will be thinking of you all Please dont worry about the police the circumstances are much different.

By lucyjad

Re: PLEASE HELP....need some advice
Wed 25 Jun 2008 15:04

Have you thought about contacting the LEA, they may be able to arrange a taxi to take your boys to school. If the LEA are no help seek the advice of a children and families social worker, you can self-refer.
I can't believe that they can be so unhelpful when you are in a difficult enough position already. It's disgusting the way carers are treated.
If you still don't receive any support then it would prob be a good idea to contact your MP, I have actually found this useful in the past.

Best of Luck
xxx

By angel8931

Re: PLEASE HELP....need some advice
Wed 25 Jun 2008 16:43

WOW!!!!!
Hi Everyone,
Thank you so very much for all of your kind words and support! If Im honest i have been really worried about checking to see if anyone had replied because I was terrified Id be told that I was being selfish and that I was the one in the wrong! The relief Im feeling right now after seeing what lovely and helpful things you have all said, is overwhelming!
There is such alot of advice and information for me to look into,thank you all. I will get looking as soon as I get 5mins.
With regards to the school seemingly picking on those that dont answer back, you are so right. Lately my self confidence has totally dissapeared and Im so emotional that when I try and defend myself in situations like with the school I just end up crying uncontrolably and make a fool of myself!
Polly56 you are in no way being selfish looking into financial help for converting your garage , please dont think that the help you need is in any way less important than the help we need. You care for someone, and want to make things better for them....that is the most unselfish thing in the world! Thank you for taking the time to offer your support xxx
Lucyjad I have actually written to my mp recently with regards to the oyster card and some probs my daughter has been having on the buses, and she has been very helpful, so I think I will contact her about this too! I will also look into the other help you have suggested. Thank you xxx
Coffee I have looked at the MS Society website quite alot but never contacted them. As with me joining this site, I just find it difficult to talk about how I feel. If that makes sense? So I tend to read about everyone else and not say anything myself. However all of your posative messages have boosted my confidence and I will definatly get onto them. Thank you xxx
Rob Thank you for your support and understanding. Also for your offer of a chat if and when I need to talk! Thank You xxx I cant put into words what your replies have done for me. I no longer feel asthough im the one in the wrong and I dont feel so guilty.
It is hard when the only other adult in the house that I can really talk to about the way I feel is the person I care for. I cant really tell him how bad I feel because I make him feel guilty, and then I feel guilty, LOL, its just a vicious circle.
No doubt I will be back telling you all about something else thats worrying me. As I am sure you may have already guessed that the probs with the school is just the tip of the iceburg. Dont get me wrong though, I do have good rewarding days, and my kids brighten each day all in their own special way. They are good kids and I feel blessed for having them.
I wish you and yours well and hope to speak with you all again soon.
Take Care
Angel xxx

By debzsanderson

Re: PLEASE HELP....need some advice
Wed 25 Jun 2008 18:04

hello Angel i I am a fulltime carer for my partner who has SP MS. We "managed" until quite recently but when things got really bad I called in the MS Nurse who got us a social worker who told us to apply for Direct Payment. This is extra to any other benefits you might already get and you get use it for help with care or almost anyhting not available on the NHS. We are saving it to get an adjustamatic bed but we also pay for Marks sister to come in one day a week to give me a day off to go out and just have some "me" time. I feel guilty going out and relaxing but I know I am a better person for a few hours break. You could have a carer in the morning time so your husband is cared for while you get your children to school.I have a monthly phone call from the carers association which is helpful if I have any questions - if they dont know the answer they find someone who does!! We dont have children and I cant imagine how much harder life must be with caring for there needs as well. I wish you well and hope things settle down soon.

Debz xx

By loopy

Re: PLEASE HELP....need some advice
Wed 25 Jun 2008 18:36

first of all let me say what a wonderful person you truely are. How dare anyone leave a message like that on your phone!! If i were you, i would make an appointment with the headteacher and go in and tell her EVERYTHING, WARTS AND ALL, about your partners condition. Dont hold back with anything, even the bedwetting. Then get on to your local citizens advice bureau and ask if there is any respite that you can have for yourself and your partner. Shout loud and long for a carer for your partner to come and help you. You can get night carers too i am sure. You are not going to jail girl and neither are you going to get a huge fine!! But you MUST tell the head EVERYTHING. If she has anything about her, she will help you. Secondly, get yourself down the docs and pour your heart out to them. You need help too . The docs may even be able to arrange something or somewhere for your partner to go and you can have some respite. Has your partner not got any family that can help out somewhere? You cant do all this on your own cos you are going to make yourself ill and then you will be no use to anyone!
take care

By katew

Re: PLEASE HELP....need some advice
Wed 25 Jun 2008 19:24

hi there

as a carer to my oh with ppms i can tell you now that i fully understand what you are going through. first you must get in touch with the ms nurse attached to either your hospital or gp surgery and tell them the problems you are having.

make an appointment to see your sons school and perhaps ask your mom to go with you to explain the situation at home. it was the first thing i did when oh was diagnosed.

believe me (ive worked in a school until recently) they dont want to tak your kids off you they want to help. also try looking up a group called spurgeons as they help with the kids.

any problems please dont feel afraid to speak to anyone here. thay are all great .

hope this helps

kate

By angel8931

Re: PLEASE HELP....need some advice
Thu 26 Jun 2008 01:40

Hi All

Firstly ooops!!! sorry for posting twice! I have no idea how that happened????

