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Alzheimer's sympton? Should we not go out?

Reds

Registered User
Sep 5, 2011
622
0
Hertfordshire
My husband was diagnosed with Alzheimer's and is now 60. The main problem is that he tends to approach people in public on a regular basis, he invades their space, behaves/speaks inappropriately and also says things that are embarrassing about me. Help cards have kindly been suggested but at the time they are not thought of and there hasn't seemed a good time to give them or to generally say my husband has an illness. My husband is fully aware about what he does.

Someone has suggested that I do not take my husband out for my own self preservation. However, we love our walks and there is not much else we can do as have to avoid restaurants, supermarkets etc. It looks like I will have to stop our favourite walk as children go there to feed the ducks. The only way I can avoid this dilemma is for us to go for very early morning walks. I won't necessarily find this easy. My husband loves going to tea rooms for tea and cake but it can be so embarrassing for me when he approaches people such as crawling on his knees up to a table or telling them something personal about me and my family.

I have tried to talk to friends and family about the situation but no one has offered to accompany us and already someone today goes on the defence and then I just feel worse.

I would like to know if there are many people that would leave their partner at home because of their behaviour in public. I have noticed it does worry other people at times when we are out and they give strange looks. I just think the walks are healthy for my husband too and think he would go downhill more quickly if I stopped them. Some people tell me not to worry about what others think and that there is dementia out there but I do worry, particularly when he won't stop behaving in an inappropriate way when I ask him to. We have been together for a long time now so I find this very hard. In one way I feel I should be thick skinned and make a life for myself in another way I feel I should help him as much as possible. He thinks it is not a problem and says its his sense of humour but that is the excuse he uses.

I have decided not to go on holiday with him again and have adjusted our lives lots but he is so good in many ways that this is still confusing. He loves talking about places to visit and holidays so this is really hard as what sort of life is it for both of us never to go out but I can't stand what he does regularly when he sees people. My husband seems to be magnified by people. I don't mind him talking to them and it does make his day but it doesn't make mine as I don't want him saying things out very loudly such as how my son and daughter don't like him talking to strangers or I don't, and that he hates any programs I watch on television, that I am only happy when he goes to the bank, our names, our address etc.

My husband can be considerate so it really is such a shame he has developed this kind of behaviour in public.

I would appreciate if any of you think it would be best if I kept my husband at home as much as possible or if you feel that is unacceptable even though I would put this matter as the worse problem I have ever had.

Thanks
 

Jan0702

Registered User
Aug 15, 2012
38
0
64
Elsenham, Essex
Hi, you can't stop going out it will drive you crazy, don't know if it will help but nr husband talks to.people and after a couple if minutes I can see the puzzled expression in their faces, at which point I normally smile at them and mouth sorry alzheimers, it normally works quite well.
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
It is extremely difficult for someone to say what they would or would not do in your situation because there are all sorts of things to consider.

It would be easy for me to say I would not go out any more because I am the sort of person who does not especially want to go out much and I would be quite happy staying indoors all the time. If mum had said personal things about me to strangers and crawled on her hands and knees you can be sure I would not have taken her out .

I wouldn't consider going out with someone who is going to exhibit strange or inappropriate behaviour constantly. But then i am not in a position where I have to do that - mum didn't do anything like you describe, she just took it out on us. I must say I avoided places where there might be children though as she would approach them and it scared them.

How about if you avoid the tea rooms and other places where you can't lead your husband away from people and stick to walks where he might behave as you describe but you know that people can just walk away if they choose. I agree that you should not have to remove someone with dementia from society but can you look on this as a temporary thing until things change, which they do with this illness.

I would also get some of those cards you mention and keep them in your pocket so that if the need and opportunity arises you have something to hand.

Do you have children? I would expect them to help out but would not really expect it from friends, being realistic. No, it isn't right but it is how things are.

