Help! I just don't know what to do

[Reds]

Hi all

My husband has Alzheimer's and his behaviour mainly in public places is unacceptable. Its got to the stage that he won't stop doing something when I tell him its not acceptable. I feel now we should not go anywhere but I don't want to see him deteriorate at home by not having enough exercise or variation. We love walks but the behaviour when we meet people can be awful. We get a bit of family support but everyone is so busy.

If we go out there should be someone else with us but that idea isn't appealing to me. It also means that I won't be able to go out as much too as worrying to leave him at home alone and although he goes to groups it still is limiting for me to get outside chores done and feels awful to exclude him.

It would be very hard for us to pay for carers and I'm not sure if its the answer. I want to cope but the behaviour is so difficult.

Reds

 

[Beate]

What kind of behaviour is he exhibiting? How is he behaving at his groups? Have you had a needs and carers assessment? Would he go to a day centre or accept a sitter to either go out with him or do activities at home? You have a right to support and respite so contact social services. You cannot deal with all this stress on your own.

 

[Reds]

What kind of behaviour is he exhibiting? How is he behaving at his groups? Have you had a needs and carers assessment? Would he go to a day centre or accept a sitter to either go out with him or do activities at home? You have a right to support and respite so contact social services. You cannot deal with all this stress on your own.

Hi Beate. He approaches people. Today a large group of children playing in a field with teachers and parents. Trouble is my husband looks worrying to them when he goes up to them and he wouldn't let me stop him and raised his fist to me pretending to warn me. He joined in with one of the games and I was trying to stop him and then he crawled on his hands and needs virtually in the centre of the school trip gathering. At home when me and a family discussed it he left the room and got two sharp knives looking threatening but he says still a joke, we were alarmed! I said later what a bad day he said he had had a nice day! In tea rooms he won't stay away from people's tables, wanting to tell them his jokes and does pranks and won't come away now when I call him, can take awhile to get him away. There are groups in place but in some ways has made his behaviour worse and he copies things and some people encourage it for fun. I don't really want carers in the home as often he is manageable at home its just it seems like I need someone else with me now to help when out with him but I can't see how that can always be. I don't feel confident in contacting social services, worried I will make everything even worse.

Thanks

 

[Chuggalug]

Hi Beate. He approaches people. Today a large group of children playing in a field with teachers and parents. Trouble is my husband looks worrying to them when he goes up to them and he wouldn't let me stop him and raised his fist to me pretending to warn me. He joined in with one of the games and I was trying to stop him and then he crawled on his hands and needs virtually in the centre of the school trip gathering. At home when me and a family discussed it he left the room and got two sharp knives looking threatening but he says still a joke, we were alarmed! I said later what a bad day he said he had had a nice day! In tea rooms he won't stay away from people's tables, wanting to tell them his jokes and does pranks and won't come away now when I call him, can take awhile to get him away. There are groups in place but in some ways has made his behaviour worse and he copies things and some people encourage it for fun. I don't really want carers in the home as often he is manageable at home its just it seems like I need someone else with me now to help when out with him but I can't see how that can always be. I don't feel confident in contacting social services, worried I will make everything even worse.

Thanks

Reds - I'm awfully sorry to put it like this, but you're doing exactly the same as I was: trying to be too independent.

Believe me, please, when I say that help, and getting it are not bad things. I used to think I'd cope alone until the very end, but that was just not feasible. There came a time when even I had to admit defeat and allow the hospital people on our case to take over, and take over is exactly what they did, and it has been a blessing.

Are you a very private or timid person? If so, then I truly understand your reluctance to have people in your home. But what about you, Reds? Are you coping all right? You've come here for advice, which is truly courageous. Took me years to finally do that and join this site. Really don't know what I'd have done without the very capable and sensible people on here, who at times have been bold enough to give me a razzing! (Tell me off.) I dare not do that with you as I haven't had the pleasure of getting to know you yet. But I strongly advise you reconsider getting whatever help you can. You'll be surprised at the difference it might make.

 

[Beate]

I am really sorry that your husbands behaviour in public makes you so stressed. The problem is he can't help it. He has lost his inhibitions and no amount of reasoning will change that. So if you don't want to keep him at home, and it's admirable that you don't, you need coping strategies. Please get in touch with your local Alzheimer's Society, Age UK and Carers Centre. They can give you practical tips how to handle him plus emotional support. I really think you need those assessments from social services. You cannot do it on your own. And call the Admiral Nurses or Alzheimer's Society helplines.

My OH used to randomly talk to strangers. Luckily he's a friendly person and most people understood. I used to apologise for him and mention his condition and they said: "Don't worry about it". If you don't want to talk about him in front of him, print out some small cards saying something like: "My husband has Alzheimer's. Please excuse his behaviour. He means well." And discreetly hand them over.

With regards to his groups, I don't think they encourage his behaviour. They might just let him be. I think a specialised day centre would be great for him. OH's day centre isn't fazed about anything.

If you want to spend time with him outside the house, have you considered assisted holidays? There are charities/companies like Revitalise and Dementia Adventure organising weeks specifically for carers and their loved ones, with nurses and volunteers to hand at all times. They organise day trips and walks etc and make sure everyone is safe and has a good time.

You are absolutely right that he should be able to still go out and enjoy himself. Let others help you in achieving this.

 

[Reds]

Reds - I'm awfully sorry to put it like this, but you're doing exactly the same as I was: trying to be too independent.

