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

Sarasa

Registered User
Apr 13, 2018
1,723
Hi @annielou, hope you've managed to have a peaceful afternoon and managed to do a few things you want to do. Glad your sister has heard from one home. it sounds like they are taking a sensible approach, and you know that there is at least one place you could try if you need to move quickly. Have you had any luck with social services. I do think you need another re-assessment urgently.
 

annielou

Registered User
Sep 27, 2019
1,660
Yorkshire
Thanks @Pete1 @Sarasa xx We haven't contacted SS yet. We think if reassess now they'll suggest their carers first or respite which will mean mum spending more time on her own and seeing different carers who she doesn't know rather than me and one she does know for long periods at a time. So she will probably ring me more and more with her questions about things and want to know where I am. I know at some point that's what we're probably going to have to do before they say mum needs 24hr care in a home but at the moment I don't think I can cope with the stress of that and seeing how it would affect mum as well as me. They were struggling to find agency to take it on before so no doubt will struggle more now so ti could take a while to settle and sort it.
If mum goes into home for respite if at all possible we don't want mum to be confined to her room by herself while current virus conditions are in place. She is lonely and confused and scared when on her own so if she was in a home now she'd be in a strange room, by herself a lot of the time and wouldn't be allowed to mix with other residents or take part in activities to help her settle in and distract her and obviously she wouldn't have staff with her for big chunks of time like she does now as they wouldn't be able to provide one to one care. So that would be worse than now, she's not going to feel better than she is now. I know she doesn't feel good a lot of the time now and doesn't always know who we are but she has someone with her who is familiar even if not sure who. She has someone to answer her questions even if she doesn't like the answers.
The benefits of mum being in a home would be her having company for when she is bored, lonely or scared and security and safety. If confined to her room she would have less company than now. If it gets so she isn't safe on her own at home then yes being in a home even under those circumstances would be better than being at home as at least she would be safe so then we'd have to do something, but if at all possible we want respite to be a positive thing with as much hope of her settling in as possible and being in a room she doesn't know on her own is not positive, it's more like a punishment even though it isn't meant to be.
So we're hoping to wait it out and hoping that the virus conditions settle down and change for better before things with mum get much worse, although today I think hoping for virus conditions to settle down is losing to mum getting worse.
Unfortunately I didn't get a peaceful afternoon while carer was there today. Not sure why as it hadn't been a bad morning at mums but I felt shattered and down this afternoon so when I came home after sorting some washing and bringing ironing down to do I sat down for quick cup of tea before I started and ended up laid on sofa half asleep for over half an hour until a cold caller rang and disturbed me so I got up and started ironing.
Mum rang my mobile just after 1/4 past 5 She thought A (dads brother) was going to get her stuff out of dad's house. Carer shouted that she was sorry and had been trying to console mum for a while but she couldn't. Mum kept asking about if her stuff was still at dads, her washer, her iron and ironing board I explained and although she didn't sound totally convinced she did go after she'd asked me if our Andrea knew about her dad and I told her yes and then said I'd see her tomorrow. By the sound of it she had been asking carer but not believing her or being distracted for quite a while.