So summing up, if you have children ask them for help , if you don't ask they might not realise. Continue for walks and carry the cards with you to use if you absolutely have to. Avoid enclosed places like tea rooms for a few weeks and see if things change.

and don't take any notice of this post if you don't want to!
 

Reds

Registered User
Sep 5, 2011
622
0
Hertfordshire
It is extremely difficult for someone to say what they would or would not do in your situation because there are all sorts of things to consider.

It would be easy for me to say I would not go out any more because I am the sort of person who does not especially want to go out much and I would be quite happy staying indoors all the time. If mum had said personal things about me to strangers and crawled on her hands and knees you can be sure I would not have taken her out .

I wouldn't consider going out with someone who is going to exhibit strange or inappropriate behaviour constantly. But then i am not in a position where I have to do that - mum didn't do anything like you describe, she just took it out on us. I must say I avoided places where there might be children though as she would approach them and it scared them.

How about if you avoid the tea rooms and other places where you can't lead your husband away from people and stick to walks where he might behave as you describe but you know that people can just walk away if they choose. I agree that you should not have to remove someone with dementia from society but can you look on this as a temporary thing until things change, which they do with this illness.

I would also get some of those cards you mention and keep them in your pocket so that if the need and opportunity arises you have something to hand.

Do you have children? I would expect them to help out but would not really expect it from friends, being realistic. No, it isn't right but it is how things are.

So summing up, if you have children ask them for help , if you don't ask they might not realise. Continue for walks and carry the cards with you to use if you absolutely have to. Avoid enclosed places like tea rooms for a few weeks and see if things change.

and don't take any notice of this post if you don't want to!


Thank you sistermillicent for replying. I feel that I should take your advice and I should have done this a long time ago. I was always wishing my husband would 'behave' himself in public. I should face up more to the reality and find a way of coping with this difficult situation. I am going to have to take one step at a time and will be challenging for me but your advice is sensible.
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,242
0
71
Dundee
I'm sorry I have no useful advice. I wondered if you have discussed this behaviour with his GP or memory clinic doctor. I don't know what help they could be but it wouldn't do any harm.
 

kingmidas1962

Registered User
Jun 10, 2012
3,535
0
South Gloucs
What immediately springs to mind are activities tailored for Alzheimers sufferers and their families although they may not be your cup of tea at all of course. My uncle's in the fairly early stages but does say and do quite embarrassing things. He and my aunt have a group of friends who know about his condition and have seen it progress and to a certain extent understand and accept it.

They recently started going to a group called 'singing for the brain' which is tailored to sufferers and family and unusual behaviour would not be unexpected there at all.

It may be though that you want to try and keep away from Alzheimers specific groups in which case I'd either try to tailor your walks to encounter less people - and I think the cards are a good idea. Shutting yourself away sounds like a last resort .....
 
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lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hello Reds
Sorry no advice as Luckily I have not been in your situation.

I have however been approached by people who acted strange, I guess many of us have.
before mum developed dementia, I simply assumed the person was ill and couldnt help it, now I know it could possibly be dementia.

I know its easy for me to say try not to be embarrassed etc, but I am wondering that, that could be part of the fun, for your husband ?. I hope I havent upset you by saying this.

I am wondering if you could get a befriender for your Husband who would take your husband for a walk, if so that would be one walk you won't be on tenterhooks
 
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BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
I would recommend you phone the local branch of the Alzheimer's Society. You can find your local one here - do not be put off if they seem a distance away as they usually cover a wide area.They possibly run 'cafes' which are meeting places for sufferers and/or csrers. Ours were in the form of coffee mornings, pub lunches or general get togethers. There we were able to meet up with others in the same situation, accepting the problems as they were.

As Kingmidas has said, some run Singing for the Brain groups which are excellent.

I also would carry the cards around with you. You could hand them in to the favourite coffee places ahead of a visit then at least they would understand. When passing a card to someone could you gently explain to your husband that it is to avoid the person being offended by his chatting to them.

