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

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Mum is in a you can go home love I'm ok on my own and other loops mood . Just write my tablets down for me and put em on fireplace I'll be alright. You can't stay here all the time. I was going to read when you went. We've only ham for lunch and dont know if we've any bread. I'm fine on my own.
If only that were true.
She got up this morning oohing and aahhing even more than usual said she hadn't slept well and then said she had pain in her chest on one side then the other then rubbed her tummy. I asked if wanted me make the tea 'no I can do it am fine' went off more oohing and aahing but that stopped to eat her biscuits and didnt start again. No mention of any pain since so hopefully nothing.
Then she asked are you my daughter? Yes. Is it Andie? Yes. Did you sleep here? Yes. Have you not been coming to see me? Yes I'm here I see you all the time. I thought you'd not been coming to see me only sleeping here cos I didn't think I'd seen you only when I got up.
Then she asked who else had been coming, had friend been? So I said just me, hubby and sis sometimes. Then she said why would friend come cos we're not friends now are we? No not anymore.
Then she was talking about changing her bed today but after
her shower she'd taken towels and bathmat out of bathroom to wash instead and made her bed up as normal and when I asked her if wanted help doing her bedroom when I came out of shower she said no I said I'd do it tomorrow.
Then she was dusting odd thing here and there so I said are you busy mum? No not really am just pottering about for something to do cos nothing to do today.
When I asked her to come take her vitamins a bit later she said I thought I'd taken em. Not to today mum. Are you sure. Yes mum.
It was ten minutes or so after that she started with Are you going home today? and I said tonight (thought might try putting thought in head I wasn't staying) she said you can go now if you like I'm fine on my own. Etc etc.
We had a round of are you our Andrea ? Yeah. Where do you live? Oh our Andrea lives there.
Bit of a gap for ten minutes knitting which she did wrong and pulled out, went and put towels on airer then back to have you been sleeping here? Well you can't do that forever I'll be fine on my own. I'm ok.
Then sis text to ask how mum is and mentioned something else. Mum asked what I was doing so I said replying sis. Asked what said so told her news and that she had asked how mum was. What did you tell her? I said usual.
So then started a couple of rounds of she doesnt come to see me. She came weekend before last. She doesn't ring me. She rings every saturday. She texts you but never asks how I am. She just did she asks every day. How do you know, you don't live here. No mum but I've been staying here and hear her ring. So that was another round of you cant do that forever I'm fine on my own.
Then a brief pause and we were back on are you our andrea? Yeah. When did you come did you stay here. Yeah. I wonder if our andie will come today, she might not cos its raining. Maybe not then no.( going with flow) but then she asked are you our andrea again. Yes mum. But I thought you were 'friend'. Eer no (don't know what I'm supposed say now am both) Did I go to your house yesterday? Yes we did. Then when did you come here? I came back here with you last night. Oh right. Did you stay here?. Yes mum. Oh right, i don't think our Andie will come today cos it's raining now.
Was it raining when you come? (Not sure who I am now but for ease and it was raining when we came last night) yeah. Brief pause to talk about washing.
Did you sleep here Andie? Yeah. On that thing? (Fold up bed) yeah. I think i remember us talking bout it. Yes we were last night. Did friend come this morning did you see her? No I didn't. Wonder if I told her not to come cos our Andie was coming, she might just come though anyway, i can't get rid of her, she's always here I mean she's good to me but she never goes home. Mmmm. Where does she live? I'm not sure. Is it near you? I don't think so. I think she said she lives at --- that where you live isn't it ? Yeah. Does she drive? i think so. I ant seen her car when she's here. Oh. Maybe she comes on bus or hubby drops her off. Maybe.
Managed to distract her into sorting some more washing and think when she comes back I'll suggest putting tele on and get my knitting out and hope we can find something on tele to talk about instead of these loops.
Fingers crossed but not holding out much hope X
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
I want to say let’s hope it’s a better day but we all know that’s not going to happen . I feel completely out of my depth this week, Mum was watching Holly & Phil earlier (don’t usually have tv on in morning but I watched Boris to see his comments on social care ), she then jumped up and went to stand in the hallway , asked what was wrong and she said she was on the tele, she now thinks they can see her as she can see them . Tried to reassure her but didn’t seem to work so I have switched it off and radio is back on . I hope for periods of peace and calm for you . X
Oh dear that is upsetting. Hope she settles now its off and forgets it for next time tv on x
Mum often mixes up things said on tv with us. But so far not thought they can see us as such.
A few week ago she asked me did I not live with other dark haired one anymore? We were watching friends and Rachel was on but not living with Monica but mum was asking me as if I was Rachel.
After hearing about train problems on news once she was worried how we'd get home if no trains.
She does it quite a lot, sometimes its upsetting like when we watched a programme with balifs evicting someone and they'd left a mess for landlord and mum thought it was her house.
Sometimes its quite funny, last week we were talking about my hubby while the news was on talking about Harry and Meghan and mum said is hubby not going to work there anymore now he's not going to be a prince? Will he be moving? I said hubbys not a prince mum thats prince harry on tele you heard about. Oh blo**y nora am a wally, course your not married to a prince and we both laughed.
 

