Supposed to be taking mum to visit day centre today and dreading it

[annielou]

I'm supposed to be taking mum to visit local ageuk day centre this afternoon, mum has said a few times would try it but also is nervous and scared about it and often backtracks about going and has put off going.
Her main reasons for not going is she will get lost and not find it.
She has never had much sense of direction and never liked going to new places as worried will get lost. Also she is scared of going on buses alone. She stopped getting the bus on her own to my house last year, and would only get a bus to town from her stop where every bus goes same way. Then in january this year she stopped doing that and wouldn't go on bus at all. In last couple of months she has caught bus with me but thats it. To be honest I wouldn't want her to catch them alone as she would no doubt get lost. I have told her I will take her in a taxi and pick her up and if after a while she feels comfortable she could get community transport that pick her up n drop her at door.
Her answers to that are you can't keep doing that its not fair on you. I explain I am here with her full time at minute so getting a taxi with her to day centre and then gettin some time to go home or do something myself is actually better than now when I cant do that because with her 24/7. So then says well you'll go home sometime and then you'd have keep coming back here to take me there. So I mention community transport but she says but I dont know them.
Her other reason and this is I think the main reason, is shes scared. She is shy and not good with strangers and doesnt know how to talk to people. Mum is quite an opinionated person, quite bossy and likes things her own way but also is very self conscious and has little self confidence, she's always been like that but it has got worse in last couple of years since alzheimer symptoms started.
Unfortunately I am the same and can totally understand her fear of going to a centre full of strangers and people who probably have been going for a while and already know each other. I am dreading it too.
To be honest I am very tempted to give in to me and mums fears and not bother going. I am dreading having to talk to staff about it and will no doubt say something silly or miss something important as I usually do cos I am so nervous.
I'm worrying about what we'll do there will they just show us round tell us bit bout it or just let us in and expect us to sit and join in and ask questions.
How will I talk to other day centre members if they talk to us as I never know what to say either and also I'll be worrying about mum if shes ok and if she says something nasty. She has tendency to blurt things out. At care home visit she said in reception am not coming here they all look 106 right in front of two residents.
Even ordering and getting a taxi and having to talk to them freaks me out a bit. We caught taxis a few weeks ago to doctors for mums b12 injections and I hated it. Its also stressful getting mum out of house with her endless rounds of door checking and then all through the journey asking me have i locked doors and wheres my keys so we usualky arrive stressed out which is not best way to start another stressful situation.
I'm a total wimp and I'm pretty sure mum won't like day centre anyway so I feel like why put us through it. I know why, its the slight chance mum will agree to go and might actually get sonething good out if it and I might get a few hours off. Thats why I have talked to GP, SW, OT, memory nurse, carer support worker etc for mum in hope of helping her but so far feel like not done good job with any of it

 

[TNJJ]

I'm supposed to be taking mum to visit local ageuk day centre this afternoon, mum has said a few times would try it but also is nervous and scared about it and often backtracks about going and has put off going.
Her main reasons for not going is she will get lost and not find it.
She has never had much sense of direction and never liked going to new places as worried will get lost. Also she is scared of going on buses alone. She stopped getting the bus on her own to my house last year, and would only get a bus to town from her stop where every bus goes same way. Then in january this year she stopped doing that and wouldn't go on bus at all. In last couple of months she has caught bus with me but thats it. To be honest I wouldn't want her to catch them alone as she would no doubt get lost. I have told her I will take her in a taxi and pick her up and if after a while she feels comfortable she could get community transport that pick her up n drop her at door.
Her answers to that are you can't keep doing that its not fair on you. I explain I am here with her full time at minute so getting a taxi with her to day centre and then gettin some time to go home or do something myself is actually better than now when I cant do that because with her 24/7. So then says well you'll go home sometime and then you'd have keep coming back here to take me there. So I mention community transport but she says but I dont know them.
Her other reason and this is I think the main reason, is shes scared. She is shy and not good with strangers and doesnt know how to talk to people. Mum is quite an opinionated person, quite bossy and likes things her own way but also is very self conscious and has little self confidence, she's always been like that but it has got worse in last couple of years since alzheimer symptoms started.
Unfortunately I am the same and can totally understand her fear of going to a centre full of strangers and people who probably have been going for a while and already know each other. I am dreading it too.
To be honest I am very tempted to give in to me and mums fears and not bother going. I am dreading having to talk to staff about it and will no doubt say something silly or miss something important as I usually do cos I am so nervous.
I'm worrying about what we'll do there will they just show us round tell us bit bout it or just let us in and expect us to sit and join in and ask questions.
How will I talk to other day centre members if they talk to us as I never know what to say either and also I'll be worrying about mum if shes ok and if she says something nasty. She has tendency to blurt things out. At care home visit she said in reception am not coming here they all look 106 right in front of two residents.
Even ordering and getting a taxi and having to talk to them freaks me out a bit. We caught taxis a few weeks ago to doctors for mums b12 injections and I hated it. Its also stressful getting mum out of house with rounds of door chrcking and then all through the journey have i locked doors and wheres my keys so we usualky arrive stressed out which is not best way to start another stressful situation.
I'm a total wimp and I'm pretty sure mum won't like day centre anyway so I feel like why put us through it. I know why, its the slight chance mum will agree to go and might actually get sonething good out if it and I might get a few hours off. Thats why I have talked to GP, SW, OT, memory nurse, carer support worker etc for mum in hope of helping her but so far feel like not done good job with any of it

