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OK so now what do I do.?

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
Two weeks ago the doctor decided that my OH should have another quetiapine. He had become more restless and getting in an agitated state because of the 'other people' telling him what to do. First he was on one quetiapine a day and that made things better for about 2 months. Then it got worse and so he was started on 2 tablets a day about 3 weeks ago. The first few days were ok. then he started getting nasty with me. Would not wash or shower,shave or clean teeth. Would not get dressed. I have had to make sure that what little we do is in the afternoon, as he is not dressed,let alone clean, most days, so we can't really do anything. Its a bit up and down but in the mornings because he doesn't want to get clean or dressed he just yells at me and threatens to hit me if I don 't go away. I always leave him and so it goes on until he suddenly changes. When all this is going on I put his breakfast on the table and he eats it and then starts pacing again . Then the afternoon is fairly ok until about 5 when he gets into bed and won't get up until I call him for dinner. This last week he takes himself to bed at 7 and until tonight I have managed to get him to come and sit with me ,but he will not get out of bed tonight and is in there fully clothed. I don,t mind but I think he will wake in the middle of the night and I will be disturbed and don't know how I will handle that. I am scared for the way things are going.xx
 

fizzie

Registered User
Jul 20, 2011
2,730
Do you have a CPN - community psychiatric nurse? You really need some help.
Try phoning the Admiral Nursing service on on 0800 888 6678 FREE or email direct@dementiauk.org but I would give them a ring to talk it through

Also give the Alzheimer's Society National Dementia Helpline 0300 222 1122 a ring, they can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday

It is really hard to cope without support and you don't need to because there are lots of people to help you through this xxxx
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK So what do i do now.

I'm so sorry about the situation you are in Casbow. Are you coping with this alone? Do you get any help at all?
Not really. Two lots of day care won't have him. They say he is to disruptive. He paces all the time and won't even stop for lunch or a drink. This was about 9 months ago. I have Crossroads for 2 hours a week. Can't have more because I feel it should be a man and I worry about how he would be with a woman, especially now. He gets so angry and when I leave him he cannot settle and just keeps pacing. I worry about the carers in case he gets angry.Crossroads do not have many male carers. Social worker has not got back to me for months. She said she would try to find some day care. Trouble is the whole care system is creaking and about to collapse. There are not enough people prepared to do that kind of work. He is now asleep and I worry that he will wake in the middle of the night and how I will deal with it, He hasn't had his mirtazapine night tablet so I will try to wake him for that at 10. It melts in the mouth so should be ok.xx
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK So now what do I do.

Do you have a CPN - community psychiatric nurse? You really need some help.
Try phoning the Admiral Nursing service on on 0800 888 6678 FREE or email direct@dementiauk.org but I would give them a ring to talk it through

Also give the Alzheimer's Society National Dementia Helpline 0300 222 1122 a ring, they can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday

It is really hard to cope without support and you don't need to because there are lots of people to help you through this xxxx
OK I will try. But I haven't got anywhere so far. I feel so sad that I even have to be saying these things about my lovely husband of over 50 years. Of course he denies I am his wife and he doesn't live here. It is killing me to see him disappearing before my eyes. I don't get much support from our 2 sons and their families. I think they and our friends get fed up, especially if they visit because OH just talks a load of nonsense that goes on and on and we all feel he should be allowed to speak even if it is totally irrelevant to anything being talked about. Thankyou for your advice.xxxx
 

fizzie

Registered User
Jul 20, 2011
2,730
you sound shattered xxx
I hope that you get some help from one of those links and quickly xx
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
As you will know from TP, friends and family are often a huge disappointment. So they find him difficult to even listen to on (probably brief) visits so has it never occurred to them to think what it is like for you?

At the moment he's nasty and threatens violence when you are trying to help him. Please don't let it get to the stage where he is violent towards you. I understand your sense of duty but you have a duty to yourself too. PLEASE contact the Admiral Nurses and/or the helpline and tell them that you fear violence. You need to say that you are really scared and because of this you can no longer care for him alone.

