I used to look forward to Bank Holidays...

[sarahsea]

That was when I had a job and had a life. Now, I work very part time from home, my husband was diagnosed with early onset Alzheimer's 18 months ago and I dread holiday times.
We live in a seaside town which is just heaving at the moment with the unexpectedly warm weather and for my husband, that means just one thing - lots of people to talk to! Whether or not they want to talk to him is another matter and something which he's unable to judge. He's also started to touch people as he approaches them, which isn't always well received. It's usually on the shoulder or back, but sometimes he strokes their hair. So far, he been pushed over twice by people trying to get away from him. I witnessed a young man yesterday screaming at him to **** off as my husband pursued him and his girlfriend down the road. I simply can't be with him all the time. Or, I could spend every day out on the street with him (up to 40 "walks" a day) and there'd be absolutely nothing done in the house. I tried taking him for longer walks, but he's not interested, he just wants to stand out on a busy road and talk to strangers. He can't follow conversations, so doesn't really know how they respond to him.
He's back to day care on Tuesday (goes 3 times a week) and although he'll be back home at 3.30 and will be out on the streets again soon after, at least I know that he's safe during the day. Maybe I should be pleased he goes out, when he's home it's back to back episodes of the Chase! I know it's the disease and not his fault, but sometimes I just look at our daily lives and wonder what happened.

 

[Cat27]

That’s very stressful for you @sarahsea.
I used to stand behind Dad mouthing he’s got dementia.

 

[Grannie G]

I used to follow my husband out @sarahsea but if your husband is in and out up to 40 times a day I can see this is impossible especially if you still have to work.

I know sedation will be discouraged but I would ask the GP if there`s anything which can be done to help you. I would also give the helpline a ring and see if anything can be suggested by them although they won`t be open until tomorrow.

National Dementia Helpline

0300 222 11 22


Helpline opening hours:

Monday to Wednesday

9am – 8pm

Thursday and Friday

9am – 5pm

Saturday and Sunday

10am – 4pm


I know how wearing this is . My husband used to go walkabout a few times each day but thank goodness avoided talking to people rather than approaching them.

Maybe back to back Chase is a better option although I know there is little you can do to control whether it`s The Chase or Walkabout.

 

[padmag]

That was when I had a job and had a life. Now, I work very part time from home, my husband was diagnosed with early onset Alzheimer's 18 months ago and I dread holiday times.
We live in a seaside town which is just heaving at the moment with the unexpectedly warm weather and for my husband, that means just one thing - lots of people to talk to! Whether or not they want to talk to him is another matter and something which he's unable to judge. He's also started to touch people as he approaches them, which isn't always well received. It's usually on the shoulder or back, but sometimes he strokes their hair. So far, he been pushed over twice by people trying to get away from him. I witnessed a young man yesterday screaming at him to **** off as my husband pursued him and his girlfriend down the road. I simply can't be with him all the time. Or, I could spend every day out on the street with him (up to 40 "walks" a day) and there'd be absolutely nothing done in the house. I tried taking him for longer walks, but he's not interested, he just wants to stand out on a busy road and talk to strangers. He can't follow conversations, so doesn't really know how they respond to him.
He's back to day care on Tuesday (goes 3 times a week) and although he'll be back home at 3.30 and will be out on the streets again soon after, at least I know that he's safe during the day. Maybe I should be pleased he goes out, when he's home it's back to back episodes of the Chase! I know it's the disease and not his fault, but sometimes I just look at our daily lives and wonder what happened.

Really feel for you Sarahsea. I too dread the bank holidays. Richards day care is 4 days a week but being Easter down to 3 days last week (actually 2 and half as bus service forgot him on one of those days). We go out together but his mobility is limited and he has to take my arm, which is a blessing in a way as he wants to talk to everyone he comes across. Sounds silly but we can only go to quiet places with wide paths to avoid other people. His latest habit is to copy what someone is saying when they pass by or are in our vicinty - I get lots of scowls from people! He also tells children off which is definitely not well received by others. Richard's day care is being increased to 5 days very soon which will help me enormously. Hope you get past the bank holiday without too many scrapes.

 

[Martarita]

That was when I had a job and had a life. Now, I work very part time from home, my husband was diagnosed with early onset Alzheimer's 18 months ago and I dread holiday times.
We live in a seaside town which is just heaving at the moment with the unexpectedly warm weather and for my husband, that means just one thing - lots of people to talk to! Whether or not they want to talk to him is another matter and something which he's unable to judge. He's also started to touch people as he approaches them, which isn't always well received. It's usually on the shoulder or back, but sometimes he strokes their hair. So far, he been pushed over twice by people trying to get away from him. I witnessed a young man yesterday screaming at him to **** off as my husband pursued him and his girlfriend down the road. I simply can't be with him all the time. Or, I could spend every day out on the street with him (up to 40 "walks" a day) and there'd be absolutely nothing done in the house. I tried taking him for longer walks, but he's not interested, he just wants to stand out on a busy road and talk to strangers. He can't follow conversations, so doesn't really know how they respond to him.
He's back to day care on Tuesday (goes 3 times a week) and although he'll be back home at 3.30 and will be out on the streets again soon after, at least I know that he's safe during the day. Maybe I should be pleased he goes out, when he's home it's back to back episodes of the Chase! I know it's the disease and not his fault, but sometimes I just look at our daily lives and wonder what happened.