Bikerbeth

Registered User
Feb 11, 2019
1,146
Bedford
Not been on here for a few days but was really hoping that you might have had at least a tiny bit of support. However it just seems you are going round and round in these relentless loops. Wish I could suggest something positive. I guess you have not got home to hubby tonight :(
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Sis rang memory clinic today since said passed form to nurse to contact us and they said going to put mum on discussion list for tomorrow. It could be the tablet she is on that is causing it. Sis said same as I said when I spoke to them that either that might want changing or she needs something to calm her as well. They said mums worker for meds should be in touch after meeting.
She also managed to get hold of SW and she is coming on friday.
And she also contacted local dementia charity who offer carer support and have a day centre opening next month. Someone from carer support is coming next week and someone from day centre will get in touch later to assess mum and tell us about that. Don't think mum will go for day care centre idea as still saying same about not being a joiner etc as she did when tried last one. But suppose its at least worth try.
Today has been a really wearing day mum has been asking questions on a loop most of day. We were both in tears for quite a bit of late afternoon early evening. Its just been one mixed up confused thing after another today.
She finally calmed down about 8pm though was still asking the odd repeated question and after that but they were much more spaced out and calmer until she started nodding about 9.20.
She woke up about 10 past 10 and turned heating off, pulled down blind, checked doors so I thought she was going to bed and I asked if she was but she said no she'd woke up now. So she's been flicking channels and reading tv guide and moaning nothing on this blo**y tele for the last hour but I think she going to give in and go to bed now.
I probably sound nasty but I hope so as my head really needs a rest and some quiet
 

Woo2

Registered User
Apr 30, 2019
1,644
South East
You sound anything but nasty @annielou , you have the patience of a saint ! I’m glad to read the latest about SW and carers group, grab it with both hands and run with it all . Hope medication is sorted and Mum calmer and settled for you and her . Yet the day center again, can I give you a bit of advice (even though haven’t got my mum there yet ) be really happy about it , however you feel, paint a smile on , be all upbeat about how good it is/will be and Mum will feed off your positive energy and it gives you a fighting chance of her staying /liking it . Good luck for getting a bit of support , time out . Hope you get some sleep soon . X
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Not been on here for a few days but was really hoping that you might have had at least a tiny bit of support. However it just seems you are going round and round in these relentless loops. Wish I could suggest something positive. I guess you have not got home to hubby tonight :(
Unfortunately no, I even told hubby not to come to see me at mums tonight.
While I've been staying here if mum and I haven't gone over to our house he comes to mums after work for couple of hours and I make us all dinner here.
Tonight when he was due to leave work heavy winds and rain were forecast and mum and me were in a state so I thought may be better for him to go straight home.
He had to have 24 hr blood pressure monitoring last week as it had gone high when tested at gps a cuple of times recently and has to go back to discuss results soon. I know the situation with mum is stressing him out and I was in tears at time he finished work and mum was likely to still be questioning while he was here so I thought better for him not to have to come into middle of it and as weather was going to be nasty too probably safer
 
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annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
You sound anything but nasty @annielou , you have the patience of a saint ! I’m glad to read the latest about SW and carers group, grab it with both hands and run with it all . Hope medication is sorted and Mum calmer and settled for you and her . Yet the day center again, can I give you a bit of advice (even though haven’t got my mum there yet ) be really happy about it , however you feel, paint a smile on , be all upbeat about how good it is/will be and Mum will feed off your positive energy and it gives you a fighting chance of her staying /liking it . Good luck for getting a bit of support , time out . Hope you get some sleep soon . X
Thanks x I'll try x
I did think I tried to be positive and encouraging last time but don't think I did a good job when I think about it now. I think my stress probably showed with mum asking where going and why so I will try to do it better this time. X
 