Believe me, please, when I say that help, and getting it are not bad things. I used to think I'd cope alone until the very end, but that was just not feasible. There came a time when even I had to admit defeat and allow the hospital people on our case to take over, and take over is exactly what they did, and it has been a blessing.

Are you a very private or timid person? If so, then I truly understand your reluctance to have people in your home. But what about you, Reds? Are you coping all right? You've come here for advice, which is truly courageous. Took me years to finally do that and join this site. Really don't know what I'd have done without the very capable and sensible people on here, who at times have been bold enough to give me a razzing! (Tell me off.) I dare not do that with you as I haven't had the pleasure of getting to know you yet. But I strongly advise you reconsider getting whatever help you can. You'll be surprised at the difference it might make.

Hi Chuggalug. Thanks for your reply. Yes I try to be independent and want to be able to always cope. I realise Alzheimer's is a terrible disease but I can't believe my husband has the behaviour problem. Have tried all sorts of ways to cope and I can't see what help there could be. I feel sad about it all, frustrated, low at times but still try to lead as much normal life as possible. I like to be private with people that are not familiar but husband gives them all the details, ages, where we live etc. I can be wary of people's characters but I am quite a good communicator.

Reds x

 

[Reds]

I am really sorry that your husbands behaviour in public makes you so stressed. The problem is he can't help it. He has lost his inhibitions and no amount of reasoning will change that. So if you don't want to keep him at home, and it's admirable that you don't, you need coping strategies. Please get in touch with your local Alzheimer's Society, Age UK and Carers Centre. They can give you practical tips how to handle him plus emotional support. I really think you need those assessments from social services. You cannot do it on your own. And call the Admiral Nurses or Alzheimer's Society helplines.

My OH used to randomly talk to strangers. Luckily he's a friendly person and most people understood. I used to apologise for him and mention his condition and they said: "Don't worry about it". If you don't want to talk about him in front of him, print out some small cards saying something like: "My husband has Alzheimer's. Please excuse his behaviour. He means well." And discreetly hand them over.

With regards to his groups, I don't think they encourage his behaviour. They might just let him be. I think a specialised day centre would be great for him. OH's day centre isn't fazed about anything.

If you want to spend time with him outside the house, have you considered assisted holidays? There are charities/companies like Revitalise and Dementia Adventure organising weeks specifically for carers and their loved ones, with nurses and volunteers to hand at all times. They organise day trips and walks etc and make sure everyone is safe and has a good time.

You are absolutely right that he should be able to still go out and enjoy himself. Let others help you in achieving this.

Hi again Beate. One of the group he goes to is a social type centre where he can sing, dance with others and I have been told by a volunteer that sometimes the others encourage him to be a bit 'crazy'. My husband used to come away from people if I called him but now he seems to have lost that reasoning its of much concern. We have had psychiatrists in the past giving us coping strategies but for example today whilst I don't like the idea I could have done with someone who could have forceably kept him from approaching the gathering. I really don't feel like being in a tea room or anywhere in public alone now. So sad when he obviously enjoys it and I like the whole idea but hate seeing and hearing his inappropriate behaviour as its too much. I will look up the holiday places again and although I am sure would be nice for my husband I am not sure if I could cope with being with others that have dementia as hard enough to see my husband ill with the disease, sorry if that sounds 'all me'.

Hope you ok too Beate.

Reds x

 

[Beate]

To be honest, I enjoy meeting people with dementia at the Thursday Cafe and Singing for the Brain. There are some really lovely people, some can still make conversation, some can't, but it doesn't matter. At the last holiday in Devon there was a lady with Alzheimer's who was very loud. She talked total nonsense all day long and you could totally see how it's exhausting looking after her 24/7. But at the same time she was so cheerful and I couldn't help being very fond of her. She was absolutely lovely, and in our little group she could say anything as everyone understood. I have made friends with carers and dementia patients alike and it's given me a greater understanding. There is a lot to be said about social environments where no one judges.
Can I also say that certain behaviour due to lost reasoning is sometimes only exhibited in phases - meaning he might stop doing it. The one thing about dementia is that it is unpredictable. OH has stopped complimenting mothers on their "classy pushchairs", though he still swears in appreciation of things. I've stopped minding that.

 

[Reds]

To be honest, I enjoy meeting people with dementia at the Thursday Cafe and Singing for the Brain. There are some really lovely people, some can still make conversation, some can't, but it doesn't matter. At the last holiday in Devon there was a lady with Alzheimer's who was very loud. She talked total nonsense all day long and you could totally see how it's exhausting looking after her 24/7. But at the same time she was so cheerful and I couldn't help being very fond of her. She was absolutely lovely, and in our little group she could say anything as everyone understood. I have made friends with carers and dementia patients alike and it's given me a greater understanding. There is a lot to be said about social environments where no one judges.
Can I also say that certain behaviour due to lost reasoning is sometimes only exhibited in phases - meaning he might stop doing it. The one thing about dementia is that it is unpredictable. OH has stopped complimenting mothers on their "classy pushchairs", though he still swears in appreciation of things. I've stopped minding that.

Thanks Beate for your honesty. What you write sounds good and that is how I would like to be. I have had so much stress recent years that I am not feeling my best so am finding certain things more difficult at the moment. Sounds awful but I keep hoping my husband will forgot about approaching people so much, its as though they all have magnets on them but I am hoping too that he won't deteriorate suddenly. Thank you for your messages and they do feel supportive x