Mum rang house phone at 10 past 6 about same sort of things, took mum through when things had happened and told her over and over she had all her stuff nobody else had it so nothing to worry about, she'd start saying oh are you sure oh good and seem a bit settled but then start again. She asked if I'd go see her sometime soon and I said I'd go again tomorrow morning and mum said good. She asked again if had left her washer, iron and ironing board there and carer said it's here I've just used to to do ironing. She tried joke about how many nighties she'd ironed and I joined in and we got mum laughing and joked about a plant we'd been talking about earlier and mum sounded calmer and cheerier. Carer said are you going to let your Andrea go have her dinner now but mum had just started again saying was I sure there was nothing left in the house. I said no and mum asked few more questions so I explained again and mum said oh ok but didn't sound convinced. Carer said has that put your mind at rest now and mum said No not really I want to go look for myself. I said there was nowhere to look, house had gone back to council but mum said I want to see I'm going to go and was getting quite shouty and agitated so I said ok we'll go tomorrow then. Mum said ok. Carer said again are you going to let your andrea go get something to eat now then - and mum said oh haven't you eaten yet love. I said no I was just making it so she asked again if I'd go see her and when i said I'd go in morning she said ok and bye. I had a feeling she might ring again after carer left as by time we'd been on phone 10 minutes there was only 10 minutes to go before carer finished at 1/2 past 6 and mum had still sounded a bit confused and not convinced by it all when we hung up.
Mum rang again just after 7 in tears because my dad had died. She thought it was recent. I explained was long time ago but she said it felt recent. I explained it was an old memory but felt new to her it was her mind playing tricks on her. She asked few questions about it and then kept saying she was on her own, and didn't see anybody. I told her I see her everyday and she said I've not seen you today so I told her I was there till carer came and we'd talked on phone this afternoon so mum said Oh good, I don't remember things now. I said it's only when you're brains tired later on in day you'll remember tomorrow. She was upset dad had been with someone else and she hadn't and was upset she wasn't with him and was on her own now. I told her dad hadn't met other woman till years after they'd split up and mum hadn't wanted him back, or wanted anyone else and preferred being on her own and was better off without him and Mum agreed.
She couldn't remember where she'd lived or when they'd split up and wanted to know where all their furniture was. I explained where lived when and what happened her furniture. She asked what happened to dads and where he'd lived and I explained he had lived in C's house and they had her stuff or what they got together and didn't have any of mums. Then she went back to how long he'd been dead and was upset she couldn't go to funeral. Had our Andrea and - (my sister) gone.? I told her it was long time ago and she didn't want to go cos they hadn't been together for years, they weren't friends and she hadn't spoke to him for years. That seemed to comfort her a bit.
But she was still upset about being on her own and said she felt like only person in world and said I don't know what to do. Then she said I don't see anyone. I said she had me and I went every day and she said good and asked if i'd go see her soon. I said I'd come tomorrow morning is that ok and she said yes then said night, I told her love you lots and mum said I love you too and sounded like she was crying more again when she had started to slow down. I said don't get upset mum there's no reason to be upset you're ok and I come and see you everyday and mum said Ok . We talked for minute or two more and then she said she'd go now and see me tomorrow and we said night and we both said love you lots again. She still sounded teary as she had all way through call which had lasted over ten minutes but I don't think she was actually crying when hung up, I hope not.
The most worrying thing for me is that she said I don't know what to do when talking about being on her own, as that's what she was saying last year when things deteriorated into me and hubby going late at night and very early morning a couple of times to pick her up and then me staying with her overnight and being with her all day everyday as she was scared to be on her own cos she didn't know what she was supposed to do on her own. So now I feel like its a bit of a race between covid restrictions being lifted and mum needing full time care. I'm not sure which is going to come first but I fear the latter. I feel like if I try to stay with mum again it won't be long before we can't cope as when mum doesn't know who I am it will cause mum more confusion and distress and make things unbearable for both of us. But we don't want her to go in home and be confined to a room for weeks by herself.
 
