Who am I ? I won't know myself soon!!!

[Bikerbeth]

Thanks again @Hil76 x

After over 6 hours today of mum questioning who i am and trying to catch me out as she insists I am not her daughter and her going to bed annoyed at me she got back up all upset as she thinks shes been confused and cant work out if i live here or not.
x

I was reading the ‘So bizarre’ thread p342 written by Ann Mac last night and someone mentions this issue which Slugsta mentions it is called Capgras Syndrome. They mentioned that searching on that name might give some helpful info and I just wondered if it might help you too.
I am afraid me and my brother just told Mum that if she did not allow us to have Power of Attorney SW’s would make all the decisions about her health, finance etc and there would be nothing me and brother could do. I think she agreed as she thought me and brother were the lesser evil. Mum was still at a fairly early stage at this time.
I really hope that your Mum will agree to the Carers so that at least you might get some sort of break

 

[annielou]

Thanks @Bikerbeth x just googled it and does read a bit like mum. She is just in the middle of thinking I'm not me again. I don't look or sound like her. And don't do what Andrea would do.
Unfortunately on piece I googled the suggestions on how to care for someone with it suggest joining their reality and going along with it which we have tried but at same time as saying I'm not me she also disagrees with whatever we agree with.
It also suggests leaving the room and letting someone else take over while the delusion lasts but there is no one else and I've tried leaving room for short time and coming back saying I'm me or changing subject and acting like all is fine and that rarely works either.
She also thinks I dont sound like me as well as not look like me so when I try to call her mum and say who I am she doesnt believe me either.
Yesterday I tried distracting her when she first started questioning who i was by asking about her knitting which would get her to look other way, and distract her and change subject as had been suggested before. Well she knocked glass of water over onto sofa onto knitting etc which wasnt effect i was after. And didn't work anyway cos once we'd tidied up she went straight back to questioning. I swear nothing blooming works. Its impossible for both of us.
I'll keep trying though and look for the post on here and do a bit more googling see if I can find anything else about it that might help.
Thanks for the suggestion, x I think I'll mention it to memory nurse when she gets in touch too see what she thinks

 

[DesperateofDevon]

Thanks @Bikerbeth x just googled it and does read a bit like mum. She is just in the middle of thinking I'm not me again. I don't look or sound like her. And don't do what Andrea would do.
Unfortunately on piece I googled the suggestions on how to care for someone with it suggest joining their reality and going along with it which we have tried but at same time as saying I'm not me she also disagrees with whatever we agree with.
It also suggests leaving the room and letting someone else take over while the delusion lasts but there is no one else and I've tried leaving room for short time and coming back saying I'm me or changing subject and acting like all is fine and that rarely works either.
She also thinks I dont sound like me as well as not look like me so when I try to call her mum and say who I am she doesnt believe me either.
Yesterday I tried distracting her when she first started questioning who i was by asking about her knitting which would get her to look other way, and distract her and change subject as had been suggested before. Well she knocked glass of water over onto sofa onto knitting etc which wasnt effect i was after. And didn't work anyway cos once we'd tidied up she went straight back to questioning. I swear nothing blooming works. Its impossible for both of us.
I'll keep trying though and look for the post on here and do a bit more googling see if I can find anything else about it that might help.
Thanks for the suggestion, x I think I'll mention it to memory nurse when she gets in touch too see what she thinks

sometimes no matter what you do nothing helps!
I find by locking myself in the loo & jumping up & down energetically while grinding my teeth gives me enough adrenaline to come out smiling ( through gritted teeth!)

not a pretty image but hey it works for me - on occasion!!!

sending (((((((hugs)))))))) & admiring the bucketfuls of patience you have. honestly I don’t think I’d have a hair left on my head by now!
xx

 

[Bikerbeth]

sometimes no matter what you do nothing helps!
I find by locking myself in the loo & jumping up & down energetically while grinding my teeth gives me enough adrenaline to come out smiling ( through gritted teeth!)

not a pretty image but hey it works for me - on occasion!!!

sending (((((((hugs)))))))) & admiring the bucketfuls of patience you have. honestly I don’t think I’d have a hair left on my head by now!
xx

Jumping up and down in the loo - That made me smile

 

[annielou]

sometimes no matter what you do nothing helps!
I find by locking myself in the loo & jumping up & down energetically while grinding my teeth gives me enough adrenaline to come out smiling ( through gritted teeth!)

