Advice please re dealng with not knowing home or carer.

[jaymor]

My husband is now daily saying he is not at home and I am not his wife. He phones me to collect him to take him home. When he gets like this his agitation leads to agresion and he has hurt our daughter quite badly as she has tried to calm him. I have spoken to his CPN who has sympathised but said this is part of this disease. I know it is but that does not help me deal with it. He goes to daycare 4 days a week now so this does not start until around 5pm and I can get through, with difficulty, until 10pm when I can give him a sleeping tablet and hopefully have him asleep and out of torment by 11.30pm. Other days it will start about 9am and then it goes on all day getting worse and worse with him threatening all sorts.of Out of hours doctors come, give tablet and we have even had to call the police because of violence and he has been taken to A&E only to be returned home again. I have a number for a crisis team who advise calling police or out of hours doctor. When I mentioned this to support worker who then spoke to his CPN I was told that the NHS did not commission the crisis team to deal wth dementia patients. Has anyone any ideas of how I can help my husband with the problem of home and me. More so how to help him not knowing me as this out of the two problems is the one that will agitate him and lead to loss of control.
Jay

[winda]

Hi Jay,

So sorry that you are going through this. I had similar with my husband.

I would try to get help from his consultant as that is what I did. Try phoning him and telling him how things are.
My husband's consultant had my husband in to an assessment unit where his medication was changed and it was finally decided that he would be better off in a CH.

It sounds as though your situation is potentially dangerous and I 'm sure you 'll be taken seriously.

Meanwhile do you have a safe place you can go to when your husband becomes aggressive?

I wish you luck and am thinking of you. Let us know how you get on.

[jaymor]

My husband is now daily saying he is not at home and I am not his wife. He phones me to collect him to take him home. When he gets like this his agitation leads to agresion and he has hurt our daughter quite badly as she has tried to calm him. I have spoken to his CPN who has sympathised but said this is part of this disease. I know it is but that does not help me deal with it. He goes to daycare 4 days a week now so this does not start until around 5pm and I can get through, with difficulty, until 10pm when I can give him a sleeping tablet and hopefully have him asleep and out of torment by 11.30pm. Other days it will start about 9am and then it goes on all day getting worse and worse with him threatening all sorts.of Out of hours doctors come, give tablet and we have even had to call the police because of violence and he has been taken to A&E only to be returned home again. I have a number for a crisis team who advise calling police or out of hours doctor. When I mentioned this to support worker who then spoke to his CPN I was told that the NHS did not commission the crisis team to deal wth dementia patients. Has anyone any ideas of how I can help my husband with the problem of home and me. More so how to help him not knowing me as this out of the two problems is the one that will agitate him and lead to loss of control.
Jay

We have seen his consultant and he is trying for a bed in an assessment unit but with only 10 beds for our area it may be some time. He has added to his medication but does not seem to help. We always seem to need help when everyone has 'gone home'.
The out of hours doctors come but it has taken 6 hours and 2 hours for them to come. He goes quiet while they are here only to kick off when they have gone. The police were great and again he went quiet but they called an ambulance and after talking to the ambulance men he quietly agreed to go to hospital. Again he was quiet so we were sent home without seeing anyone with mental health qualificaitons. I just don't know what else to do to help him. I can't begin to know how it feels for him to not be at home and no one to take him to where he wants to be and for his wife to be with him.
Jayx

[winda]

Hi Jay,

It is truly amazing that your husband shows no signs of his aggression when he is away from home. The only way the experts will know what he is like is if they can see him for a period of time. I do hope that it won't be too long before you can get him into an assessment unit.

Meanwhile, you will have to keep phoning the police and hope that eventually he will display his aggression. Just make sure that you are safe.

Also, I would keep phoning the consultant to remind him that you desperately need his help.

I really don't know what else to suggest but I'm thinking of you and hope that you will soon have a solution.

I hope someone else will be able to think of more you can do. Xx

[Sox]

Hi Jay - just a thought -could you record him when he is aggressive etc so that you can show the professionals what it is really like. I know it's a bit sneaky, but as he changes when others are present this may be the only way for them to see what is actually going on. Hope this doesn't sound awful. Thinking of you and do take care. Sox

[LadyA]

Just another thought- it won't help the situation, but might lessen your frustration with it a little. I have learned that there is always a reason for behaviour, even though sometimes we may never be able to discover the reason.

But it strikes me that when people with dementia become aggressive with loved ones, especially as in your case, because they insist they don't know you and want to go "home" - and then they quieten down when in the presence of medics, police or anyone else - it is very frustrating, and we wish they would just behave as they do with us, so the "experts" can see what's going on. But maybe the reason they quieten down is that they are hopeful that these "authority figures" are going to sort things out for them? The Police, doctors etc. will be able to find his wife, bring him home, whatever? And then when they leave, and he is left with someone he doesn't know (and remember, with this illness, it is that he genuinely at that moment doesn't know you) he kicks off again through fear?

It is one of the harder things to cope with though- and probably one of the reasons for having to consider a Care Home. One strategy that might be worth a try is if he phones you for help, to talk to him from another room and calm him, and say you can't come right now, but there is a lady there who will take care of him, and her name is (your daughter's name) until you come. Might work in the short term.

I'm really thankful that although I'm his second wife, and we've only been married 18 years (and I'm 30 years younger!), my husband still knows me. He doesn't know my name and doesn't really understand that I'm his wife, but he knows that he loves me and that I'm always here with him - in fact he has become completely dependent and sticks to me like glue! It's almost as wearing - he even hovers outside the bathoom door when I'm in there! But at least I don't have the problem of trying to explain who I am.

[Grannie G]

I lived with this for a long time but fortunately there was a place at an assessment unit , my husband had a three week stay there and was put on an antipsychotic drug which did not cure his need to go home to his real wife and family, but it did reduce it.

I never tried to keep my husband in the house or calm him down as I knew it was useless as long as he did not know who I was. I let him go and followed him at a distance.
Sometimes he turned round and recognised me, thought it was a chance meeting and greeted me warmly, other times he shouted to me to go away. I was lucky our son was around and my husband always knew him.

I would tell your husband`s consultant you are both at risk, you from possible violence and he from a possible accident if he does leave the house.

This behaviour did not go away, in our case, until my husband had progressed in his dementia. You should not be expected to manage this behaviour without help.

I know when you are under such terrible stress how difficult it is to state your case and for better help than is being provided. Do you think your daughter might step in here and contact the consultant for you. Sympathy from a CPN is not enough.

Please keep posting and let us know how you get on.

[jaymor]

Thank you all for your postings. Our daughter has done a lot of chasing for me. It is becaue of her pushng that we are now seeing his consultant. I wll be seeing a support worker on Tueday and I have as usual documented all of his behaviour and this report will be given to his CPN who I know will then ring me. I will ask how we stand regarding the assessment unit. Today he has started pacing but with a visit from daughter and son later on hopefully he will settle a little. Tomorrow he will be at day care so that makes life easier. They say he is fine there. Thank you all again.
Jay xx