feeling so low

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Chip

Just catching up. I'm sorry to hear about your husband. I do hope all continues to go well.

At least you know he is being well cared for, so try to relax and have a rest.

Love,
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
Hope all ok soon

Hi Chip

So sorry to hear about your husband.

Take good care of yourself and I hope you get some sleep/rest.

If you need to talk you have my phone number or you can PM me - I'm back on the forum again. Its been a while - apols.

thinking of you.

G
x
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
well i slill wake up at around the times he would. First night i woke at 5am thinking wow he has slept and is still sleepng then it came to me he wasnt there. Woke at 3 last night. I'm going into the hospital tomorrow and advacacy meeting me. She wasnt happy that when she seen him he was sedated as at a meeting it was said that hey would not over sedate him. I phoned them up and asked what was going on. He was calm and no problem so why was this done. They gave him a drug thats not recomened. I have done research and am going in with the proof. I aso phoned Newcastle Uni up as they have looked into it. I hope they get back to me. His seizure may have been caused by the drugs he is taking. As all 3 have this on the leaflet.
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Just been in to see him. What have they done to him? He is incontinent wasnt even on Monday and nether at night as well when he was at home. He was sedatated as well. He had on someone elses trousers. Advocacy was with me we both are not happy. The change is too much in him. I want the Robert back how he was just a few days ago. Hospital is doing him no good. I got a response from him showing the Robert i know is still there. If only the drugs were taken away. We demanded to see a doctor and the records. Have to apply to see records and look at them with a nurse (was told to explain even though i do not need that )We have said we want to see the Consultant. I found out that Tegretol used for seizures that he has also is a mood stabiliser and comes in sustained release therefore has less side affects. In America it is used in Dementia has has got sufferes back into Social Life. It is also on the list for seizures from Alzheimers but the one he is on isnt and may be causing him to be worse but they havent tried changing it. Will see next week when we see the Consultant with the evidence. I am taking photo's i have of him going to places and the smile he has on his face at them ( some of were just last week). I told them they do not know what he is like at home. At least i got him sleeping at night and only up once to the toilet then he went straight to bed. He isnt sleeping at the hospital they are allowing him to sleep during the day. I told them to stop letting him sleep during the day and keep him active They are talking about keeping him in another two = three weeks. What am i going to get back. They are going to give me a bad time when he gets home. Advocacy is not happy. Im very angry NHS bad for your health. I am contacting the Social Worker to tell her i might need the Direct Payments upped as i am going to send a carer in to the hospital to start encouraging him back tough if they dont like it.
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Thanks Nadia printed it out and will take it with me. Was thinking it would be useful if someone from Alzheimers would come as well to the meeting with the consultant. Her understudy said today we go on NICE recomendations. Well we all no what we think of NICE. No staff had asked what he is like at home ether so i told them what he is like. I said he does get agitated but its because he wants to go for a walk and i cant take him (have leg problem) Its caused by the lack of help i get so its Social Services fault this happens.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Chip,

I'm so sorry you're having to go through all this. It's so sad that people who gave to be admitted to hospital so often come out worse than they went in. It seems to be the norm that people who went in continent, come out incontinent.

Of course, there are exceptions. Many people receive excellent treatment. But there are far too many cases these days of the opposite.

Let us know how you get on,

Love,
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Another problem i found out today he is in volunterly not under any section. So why is he sedatated so much. I asked what he was like when he arrived as he wasn't sedated then got told he was QUIET and didn't want to stay. (How can a Dementia sufferer volunter to be admitted to hospital?) And he if was quiet why is he so much sedated. The incontance is due to the sedation and he will only go to the toilet if i take him. He is still aware. He will not go or say to anyone exept me. Everytime he goes to his clubs or the day hospital as soon as he comes home the first thing he says is toilet. I'm phoning up Mind TO FIND OUT MY LEGAL RIGHTS.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Hi chip,

What on earth is happening? You are getting contradicting information and you both don`t know whether you`re coming or going.

Who is giving you all this information?

I would ask to see the consultant and ask just what is going on. This whole situation seems most unsatisfactory.

I`m so sorry you`re having to put up with so much uncertaincy. I hope you`ve the strength to see it through, and get some understanding of your husband`s condition, what treatment he is having, why he is having it, and what help is available to both of you.