You shouldn't put up with this hellish situation.
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK so what do i do now.

As you will know from TP, friends and family are often a huge disappointment. So they find him difficult to even listen to on (probably brief) visits so has it never occurred to them to think what it is like for you?

At the moment he's nasty and threatens violence when you are trying to help him. Please don't let it get to the stage where he is violent towards you. I understand your sense of duty but you have a duty to yourself too. PLEASE contact the Admiral Nurses and/or the helpline and tell them that you fear violence. You need to say that you are really scared and because of this you can no longer care for him alone.

You shouldn't put up with this hellish situation.
Thankyou Stanlypj. I will try tomorrow .But even talking on the phone is difficult. I will try.xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,074
Kent
I know how hard it is to ask for help especially when you are worn down, distressed and emotional. I remember being in such a position and I would be in tears before I could get any words out.

I was lucky to have a son who would ask for me. If your sons are not able to give you the support you need, perhaps they could make a phone call for you to try to get you the help elsewhere. You never know, it might even be a relief for them to be able to do something constructive for you.
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK so what do I do now.

I know how hard it is to ask for help especially when you are worn down, distressed and emotional. I remember being in such a position and I would be in tears before I could get any words out.

I was lucky to have a son who would ask for me. If your sons are not able to give you the support you need, perhaps they could make a phone call for you to try to get you the help elsewhere. You never know, it might even be a relief for them to be able to do something constructive for you.
Thankyou but my youngest lives only 10 minutes away and seems to be unable to deal with our problems. Manages to shut it all out I think. Our eldest lives 2hours away with very young children and always busy. Always offers to help but never quite comes up with it. Thankyou.xx
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
Two weeks ago the doctor decided that my OH should have another quetiapine. He had become more restless and getting in an agitated state because of the 'other people' telling him what to do. First he was on one quetiapine a day and that made things better for about 2 months. Then it got worse and so he was started on 2 tablets a day about 3 weeks ago. The first few days were ok. then he started getting nasty with me. Would not wash or shower,shave or clean teeth. Would not get dressed. I have had to make sure that what little we do is in the afternoon, as he is not dressed,let alone clean, most days, so we can't really do anything. Its a bit up and down but in the mornings because he doesn't want to get clean or dressed he just yells at me and threatens to hit me if I don 't go away. I always leave him and so it goes on until he suddenly changes. When all this is going on I put his breakfast on the table and he eats it and then starts pacing again . Then the afternoon is fairly ok until about 5 when he gets into bed and won't get up until I call him for dinner. This last week he takes himself to bed at 7 and until tonight I have managed to get him to come and sit with me ,but he will not get out of bed tonight and is in there fully clothed. I don,t mind but I think he will wake in the middle of the night and I will be disturbed and don't know how I will handle that. I am scared for the way things are going.xx
Casbow you are in an awful situation. I have no great advice but I just had to respond to your post. These ideas may be stupid...
Are you in regular contact with your doctor? Is he/she monitoring your husbands behaviour? Have you got a district nurse whom you can contact? Is there an active Alyzheimers society in your area? Can you get a care assessment for him? This is probably no help to you. Meds usually take 3 to 4 weeks to start working but I think you should talk to his doctor.

I have experience of OH, anger, frustration, uncooperative, battle to get him to wash, change clothes etc. gets up in bad humour, needs constant attention and refuses to undress for bed.

His doctor changed meds recently and now he sleeps for a number of hours every night. I have to be in room with him as he won't stay in bed if I am not there too! His meds are monitored by doctor and they can be changed. He was on a heavy dose of anti depressants and they made him worse so he is now on a different tablet and seems to work better. The health people "in charge" went mad when they realised his meds were changed and I didn't inform Liason Nurse!! Sure they were changed by his doctor who works in different health area. I might see her an odd time and she will never make an appointment. Am ranting. Sorry.

I never fail to be amazed that day care facilities seem to have some kind of policy where they discriminate against people who need more care!! Same happens here!