Woo2

Registered User
Apr 30, 2019
1,644
South East
Sorry that didn’t come out quite right , I’m sure you was positive about it . I was the same, on mon I went over the top happy about it , and mum responded well to that. It’s almost the same ott I did when house training my dog . Worth another go . Sorry to hear about hubby’s bp , not surprising really with all you are going through , hope it comes back down soon . X
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
A few times when mum has been mixed up snd questioning me I have recorded us on my phone.
I know that sounds awful. But partly it was because one day a couple of months ago I was telling hubby what mum had been like and he couldn't believe it so next time I taped a bit of it so he could hear it.
I also taped a couple of the times recently where she has been questioning me being her daughter etc as some times afterwards I struggle to remember what she said or was like and I thought it would act as a reminder for me.
I've not played them to mum or anyone other than hubby and told sis about them.
I've not even listened to some of them but yesterday I had a listen to one and I could hear the frustration in my voice and I sounded annoyed so that won't have helped the situation to calm mum down.
It did upset me how much I let it show that I am upset and frustrated. I don't seem to be able to hold it in and hide it even though I know it doesn't help mum.
I thought back to the day centre visit and I did try to keep calm and positive on way but I think now I must have let my stress show and it would have come out in my tone and manner probably which would have upped mums stress and nerves.
I really need to work on keeping my frustration and stress covered.
 

canary

Registered User
Feb 25, 2014
12,193
South coast
Its really hard not to let your stress and frustration show. I also have a feeling that your mums endless loops are becoming self-reinforcing because she is retaining the emotional memory. You might want to ask for some respite to break these loops and you might want to play those recordings to the SW as evidence.
 

Woo2

Registered User
Apr 30, 2019
1,644
South East
@annielou , you are being too hard on yourself , where else would you go for a new job , without any training , pay or colleagues for help and advice and just dropped in it and left completely . You are doing the best you can in a very difficult situation , please don’t beat yourself up . The while dementia loop is frustrating , upsetting , lonely etc . I try to keep the compassionate communication in my mind but it slips a lot , I react then realise after that it wasn’t the way to deal with it but we are learning on the job. Take care . Sending a big squishy hug just in case you would like it. X
 

Pete1

Registered User
Jul 16, 2019
710
I really need to work on keeping my frustration and stress covered.
Hi @annielou, you are expecting far too much of yourself. Most of us have got agitated at the constant repetitive questions under no where near the duress that you find yourself under 24/7. We all reflect and think I wish I hadn't said or done something and feel guilty about it, I'm afraid that's what happens.I sincerely hope the Memory Clinic can help with medications that will make life a little easier, but I still think you need a proper break, it has been relentless 24/7 for pretty much 3 months. Stay strong - all the best.
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Thank you @canary @Woohoo @Pete1 xxx
Memory clinic got back to us today and dropped off a prescription for sertraline for mum to start on.
Mum wasnt happy when prescription was dropped off as she said she already took tablets and didn't want anymore. I shouldn't be talking to people about her and I make it out worse than it is. She is fine. She's 72 she will get bit confused but she doesnt get upset about it. But after about half an hour she calmed down.
I'm hoping it helps but reading about it online on nhs site it can take a few weeks to work and may make you feel worse first so that might be hard.
Support worker is coming to see us on tuesday and will be monitoring mum on it. So fingers crossed X
 

millalm

Registered User
Oct 9, 2019
86
Its not awful for you to have recorded the interaction between you and your Mum. I have been doing the same for some time. I started to do it when I was having trouble believing the strange conversations we were having, and trying to tell OH about them. Unless you have experienced this yourself it is not something that is easy to understand. I don't share the videos with anyone else but I have kept them as a reminder of where we were at each turning point on this horrid journey. Sometimes I watch them and wish we were back in the early days before Mum became almost totally silent as she is now. I have been reading your posts and can identify with the constant questioning of who you are, and who is who and what is what. For the 10 months my Mum lived with me we did the same thing everyday, and it was just the two of us here until my OH came home from work. I was at my wits end when Mum began 'escaping' and getting lost down the street. The case worker happened to arrive on a day where this had just happened, and I was cleaning up cookie bits that for some reason Mum had spread throughout the main floor of the house and when she asked about how things were going I just started to cry. I did not realize that I was experiencing caregiver burnout, but the case worker just said 'It's clear you can't go on like this' and the process of placing Mum in a care home was started. When I read your recent posts it reminds me of how I was feeling and how being upset with myself for being short tempered just made things even worse. And I was not sleeping on a camp cot every night , away from my home and OH, but lying awake listening to the baby monitor in Mum's room to avert any night time accidents ( even so she fell and needed 6 stitches in her eyebrow after a midnight prowl).