not a pretty image but hey it works for me - on occasion!!!

sending (((((((hugs)))))))) & admiring the bucketfuls of patience you have. honestly I don’t think I’d have a hair left on my head by now!
xx

Like @Bikerbeth I smiled too when I read that
Not sure mums bathroom floor could cope with me jumping up and down on it though, it flexs and creaks like mad when you walk on it and me jumping on it would have mum running in to see what was up. But next time I'm hiding in there I'll think of you jumping up and down.
I do think I've started grinding my teeth as some days I wake up with an achey jaw and sensitive teeth.
I've been the 'friend' and been questioned about me most of day again today. Shes spent half the day in her address book ringing my house and moaning that I haven't been to see her or rung in ages. Then at about 1/2 past 4 she suddenly asked me are you our Andrea ? and she knew I was me again. But she thinks the 'friend' was here earlier and she went without saying bye to mum.
When hubby came adter work mum thinks he is 'friends' hubby who has recently started seeing me. Doesnt remember my wedding, or know where I live and so since then she has been asking us questions about it. How long have you been together, didn't you used to be married to 'friend', where do you live now, will you take me to see your house, why didnt you tell me you were married, did i go to wedding, you'll have to show me photos, does sis know you got married.
When not questioning me or informing me I cant be me she has told me alsorts of mixed up made up stories today. Not much of what she has said was real but to her it has been, I've just tried to along with the stories

 

[annielou]

Thinking of @DesperateofDevon jumping up and down and grinding her teeth in the bathroom to relieve stress made me smile at the image although its not funny to feel the need to do it. This dementia is a real pain to cope with.
It reminded me of 20 years or so ago when I used to line all the sofa cushions up at home and punch them when I used to get het up at work. Don't have that sofa now unfortunately but I could sure do with it. I have always liked the idea of a punch bag or one of those dummies that you can punch. If I had one now I'd put a big D on it and pummel it to death. D for dementia not dunce. Maybe the Social Services should hand them out free.

 

[DesperateofDevon]

Thinking of @DesperateofDevon jumping up and down and grinding her teeth in the bathroom to relieve stress made me smile at the image although its not funny to feel the need to do it. This dementia is a real pain to cope with.
It reminded me of 20 years or so ago when I used to line all the sofa cushions up at home and punch them when I used to get het up at work. Don't have that sofa now unfortunately but I could sure do with it. I have always liked the idea of a punch bag or one of those dummies that you can punch. If I had one now I'd put a big D on it and pummel it to death. D for dementia not dunce. Maybe the Social Services should hand them out free.

I spend a lot of time pacing the floor when on the phone to social services! I’ve worn a path!!!!!

 

[DesperateofDevon]

Like @Bikerbeth I smiled too when I read that
Not sure mums bathroom floor could cope with me jumping up and down on it though, it flexs and creaks like mad when you walk on it and me jumping on it would have mum running in to see what was up. But next time I'm hiding in there I'll think of you jumping up and down.
I do think I've started grinding my teeth as some days I wake up with an achey jaw and sensitive teeth.
I've been the 'friend' and been questioned about me most of day again today. Shes spent half the day in her address book ringing my house and moaning that I haven't been to see her or rung in ages. Then at about 1/2 past 4 she suddenly asked me are you our Andrea ? and she knew I was me again. But she thinks the 'friend' was here earlier and she went without saying bye to mum.
When hubby came adter work mum thinks he is 'friends' hubby who has recently started seeing me. Doesnt remember my wedding, or know where I live and so since then she has been asking us questions about it. How long have you been together, didn't you used to be married to 'friend', where do you live now, will you take me to see your house, why didnt you tell me you were married, did i go to wedding, you'll have to show me photos, does sis know you got married.
When not questioning me or informing me I cant be me she has told me alsorts of mixed up made up stories today. Not much of what she has said was real but to her it has been, I've just tried to along with the stories

Bless you - not an easy day
(((((Hugs)))))

 

[Bikerbeth]

It must be so hard on you not being recognised as you. Mum has only not recognised me twice as me - as in asked OH where I was when I was sitting next to her. Certainly the first time I was so shocked so it must be so horrible when it is so relentless for you. If I see any helpful info on it I will let you know but it appears you have tried many of the suggestions already. Mum used to mix me up quite a lot with her sister but not so much since her sister died.
Large foam ball to chuck around but perhaps not enough space at your Mum’s. Virtual hugs to you for being the incredible person you are.