I hope this reply gives you some little support. Sorry I don't understand or know about you health system but am sure other TP's can offer you advice re same.

You need help now. Please contact anyone you can think of early in the morning. Please do this. I hope you get some sleep tonight. Without TP I would have gone quite mad! There is always support for you here. Please keep posting and make as big a
fuss as you can with Professionals. Maybe contact your local MP.
Virtual hugs and lots of love from Ireland.

Aisling
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK so what do I do now.

Casbow you are in an awful situation. I have no great advice but I just had to respond to your post. These ideas may be stupid...
Are you in regular contact with your doctor? Is he/she monitoring your husbands behaviour? Have you got a district nurse whom you can contact? Is there an active Alyzheimers society in your area? Can you get a care assessment for him? This is probably no help to you. Meds usually take 3 to 4 weeks to start working but I think you should talk to his doctor.

I have experience of OH, anger, frustration, uncooperative, battle to get him to wash, change clothes etc. gets up in bad humour, needs constant attention and refuses to undress for bed.

His doctor changed meds recently and now he sleeps for a number of hours every night. I have to be in room with him as he won't stay in bed if I am not there too! His meds are monitored by doctor and they can be changed. He was on a heavy dose of anti depressants and they made him worse so he is now on a different tablet and seems to work better. The health people "in charge" went mad when they realised his meds were changed and I didn't inform Liason Nurse!! Sure they were changed by his doctor who works in different health area. I might see her an odd time and she will never make an appointment. Am ranting. Sorry.

I never fail to be amazed that day care facilities seem to have some kind of policy where they discriminate against people who need more care!! Same happens here!

I hope this reply gives you some little support. Sorry I don't understand or know about you health system but am sure other TP's can offer you advice re same.

You need help now. Please contact anyone you can think of early in the morning. Please do this. I hope you get some sleep tonight. Without TP I would have gone quite mad! There is always support for you here. Please keep posting and make as big a
fuss as you can with Professionals. Maybe contact your local MP.
Virtual hugs and lots of love from Ireland.

Aisling
So pleased to hear from you. Hope you are getting better. In answer to the things you suggest. Doctor seems to be quite good. I will ring Alzeimers tomorrow to try to get something sorted. Am in contact at singing for the brain but not a lot of time to talk to a person from there who is from Alzeimer. New social worker came to see us about 6 months ago, left saying she would try to find us some day care and haven't heard anything since. What I don't understand is why they offer day care and then say they can't have him as he is too disruptive. My whole day every day is ruined by his disruption. Why can 't someone else deal with it just once a week for 3or 4 hours. Sorry to keep moaning. Must try to sleep now. xxxxxxxxx
 

angiebails

Registered User
Oct 8, 2009
227
crewe
The social worker will not follow up unless you let them know how bad things are, they work on the principle that if they don't hear from you you are coping. If you have appointments with a dementia clinic then you need to ring them and tell them what has been happening as I know from experience that I left it too long to express what was happening to me with my husbands violence. If you tell them in no uncertain terms that you are frightened as to what might happen they will do something but it can only come from you. When my husband was at his worst and had threatened me with violence I turned up at the clinic straight away with no appointment and they always have a person there to help in these situations and because you attend in an emergency they will try and sort it as soon as possible and hopefully they might find some medication that will settle your husband as you are your husbands carer and need to be kept safe.


Sent from my iPad using Talking Point
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Casbow, as hard as it is for you to have to phone up and get help, you're risking your own health and sanity if you don't. I tried to be stoic, and (stupidly) felt ashamed that I couldn't cope. But everyone has a breaking point, and when mine came, I would phone and phone, day after day, and eventually, because "cry" was constantly in my throat, I let it come out, and sobbed - and that got results.

John had Crossroads 3 times a week to bath him - he'd kick me when I tried. Though he had a man to begin with, he was fine with the ladies, and they are trained to deal with all sorts of situations.