I believe it is important to keep up outside contacts, not just for your husband but for yourself too.

Best wishes
 

FifiMo

Registered User
Feb 10, 2010
4,705
0
Wiltshire
Hiya Reds,

Do you drive? Rather that the local park which seems to be a popular place could you perhaps look and see if there are any country walk nearby. I found a local forestry walk last weekend and took the dogs up there. I walked for miles and never saw another person and at this time of year all the trees changing colour was just amazing. Instead of the tearoom you could pack a picnic for you both. If your husband talks of travelling then the change of location and the drive first might seem like a bit of an adventure for him too. Maybe you can find a local place where you feel more comfortable.

In answer to your question about whether you should leave hubby at home, my advice would be to only engage in something that you feel comfortable with. The situation must be so stressful for you and you are limited in what your response can be as you can't just walk away and leave him to it. The only other alternative would be to see if there is a branch of crossroads near yoo that might provide you with someone for a couple of hours a week that could go out with you both. Maybe your husband would be more reserved if there was a stranger there. Another option could be to see if there is a ramblers association group that you could get to know and who would accept your husband and all his behaviours. There is a lot of power in the group and they could provide you with valuable support too. Then you might have choices eg if you're having a bad day at home then you might decide to go out with the group on your own.

I remember when my mother had an obsession with babies in prams and would charge off to stick her head in to any pram that was passing! I have to say that people were very tolerant of her once I explained the dementia but that didn't necessarily deal with my stress levels when I was out with her. It was like I was on edge for the day that someone wasn't tolerant and rightly stepped in to defend their child. At the time I just got on with things and it is only looking back that I notice the stress tha was all around.


Fiona
 

kingmidas1962

Registered User
Jun 10, 2012
3,535
0
South Gloucs
My uncle is quite, erm, saucy (as my aunt puts it) but as I said they have a group of friends who have known them a long time and most of them take it with a pinch of salt, but some have been offended by what he has said.

I've heard great things about dementia cafes and I wish my mum had been as forward thinking as you are, as my dads social life (and hers) dwindled down to nothing before he went into care but had he gone along to things like this I think he would've enjoyed it - and mum might too - and she might've made friends who would have stayed with her when things got more difficult.
 

Wiltshiregirl

Registered User
May 17, 2012
4
0
I have this problem to a much lesser degree. Sometimes the friend I care for uses quite inappropriate language when out in public, aimed mainly at adults she perceives as being rude, but sometimes at children too, which is worse obviously! I know why she does it, but that doesn't really help when she says something rude quite loudly, and I do get embarrassed!

However, I also think that we can't not go out. She loves going out and it's good for her, but I am thinking that if it gets worse or happens more often, then I will just have to avoid taking her to places where this is likely to happen. I don't want to keep her away from people at all, but I know there are certain places/situations where she is more likely to say something inappropriate than others, and if she's in a certain mood, it is also more likely. She also just has to stop and talk to everyone who has a dog or a baby, which can be a bit much sometimes as a lot of people have dogs and babies where we are...

As well as trying to work round this problem, I am also thinking that I am just going to have to apologise quietly and say that she has Alzheimer's.

welcometothefray.blogspot.co.uk
 

artyfarty

Registered User
Oct 30, 2009
267
0
London
Hi Reds. I've also had this problem a little with my mum. It's mainly on public transport for some reason. She gets very anxious that she won't get a seat - to the extent that she once rudely demanded a pregnant woman give up her seat for her. I was so embarrassed I could hardly explain to the woman. Fortunately the guy in the next seat gave up his seat for the pregnant lady. But then, of course, we had a 40 minute journey with the whole carriage looking daggers and my mum happily oblivious. I wanted to die right there.

I do try and avoid taking her on public transport if at all possible now and have become more adept at the mouthed 'sorry, altzheimers!' apology. It would be so much easier if it were obvious she were ill.

