Motivating

[JeanneA]

I just wondered if an autistic youngster was in a similar situation as my son. Glen has been in his current care home for 18 months. The first 8 months were very good, Glen was very active; going out for walks, shopping, going for car drives preparing some food in the home for himself etc. However for the last, I would say 8 months at least Glen has lacked motivation and refuses to go out and just stays in his room, mostly laying in his bed, only gets up for a bath and occasionally walks down the stairs. He doesn't go into the lounge anymore. Glen has all his meals in his room, staff have let him do this months ago which I disagreed with and still do because I feel it makes him more isolated, I think they should have insisted he came down just for dinner perhaps it would have been something. Glen wears pyjamas all of the time, he will not get dressed. I think perhaps Glen is going through a sensory issue stage so I can understand him wanting to be on his own but feel staff should try to motivate him in a small way. When I ask staff and the manager about trying to get him motivated into doing something all they say is we cannot put any pressure on him.

 

A few months back Glen had an extremely aggressive spell when he damaged the property causing £4000 worth of damage, and he also hit himself and staff with extreme force. So I can understand their reluctance to 'push Glen' but he's now been relatively calm for quite some time and they still won't try to get him to do anything. What do you think? Am I worrying unnecessarily? I just don't think it's good for anyone to be left with nothing to do all day. Glen hasn't got anything in his room apart from a few soft toys and a bean bag type chair as he threw everything else out of the room during the time when he was very destructive, and they haven't put anything back. I think they should put one activity back in his room just to see if he shows any interest in it but whatever I say they seem to disagree with.

I have asked social services for a meeting and this keeps getting put back for various reasons, I have just heard the meeting is going to be on the 2nd of February. The only positives are the fact I know he is being looked after well and no harm would come to him. I would so appreciate your comments. Thanks.

[Laddo]

Do you know if anything has changed in the care home recently? Like the routines, redecoration, a lot of new staff etc? Perhaps something like this has affected Glen's routine. I hope he goes back to how we was in the first 8 months soon

[JeanneA]

Hi, thanks so much for your comments, nothing has changed recently apart from a couple of members of new staff but they have been there a while now, so I really don't think that is the problem. No re-decoration either. I just hope by having a discussion at the meeting about strategies regarding Glen will help. At least staff do massage Glen which helps particularly when he is feeling anxious.

[Sally44]

I think you are right to bring the subject up. What is Glen doing all day long in his room with no stimulation at all? If it was my son I would be trying to get some activity happening.

 

And if Social Services have been helpful, then I would push for them to be involved for their opinion too.

 

As good as some care homes are, I think that there is always the temptation to take the 'easy' option for everyone involved. But is that in Glen's best interests? Although Glen caused that amount of damage, it appears that no-one really knows what the cause was and so they have made his room a low arousal area - maybe from a sensory point of view. Which is fine IF Glen is doing other things. But he isn't.

 

Could Glen be depressed? Does he appear to be happy on his own in his room all day. It is possible to have a room camera set up to record what he is doing all day. Social Services did suggest this as something that might be helpful to us when our son went through a phase of damaging his room and cutting his hair etc. But in the end we did not use it as my son cottoned on to what it was and demanded it was removed as he wanted his "privacy". And those behaviours have stopped now anyway. But it maybe useful for you to view such a video.

 

The home should be able to come up with something Glen can do - maybe just one thing a day to see how he reacts to that eg. a puzzle?

[JeanneA]

Hi Sally, thanks for your comments. I do not know if Glen is happy or not to be honest. Sometimes when I go he seems relaxed and happy other times he looks anxious and is agitated. Every time I bring up about the staff trying to get Glen just to do one thing a day, take things slowly I always get the same answer: 'we don't want to put any pressure on him', we don't want him getting upset/agitated. So I decided to ring social services and voice my concerns and ask for a meeting. After putting pressure on them, I have now got a meeting date of the 2nd of February, ideally I would have liked it sooner but at least I have a date. I wouldn't say that social services have been helpful, in fact I get the distinct feeling they are on the care home's side, it's just what I've picked up on. The social worker is new so doesn't know Glen at all, which doesn't help. I brought Glen up for nearly 17 years, I know him better than anyone but no-one seems to acknowledge that which is very frustrating when all I'm doing is trying to help.

