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

[annielou]

Not as good a day today, it started off ok with us colouring and watching a tv programme we all like but it went down hill in the afternoon. Mum got fidgety about 3.30 and then after a while she said I think I'll get off home. She thought she had walked to ours and was going to walk back home even though she didn't know where she lived but she said she thought she'd find it. She was convinced she'd walked up here herself via her mums street which she also didn't know where that was only house number not street and didn't know where my house was.
I asked why she wanted to go home and she just kept saying I don't know and then eventually said she thought she'd go home before it was dark so she wasn't walking home in dark. She seemed quite confused as to where she was, where going, or why but she still wanted to go. I told her she normally stays for dinner but she said it didn't matter she wasn't bothered. She wouldn't listen to us say she usually stays till after dinner, or that I cook it for her and we'd take her home in the car the same as we'd brought her in car.It got more confusing with her talking about her mums house and her house and she could sort own tea out and she walked here and would walk back and would recognise the way when she set off.
I got quite frustrated with her lack of reason and not listening to us and I was quite blunt telling her she couldn't walk home as too far, she didn't know way, she doesn't make her own dinner and we had planned to take her home after it like we usually do. She didn't understand what I meant but put her bag and colouring things back down and sat back, but she looked fed up.
I felt really bad and still do about being blunt with her and letting my frustration show, I don't know why it did today as we have similar things often but today it got to me more than normal. I did apologise for being grumpy and blunt and she said it was ok but it took about half an hour for her to relax again and start chatting again.
Just before we had dinner she asked if I knew where she lived and if I would take her and would I go in with her, which I said yes to all three and then she said shall I go now. I told her that dinner was on so we'd go after that and she said oh yes ok. We had dinner and then about half six we set off to take her home, on the way she was asking where she lived and when I told her her address she said Oh ok am not going to my mums then. She was ok when we got in the house though and after we'd put her tv on talked about what was on and arranged going over in morning she waved us off asking me to ring her when I got in.
When I rang and said I was back home now she asked where I'd been. She didn't know she'd been with us or that we'd just took her home and she'd told me to ring, then she said Do you know yer nannans died. She thought she had to go to the funeral and as usual started asking when she'd died, whether she had left stuff there and she was sure she'd gone there last week. Then she said oh I'm all confused and mixed up sorry love. I tried to reassure her and told her not to worry about it tonight she'd remember tomorrow it was just cos she was tired and then tried to distract her by talking about tv as she'd been looking forward to watching Jane Mcdonald cruising and after another little go of where had I been and where had she been we moved on to seeing each other tomorrow and we said night.
She rang about half an hour later and asked if she'd been at mine and then started again telling me about her mum dying so I tried again to answer her questions and she said again she was confused and asked why so I tried to reassure her about being confused tonight and said to try not to worry and she'd remember tomorrow and suggested she try relax and watch something nice on tv. She said ok then asked if i was going over tomorrow and I said yes in the morning and then we said night.
She rang again ten minutes later and said I don't want you coming over on bus Andie. I told her I wasn't going on bus cos hubby would bring me and she said she didn't want me going if I had to go on bus just in case. I told her again I wouldn't and that hubby was taking me now cos he's working from home and she said Oh yes he is sorry I forgot I said Thats ok. Then she asked if I'd been today and when I said yes she said she didn't know if seen me but she was confused tonight. I tried again to tell her it was just cos tired and to try to relax and not worry about it and she said ok and again said see you tomorrow and night.
Its so hard hearing her confused and thinking she is upset but not knowing what to do to settle her.

 

[Bikerbeth]

On the positive I am glad to hear that hubby is now working from home so I hope that does help with your travel to and from your Mum’s.
Sorry to hear that the day has not been so good. I think you have said a few times recently that your Mum has said about leaving your house to get home before it gets dark (not saying it is the same but Mum used to say to me when I stayed over - you better go now before it gets dark - it was like I was ‘overloading’ her and it was her way of getting me to go so she could ‘flip’) Do you think she is getting tired quicker when she is at your house. Not that it helps you on a practical level as it is important that you get time at your house too.
you must be worn out this evenings - not just the mental challenge of coming up with words to settle her but also the emotional part. Sending you hugs.
On another note, was the Click and collect a success

 

[Woo2]