What happens if you become ill??
As much as you don’t want to take your mum to a day centre she needs to be around other people to give you a break.. Otherwise in all seriousness you will get burnt out.. One person can only do so much..

There are a lot of”what if”s in your narrative. You won’t know until you try it..

 

[Pete1]

Hi @annielou, I think any of us dealing with loved ones suffering from this disease are taken out of our own comfort zones in many different ways, there are lots of difficult challenges that we somehow have to overcome. This is another one for you and Mum. The potential pay-off is quite significant though. I think just be honest when you arrive and ask them to explain the process and facilities to you, ensure they have your contact details and leave Mum to it. I wish you all the best, let us know how you get on.

 

[kindred]

Hi @annielou, I think any of us dealing with loved ones suffering from this disease are taken out of our own comfort zones in many different ways, there are lots of difficult challenges that we somehow have to overcome. This is another one for you and Mum. The potential pay-off is quite significant though. I think just be honest when you arrive and ask them to explain the process and facilities to you, ensure they have your contact details and leave Mum to it. I wish you all the best, let us know how you get on.

I'm supposed to be taking mum to visit local ageuk day centre this afternoon, mum has said a few times would try it but also is nervous and scared about it and often backtracks about going and has put off going.
Her main reasons for not going is she will get lost and not find it.
She has never had much sense of direction and never liked going to new places as worried will get lost. Also she is scared of going on buses alone. She stopped getting the bus on her own to my house last year, and would only get a bus to town from her stop where every bus goes same way. Then in january this year she stopped doing that and wouldn't go on bus at all. In last couple of months she has caught bus with me but thats it. To be honest I wouldn't want her to catch them alone as she would no doubt get lost. I have told her I will take her in a taxi and pick her up and if after a while she feels comfortable she could get community transport that pick her up n drop her at door.
Her answers to that are you can't keep doing that its not fair on you. I explain I am here with her full time at minute so getting a taxi with her to day centre and then gettin some time to go home or do something myself is actually better than now when I cant do that because with her 24/7. So then says well you'll go home sometime and then you'd have keep coming back here to take me there. So I mention community transport but she says but I dont know them.
Her other reason and this is I think the main reason, is shes scared. She is shy and not good with strangers and doesnt know how to talk to people. Mum is quite an opinionated person, quite bossy and likes things her own way but also is very self conscious and has little self confidence, she's always been like that but it has got worse in last couple of years since alzheimer symptoms started.
Unfortunately I am the same and can totally understand her fear of going to a centre full of strangers and people who probably have been going for a while and already know each other. I am dreading it too.
To be honest I am very tempted to give in to me and mums fears and not bother going. I am dreading having to talk to staff about it and will no doubt say something silly or miss something important as I usually do cos I am so nervous.
I'm worrying about what we'll do there will they just show us round tell us bit bout it or just let us in and expect us to sit and join in and ask questions.
How will I talk to other day centre members if they talk to us as I never know what to say either and also I'll be worrying about mum if shes ok and if she says something nasty. She has tendency to blurt things out. At care home visit she said in reception am not coming here they all look 106 right in front of two residents.
Even ordering and getting a taxi and having to talk to them freaks me out a bit. We caught taxis a few weeks ago to doctors for mums b12 injections and I hated it. Its also stressful getting mum out of house with rounds of door chrcking and then all through the journey have i locked doors and wheres my keys so we usualky arrive stressed out which is not best way to start another stressful situation.
I'm a total wimp and I'm pretty sure mum won't like day centre anyway so I feel like why put us through it. I know why, its the slight chance mum will agree to go and might actually get sonething good out if it and I might get a few hours off. Thats why I have talked to GP, SW, OT, memory nurse, carer support worker etc for mum in hope of helping her but so far feel like not done good job with any of it