I can`t imagine MIND being able to help until you have all the facts.
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
I asked the charge nurse today on the phone if he had been sectioned and was told no he is in voluntary. I then asked what he was like and she told me quiet and wanted home. I cant take him home in the state they have made him. I am furious. They have ruined his and my life. What we had left of it together. He is only 53 as well. I had told them before what that drug does to him. I am ready to get a lawyer if they don't do something to get him back to how he was at the start of the week before they got him. I have photo's as well to prove what he was like. I am going in tomorrow with my camera as the place is horrible and basic where he is. Not even a door where is bed is with two beds. His t shirt and pants hung up above the top of his bed on the wall as well. No seats beside his bed no water no nothing. Mind said he was free to go but as they have sedated him they will say he isnt fit to leave now. Its so bad. I have also checked the NICE site the consulant is in for it as well. Advocacy and me trying to get a meeting with her urgently. I will never trust a doctor again after what i have seen. I asked the charge nurse would she like to be in that place and treated how he has she didn't answer that she said see the consultant. I think the care commision has to step in here as well. I wish so much i could turn the clock back to last week. I only hope with hard work i can get the Robert back to how he was before he went in. Why would they not listen to me? They will wish they had. So much for getting a rest. Its really stressed me out. Oh i left a message for the Social Worker as well to contact me yesterday she hasnt contacted me ether.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Dear Chip, It`s hard to believe what you`re being made to endure.

Take the photos in and ask for your husband to be returned to the state he was in when he was admitted.

When all this is over, it warrants a formal complaint.
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Grannie G I have told them that but what i got told was you will have to speak to the consulant. Luckily i have the NICE guidlines for Dementia. The consutants understudy did the wrong thing on saying they go by Nice guidlines. I smiled when she said that yesterday and when i smiled she said have you got something to say. I said no i was thinking thanks for saying what you have just said you have just landed in it. I've just been putting photos on CD to get printed. Its so hard to beleive 8 weeks ago he was on a plane laughing and having fun on a day trip to London on the eye and seeing the sites i have it all on photo's in parks kicking a ball and now no interest in anything anybody or where he is, yet last Monday he would have. How would the hospital staff feel if that was them or in my position seeing their husband change so much with a drug he shouldn't be getting. Your life in their hands worrying thought. We aren't stupid. They will also financily ruin me so i will need compansation from them. I wish them luck in getting him back to how he was in as quick a time as they took put him the way he is now or else. There is a lot of information on the NICE site.
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
How are you today?

Chip

How are you today? Let me know if there is anything I can do to help. I can't believe what you are having to go through. I admire you so much for staying strong and your fighting spirit - keep it up.

I hope that the next few days are a bit easier for you and that Robert is back to how he was before he went in soon.

Take good care of yourself too, though I know it must be difficult with all you are having to deal with at the moment.

Thinking of you.

Alison
x
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Well back from hospital. He told me he wanted the toilet and he isnt incontinent and hated these things (pads) I got this after 15mins of being i'm afraid a bully and hard. I done this to see how much i could bring back. It worked though with a nurse watching as well. She then came and spoke to us and said i think you should see the consultant. I told her i am trying. He is unsteady on his feet thats the medication. I told he really likes outside walking and going places so where is the person centered care thought as this will stop him. And that he has never been in a meeting NICE guidelines 1.1.11.2 Care for people with Dementia in an acute hospital facility. Acute trusts should ensure that all people with suspected or known dementia using inpatient services are assessed by a liaison service that specialises in the treatment of Dementia. Care for such people in acute trusts should be planned jointly by the trusts hospital staff liaison teams, relevant social care professions and the person with suspected or known dementia and his or her carers. 1.1.11 Acute and general trusts should plan and provide services that address the specific personal and social care needs and the mental and physical health of people with dementia who use acute hospital facilities for any reason. This is just 2 clauses in the NICE guidlines -- that the doctor said we go by----- the above hasnt been done.
At least i found out the Robert is still there. I think the early onset team will have to go and show the medical profesion how to and what to do with younger suffers. Oh the nurse said i will put some cd's on what does he like I said up to date music and he will dance (thats if he can keep his balance) she said oh i will put on the radio well football was on so that cheered him up. The nurse anyway got her eyes opened today.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Chip.

I love the way you`re quoting chapter and verse of the NICE Guidelines. Keep up the good work.

I won`t say a word about anything else, I don`t want to get you worked up again.

We`re all behind you though. Imagine an army of TPers marching into the hospital with you. That`s us. :D
 

chip

Registered User
Jul 19, 2005
400
0
Scotland
Been told i'm to get a phone call with a date and time to see the consultant. I know she is nice though but its the things that have been done wrong. I have written down so many questions. Will let you all know.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Hi Chip,

In the situation you have found yourself and your husband in, it`s not enough to be nice.

I hope you aren`t kept waiting for the phone call.