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. :-)

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.

Hi, just wanted to say I'm really pleased you are up and running again. :-)

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.

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.

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.

Hiya, how are things with you and your son now? Yes they aren't stupid they know by chosing pyjamas they won't have to go out, this has been going on for 6 weeks now though a long time for Glen not to want to go out, not like him at all.

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.

Hi Lisa, I wish I did know what triggered off the the situation that week, I did ask the manager again and I've asked staff but none of them had an answer. When Glen was in the car on that day I was told he was pulling his ears an screaming, then he tried to attack the staff in the care and when they got back to the home, one of the staff rung for the doctor straight away as she thought he could have something wrong with ears like an ear infection. The doctor came checked his ears and said there was no infection inside his ears but due to the pulling of his ears he had caused an infection behind them which he then had anti-biotics for. I think it's felt by the psychiatrist and the home manager Mel as she used to work in the mental health side that Glen has definitely got severe mental health issues that no-one in the past has ever resolved. When he start going out again, The psychiatrist wants Glen to have an EEG, MRI and ECG (I think I have got the letters right!) I rang last night and spoke to one of the staff Nittaya, she is such a lovely person, very thoughtful and caring she has a son the same age as Glen, he is deaf. I'm always on the phone quite a while when she I speak to her she goes into detail more than some of the staff which I appreciate. Nittaya said Glen remains calm and relaxed still eating quite a bit but they only have one item at a time in the fridge so that way he doesn't overeat, mostly healthy foods like fruit and yogurts. They have other fridges there which Glen isn't aware of in an ajoined building to the house, where they keep the main food.

Hi, the new medication could be a factor with the weight, I could mention that. Glen picks pyjamas because he doesn't want to go out thats what I think as I know him so well. Also the last time he did go out was the day when he really became aggressive in the car and tried to get from the back seat to the front (7 seater) and attack the staff, who then took him back to the home and then it all began the terrible weekend of destruction and aggression. I agree about the PDA Sally. I will ask staff to monitor Glen's weight. I do hope he does decide soon that he wants to go out again.

I am concerned about the amount of food Glen is eating, I was there just over 2 hours yesterday and he had one of my buns that I had made and taken in and a coffee, then about 10 minutes later he had a yogurt. Then about 20 minutes later he had his lunch which consisted of a ham sandwich (2 slices of bread), and cut up cherry tomatoes and lettuce, coffee and some strawberries afterwards. It was a very healthy lunch but as I say he is eating very frequently throughout the day and has definitely put on weight because he obviously isn't getting any exercise at all with staying in all day every day for 4.1/2 weeks now. I just don't like to say too much because I know how much the manager and staff have been through of late and how committed they are to keeping Glen there whereas other homes would have definitely got him admitted to a mental hospital considering how he was just over 4 weeks ago. He did a lot of damage which came to £4000 altogether, so you can see why I'm reluctant to say too much about the eating side of things. I also picked up on the fact Glen only sleeps about 2 hours at a time during the night, that to is probably due to not doing anything in the day, so he doesn't get tired.

Hi Mel, he said 'I want my pyjamas' and he's said 'no' a few times! He is perfectly capable of speaking he just choses not to. No Glen will only wear pyjamas, he is very smart they have tried other clothes but you can't get one over on Glen :-) He hasn't got his bike at this care home as most of the staff are older and also it's a busy road so we've still got his bike, but Glen was enjoying his long walks and went trampolining which they are hoping he will get back doing soon. At the moment he is very adamant about not going out, so they are going along with what he wants to keep him stable and calm. I was very shocked when I learnt about how much damage he did that bad weekend. The damage in total came to £4000. He broke some of the items of 2 of the other residents and 2 t.v.s smashed up his own room and many other house hold items. When I got to the care home there was skip in the drive with the broken items in, it was shocking to know just what Glen is capable of. They don't have locks on any of the doors at the home which is how Glen got into the 2 other residents rooms to get to their things. There is currently no t.v. in the lounge because Glen does not like to watch it and doesn't like anyone else watching it either!

Hi everyone, it was a very good meeting over 2 hours long! It was just myself, the manager Mel and the social worker, well and Glen of course as he kept coming and going during the meeting. It was held round the table in the lounge where Glen sits to eat, so had his snacks and lunch there whilst the meeting was going on. Well I have to say what a fantastic job Mel and her staff are doing. I'm glad I took the buns that I made for everyone :-) They have had so much to deal with for several months but more so the last 3 months. The dentist that looked at Glen's teeth at the home said the wisdom tooth probably didn't cause the agitation in Glen a few weeks back as she felt he would only have noticed pain (if he did have pain) in the last 2 or 3 weeks. Mel who was in the Mental Health side a few years back thinks that Glen's mental health issues have not been properly addressed in the past which is why Glen keeps having these 'breakdowns' which are getting much worse each time. Thanks it is felt to the diazepam and another medication Glen has been put on he is so much better, no hitting out or himself for just under 2 weeks now which is very good considering how bad things previously. Also he is on the anti-biotics for his inflamed wisdom tooth and staff have noticed a difference since he's been on them. Glen is now very calm, looks happy, lovely smile, seemed really pleased to see me, I sat next to him, I really didn't want to leave, it's the longest time I've spent with Glen in some time. Mel said she felt what they are doing by putting no pressure at all on Glen is working. He previously got very aggressive regarding having a bath which went on for weeks, they have now overcome this and he is happy again, no problems and feel it's just a matter of time before he will want to go out again, and wearing normal clothes but they leaving up to him. They have tried putting out 2 sets of entirely different clothes but he wouldn't wear either and actually asked for his pyjamas, he has spoken occasionaly recently. Two psychiatrists are visiting Glen on Friday, one of them knows Glen from years back, she is a very good senior psychiatrist. Also on Thursday the behavioural therapist is going in again to see Glen. So lots of good things have come from the meeting.