Crumbs, I do understand, this disease requires so much courage from us, little things can become an ordeal like leaving house has become for you.
You are not a wimp,no way. The day centre workers will be used to people blurting things out and being shy. Please try to trust that they will look after you. All fellow feeling and strength to you.
warmest, Kindred.

 

[annielou]

Mum asked when I got out shower what are we doing today? I said going to look at day centre after lunch.
Then mum said well i dont say same as you.
So I asked what she meant
she said well you think I have dementia and I don't.
So then she was saying she doesnt need go to day centre as doesnt think anything wrong and I told her its something for her to do and give me break but mum wasn't impressed and didnt want to go. So I said well dont, but you need try something mum because I cant keep doing this all day everyday.
Well I thought I might make appointment to go drs cos you think there something with me.
I told her we'd been drs already and she was surprised and still confused.
She wanted to know when and what had happened. So I showed her leaflets and folder given by memory clinic and told her theyd been and we'd been gps etc and she got her disgnosis letter out to read. And said oh I'm sorry love I thought you were just saying it.

 

[annielou]

Thanks @Pete1 @ TNJJ @kindred xxx

There are lots of what ifs in my post aren't there, and you're right I won't know unless I try.
Which is what I say to mum, and if by some miracle mum agrees to go the pay off will be great as I will get a few hours off and mum might actually have a bit of time where she isn't bored. Which is why even though I feel like so far I've not got us very far at any improvement in our situation I'll try my best to get mum to go and see it and keep my fingers crossed X both of us manage ok.
Thank you for your replies they mean a lot xxx

 

[Pete1]

Oh @annielou, it's so difficult you are in the dementia loop, until your Mum moves onto the next stage this will continue, it will be groundhog day going round in ever decreasing circles. I have found that although it isn't intentional dementia suffers (not by choice) are very selfish to their own needs and your Mum will be happy for groundhog day as it is 'comfortable' for her but unsustainable for you, she won't at her current stage translate the 'this isn't fair on you' to any action that will affect her. I hope you manage to persuade Mum to go this afternoon, if you can't don't get stressed about it either. I wish you both all the best.

 

[annielou]

Oh @annielou, it's so difficult you are in the dementia loop, until your Mum moves onto the next stage this will continue, it will be groundhog day going round in ever decreasing circles. I have found that although it isn't intentional dementia suffers (not by choice) are very selfish to their own needs and your Mum will be happy for groundhog day as it is 'comfortable' for her but unsustainable for you, she won't at her current stage translate the 'this isn't fair on you' to any action that will affect her. I hope you manage to persuade Mum to go this afternoon, if you can't don't get stressed about it either. I wish you both all the best.

Yep Pete1 It is groundhog day. I never liked that film and now I'm living it.
I get so tired of answering and explaining only to have to do it again. Mum just asked again what we're doing today and why and where it is.
The other day for five hours she was asking about the same thing. She may watch tv or something for a few minutes but then back to it. I tried escaping to the loo half a dozen times, made cup of tea, tried to talk about other things and so did hubby who was there for few hours of it but nothing could stop her.
I read the leaflets and it says its the first time of asking for mum and to repeat and not get angry but it doesn't tell me how to do that after five hours of the same thing.
How do people do it? Where do people get their patience from? Anyway I'll just keep telling myself I'm not the first and won't be the last doing this. I suppose I'll just plod on going round in circles feeling travel sick

 

[jugglingmum]

It took me some time to realise, but I couldn't discuss things with mum in the way I had before dementia - so I didn't. Not because I didn't want to include her but her brain could no longer discuss and understand.

So why not say we are going out for a visit to a cafe or something, and just take her.