Click and collect is mon I think @Bikerbeth . @annielou sorry it’s been a topsy turvy day for you all, I do think that our pwd are picking up on news and our stresses about the whole situation and the changes of routine have an effect . I completely agree with @Bikerbeth that it probably does tire Mum out being at yours , also that it’s important you have some time at home, could you maybe take her home just a little earlier before the sundowning kicks in. I can imagine that if mum feels unclear /confused/foggy that being in her own home must feel a little easier and comforting, like when we are ill we just want to be at home . Doesn’t help you much . You have limits the same as us all, you are amazingly patient so its only natural to have times when your not so. I’m struggling at the moment the same as a lot of people I imagine , there is no sight of a break and it’s draining, I’m trying to be kind and happy but it’s wearing . Hope tom brings a better day for you . Big ? ? You are a fab kind caring supportive daughter , your mum must be so proud . Take care and be kind to you too . X

 

[annielou]

Thanks @Bikerbeth x
It could be but when I'm at hers she doesn't say anything about me going home before it gets dark. I do keep wondering if being at my house makes it harder for her to remember her house as she often forgets it and asks if I know where she lives etc which she doesn't do at her house. When we're at her house though she does still get confused quite a lot about her house, especially in the afternoon, but then its usually about how long she's been there and she often talks about leaving things at her mums house or house she lived in with my dad.
I wondered if maybe when she gets a bit bored she thinks she'll go home whereas when she's home she has no where to go. Or maybe when she starts getting confused she thinks if she goes home she'll feel more settled even though she isn't really.
I don't know if its worth bringing her to mine but she often asks to come over for a change of scene and hubby prefers to be at home rather than at mums as he has stuff he can do. I prefer it too as I can cook other things as more room in kitchen and more things to cook with. There's more room to sit too, hubby and I aren't squashed next to each other on 2 seater sofa and we can recline if we want. As we end up sat a lot I find being able to put my legs up helps my knees not ache as much. I can also put washer on when we're here and sometimes do my ironing and I spend such a lot of time at mums I miss my house, but I wonder if its worth it if mums going to keep being confused about where she lives.
Then again she is often confused wherever she is, especially in the afternoon/evening and if its not about where she lives its something else so not sure if we stopped coming she'd just be as confused at home. Its hard to know what to do for best.
Click and collect is for Monday so not been yet, hope we get most of order X

 

[Woo2]

I don’t think it will change if you stopped taking her to yours either, as you say the Confusion will centre around something else . It’s only right you want to spend time at your home, that’s reasonable and you don’t have to justify it . X

 

[annielou]

Thanks @Woo2 x I could take her home earlier but then I'd have to stay to make her dinner and be at hers for few hours. I don't like to leave her on her own too long as she'll get bored and then not know what to do with herself. Even without needing to be there to make her dinner I know if I took her home earlier and left she'd be on phone within half hour saying she was bored and asking if I'd go to see her because thats what she did last year pre diagnosis. She can usually manage on her own now for a few hours on an evening and also a couple of hours on a morning but if alone much longer she's on phone. It might be that I need to stop bringing her over soon and spend everyday at mums till evening.
It is so draining isn't it and you have even less time for a break than me as you have your mum there all time, you are amazing X
Hope we have better days tomorrow x Thanks for the hug, sending one back ?

 

[Starting on a journey]

Would your mum have a nap?
My mum has a good nap after breakfast and a couple of hours in the afternoon (she’s just turned 90). I think she struggles to maintain normality and napping reboots her enough to carry on. It also gives me time to relax.
I am a lot firmer now with mum because I have my own anxieties about what is going on. Mum reacts well to it and does as she is told which is a bonus .

 

[Woo2]

I know not taking mum to yours might be best for mum but that won’t be what’s best for you , and I think there has to be a balance , I would carry on and just try and ride the anxious times out, you are forearmed in that you know it will happen so have your a game ready . It’s only right your hubby would like to spend some time with you at your home. It’s a juggling act trying to keep everyone happy. X

 

[annielou]

Thanks @Starting on a journey @Woo2 xx Mum does occassionaly nod off but funnily enough the last few months she hasn't nodded as much and tries to stop herself if she starts nodding so only has a few minutes.
I was thinking about why I was grumpier than normal yesterday when she started on about going home and not knowing why, or her way etc yesterday and I think it was because I had actually relaxed and forgot to be on guard for mum for a bit.
Even when mum has a good day and we're chatting or colouring or something and its more enjoyable than other days I rarely actually properly relax and enjoy watching/doing something with mum for the enjoyment of it. Its usually mainly in a this is keeping mum happy and thats easier to deal with type of way. I'm not properly relaxed as I'm on alert for mums mood changing and her getting bored or confused.
Yesterday I was actually enjoying colouring and watching tv with her, it was almost like old times when she used to come over for day. I think I relaxed and dropped my alertness and was thinking more of me enjoying the time rather my usual what will mum like and whats best for mum mode. I think that's why I was a bit shocked and surprised when she started fidgeting and being confusing about going home and was grumpy as I'd been enjoying myself and forgot that I'm supposed to be looking after her.
We'll try again today and I'll try to keep my watch out for mum mode on so I hopefully won't be as grumpy x