 

No, I don't think the camera idea would work as Glen would probably try to brake it as he has done most things in his room, he's even stood on his bed and tried to brake the ceiling light, I think they had to change it somehow.

 

Glen could be depressed I have thought of that which is why I want to speak to the psychiatrist at the meeting. Glen refuses to go out, hasn't been out since the 22nd of October. He won't even go out with me, I had been going over every couple of weeks and he was going out with myself and a carer but he then started not wanting to go anymore, which is a shame as I felt I was doing something by getting out when staff couldn't. I am so worried about him, everything was going so well in the first 8 months but most of 2014, hasn't been good.

[Special_talent123]

I have personal experience basically what he is doing is down to depression thats what i been doing a lot recently although i go a little bit but all that is down to my depression

[JeanneA]

Hi, thanks so much for your comments it is so helpful. I'm so sorry to hear you are feeling depressed does it make stay in bed and not want to do anything? Have you been in contact with your doctor to ask for help?

[Sally44]

I know this must be a great worry for you. Afterall you are his mum and you want what is best for Glen.

 

Is there anything the home can tell you that Glen does and enjoys doing? If there is absolutely nothing, then I think it needs to be looked at - and I mean everything looked at. Could it be depression? Could it be medication?

 

It is logical to say that someone would continue to do things they enjoyed doing. So what is stopping Glen? If these are all things he used to enjoy, then what possible reason could there be for his steady withdrawal from everything and everyone?

 

When I mentioned a camera, I meant a hidden one. Hidden from Glen, but with the care staff installing it. So you can see what how he is spending his hours everyday. Because 24 hours of doing very little is worrying.

 

Is there any particular care staff he dislikes? Is there any other resident he does not get on with?

 

Has his medication been changed at all?

 

I'm sure you've gone through all these thoughts yourself anyway.

 

Can Glen communicate with you at all about his feelings?

[Mihaela]

Hello Jeanne. I agree with all the good advice given so far. It must very difficult for you having to cope with the thought that they are doing nothing at all to stimulate Glen's mind or enhance his life. It sounds so very wrong in every way. They did more for people in the old asylums than they're doing for him. I feel they're using his damaging meltdown as an excuse to do nothing but contain him to ensure a similar meltdown has no chance of occuring. There must have been a reason for that meltdown, and I doubt that they've even looked for it, let alone addressed it. Maybe they know the cause, but prefer to keep quiet. Maybe it was caused by a particular member of staff.

Lack of stimulation at this level and for any period will certainly make him chronically depressed, and the symptoms should be very obvious to the staff. Just because he wants to stay in his room doesn't mean that it's in his best interests, and it's likely that it's depression itself that causing him to want this. Their inaction will without doubt damage his mental health. How long will this go on?

[JeanneA]

Thanks for both your comments. I agree that lack of stimulation is not good at all, I've been trying to get this across but no-one seems to listen to me. I think they are just definitely containing him and thats all.

I do not know if he dislikes anyone there. As for the residents there is one who lives in the main house and he's bedroom is on the same floor as Glen and he is quite noisy, can't speak but makes noises, he started living there after Glen had moved in.

 

There is nothing Glen likes doing apparently, all of his things are in the shed anyway since he didn't want anything in the room anymore so he hasn't got anything in his room even if he did want to do something. I keep asking for one item to be placed in his room but no-one listens to me as I've said.

 

Glen's meds have changed over the past few months, with the latest change quite recently so that might be making him more tired as he seems to have been very tired since Christmas,but his anti-depressant still hasn't been changed, I keep bringing this up as he's been up it for a few years now and it obviously isn't helping him, I think it needs to be changed to a different one. Glen is on a mood stabilser medication which was changed recently its called sodium valproate. He also has diazepam which was increased recently also and I'm wondering if this is what is making him so tired.

 

I feel very sad every day, thinking of Glen in that room with nothing to look forward to. Like you said how long are they going to let Glen just lay in bed all the time, I wouldn't be allowing this if he was living at home. I always encouraged Glen to do things.

[Special_talent123]

Hi, thanks so much for your comments it is so helpful. I'm so sorry to hear you are feeling depressed does it make stay in bed and not want to do anything? Have you been in contact with your doctor to ask for help?