Thank you all so much, you are all so kind and positive, Ive had the best day ive had for ages, all thanks to your support. Unfortunatly i havnt had a chance to look at any of the web sites or look up any of the organisations suggested as yet, I havnt stopped today. 12:30am and I have just sat down!

My partners family live 300 miles away and cant do to much from there. Me I just have my mum and 93yr old nan that live near, and I dont know if i mentioned in my first post but my mum just adds to my problems and stress! She doesnt understand MS at all and what we all know to be fatigue she thinks in being lazy! Also my partner tends not to be big on conversations, and spends day and night locked away from the world in our bedroom, my mum sees that as being rude! Plus since we moved I have borrowed money from her and cant afford to pay her back yet, so shes on at me all the time about that! I cant blame her i guess, but i just dont have enough money for us let alone anything else. So she wouldnt be much help at the school. Does anyone know wether the ms society send out information for family members, if she see's it in black and white from someone who knows then she may start to see what we are really going through??? Plus it must be hard for a mum to see their child going downhill, I look older than her, and I dont have the time i used to have to go out shopping and stuff like that with her! I do agree with her that my partner spends too much time in the bedroom, its not doing him any good. He is still able to walk, and I think he should try and keep mobile a little just so his muscles dont waste away, but theres just no talking to him sometimes and he says im nagging. Thats all he thinks I do these days. We seem to argue so much, and he sulks and gives me the silent treatment for days on end, but hey I dont blame him, it must be hard for him and im the only one he can take it out on!
Now as for having a carer come in and help, and with the Direct Payment, I had been led to believe that my partner wasnt "bad enough" to need more help, and the same goes with the direct payments. We were told that he practically had to be at the stage where he couldnt do anything for himself at all !!!! We would both benefit from an adjustable bed, and I really need a bath fitted, and any extra cash we could save up to pay for these would be fantastic. However honestly we were told that his disabilities wernt bad enough! I have read about it but it all sounds way to confusing and like it entails alot of paperwork! Mind you at the moment my head is so messed up, writing a shopping list is difficult right now LOL!
Also yes I do need to see a doctor! But when we moved here at some point after that the practise decided we were on the wrong side of a hill and that we could no longer be their patients and they struck us off a week later! So I now have to go find us a new docs, ones that know nothing about us or our past!! Its just such a pain!
Oh i almost forgot, the most important thing...I finally wrote a letter to the head teacher telling her everything warts n all. Also I hope no-one minds but i started the letter by saying "Dear Mrs Smith, after seeking advice from people at carers.org, I decided to write this letter and try to explain why it has been difficult getting the boys into school on time." I carried on by pretty much listing my daily routine and went into more detail when listing the night time routine. I also explained how the attendance officer has made me feel, and ended it by saying that i wasnt looking for sympathy and i dont want anyone feeling sorry for me. I just would appreciate some understanding and compassion whilst things are difficult, and that I was looking into getting some help,but it wont happen over night! I must admit though, after i handed it in at the office I started to panic and wanted to ask for it back. I guess i feel like if i tell people i cant cope too well, they might think im not capable of looking after my kids!! If I lost my kids, id die! I didnt ask for it back though, i just ran out and cried my eyes out when i got in the car! :)
What a wally
I wish i could go somewhere and see someone who knows everything,and they could call the right people and give me the right forms and so on. I dont even have a home phone because we couldnt afford the bills, so I have to either spend a fortune using the mobile, or beg my mum to let me use her phone!
Oh my i am so Sorry iv been going on and on. :)
One last thing, kate, loopy, and debz, thank you so much for everything youve said, it all means so much and its very much appreciated.
Hugs to you all, Angel xxx

By angel8931

Re: PLEASE HELP....need some advice
Thu 26 Jun 2008 02:45

SORRY SORRY, Just thought of a couple of things.
Would it make a difference that i am not my partners registered carer, obviously this being because i am registered as my sons carer? With regards to any help i ask for etc. Also is there anyone that helps with holiday costs? This whole family, especially the kids are in need of some TLC,in the form of sun, sea, and sand.

Angel xxx