Order taxi and just say we are going somewhere nice we might like, don't even tell her you won't stay with her, just take her.

I realised that discussion led to endless unanswerable loops.So I just changed subject. Your mum can't understand but it might be feeding her anxiety so try not to discuss diagnosis and just do things that are needed. I have found giving mum as little info as needed makes her a lot less anxious.

When you get to day centre be really positive and happy, pin a smile on.

You need this for your health so you need to make it work.

Hope it goes well this afternoon. Good luck

 

[Grannie G]

I agree with @jugglingmum.

Because many people with dementia, especially when they are at the stage of needing support services, they often lose the thread of information given and misunderstand the whole picture. This increases anxiety and fear.

I used to tell my husband as little as possible unless he asked a specific question. Then I would try to be as honest as possible but would also choose my words carefully.

I know this takes a lot of patience and understanding from carers, especially when they are stressed out, but it does help relieve additional stress in the long run.

I`ll keep everything crossed for you @annielou in the hope all goes ell.

 

[Vitesse]

Thanks @Pete1 @ TNJJ @kindred xxx

There are lots of what ifs in my post aren't there, and you're right I won't know unless I try.
Which is what I say to mum, and if by some miracle mum agrees to go the pay off will be great as I will get a few hours off and mum might actually have a bit of time where she isn't bored. Which is why even though I feel like so far I've not got us very far at any improvement in our situation I'll try my best to get mum to go and see it and keep my fingers crossed X both of us manage ok.
Thank you for your replies they mean a lot xxx

I hope it all worked out for you at the Day Centre. They have plenty of experience of introducing new people, so I’m sure you were fine. Our introductory visit to the Day Centre was successful, I had told my husband we were going somewhere to have a cup of tea. Do try to persuade your Mum to go, because you will enjoy the time to yourself. It didn’t work out for us as my husband refused to go after about 3 visits. I really wish he would have spent some time there to have a change of scene for both of us.

 

[annielou]

Thanks for your good advice and good wishes it was much appreciated. Xxx
I tried to be positive and kept my answers simple, short and positive when mum asked again over lunch and on way out to taxi where going and why and said its not her thing etc.
When we arrived at ageuk she asked again why are we here? I said We've come to look at day centre.
What for me to go to it?
Yeah you said you wanted to look.
Are you not coming, is it just me going?
I'm staying today, we've just come for a look and a chat about it today see if you want to come here.
Oh ok.
Unfortunately it didn't go well though.
We were met by manager who took us into room where around a dozen people were sat round tables starting to paint pine cones for christmas decorations and manager asked mum if she wanted to have a go. Mum said no thanks we've to go to hospital. I said no we're not we're not going anywhere else. Then mum said well we know where you are now so thank you and moved as if to leave but I didnt move and neither did manager who offered us a drink but mum said no. Manager explained a bit about room and building and mum said she'd been before and used to live near it. I said we'd not been before but mum said yes she had! She used to live down road. Think she was mixing it up with place she lived at other side of town when first married. Manager asked where mum lived now and mum said place we lived when I was growing up and had not lived for over 20 year.
Then mum said she knew the building because she used to clean it ?!?!?! Her boss used to ask her to clean up when they werent busy. ??? So manager asked her what did for a job which mum didn't really know answer to so she said a factory and then asked me what she did. I filled in what jobs did (none of which were anywhere near there but heyho) and we had little chat bout factories for a minute.
Mum made move again to leave so Manager asked if we wanted to ask anything, of course mum said no, so I asked what sort of things they did and then she asked mum type of things she liked to do which mum did answer but showed no interest in their activities, we talked a bit more about lunch times and medication, fees and what to do if mum wanted go and have trial day. So I did manage to ask what I wanted to know but mum showed no interest in it and acted like couldn't wait to get to leave. So manager gave me a leaflet with number on and said I could ring her for chat if I wanted to and I thanked her for her time, short though it was.
We were in there less than ten minutes.
After we left mum was saying she hadnt known why there or what gone for and not her thing joining in because she didnt know anyone. I said it had been a waste of time. Mum said well I dont know why we came I dont do things like that and i didnt know what we were here for. We had bit of a grumpy chat on way to bus and I did tell mum that if not going there would have to do something else as I needed a break, a bit of time for me and I couldn't keep doing it on my own for much longer as I'm at end of my tether. She said well go off then leave me alone I dont care.
We went back to my house afterwards and mum just kept asking where we'd been and why and she didnt know what she was there for. She didnt know those people or what doing. I asked her if could talk about it later as I was upset and frustrated from visit.
I tried distracting her with cup of tea, putting tv on, but none of it worked, it rarely does with mum. She just kept asking questions over and over for almost three hours. Where had we been and why, was it because i didn't want to see her anymore, should she stop coming to see me, asking what she did wrong and why did she need someone with her, over and over all mixed up with why was I staying, not knowing I was staying and alternating between being sorry and being annoyed at me.
There was lots of things said I think to make me say its ok mum I'm sorry I'll look after you, which when didn't get answer she wanted, she switched from sorry and got mad at me. It was exhausting and I admit I did get quite mad myself at times and did a lot of crying and asking if we could leave it till another time when she could understand a bit better and I was calmer. Not that it worked for a long time.
I don't think day care is going to work as mum will just keep forgetting why there each time and they aren't going to want her there disrupting others if acts how does with me and how she has acted when sw and ot have been here sometimes. I did tell her that if dont do that will have to do something else and it really only leaves paying carer to come sit with her for bit of time now.
I think that I am just going to have to arrange to pay a carer from an agency to come sit with her and hope they can put up with her being resistant and grumpy.
I don't like spending mums money but she has a couple of times in her 'I want help and to give you a break' moments said I can pay for her help with it . I have been hoping to avoid inevitable arguments would have if I arranged people come to house by hoping mum would agree or would try day care centre but thats not working and we're arguing and upset anyway now.