This happened to us me and my husband it sound so familiar to me ,it's very hard on you as it was for me ,after months of walking the streets,7 days a week no let up , through the night too ,I too use to fear for his safety there was odd times I couldn't go out walking with him it was just too much for me no sooner we'd be in the house and then back out and he would try to have a conversation with people but most of his vocabulary had gone ,so I would finish up talking for him , it's so very sad and my heart goes out to you ,then things your came too a head , I finished up ill and now my OH is in a care home ,and I miss him so much it's unbearable, didn't want this to happen but after 4 year of caring it took its toll , its broken my heart ,I really do know what your going through,it's such a hard job to do you're not on your own there's always someone here for you on talking point .so please take care and my thoughts are with you .xx

 

[maryjoan]

That was when I had a job and had a life. Now, I work very part time from home, my husband was diagnosed with early onset Alzheimer's 18 months ago and I dread holiday times.
We live in a seaside town which is just heaving at the moment with the unexpectedly warm weather and for my husband, that means just one thing - lots of people to talk to! Whether or not they want to talk to him is another matter and something which he's unable to judge. He's also started to touch people as he approaches them, which isn't always well received. It's usually on the shoulder or back, but sometimes he strokes their hair. So far, he been pushed over twice by people trying to get away from him. I witnessed a young man yesterday screaming at him to **** off as my husband pursued him and his girlfriend down the road. I simply can't be with him all the time. Or, I could spend every day out on the street with him (up to 40 "walks" a day) and there'd be absolutely nothing done in the house. I tried taking him for longer walks, but he's not interested, he just wants to stand out on a busy road and talk to strangers. He can't follow conversations, so doesn't really know how they respond to him.
He's back to day care on Tuesday (goes 3 times a week) and although he'll be back home at 3.30 and will be out on the streets again soon after, at least I know that he's safe during the day. Maybe I should be pleased he goes out, when he's home it's back to back episodes of the Chase! I know it's the disease and not his fault, but sometimes I just look at our daily lives and wonder what happened.

How awful for you - I too work from home and know how difficult it is. I imagine you are also worried when he is out on his own that he will have an accident - especially if he is in the middle of the road. My OH does not go out all the time - just to play snooker - otherwise here all the time watching the Chase - he has found it on Challenge, and sometimes I wander into the room to find a very young looking Bradley Walsh on the TV ! But he also watches snooker - 12 hours sat in his chair the other day - there is nothing about this disease that is 'normal' and I think that is what throws me and many other carers like me......

 

[sarahsea]

That’s very stressful for you @sarahsea.
I used to stand behind Dad mouthing he’s got dementia.

That's a good technique @Cat27 and thank you for sharing it. If I'm with him, I tell people in front of him as I know that if I speak quickly and quietly he can't understand what I'm saying. Most people are kind, even if they don't understand how dementia affects behaviour. But some people are both unpleasant and stupid.
Recently a cafe owner screamed at me to keep my "crazy husband" out of her cafe. I asked her if she knew he has dementia and she said "yes, but that's no excuse." You can't argue with ignorance, so I didn't bother trying. I remind him every day not to go in there, but he has very little short or long term memory left, so he'll probably pop in again some time.

 

[sarahsea]

I used to follow my husband out @sarahsea but if your husband is in and out up to 40 times a day I can see this is impossible especially if you still have to work.

I know sedation will be discouraged but I would ask the GP if there`s anything which can be done to help you. I would also give the helpline a ring and see if anything can be suggested by them although they won`t be open until tomorrow.

National Dementia Helpline

0300 222 11 22


Helpline opening hours:

Monday to Wednesday

9am – 8pm

Thursday and Friday

9am – 5pm

Saturday and Sunday

10am – 4pm


I know how wearing this is . My husband used to go walkabout a few times each day but thank goodness avoided talking to people rather than approaching them.

Maybe back to back Chase is a better option although I know there is little you can do to control whether it`s The Chase or Walkabout.

Thank you @Grannie G. I don't feel that I'm coping very well at the moment and I am extremely anxious about his behaviour. He is operating slightly outside "social norms" and this makes him very vulnerable when he's out and about. Social Services agreed to pay for 3 days a week day care following a safeguarding referral, but I have to drive him to the centre (20 miles away) or pay volunteer drivers. This is eating into his PiP benefit and he doesn't qualify for anything else (he's 61.) I have requested another 2 days a week and I'm waiting to hear. The day centre is fantastic - lots of activities and a captive audience of over 20 people for him to talk to.
He's been on 150mg Trazodone for a few months, taken at night, which has stopped him waking up in the night convinced the Police are coming to get him, or worried about work, what happened to his house in London, where are we living etc, and his consultant has just increased this to another 150mg in the morning to deal with his anxiety. He started that a few days ago, so maybe that will make him less anxious and more relaxed?
Of course, he's not anxious about how people respond to him on the street (that anxiety is all mine), he's anxious about people coming from Europe to attack us because of Brexit and we live near a harbour, so they'll come in boats. He's anxious about the dull green light in our porch which I won't let him turn off at night (it's a fire alarm system). He's anxious about his heart and regularly tells me he's about to die. He's anxious when I drive him anywhere in the car. He's anxious that the man fixing the leak in the roof is going to steal from us. He's anxious that the nice people at the Glaucoma clinic are going to cut out his eyes. I could go on, but you get the idea.