 

Hi Jeanne, Yes it does make me stay in bed. at the moment i have physical health issues not only do i have hypermobility syndrome i have arthritis and chronically fatigue. But yes when i am suffering with my depression it makes me very tearful, lack motivation, do nothing and im on antidepressant with a beta blocker that is not working because i am being tested for coeliac disease so having to eat gluten which is making me very unwell.

[JeanneA]

Hi I'm so sorry to hear how you are feeling. I just feel for anyone in this position that they feel so low that they want to be on their own and have no motivation to do anything. Have you thought about asking your GP for a change of medication? It maybe that you need something different. I guess you can understand more why Glen seems to want to be on his own then. Unfortunately Glen can't express how he feels. I do hope you feel better in yourself soon.

[Special_talent123]

Hi I'm so sorry to hear how you are feeling. I just feel for anyone in this position that they feel so low that they want to be on their own and have no motivation to do anything. Have you thought about asking your GP for a change of medication? It maybe that you need something different. I guess you can understand more why Glen seems to want to be on his own then. Unfortunately Glen can't express how he feels. I do hope you feel better in yourself soon.

My meds arent working because 1 im glutened daily i have to keep at it for now the gastroenterlolgist, 2 physically unwell but now depressionn is being set of quite bad so alls want to do is sleep, cry. Tonight i went very agitated and hyper.

[JeanneA]

I do hope you start to feel better in yourself soon, is there anything you can do to take your mind off things? perhaps a special interest you may have. x

Edited January 5, 2015 by JeanneA

[Special_talent123]

Depression is a chemical imbalance in the brain, its horrible to experience as it creeps back at you and i know i had it creep back at me. I try my hardest but not push myself to hard that will be difficult just in small gradule steps like trying to get to know my social worker first (coffee) before i feel able and comfortable with her in my flat. She understands this

Edited January 6, 2015 by Special_talent123

[JeanneA]

The manager of Glen's care home rang me yesterday afternoon saying she has told the social worker that they have exhausted all avenues with Glen and don't know what else to do and wondered if he would be better somewhere else. I am worried about 'another move' for Glen, he's mental health is fragile as it is and I did say this to her and I think she hasn't ruled Glen out staying there it's just they are frustrated that whatever they do they can't seem to help him. Also she told me there was an incident on Sunday afternoon, when Glen started hitting himself with great force, ran down the stairs and out the front door (they don't keep it locked during the day). He ran down the drive and nearly into the road, staff went after him and managed to get him back into the house ok. I was so worried to here this though, he could have been run over which is what the manager said, she's had to report the incident and also asked if they could be allowed to lock the door in the day. I don't know why you have to get permission about locking the door, why can't you just lock it? If something had happened to Glen it would have been their fault wouldn't it? They also don't know what triggered this, I did ask if something had upset Glen but they didn't seem to think so.

Someone asked me what Glen has in his room, he only has a bean bag chair with a few soft toys on it plus I brought in a couple of small bean bags that you feel/play with and a sensory toy. Back in May/June last year when Glen had a major meltdown, he through all his things out of his room and broke some of them. When Glen became calmer again they tried putting some back and he again threw them out, so they haven't tried since. Glen did do this when he lived at home years ago when he was much younger and I did manager to put some back with success. They don't seem to want to try again.

I definitely feel that wearing pj's all day plus having all his meals in his room and doing nothing is definitely now routine to Glen and trying to change this isn't going to be easy. I do wish staff hadn't have allowed Glen to have all his meals upstairs, he has no reason to come down anymore, although he does come down the stairs when he wants something to eat and takes it back up to his room.

Whilst speaking to the manager I did say yet again about trying Glen with one activity a day just to see how he reacts, and all she would say is 'we've tried that' but what she really means is they're tried a couple of activities just once and it didn't work out, one was a puzzle which he threw at the carer. They need to try an activity for a week, persevere with it, but they don't seem willing to do so. The manager also thinks Glen is going through a mental health breakdown, as she has knowledge of mental health isssues because she worked in that area years ago before she became a care home manager. However she said he isn't bad enough in her opinion to be sectioned. Glen has been sectioned before.

Perhaps a complete change of care home is needed, my concern is though would after a few months would Glen's negative behaviour return again? It is a hard decision to make. Although it might be made for me if the manager definitely says she does want Glen to move on. How they would get him to somewhere else I don't really know because he won't go out at all with anyone including me

Edited January 6, 2015 by JeanneA