 

[annielou]

It must be so hard on you not being recognised as you. Mum has only not recognised me twice as me - as in asked OH where I was when I was sitting next to her. Certainly the first time I was so shocked so it must be so horrible when it is so relentless for you. If I see any helpful info on it I will let you know but it appears you have tried many of the suggestions already. Mum used to mix me up quite a lot with her sister but not so much since her sister died.
Large foam ball to chuck around but perhaps not enough space at your Mum’s. Virtual hugs to you for being the incredible person you are.

Thank you thats so nice. X
I wonder if maybe i give up too easy or dont think quick enough and react too emotionally. I could probably do with a 'looking after someone with dementia' version of 'supernanny', the tv show where a former nanny came in and helped parents find ways to parent more effectively. I'm not saying mum is like a naughty or misbehaving misunderstood child, but I could do with someone a 'supercarer' to show me some ways to stop and keep calm and not get upset or angry when mum is so I can help her calm down instead of making things worse.
So thats a punching dummy and a 'supercarer' I'd like now.
Wonder what else ?
Hugs back to you Bikerbeth & DoD and everyone who has commented or read my rambly posts and everyone on TP (x)

 

[canary]

I think there are some things that even a "supercarer" wouldnt be able to sort out and I think maybe trying to help someone who is upset because her daughter isnt there, even though the daughter is stood right in front of her, is one of those things
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))

 

[Woo2]

They aren’t rambly at all @annielou , I do agree with everything you said , I wish someone would come and teach me how to deal with the different aspects of dementia , we wouldn’t start a new job without being taught how to do it ! But here we are doing a job that we have no training for and no pay either . It’s tough. I have registered for the wicking understanding dementia course so hoping that helps a little, have you seen that ? It was on a thread I saw it and registered interest and they emailed me last week to register . There are some courses day ones I think dotted about the area where we live , can’t get out to do them so this one is online . I’m hopeful I will learn something , though my brain seems to struggle so I don’t know how it will go. You are doing brilliantly, I think your hubby is pretty amazing too . Can you bite the bullet again and take mum to day centre or get transport so they will pick her up and drop her home ? Could you get carers and stay there at least until they get used to each other and then gradually increase your time away ? Just remembered you don’t drive so prob not convenient to nip out for half an hour or so at a time and gradually build it up. What does your sister thing long term ? Does she agree you need to go back home ? X

 

[annielou]

I think there are some things that even a "supercarer" wouldnt be able to sort out and I think maybe trying to help someone who is upset because her daughter isnt there, even though the daughter is stood right in front of her, is one of those things
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))

Yep probably too much to ask
(X)

 

[DesperateofDevon]

Yep probably too much to ask
(X)

Can you imagine the program... it would show a composed tv personality
“ supercarer “ slowly dissolving into stressed disheveled wreck over a 48hr period; begging the film crew to help ! Not sure that sort of reality TV has got a market yet mainstream but I’d watch it! No parachuting in with a naughty step, or taking away favourite toys or activities allowed, oh let’s not forget that nighttime activity or dementia related everyday needs!

Yep a toddler is definitely easier at least you can wear them out!

 

[annielou]

They aren’t rambly at all @annielou , I do agree with everything you said , I wish someone would come and teach me how to deal with the different aspects of dementia , we wouldn’t start a new job without being taught how to do it ! But here we are doing a job that we have no training for and no pay either . It’s tough. I have registered for the wicking understanding dementia course so hoping that helps a little, have you seen that ? It was on a thread I saw it and registered interest and they emailed me last week to register . There are some courses day ones I think dotted about the area where we live , can’t get out to do them so this one is online . I’m hopeful I will learn something , though my brain seems to struggle so I don’t know how it will go. You are doing brilliantly, I think your hubby is pretty amazing too . Can you bite the bullet again and take mum to day centre or get transport so they will pick her up and drop her home ? Could you get carers and stay there at least until they get used to each other and then gradually increase your time away ? Just remembered you don’t drive so prob not convenient to nip out for half an hour or so at a time and gradually build it up. What does your sister thing long term ? Does she agree you need to go back home ? X

Good luck with the course x
I'd seen some on Facebook ads but like you can't get out to do them at moment. Maybe if sort carers and they free me up some time or if me staying home overnight works out I could do an online version too.
Sis agrees I should go home but also knows mum not good on her own so we arent really sure what to do other than try it. We both think SS will at best only offer few short carer visits a day and nothing at night so will have to try going home sometime.
I had thought I'd start and go home tonight but I don't know if I dare. Especially as she is so often sure I'm not me and her daughter Andrea is someone else who she hasn't seen lately. I think she will keep ringing me all the time like she does when I'm here but if I'm home and answer she will want me to come over and then I'll not be me.