I do feel for you and hope you can find a workable compromise.
 

Reds

Registered User
Sep 5, 2011
622
0
Hertfordshire
Thank you for your comments which are most helpful. I feel for anyone experiencing dementia and for their friends and families. I expect I will go out with my husband again soon but for my own sanity I will have to avoid many places. I used to take for granted that going out was easy but this disease has unbelievably restricted what 'I' can now do. My husband who has the actual disease is happy! I live in a town and although near to countryside it is very difficult to avoid children's play areas, football fields, pubs, restaurants, supermarkets/shops, walking groups, running groups, open garden days, people getting in and out of cars, in and out of houses, bus stops, dog walkers and the list can go on! I am very limited as to where I can happily walk with my husband. Yes we could drive somewhere but I only like my husband to drive short familiar routes and he would rather do the driving so I avoid this too! I will have to hope that the park near us will be quiet when we walk and I will have to make an effort to go as early as possible in the morning. We love visiting tea rooms but because my husband has approached strangers for such a long time now I am not sure if I have the energy to cope with it any longer. I find it hard already not to be able to do certain things together so will be very hard to stop the only treat of having tea and cake in a tea room when we have an opportunity. Again I have to think of reality as it is all stressful for me and I have done my upmost to manage and help my husband in this situation.

Hopefully something will help this situation soon. Thanks again.
 

MReader

Registered User
Apr 30, 2011
191
0
essex
I know this is not much help to you at the moment, but my husband's GP told me 4 years ago that as his dementia progressed, my life would get easier.
Sure enough this happened with my husband's social interaction but life got much harder in other ways as he cannot do much for himself now.
Keep going out and do tell people what his problem is - most people are very understanding and go on talk about their friend/relative who has dementia. Most people are aware that it is quite an epidemic with us all getting older as a nation and are sympathetic..
My husband was very resistant to me telling other people but I took the view that it was better to annoy him than upset me & other people. I tried to do it quietly & gently but if necessary, just came out with it in front of him.
He now goes to a day centre twice a week where they talk openly about dementia & Alzheimer's and my husband is very accepting of this. It was quite a revelation to me!!
 

Reds

Registered User
Sep 5, 2011
622
0
Hertfordshire
I know this is not much help to you at the moment, but my husband's GP told me 4 years ago that as his dementia progressed, my life would get easier.
Sure enough this happened with my husband's social interaction but life got much harder in other ways as he cannot do much for himself now.
Keep going out and do tell people what his problem is - most people are very understanding and go on talk about their friend/relative who has dementia. Most people are aware that it is quite an epidemic with us all getting older as a nation and are sympathetic..
My husband was very resistant to me telling other people but I took the view that it was better to annoy him than upset me & other people. I tried to do it quietly & gently but if necessary, just came out with it in front of him.
He now goes to a day centre twice a week where they talk openly about dementia & Alzheimer's and my husband is very accepting of this. It was quite a revelation to me!!


Thanks again. Rarely have I mentioned in public my husband has an illness. Its like I kind of freeze. If we go near a lake that we enjoy I tend to walk well away from anyone hoping that my husband would stand near me or follow me. However, hard I try to accept that he has an illness I still find that I am positive and treat him normally but that is not always a good thing. I feel better than I did at the weekend but I find our normal working days are better as they have structure but our weekends do not really. As I have said before I had to wait for workman to call round at the moment but sometimes they don't turn up so its hard to plan. Will be better when our house has been more updated which is what we are trying to do for the future. I have got to avoid a lot more places so will try to take my husband out for early walks. Whilst he seems to enjoy going right up to people and joking etc I also think it does affect him as he just doesn't know how else to be now. I know he finds it hard to absorb lots of information so this might be why he behaves in such away. It has been enormously stressful and confusing to me and his family as can seem so normal at other times. I know its terrible but I would like him to forget going up to strangers!

Reds