 

[sarahsea]

Really feel for you Sarahsea. I too dread the bank holidays. Richards day care is 4 days a week but being Easter down to 3 days last week (actually 2 and half as bus service forgot him on one of those days). We go out together but his mobility is limited and he has to take my arm, which is a blessing in a way as he wants to talk to everyone he comes across. Sounds silly but we can only go to quiet places with wide paths to avoid other people. His latest habit is to copy what someone is saying when they pass by or are in our vicinty - I get lots of scowls from people! He also tells children off which is definitely not well received by others. Richard's day care is being increased to 5 days very soon which will help me enormously. Hope you get past the bank holiday without too many scrapes.

That must be so difficult @padmag if your husband was telling off other people's children! I also walk with my husband on wide paths where there aren't too many people. What I really hate is that people think I can control his behaviour. Obviously I can't.

 

[sarahsea]

How awful for you - I too work from home and know how difficult it is. I imagine you are also worried when he is out on his own that he will have an accident - especially if he is in the middle of the road. My OH does not go out all the time - just to play snooker - otherwise here all the time watching the Chase - he has found it on Challenge, and sometimes I wander into the room to find a very young looking Bradley Walsh on the TV ! But he also watches snooker - 12 hours sat in his chair the other day - there is nothing about this disease that is 'normal' and I think that is what throws me and many other carers like me......

It's very difficult @maryjoan , but everything about this horrible disease is hard. I do appreciate that some people are very kind and understanding and several local people keep an "eye out" for my husband, but the holidays times are the worst. Lots of people, many who've been drinking and my husband merrily walking into them, constantly touching people and making silly comments. It's the worry of not knowing how they'll react.
He still does his number puzzles and that keeps him occupied for a short while before he's off out again. It can only end badly, I think.

 

[sarahsea]

This happened to us me and my husband it sound so familiar to me ,it's very hard on you as it was for me ,after months of walking the streets,7 days a week no let up , through the night too ,I too use to fear for his safety there was odd times I couldn't go out walking with him it was just too much for me no sooner we'd be in the house and then back out and he would try to have a conversation with people but most of his vocabulary had gone ,so I would finish up talking for him , it's so very sad and my heart goes out to you ,then things your came too a head , I finished up ill and now my OH is in a care home ,and I miss him so much it's unbearable, didn't want this to happen but after 4 year of caring it took its toll , its broken my heart ,I really do know what your going through,it's such a hard job to do you're not on your own there's always someone here for you on talking point .so please take care and my thoughts are with you .xx

@Martarita thank you for your reply and I'm so sorry that you miss your husband so much. Sometimes there's just nothing more we can do and we have to let the professionals take over. I hope that he is settled in his care home and that you able to enjoy spending time with him without the worry of day to day caring. It is a very hard job and there are no simple answers. It seems like just when I find a way to deal with a current problem, then a bigger one comes along. I keep telling myself that I am not a health professional and I can only do my best. TP is a wonderful community full of people who really understand what it's like to care for someone with dementia. Since my husband's diagnosis it has been a fantastic resource for me.

 

[bmca]

Really feel for you Sarahsea. I too dread the bank holidays. Richards day care is 4 days a week but being Easter down to 3 days last week (actually 2 and half as bus service forgot him on one of those days). We go out together but his mobility is limited and he has to take my arm, which is a blessing in a way as he wants to talk to everyone he comes across. Sounds silly but we can only go to quiet places with wide paths to avoid other people. His latest habit is to copy what someone is saying when they pass by or are in our vicinty - I get lots of scowls from people! He also tells children off which is definitely not well received by others. Richard's day care is being increased to 5 days very soon which will help me enormously. Hope you get past the bank holiday without too many scrapes.

 

[maryjoan]

It's very difficult @maryjoan , but everything about this horrible disease is hard. I do appreciate that some people are very kind and understanding and several local people keep an "eye out" for my husband, but the holidays times are the worst. Lots of people, many who've been drinking and my husband merrily walking into them, constantly touching people and making silly comments. It's the worry of not knowing how they'll react.
He still does his number puzzles and that keeps him occupied for a short while before he's off out again. It can only end badly, I think.

Are you sure your OH is not MY OH? The Chase - number puzzles - all very familiar ha ha h a!

 

[Guzelle]

It reminds me of when my neighbour asked me to tell my cat not to poo on their garden. I did tell him but he wouldn’t listen!

Regarding the cafe owner not wanting him in the cafe!