 

[Woo2]

It’s so difficult isn’t it , normal life has gone by the wayside for now . It’s tiring though so you are more than entitled to have an hour/day off of being carer @annielou .i tend to throw a blanket over mum when she starts getting crabby and she will nod off , we all disappear and leave her to it , but that doesn’t work for all and your mum may not like being left or want to sleep, trial and error . Plus what works one day doesn’t the next . Hope today goes ok. X

 

[annielou]

Better day today, mum did say again about 3.30 about going home before it got dark but I was on guard ready for it today and so was calmer and just said you don't walk home by yourself mum we take you home in car after dinner. We had a couple of minutes fidgeting but I managed to distract with a picture to colour and she was fine for another couple of hours and the next time she mentioned it I had dinner on so she stayed for that. She started mentioning needing to get things out of her mums house again this evening and at first I just waited a bit and started chatting about tv when she was quiet for a minute and she seemed to forget about it but a while later she went back to it again and was a bit more agitated that time so I told her it was all sorted a long time ago and no need to worry about it now and luckily she wasn't as het up today and did settle. When we took her home she had her usual Do you know where it is? but she wasn't as confused as yesterday and didn't ask about it much.
She was ok at her house but wanted me to ring when I got in and when I did she was asking me if I was our Andrea and was I the only one, did she have another Andrea, did she only have two daughters me and sis ? Do I call her mum, do I know I'm her daughter, Was I married to ... (hubbys name) what was our surname? She said you've been coming everyday haven't you and I thought I'd lost you. I've been looking for you thinking you haven't been but you have. I'm sorry love I do love you. I tried my best to be gentle and reassuring and keep things light and hope I did help her from getting too upset. She did ring me back after about 20 minutes to check I'd got home but she realised I'd already rung her so she apologised and I said its ok its no bother and we said night and see you tomorrow. She seemed ok so I hope she is x

 

[Woo2]

That sounds a lot better today , do you think it helped you was prepared for it and helping diffuse it and move on to something else ? Sounds like you did brilliantly @annielou?, pleased that mum seems calmer tonight , she would of rang again if not so?she will sleep well and you too . X

 

[annielou]

I think so @Woo2 . I tried to not relax and tried to go back to staying alert for it today so I was more ready and could keep calmer. Even being prepared I'm not always able to keep us both calm because her confusion and agitation is worse some days than others but at least when I don't relax and keep alert I can sometimes deal with it calmer to start with. Unfortunately occassionaly like yesterday I do relax and aren't as prepared for her mood and confusion changes and don't handle it as well as I should. But today was better x
Hope your day was ok today x

 

[Woo2]

it’s a shame that you can’t relax but if it’s doesn’t make your life easier than it’s no good . How we have to adapt huh . Glad it was better and long may it continue ? . Take care . X

 

[imthedaughter]

As I understand it, eventually dementia will make the PWD confused wherever they are, so I wouldn't feel bad about bringing mum to your house. I agree that building in a nap schedule may be helpful. My dad was always an afternoon napper as he worked late and still got up with us kids in the morning for breakfast, and now he goes back to bed after breakfast and lunch now for a lie down.

 

[Bikerbeth]

Hi. Glad to hear that you had a better day yesterday. It is indeed important that you have time in your house too so you can at least see a bit more of hubby. I think you are going to ‘relax’ at times when you are caring for your Mum. You are doing the same hours as a carer but no break for lunch and doing one on one all the time so dropping your guard occasionally is only human. You are doing a fantastic job, please remember that.

