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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
JeanneA

What to do?

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JeanneA   

Hi, I rang the care home last night and spoke to one of the staff, she said Glen still refuses to go out and has put on 18 lbs in weight recently, that's a lot of weight, which I'm not surprised to hear. He is constantly walking up and down the stairs all day and just wants food. Although they only give him healthy foods one item at a time, i.e. a piece of fruit, a yogurt, that kind of thing he is still going to keep putting on weight because of the amount he is eating especially when he is getting no exercise by staying in all the time.

 

The lady I spoke to is one of the ones that will try to get Glen to do something ie, in the kitchen, preparing a sandwich, something like that and a couple of days ago she was encouraging Glen to do that and he hit out at her. I think Glen is very in control of the whole house, he knows that if he hits out he won't have to do anything and staff will back off of him even more. They don't even have a tv in the lounge now as he won't tolerate anyone watching the t.v. they tried putting it back yesterday and he became very agitated went over to it so they quickly put it away as obviously they don't want him to break a 3rd t.v. ! so you can see their point of view but I don't think that what they are doing is a solution because it is just going to make Glen more and more in control and he has no reason to go out, he gets all he wants in the home. I could really do with some advice as I don't know what to do, whether to raise my concerns with the manager or not. I know why they are doing this because of his psychotic breakdown a few weeks back, I understand they have to think of the other residents so by keeping Glen calm this is their way, but it certainly in my eyes isn't a long term solution.

 

Another thing I was told is this week Glen has been different, he is more 'touchy feely' which he normally isnt at all. He actually asked one member of staff for a 'hug' and she felt it was a sensory thing and she massaged his back which had a calming effect. I did wonder if the touchy/feely was to do with his hormones, being a young man if you see what I mean?

 

I could really do with your thoughts on this please, thank you so much.

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trekster   

Sounds like he's unhappy and something needs to ve done to help. I would approach the care home.

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trekster   

Also consider a weighted blanket for the hugs

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JeanneA   

Thanks trekster, the thing is though he appears very happy, I saw him last week and he was very happy, smiling all the time and relaxed. I'm going to see him again on Sunday as I do want to keep a closer eye on him, what with the weight increase and his general well being.

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He sounds like he has some severe mental health problems. I know someone like that was danger to others too was hearing voices 'witches' she had to go into psychiatric hospital and then had to find a home with 24/7 staff on her own.

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lisac   

Hi Jeanne how is Glen? Has he been to the dentist or had his eyes checked yet? I would think these are the most important things to get done asap so at least you can eliminate pain as a factor for the behaviours. Maybe it hurts Glen to go out as light can have a negative effect on sensitive eyes, just a thought. Hope he has settled more, x

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lorryw   

Hello Jeanne,

Im so sorry Glen is going through a rough patch. If its any consolation we are ( very strangely! going through almost identical issues with our lad.

He had a seizure last August and we withdrew him from his care home. He had never had a seizure before and the hospital consultant felt it was the amount and combination of medication he was being given.

We brought him home and started to look for somewhere new for him to live. This proved very difficult, mainly because Social Services were keen for him to have an individual budget and for us to find services ourselves. He is now 28 and we have tried so many different options, none of which have made him content He was fine for the first 6 weeks and then became aggressive towards us. Looking back I feel this was following the first visit by a social worker.

To cut a long story short he had huge meltdowns everyday and we could no longer cope with him. We asked for help and were told to contact the police! We explained he had autism, severe learning difficulties, non verbal but we were still pointed in the direction of the police.

He is now in a new care home and things are becoming even more fraught. Like Glen he is refusing to wear day clothes (he hides them) and will not go out. He only sleeps every few days and is very aggressive. He used to love his television (he watched cartoons and holiday videos) but turns it straight off and also turns off any television that is on. He has caused considerable damage to the home and they are at a lost as to what to do, as are we.

The medical professionals seem totally out of there depth and he was even discharged by the learning disability nurse a few weeks ago. His GP has visited several times attempting to get a blood test but because he won't co-operate it is still left undone.

We are so sad for him and feel we have let him down but don't know what to do to make things better for him.

 

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JeanneA   

Hi Lorry, I have sent you a private message. Glen is still the same, a dentist is going in today to look at his teeth again. I am convinced that the tooth that needs to be filled is causing him pain, something needs to be done, they keep saying they can't do any treatment outside the surgery and they can't sedate him until he steps into the surgery, but this is urgent, he needs sedating to get him to the surgery as he still won't go out. I am visiting again on Sunday, I went last Sunday also.

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Sally44   

This is an area i've always been concerned about and no GP or medical person is able to give me an answer.

 

Like your sons, mine would not allow anyone to get blood out of him. And he would not sit and let someone give him an injection either. So if he needs work doing, how are they going to do it?

 

He is under the community dentist, and when he had to have a filling he went into the childrens hospital.

 

Even there they were saying that they needed to get a line into him BEFORE they could put the mask over his face. They did give him sedative tablets beforehand, and the numbing cream on his hand. I went with him into the theatre, and I asked the anesthiatist to put the mask over his face at the same time they tried to get a line. Because if he felt any pain he would be up and out of there. And they did do that for me. But I can communicate with my son, and he would cooperate up to the extent of going into hospital and going into theatre.

 

It just is not acceptable for someone, anyone, to be in pain and unable to access services and no-one does anything about it.