Hi Lisa, thanks very much for what you said. My son won't go out at all at the moment which is why the mobile dentist visited the home, she did say that Glen's teeth needed cleaning more thoroughly and prescribed anti-biotics for the inflamed wisdom tooth. I have a meeting at the home today so I will find out what their plan is on getting Glen to the dentist. Thanks again.

Thanks very much for your comments, much appreciated. I will let you know how I get on later.

Hi Mel you make a good point about Glen being able to make his own decisions, I should have thought of that. He hasn't wanted to go out since his outburst 4 weeks ago and it is thought now that the outburst could have been due to the wisdom tooth starting to come through causing Glen great pain and the only way he can express that there's something wrong is by hitting out or being destructive. Glen hasn't had his bike at this care home as the roads are quite busy and the carers are older ladies but instead Glen had been enjoying long walks, trampolining and drives out. Hopefully he will get back to these things in time like you said. Yes Glen could easily become distressed if he was forced to do something he didn't want to do so I can understand why they are not putting any pressure on him. Thanks for your help I will let you know how I get on tomorrow at the meeting.

Hi Mel yes I thought that was strange that he didn't point to his teeth I will ask tomorrow whether they have a picture of teeth on their pain chart.

I have Glen's annual review tomorrow and I don't know whether to bring this up or not, please ladies I would appreciate it if you could advise, what would you do if you were in my position? Well, Glen hasn't been out in over 4 weeks since the big incident at the home when he was aggressive towards staff and destructive, destroying most items in his room and broke the t.v. in the lounge. Staff are not putting any pressures on him at all since that time. They do however ask every day if he wants to go out. Also they give him the choice every day of pyjamas after bath (in the morning) or normal clothes, every day Glen picks pyjamas which to me indicates that he wouldn't pick normal clothes because he would think that he may have to go out. Glen has now worn pyjamas every day for over 4 weeks. Do you think I should raise this issue tomorrow with the manager? Do you think staff should be firmer with Glen to try and get him to wear normal clothes? I'm also concerned that Glen is getting no fresh air, no exercise and as he is eating well he is gain weight. Thank you.

Has anyone's young person with ASD had trouble with wisdom teeth coming through? I think it could be why Glen has been so agitated lately as it was found by the mobile dentist that he has a wisdom tooth coming through which is inflamed and could definitely by why Glen's been so unhappy. He isn't able to tell you what's wrong that's the problem so he always hits out or hits himself.

Hi Lisa, yes the dentist said the wisdom tooth can be left and once the inflamation has gone it should be ok. I just wish that Glen could have made it known that it was his teeth that were upsetting him, but at least it's made the staff more aware now regarding his teeth in case of future behavioural problems.

Well the mobile dentist went to see Glen, he let her check all his teeth, he was very good. The dentist said Glen's got a wisdom tooth come through which would have caused pain to Glen and she said the tooth would have started coming through a few weeks ago at the same time as when Glen became extremely agitated. The tooth is inflamed and she's given Glen some anti-biotics. Also the filling that needs to be filled is getting bigger so Glen needs this done as soon as possible. It could make more sense now as to why Glen has been so upset lately. Let's hope staff will get Glen to the dentist now to get the tooth filled.

Hi Lisa, it is important Glen goes to the eye check up but I'm not sure if the home would drug him to try to get him to go. I am ringing up tonight as the mobile dentist was going in today to check Glen's teeth as they can't get him to the dentist at the moment.

Hi Mel thanks for that, if thats the case it's not good for Glen as he wouldn't have any idea what was going on and it would cause him distress therefore he would hit his eye. I've been in touch with the home manager today and unfortunately she said that since Sunday Glen has become quite agitated again, I said I hope my visit on Saturday didn't upset him and she said probably not, he's also adamant about not going out, she said Glen seems to be very in control of what he is doing, which is so worrying to hear. It's like there's 2 sides to Glen. How can he be so happy and smiley on Saturday and then change suddenly on Sunday, I just don't know anymore. I have Glen's annual review next Tuesday at the care home, so lots to talk about then. I am so concerned about Glen and why he's behaving in this way, I'm thinking that even though the staff are fantastic with their care and support that perhaps Glen needs somewhere that staff are firmer with him, do you think so? I think at this care home, they've never pushed Glen and have always gone along so to speak with what he has wanted. All the staff are ladies as well, there are no men, I wonder if perhaps the home would have benefited with a couple of male staff?

HI Lisa, yes Glen's good eye has been checked previously and it was fine. He is now awaiting his next check up, the problem is Glen is still refusing to go out so I don't know what will happen, just hope by the time the appointment comes through Glen is willing to go out again. Yes I quite agree with what you said about autism :-(

Hi Mel, the staff have a pain chart and always go through it, i.e. it shows different parts of the body and staff point to these parts asking Glen which is hurting him, sometimes he points to a certain part other times he doesn't. I think most of the time he just lashes out as you said. As for wearing glasses I really don't think that would work at all for Glen. He was prescribed glasses a few years back for I think being short sighted, but he wouldn't wear them, so I can't see that being any different now, and they would be too dangerous for someone like Glen when he was in one of his depressive states. You are probably right about Glen hitting his eye as he just wouldn't understand why he isn't see properly out of it. It does worry me so much about his eye sight, I know he's been hitting his left eye also I could tell on Sunday that his left eye didn't look quite right. I do wish staff could restrain him when he goes to hit the left eye. I dread the thought that one day Glen could go blind due to his hitting his eyes.