 

[annielou]

Thanks @Woo2 @imthedaughter @Bikerbeth xxx I do wish she'd nap but she won't, it would probably do her good and me too but heyho. Yep I am only human, I think us carers forget that sometimes and think we should be super carers. I get dissapointed because I'm not and need to remind myself that I'm only human more often ? x
Today has been an odd day it started off good but then once at mums it was tiring and confusing. We set off an hour early to do our click and collect on way to mums and pick up prescriptions thinking there'd be a queue at both. There wasn't, click and collect we were loaded in a few minutes, then straight in tesco for prescriptions. Small queue at pharmacy but not long. Hubby dropped me and mums shopping off and took ours home.
Mum and I decided not long after I arrived that I'd start painting living room walls today, she's had the paint for weeks and kept putting it off. I wasn't looking forward to it as over the years I've helped mum decorate and she is hard to work with and I had a terrible time doing her bedroom with her just over a year ago when showing signs of alzheimers but not diagnosed and not as confused as now.
I explained I was going to do one wall at a time so we didn't have to pack everything up and live in chaos till it was done. Mums house is small and hasn't got much room to put stuff and I wanted to be able to return room to as close to normal each night in the hope it didn't unsettle her too much. Mum started packing things away from other side of room, piling things up willy nilly in her bedroom and kicking up the dust sheets every time she went in and out. I kept saying Mum you don't need to move that yet I'm only doing this wall.
She has a mirror on the chimney breast, its heavy and big which I must have told her half a dozen times it didn't need to come down today, but sure enough when I was in kitchen pouring my paint and she was supposedly dusting down the wall where I was going to paint I heard her saying oh bu@@er, oh heck with bumping and rattling so I rushed into room. She was taking the mirror down, almost dropping it on the fireplace. Then she had a go at me for not helping and asked what she was meant to do with it. I bit my tongue and helped her take it into bedroom into the small bit of space there was left.
After getting my supplies and ladders ready which was another trial as mum questioned every single thing, I started to paint only to find a dusty string on the top of the wall. I didn't say anything just went for duster, mum said What you doing? Dusting wall. I could have done that.She was supposed to so I said I thought you had but you must have missed one. No I didn't do that wall I did in this corner. (opposite side of room) Oh well no worries mum I can do it. Well I could do it for you. Its ok mum it'll only take me a minute. Well I'm not doing anything so I can do it. Its fine mum I've almost done now and I can't paint till I've done it anyway. Well then you should have asked me to do it. (just agree) Yeah. Well I did this side and YOU SHOULD HAVE ASKED ME TO DO THAT SIDE. I did mum, I asked you to dust this wall while I was in the kitchen. WELL I MUST HAVE BEEN DOING SOMETHING ELSE. Yes mum you were taking the mirror down on your own when I'd already told you it didn't need doing. Mum banged her hand on sofa and said EUURGHH!!! I know I shouldn't have risen to it but after half an hour of trying to get on I did rise to it, I didn't shout but I did correct her, as said earlier I am only human?
For the first hour there was lots of comments from mum, Its patchy, why are you using that roller? it'll take ages with that brush, why are you using those steps?Why are you putting that colour on that wall? It got on my nerves but although I answered them quite short and sometimes a bit blunt I kept calm and didn't shout at her. She took herself off to be noisy busy, its what she does if I'm doing something and she isn't but feels she should be. She faffed in the pantry for ten minutes, noisily washed the two cups and spoons in the sink then came in to have another go Why are you using that colour on that wall? why are you using that roller ? etc. I answered her calmly which annoyed her so she stomped off and got dust pan and brush and very noisily swept the kitchen floor and then after two trips into the shed to get mop and bucket and bring me a load of rollers I'd already told her I didn't need and don't like, she mopped the kitchen floor.
When I next went in kitchen for paint I was super nice about her working hard to try get her back on side and she came and sat on sofa for a bit and chatted five minutes, but then went back to questions and comments on painting and went to noisily move things out of bathroom to mop that floor. I said as sweet as I could You sound busy mum and she said Yeah I'm taking stuff out of bathroom. I knew she was only planning to mop floor but she hasn't cleaned bathroom for last two weeks even though I've suggested one of us does it quite a few times and resorted to giving it a sneaky wipe over while I'm in there a few times, so as sweet as I could I asked What you doing are you cleaning the bathroom? Mum said Er yeah I am and I'm going to mop floor. RESULT!
Unfortunately though, she was using the dishcloth from kitchen. Nowadays she often forgets to swap cloths or wash them so I watch and remind her to swap them, or do it myself without her noticing otherwise she'll be wiping worktops and washing up with cloth she's cleaned bathroom, or wiped floor with. I asked her if it was kitchen dishcloth she was using and she said No its another one I have lots of cloths. I could see her and she'd just been about to put it back where she keeps kitchen cloth but then she popped it in washing machine as she told me no. Phew Mind you she couldn't find another one despite them being where always are so I had to prompt her to find it later.
During afternoon mum came out with some mixed up tales. As is quite usual now she thought her mum had just died again and she said I want to get some stuff out of my mums house but I bet our ... (her oldest brother) has already emptied it cos he's like that. He likes to get straight on with things, mind you his minds going now so he might not have. (he also has dementia) I want my single bed, its not comfortable but it's all that would fit in there cos its a small room.
Then she mixed up another tale of oldest brother wanting to move to same village as other brother who's just moved there (20 odd year ago) but he couldn't because he'd not finished his bungalow, well he might have finished it now but he can't get enough for it so he can't move. Nobody wants bungalows now but they did when he started it (Him and his wife bought the bungalow brand new a long time ago but he's never built a house, The other year they wanted to move down near her son but it didn't come off).
Mum said you know I've got another house, she paused and said Oh no you don't believe I've got another one do you, then told me she'd had an odd dream last night about her fireplace and somebody had said it wasn't hers so she thought they meant it should be at her other house but they said no. She asked me if I thought it was someone else. I told her no, it had been mine but she'd had it years which she was happy about cos she said she likes it. I reminded her she said it was a dream and she said Yes but it could be real too so I told her No it is defiantely yours. She said Oh good. It was a weird night yesterday even before I went to bed, about somert past ten I started thinking I was in wrong house, it wasn't __ (her address) so I unlocked it and looked on front door to check number and it were that number so it must be my house.
Mixed in with those she kept saying You don't have to paint all day, Are you stopping soon? So when I'd finished the second coat on one full wall and chimney alcove I gave in for the day. I put most of decorating things into shed, brought half the stuff out of mums bedroom back into room and tidied rest up so out of way hoping it won't cause her too much confusion later.
She's been mixing up who I was and hubby too but I thought she'd got it before we left tonight but Mum had rung twice when I got home so I rang back and we had a very confusing conversation which took some figuring. Apparently shortly after we'd left she'd not been sure who had been. She thought it was me but wasn't positive so rang to ask me. She was glad I went to see her cos she loved me and glad it was me who had been and painted, it was nice of me to go, I was lovely and she really loved me. She said she didn't know it was me though cos she forgets who people are cos she's daft and useless now at remembering, I told her she wasn't daft she just forgets sometimes when she's tired, it didn't matter. She kept telling me she loved me and was sorry she forgot so would I tell her who I was cos she can't remember names now so I said I would. It doesn't make any difference but I agreed to calm her. I asked her if she was ok and she said yes I'm ok now I know it was you love, I told her I loved her and will see her tomorrow and she said yes that'll be lovely and then we said night.
I expected all the edgyness about the decorating and she always confusing things but mixing both in today and my brain felt ready to implode tonight so sorry for the extra long rambly post but I needed to write it down and get it out of my head before bed.