@annielou what you are doing is beyond admirable but you can't keep this up indefinitely, I know, because I was willing to sacrifice my own health, my OH and my family life to care for my Mum and I know you are doing the same thing. It certainly sounds like your Mum is not going to be able to stay alone in her house for much longer so as hard as it is I think you and your sister really need to consider a care home in the near future. Be strong and stop beating yourself up :)
 

Woo2

Registered User
Apr 30, 2019
1,644
South East
Mum was put on sertraline in October , I can’t say I have seen a massive difference but has helped a little. Should notice a difference within 2 weeks if its going to have an effect I would think . Hope it helps . X
 

Bikerbeth

Registered User
Feb 11, 2019
1,146
Bedford
I have to agree with what the others have said, you are being far to hard on yourself. I could never have been as patient as you have been. Please give yourself a big pat on the back. You are doing a fantastic job without any training. I am glad that it appears you may be getting some support next week or maybe the start of a process. I hope you do manage to get some time with hubby again soon though.
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Thanks @millalm @Woohoo @Bikerbeth for your replies xxx
I hope tablets help mum feel less agitated when shes confused and less anxious but they may not do much so fingers crossed X
I'm dreading if they make her worse as leaflet says things can get worse before better and the list of side effects is huge and includes all sorts too.
Got to try something though as even though mum thinks shes fine and doesnt need them sis, hubby and I think she does. Its awful to see her so confused and upset and agitated and angry by it and its not easy to be on other end of either.
Going to start her with one tomorrow. Although trying to decide best time take it is hard.
At moment mum takes vitamin D and folic mid morning (can be taken any time)
Galantamine mid lunch and iron at end of lunch (should be taken with or after food)
Iron at end of dinner (should be taken with or after food)
The new tablet says it can be taken with or without food.
Mum has trouble with her tummy so dr told her take iron tablets after food so had something in stomach to line it so tablet didnt upset it.
At first we tried galantamine with breakfast but mum only has 2 or 3 hobnobs and she felt sick after taking tablet so memory team suggested having it mid lunch so more food.
I'm wondering if sertraline will be ok with vitamin d and folic acid which aren't taken with food, or if better to try sertraline with breakfast biscuits so bit of food.
I give mum her tablets and am thinking if I manage to go home overnight I need to be at mums in time to give her tablets which is ok as they start mid morning now but if have new one with breakfast I'd have be here for that.
If mum has carers or at some point, which i'm hoping she does, or goes in home for respite or whatever they would need to be there to give her tablets at times we decide. Would that be easier for them at meal times or not?
Oh decisions decisions.
 

Pete1

Registered User
Jul 16, 2019
710
Would that be easier for them at meal times or not?
Hi @annielou, my Mum's carers always gave the tablets at meal times - their visits aligned with Breakfast / Lunch / Tea. I know you Mum was upset about the pills yesterday, but I doubt today she will remember. I do hope they manage to quell her agitation. I do hope you get some support soon, the one thing that you (and others looking after loved ones) have to deal with is the desolation of seeing a loved one in decline and changing from the person you knew - that takes its toll. It isn't like a job as a 'professional' carer as the emotional baggage is heavy, especially with your Mum as she was the person you looked always looked to for support and protection. Stay strong, all the best.
 

Woo2

Registered User
Apr 30, 2019
1,644
South East
Oh gosh that is a bit of faffing around @annielou , Mum takes all 6 tablets straight after breakfast , she did query the extra tablet the first time (dr told her it was to protect her tummy ) so that’s what I told her and she hasn’t said anymore since . Mum is on Memantine and sertraline and a statin and blood pressure and aspirin . X
 

annielou

Registered User
Sep 27, 2019
1,032
Yorkshire
Thanks @Pete1 @Woohoo xx
I think with breakfast or just after would be better but that does mean I can't go home over night as I'd have to be here to give her them.
If mum agreed to carers she could have someone come in morning give them but until she does that it means me staying here.
Although so far I can't see me getting another night at home anyway as each day I think I'll try, something happens and she's confused and upset so I don't. And she wasn't good Sunday after being on own Saturday night.
Sis said SW told her we could probably put our short visits if given them together as one block and use them as one longer visit and maybe add on our own extra hours to it. So we were wondering about me coming each day but some days letting carer come to do mid morning and lunch so I could come later in afternoon and some days I come mid morning and carer come to do dinner so I could go home earlier with hubby. So if we did that there'd be no me or carer here until mid morning nearly lunch time so new tablet would have to wait till then.
Or we could have a carer call in morning just do tablets and save other 2 visits up for a shorter block but mum can get up at different times and I assume from what read carers cant always turn up on time so tablet probably wouldn't be with breakfast anyway but a bit after it.
This is all if mum accepted carers and was ok on own on night and inbetween visits which so far she isn't.
I mentioned this to sis and hubby yesterday who both ended up saying do what you thinks best but Its hard to know whats best when I don't know whats going to happen.
I'm trying to think of ways that mum has carer or me here most of the time but we really can't afford to pay for long and what SS might offer prob would only add up to around an hour a day. Which leaves the rest to me.
I feel that mum will struggle being on her own for even a short amount of time because she was already struggling before I stayed but now I've been here 3 months she's dependant on me being here. Which may be my fault for staying here so long but she has never seemed like I could leave her.