As I often have said, it's a crying shame that Care is a postcode lottery. Some people see to gets loads free, whilst others have to pay, and some can't even get the opportunity of any care offered, paying or otherwise.

But Social Services have a Duty of Care, to vulnerable people, and you surely fit that profile. Good luck with your phone calls. xxx
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK so what do I do now 2

Rang GP surgery this morning asking for a phone call from Davids doctor. Also rang Social worker and left message. They both rang back this aftenoon. Social worker is visiting us next Tuesday. She is looking into private carers help and if there is anywhere that he could go day care once a week. The doctor was very good and has put his Quetiapine up to 2 in am and 1 lunch time. But he said I should be thinking if we wanted care at home or for him to go into a care. He doesn't mean now ,but the future. He said I will have to do one or the other. I was shocked to think that we could be that close to help with care. Today he is at 5.oopm still wearing only underpants and dressing gown. Once again we have been unable to go out ,not even for a walk. He refused to shower, wash, shave, or clean teeth. Got so angry I felt frightened of him.He has not settled very much at all today. Acting cross most of the time. I was hoping we could go to town tomorrow. There are some things I need but we have not been to town since 2 weeks before christmas. In January it was because I was ill and it took me 6 weeks to get an appetite and strength back. Now it is because of his deterioration. Can't really believe whats happening. Love to you allxx
 

fizzie

Registered User
Jul 20, 2011
2,730
Rang GP surgery this morning asking for a phone call from Davids doctor. Also rang Social worker and left message. They both rang back this aftenoon. Social worker is visiting us next Tuesday. She is looking into private carers help and if there is anywhere that he could go day care once a week. The doctor was very good and has put his Quetiapine up to 2 in am and 1 lunch time. But he said I should be thinking if we wanted care at home or for him to go into a care. He doesn't mean now ,but the future. He said I will have to do one or the other. I was shocked to think that we could be that close to help with care. Today he is at 5.oopm still wearing only underpants and dressing gown. Once again we have been unable to go out ,not even for a walk. He refused to shower, wash, shave, or clean teeth. Got so angry I felt frightened of him.He has not settled very much at all today. Acting cross most of the time. I was hoping we could go to town tomorrow. There are some things I need but we have not been to town since 2 weeks before christmas. In January it was because I was ill and it took me 6 weeks to get an appetite and strength back. Now it is because of his deterioration. Can't really believe whats happening. Love to you allxx
Some care homes offer day care and the carers at day care centres wherever they are are very skilled at helping people. You desperately need a break especially as you have already been ill this year. You do need to put yourself first for a while. Take any help offered -- so pleased to hear that they turned up, don't let up on the SW until you get some help.
Hopefully the meds will help a little too.
I know it all sounds very scary at the moment but sometimes as the disease progresses you can be a better carer from a distance. Your role won't change it will just be different and better quality because you won't be coping with these really difficult stresses and frightening situations.
Thinking of you and keeping fingers crossed that the meds will help considerably. xx
 

Casbow

Registered User
Sep 3, 2013
1,003
Colchester
OK so now what do I do now.

Thankyou. All of you. I cannot tell you how much I appreciate your kind words and advice.I called the doctor and the social worker. Doctor came out to see us and talked about thinking of either care at home or a care home. But he decided to increase the medication from 2 quetiapine to 3 to see how that went. Well OH went to bed at 5 pm, got up to eat dinner when I called him, Ate that and went back to bed at 7.pm. He did not disturb me so I assume he slept and when I woke him at 8.30 he had tea and 2 quetiapine. For the first time in 3 days he let me help him wash and shave etc. We went to town late morning (the first time since middle of December) and did a bit of shopping and had lunch out. None of this was without worry and small problems but so lovely to get out. So the social worker (who I also phoned ) is visiting next Tuesday to try to get see if there is any help or respite she can arrange to help. So for today it has been good day and I can only hope that it will continue for as long as possible. Love to you allxxxxx
 

Kjn

Registered User
Jul 27, 2013
5,835
I'm pleased you've at least had a good day at last, hoping for some improvements for you now xx