 

[Woo2]

You was awake til late @annielou , you must be tired this morning . That sounded like a very challenging day , I don’t know how you do it , I would of burst, find decorating stressful enough without mum flapping about . I am quite lucky she will sit in chair with paper or watch daytime tv while we in the lockdown . Hope that you don’t have many other rooms to paint as it could be extremely hard work for you . Good luck for today . X

 

[annielou]

Not had much sleep @Woo2 I just couldn't switch off last night. I came on earlier in evening to do my post but kept remembering more things or changing mind whether to put it on as was so much going round in my head so I'd leave it for a bit and kept trying to concentrate on other things to take my mind of the day but I couldn't and so in the end came back on late in hope getting it down would get it out of my head a bit better.
I was and still am also fretting about getting to mums late today as hubby has been stopping work for 3/4 an hour about 20 to 10 to take me to mums so I arrive about my normal time of 10, but today he has a conference call in place of a weekly meeting that's at 9 which he says takes about an hour and half and he'll take me after that. His meetings often over run though so I'm worried I'm going to be late and then mum will be taking her sertraline tablet close to her lunchtime galantamine and that tends to make her feel a bit sick in afternoon. He thinks they'll finish on time and it will be fine (ever the optimist) meeting won't over run and we don't go till 11 on weekends anyway. That's true , but we tend to have lunch later on a weekend, in week we tend to have it about 12 and as its carer day today I don't want to try delay it by much as mum likes it over and out of way long before they come in case she needs loo after lunch but if she has them close together mum might be feeling sick when carers due. ? Fingers crossed hubbys right and I'm worrying about nothing.
We're only doing the living room thankfully but at rate we're going its going to take a couple of weeks?? Probably won't do any today as not going to be there long before carer comes. Thats going to be fun to explain to mum.
Hope we all have easier days today X

 

[annielou]

Oh just heard hubbys phone, Thought it was conference call, but no not meeting someone else, and he just told them its ok to talk cos the meeting call has been moved to 1/4 past now ?