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When my younger son broke his arm he would not let anyone with a needle within 20 foot of him. They wanted to operate but he wasn't going to be admitted. What helped? Gas and Air. Ambulances carry it. It does require the person to hold the tube and breathe it in. My son then let the surgeon manipulate and put his arm in plaster. I personally was useless at using it when in labour. The GP should be able to arrange for an ambulance for your son. The dental surgery needs to be accessible though. To be realistic would it be better just to remove the tooth? Also they do have dentists who visit and carry out work. His GP should be organising how this is going to happen.

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JeanneA   

Thanks for your reply, the mobile dentist visited Glen again yesterday. I spoke to a senior member of staff last night and she said they are able to give Glen a little something to get him to the dentist, she didn't say what as she wasn't able to be on the phone too long as she was dealing with Glen at the time. I just this is sorted asap. I had no idea that an ambulance could be called to the home and that they could administer gas and air. I was also told that the dentist could not carry out any dental work outside of the surgery.

 

 

Update: after over 8 weeks of not going out of the care home, with my help :-) we got Glen to the dentist and then last week to the hospital to have one tooth removed and one filled under anesthetic. It all went well. Glen now goes out daily again for drives which is great news, I'm also going quite regularly and go out on a drive with him and a carer, he is much happier in himself with some ups and downs still of course.

Edited by trekster

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oxgirl   

:clap:Fabulous news, Jeanne!! Very well done to you and the team of dedicated staff caring for Glen. :notworthy: He must have been very uncomfortable and I'm so pleased he's feeling better and wanting to go out again. You should be proud of yourself. :)

 

~ Mel ~

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JeanneA   

Thanks Mel, I went out for a drive with Glen and a carer on Tuesday and I visited him yesterday with my other son and daughter. He was very pleased to see us, looked relaxed and smiled. Sat at the table and had a drink & snack then went back upstairs. He is still upstairs a lot. He did have a couple of bad days Wednesday & Thursday, I guess he will always have good and bad days. I'm going again on Tuesday to go out for a drive with Glen. I like having more involvement as I can keep an eye on things as well.

 

Glen has got a large tummy now, I noticed that yesterday, he does eat a lot, which concerns me. They give little and often rather than the normal 3 meals a day. I have raised this issue before but they say it works out better as he keep asking for food so they don't want to give 3 big meals and feel this way of little & often is better for him. Getting back to Glen going out I'm so pleased he is enjoying this again, he's been out most days since I went that time to get him to the dentist. Going out though is the only thing he does in the day, I've suggested various activities that he used to enjoy but they always say he's not interested anyway after throwing all his things out of his room. So I don't know what I can do really regarding that. They say they will introduce out door activities once they feel Glen can cope with other things they are just taking things slowly after what's happened previously.

Edited by JeanneA

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oxgirl   

It sounds like a good plan to take things slowly. They don't want to try putting too much pressure on him and tip him over again. Probably best just to try to be patient and have him get used to going out regularly again. Once he's in a regular pattern of doing that they can start offering other things and build up gradually rather than rushing him and him refusing everything again. As long as he is happy and you are having nice visits that is the main thing. Try not to worry so much.

 

~ Mel ~

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JeanneA   

Hi Mel thanks so much for what you said, I do worry too much I know that but it is hard for me where Glen is concerned bringing up for 17 years we had a close bond even through the very bad times during the last year or so he was at home, so I guess it's hard for me break away so to speak. The staff are always telling me I worry too much! I understand that they have to take things slowly any little thing can upset Glen and they don't won't to go back to how things were which I agree with. I will let you know how my drive goes on Tuesday. :-)

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Sally44   

Glad, and interested, to hear how they sorted out the dental work. Ambulances with gas and air is worth knowing about.

 

I think alot of peoples experience is that something like that would be offered as the very last resort. That means the child/adult on the autistic spectrum has to fail to access what they need [dental work or hospital operation etc] for quite a long time before this would be offered. Often that leaves the child/adult in pain or discomfort during the process. And gives them a number of negative experiences of trying to access services and failing, which can make them anxious about any dental, GP, hospital visit and refuse to cooperate.

 

I think the difference was the gas and air, and also you being involved. Glen knows you [and you know Glen], better than anyone else.

 

It is about getting a balance of your involvement - because you do want to be involved with Glen, and for the staff to see how you do things with Glen and how Glen responds to you. It is very important that those on the autistic spectrum get to know and trust other adults that support them. But that can take years to achieve.

Edited by Sally44

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lisac   

Sally your last sentence is true until they leave. I have learnt that Services change all the time and managers and staff come and go. It is so beneficial to have someone looking out for you who loves you and will keep these providers on their toes so to speak x

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JeanneA   

Hi Lisa, it's very true our young people need someone they can trust, they know well, who will always be around until sadly they are not here anymore, so who better than their Mum and us Mums need to keep the service providers on their toes. I feel getting more involved is a good thing, I'm pleased that with my help we got Glen to the hospital the first time he'd been out for over 8 weeks and he's been going out nearly every day since, I went out with him on Tuesday for a drive with his main carer, unfortunately Glen wasn't having a good day so wasn't as happy as previous weeks but he did settle during the drive and we were out over an hour which is very good for Glen. I am going again next Tuesday, I go when I can, I do work as well part time so I fit it all in. Glen's still very 'up and down' but much better than he was during those long 8 weeks when he was in all the time.

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