I have just had a phone call from my daughter’s day centre. They are finding it very difficult to cope with her challenging behaviour and shouting. Apparently it is having an impact on staff and other service users. She is having one to one attention , though not with the same person all day because it is too taxing for one member of staff to be with her all day. They want me to get short term medication for her during her difficult phases.
She is taking long-term medication already and all drugs have side-ettects. I was unaware that she was causing this level of concern for them. I got the impression that if something is not done she might lose her place there.
She goes there for 6 hours a day. She is also often difficult at home and wakes early, screaming sometimes from 3 am.
I hate the thought of her being on yet more drugs, it feels like a chemical cosh. But if they won’t have her I don’t know if I can cope on my own. When I am gone she will have to go into care and they won’t hesitate to use medication then.
I don’t know what to do. It’s awful not having my husband here to discuss it with. We always resisted the pressure to increase her medication, although not refusing it entirely. She is on a low dose because it affected her white cell count.
Since he died 12 weeks ago she has been very confused and demanding. I think this is understandable and have been giving her more attention. Perhaps that is why she is playing up at the centre.
It’s horrible not having a sounding board or support.
Oh Willow this is too big of a decision to take on your own and while you are in such early stages of grief. Would your GP or health visitor ( if they still exist) be willing to talk it through with you and help you decide, with the benefit of professional input?
Sending a big hug 
Hello, a difficult one, if you do nothing she’ll lose her place, how about starting the medication but thinking of it as short term only? If may help you as well if you can get a full night’s sleep and help your son to manage his sister as well.
If she reacts to the medication then you can take her off it, may be wise to see if there are other day centers that could cope with her current escalating needs?
The day centre can’t actually prescribe medication. I don’t even know if a suitable drug exists. I have agreed that they can ask her consultant psychiatrist (it is him that prescribes) if he would be prepared to visit the day centre. I will also attend. They can put their concerns and questions to him directly. When I take her to see him she is always an angel! There doesn’t seem much mileage in me seeing him alone to convey their comments. At least this way they can have their say and hear his response. I get the feeling that they think I am refusing to consider drugs. It is not the case, I am just concerned because she was on a higher dose of her usual meds but it had to be decreased because of side -effects.
To be honest, I am finding things difficult myself right now. It feels like nobody wants her but me. I adore her, until a year before my husband died she didn’t even go to the respite centre. I only agreed to it because we were getting older and thought it only fair to her that she had some experience of other people looking after her, just in case of a disaster. My husband’s sudden death has proved how tenuous life is.
I don’t want her to be so reliant on me that she wouldn’t be able to exist without me. That is what will happen if I don’t try to get her behaviour more controlled.
I rang the social worker for another opinion or some advice but she is on annual leave for another week.
I just miss the voice of reason and support from my husband.
Xx
Yes I understand it’s times like this that we miss our husbands so much, your doing everything right, agreeing to the prescribing person getting involved, do you think he’ll visit the day center though? He may have a talk on the telephone with the senior staff at the day center & again with you & agree a way forward even if it’s just for a temporary time?
At the end of the day maybe go with your gut feeling of what you think is right?
Oh bless you Willow what a dilemma, i know these centres get busy and they have to think off the other,but omg dont they realise what you are going through.
She could just be so confused with all that has happened and doesn’t know how to show her grief .
I hope you find the answers and you get time for you,
If your anything like myself its taking me all my time to get up and showered let alone caring for someone with special needs. My heart goes out to you. Hugs Jo xxx
Thanks Jo. I know she is being a little bugger, but I was hoping that they would cut her a bit of slack. I got upset on the phone, crying, not annoyed. Then she said I couldn’t keep coping with Katie’s behaviour or I would make myself ill.
I phoned my son to see what he thought and he said that he also thinks she needs something to help her. He is in bed with a stomach upset which I knew nothing about.
I seem to be in the minority. Perhaps medication would be helpful, I just don’t feel comfortable with drugging people with learning difficulties in order to make them fit the services available. Especially as they are unable to report how the medication makes them feel.
Sorry, this is not really a bereavement issue.
I just don’t have anyone else to talk to and people on here have become friends.
Xx
How is she when she is at the respite centre?
I am assuming that the day centre and th respite centre are two different centres.
Rose xx
Willow it sounds as thought your darling daughter is causing a problem at the respite centre. The last thing you need is for the, to stop having her there. You have valid reasons for wanting her to keep going. I understand not wanting her to have more medication but you can’t cope with this along with everything else you’re going through at the moment. My thoughts, if they’re of any value, is that perhaps asking her psychologist for his opinion and agreeing to a small or incremental increase in her medication might help. If you find it does work well for you you could ask about reducing it again. I’m sending you a massive hug because I’ve had a miserable day and yet don’t have anything like the problems you have to cope with now. Take care.
She has always had periods of challenging behaviour, interspersed with sociable, happy and cooperative periods. Over the years various strategies have been tried, trying to find triggers. She has been on the pill and depo injections in case it was hormonal, blood tests to check for early menopause, allergy tests, antidepressants, antipsychotics, anticonvulsants, etc. She even had a stay at an Assessment and Treatment Centre. Nobody has ever got to the bottom of it. One Behavioural Psychologist told me that Katie was the only patient she had come across where there were no triggers.
She randomly changes from one mood to the other with no apparent reason, she can turn on a sixpence.
We have had more Behaviour Management Plans than I can count on all my fingers and toes.
There are physical changes too, very cold or hot and clammy, upset tummy, too many to list.
Mostly the respite centre say she is good.
50/50 at the day centre and at home.
Different staff report different behaviours. Whether that is factual or different levels of expectation, or just not wanting to worry me, I don’t know.
If the Consultant decides on the medication route I suppose I will give it a try. It would mean regular blood tests and that means regular doses of Diazepam because she doesn’t cooperate with needles being stuck in her and getting her there on my own would be difficult.
However, I will have to cross that bridge when I get to it. The main thing is that she has a life that is as happy as it can be.
Life isn’t very fair, is it?
Willow I am so sorry you are having to deal with all this on top of your grief.
Your daughter is obviously grieving and needs additional support from the day centre and other services at the moment - not just medication- although that might help calm her - it might be worth a try.
Can I suggest you try get an advocate for either her or you. Whatever is easier to access. They can be there to fight your corner and liase with services and should be available via a local advocacy service. Many of the big charities might be able to help with information on advocacy in your area. They can be a real help when you feel you are on your own fighting a bit for your daughter.
Sending love and hugs xx
hIiya wIllow,She maybe a bugger but she is your bugger, and if the centre cant give you some breathing space in a time like this then shame on them, yes if you and you alone don’t feel its right to give her extra medication then you go for it. But above snything remember you too. You are grieving and its tiring stressful. Hugs Jo xxx
Thank you everyone. She is undoubtedly a little bugger, but you are right, Jo. She is my little bugger! And I love her to bits.
There’s only me now to decide what’s best for her. I will listen to what they all have to say, and make my own mind up.
Thanks for your all your advice and support. It means a lot.
Xx