 

[annielou]

Can you imagine the program... it would show a composed tv personality
“ supercarer “ slowly dissolving into stressed disheveled wreck over a 48hr period; begging the film crew to help ! Not sure that sort of reality TV has got a market yet mainstream but I’d watch it! No parachuting in with a naughty step, or taking away favourite toys or activities allowed, oh let’s not forget that nighttime activity or dementia related everyday needs!

Yep a toddler is definitely easier at least you can wear them out!

It would sure make interesting viewing and no doubt be very upsetting to watch too.
And yep a toddler can at least eventually learn things through repeated behaviour. If you tell a toddler something enough times eventually they remember it but mum never will.

 

[Woo2]

Good luck with the course x
I'd seen some on Facebook ads but like you can't get out to do them at moment. Maybe if sort carers and they free me up some time or if me staying home overnight works out I could do an online version too.
Sis agrees I should go home but also knows mum not good on her own so we arent really sure what to do other than try it. We both think SS will at best only offer few short carer visits a day and nothing at night so will have to try going home sometime.
I had thought I'd start and go home tonight but I don't know if I dare. Especially as she is so often sure I'm not me and her daughter Andrea is someone else who she hasn't seen lately. I think she will keep ringing me all the time like she does when I'm here but if I'm home and answer she will want me to come over and then I'll not be me.

I can understand your dilemma , it’s easier to stay rather than go and have to come back , it’s a very hard situation and not one I would want to be in, you are doing amazing . I agree , it will be at most 4 visits a day, that will help but it will be the in between visits which is a big proportion of the day . I hope it’s a more peaceful day for you and that you get to see your hubby . X

 

[DesperateofDevon]

Good luck with the course x
I'd seen some on Facebook ads but like you can't get out to do them at moment. Maybe if sort carers and they free me up some time or if me staying home overnight works out I could do an online version too.
Sis agrees I should go home but also knows mum not good on her own so we arent really sure what to do other than try it. We both think SS will at best only offer few short carer visits a day and nothing at night so will have to try going home sometime.
I had thought I'd start and go home tonight but I don't know if I dare. Especially as she is so often sure I'm not me and her daughter Andrea is someone else who she hasn't seen lately. I think she will keep ringing me all the time like she does when I'm here but if I'm home and answer she will want me to come over and then I'll not be me.

You really do need to be brave & ring the Clinical mental health team for an upto date assessment/ visit. The GP & District nurse as well as social services should be involved. My Mum is now on medication & has carers coming in 4 times a day, you need help. Also when paramedics have attended we have had offers of night time assistance.
You need help as otherwise you are going to become ill with this constant stress! That’s harder to recover from than you realise believe me, I’m struggling with health & mental health & family relationships are almost non existent!

No one can be made to sell their home for care, contact the diagnosing Clinical mental health team first rather than social services & speak to them; care is available at home & the CMHT can advise how & when this is appropriate & how to avail yourselves of it. I’ve got it sorted out for Mum.

 

[DesperateofDevon]

I can understand your dilemma , it’s easier to stay rather than go and have to come back , it’s a very hard situation and not one I would want to be in, you are doing amazing . I agree , it will be at most 4 visits a day, that will help but it will be the in between visits which is a big proportion of the day . I hope it’s a more peaceful day for you and that you get to see your hubby . X

The social interaction of carers breaks u the day & also provides a different stimulant. Mums cognitively stimulated by these visits & they also tire her & provide a rhythm to the day; it’s along with meds helped & though confusion still is an issue the care package has transformed her routine & our lives, more than I would have credited. An adjustment period of several months but unbelievable in the difference it makes

worth a try
Xx

 

[annielou]

@DesperateofDevon We're waiting for SS to do reassessment of mum, SW rang yesterday to arrange visit but I missed them so hopefully manage to catch them on Monday. Also spoke to mums support worker at memory clinic early this week about mums confusion and agitation and she has filled in a form to give a nurse there so she can contact us to see if anything can give mum or if tablets need changing I think but not heard from nurse yet. Its such a waiting game.