 

[Champers]

Unfortunately, she won’t understand “next time” but if it’s any comfort, when I lost patience and snapped at Mother, a couple of minutes later it was like it never happened to her although I beat myself up for days over my loss of control. The hardest lesson I have had to learn - and it’s taken me a while - you can’t reason with dementia. You can try and tell your mother that you’re tired, you need a break and why she is going to the care centre but she won’t be able to process that information and store it in the “logic” department. Even though they are sometimes able to reminisce, PWD seem to live in the immediate present. Two minutes later or even two minutes ahead are meaningless. They can only relate to what is right in front of them at any given point in time.

I’m not sure how others cope with it, but I’m having more success dealing with Mother by treating constant needs and wants like I would with a child. I don’t mean that to be patronising, it’s just that because the logical and experience part of the brain has weakened, instructions and requests have to be very specific and almost non negotiable. I don’t give her too much information, explain or ask her opinion beforehand. Otherwise, it seems to create an opportunity for resistance and confrontation. I’m deliberately vague; we’re just popping out for a bit, I’ll let you know in a minute, maybe - we’ll see.

My mother is now in a CH but when I visit is driving me potty about going home. There is no way she she can ever leave, but in her mind she is perfectly capable and talks about getting a job and moving back to Ireland. Im learning to say, oh, alright then, we’ll have a chat next time about that, let’s wait until the weather is a bit better etc. Even trying to give her something to look forward to became a bone of contention. I mentioned that her brother that she hadn’t seen for years was coming to visit. “Well, I won’t be here when he comes. I’ll have bought myself a new house.” Now, I don’t prepare her for anything. I just arrange things without even consulting her.

 

[annielou]

Thanks for your reply @Champers x
I find it so hard not to be logical and deal with mum now not understanding logic. I tell myself not to reason and explain, keep answers short and simple and distract her on to something else. But then she starts asking questions and just wont stop and no amount of short simple answers or trying to distract her works.
Then its like everything I've read goes out the window because its not working and I reword things, and try to explain, hoping to trigger some understanding , which of course it doesn't. So then I get more frustrated and so does mum.
I find it amazing that mum can't remember the answer I just gave her five seconds ago but I can leave room for five minutes (can't go for much longer as she follows me) and when I come back she'll go back to same conversation. She doesn't remember what's been said but remembers she wants to talk about it. Its like she recognises a need to know/talk about it but its never going to be satisfied because she can't understand it when we do.
So far I have not found one thing that can successfully distract mum away from a subject and she is always wanting to talk about what is wrong with her and what is being done about it , why we are doing this that and the other and how she doesnt want to do it.
Both SW and OT said mum is very persistent and hard to direct to or from a subject.
Either I am really bad at this or mum is really persistent, I think probably a combination of both.