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Just me

Registered User
Nov 17, 2013
349
Thanks @Pete1 @Sarasa xx We haven't contacted SS yet. We think if reassess now they'll suggest their carers first or respite which will mean mum spending more time on her own and seeing different carers who she doesn't know rather than me and one she does know for long periods at a time. So she will probably ring me more and more with her questions about things and want to know where I am. I know at some point that's what we're probably going to have to do before they say mum needs 24hr care in a home but at the moment I don't think I can cope with the stress of that and seeing how it would affect mum as well as me. They were struggling to find agency to take it on before so no doubt will struggle more now so ti could take a while to settle and sort it.
If mum goes into home for respite if at all possible we don't want mum to be confined to her room by herself while current virus conditions are in place. She is lonely and confused and scared when on her own so if she was in a home now she'd be in a strange room, by herself a lot of the time and wouldn't be allowed to mix with other residents or take part in activities to help her settle in and distract her and obviously she wouldn't have staff with her for big chunks of time like she does now as they wouldn't be able to provide one to one care. So that would be worse than now, she's not going to feel better than she is now. I know she doesn't feel good a lot of the time now and doesn't always know who we are but she has someone with her who is familiar even if not sure who. She has someone to answer her questions even if she doesn't like the answers.
The benefits of mum being in a home would be her having company for when she is bored, lonely or scared and security and safety. If confined to her room she would have less company than now. If it gets so she isn't safe on her own at home then yes being in a home even under those circumstances would be better than being at home as at least she would be safe so then we'd have to do something, but if at all possible we want respite to be a positive thing with as much hope of her settling in as possible and being in a room she doesn't know on her own is not positive it's more like a punishment even though it isn't meant to be.
So we're hoping to wait it out and hoping that the virus conditions settle down and change for better before things with mum get much worse, although today I think hoping for virus conditions to settle down is losing to mum getting worse.
Unfortunately I didn't get a peaceful afternoon while carer was there today. Not sure why as it hadn't been a bad morning at mums but I felt shattered and down this afternoon so when I came home after sorting some washing and bringing ironing down to do I sat down for quick cup of tea before I started and ended up laid on sofa half asleep for over half an hour until a cold caller rang and disturbed me so I got up and started ironing.
Mum rang my mobile just after 1/4 past 5 She though A (dads brother) was going to get her stuff out of dad's house. Carer shouted that she was sorry and had been trying to console mum for a while but she couldn't. Mum kept asking about if her stuff was still at dads, her washer, her iron and ironing board I explained and although she didn't sound totally convinced she did go after she'd asked me if our Andrea knew about her dad and I told her yes and then said I'd see her tomorrow. By the sound of it she had been asking carer but not believing her or being distracted for quite a while.
Mum rang house phone at 10 past 6 about same sort of things, took mum through when things had happened and told her over and over she had all her stuff nobody else had it so nothing to worry about, she'd start saying oh are you sure oh good and seem a bit settled but then start again. She asked if I'd go see her sometime soon and I said I'd go again tomorrow morning and mum said good. She asked again if had left her washer, iron and ironing board there and carer said it's here I've just used to to do ironing. She tried joke about how many nighties she'd ironed and I joined in and we got mum laughing and joked about a plant we'd been talking about earlier and mum sounded calmer and cheerier. Carer said are you going to let your Andrea go have her dinner now but mum had just started again saying was I sure there was nothing left in the house. I said no and mum asked few more questions so I explained again and mum said oh ok but didn't sound convinced. Carer said has that put your mind at rest now and mum said No not really I want to go look for myself. I said there was nowhere to look, house had gone back to council but mum said I want to see I'm going to go and was getting quite shouty and agitated so I said ok we'll go tomorrow then. Mum said ok. Carer said again are you going to let your andrea go get something to eat now then - and mum said oh haven't you eaten yet love. I said no I was just making it so she asked again if I'd go see her and when i said I'd go in morning she said ok and bye. I had a feeling she might ring again after carer left as there was only 10 minutes to go and she still sounded a bit confused and not convinced by it all when we hung up.
She rang just after 7 in tear because my dad had died. She thought it was recent. I explained was long time ago but she said felt recent. I explained it was old memory but felt new and was her mind playing tricks on her. She asked few questions and kept saying she was on her own, and didn't see anybody. I told her I see her everyday and she said I've not seen you today so I told her I was there till carer came and we'd talked on phone so she said oh good, I don't remember things. I said it's only when you're brains tired later on in day you'll remember tomorrow. She was upset dad had been with someone else and she hadn't and was upset she wasn't with him and was on her own now. I told her dad hadn't met other woman till years after split up and mum hadn't wanted him back or wanted anyone else and preferred being on her own and was better off without him and she agreed. She couldn't remember where she'd lived or when they'd split up and wanted to know where all their furniture was. I explained where lived when and what happened her furniture. She asked what happened to dads and where he'd lived and I explained he had lived in C's house and they had her stuff or what got together and didn't have any of mums. Then she went back to how long been dead and was upset she couldn't go to funeral. Had our Andrea and - (my sister) gone. I told her it was long time ago and she didn't want to go cos they hadn't been together for years, they weren't friends and she hadn't spoke to him for years. That seemed to comfort her a bit.
But she was still upset about being on her own and said she felt like only person in world and said I don't know what to do. Then she said I don't see anyone. I said she had me and I went every day and she said good and asked if i'd go see her soon. I said I'd come tomorrow morning is that ok and she said yes then said night, I told her love you lots and mum said I love you too and sounded like crying more again when she had started to slow down. I said don't get upset mum there's no reason to be upset you're ok and I come and see you everyday and mum said Ok . We talked for minute or two more and then she said she'd go now and see me tomorrow and we said night and we both said love you lots again. She still sounded teary as she had all way through call but I don't think she was actually crying.
The most worrying thing for me is that she said I don't know what to do when talking about being on her own, as that's what she was saying last year when things deteriorated into me and hubby going late at night and very early morning to pick her up and then me staying with her overnight and being with her all day everyday as she was scared to be on her own cos she didn't know what she was supposed to do on her own. So now I feel like its a bit of a race between covid restrictions being lifted and mum needing full time care. I'm not sure which is going to come first but I fear the latter. I feel like if I try to stay with mum again it won't be long before we can't cope as when mum doesn't know who I am it will cause mum more confusion and distress and make things unbearable for both of us.
I know exactly what you mean about waiting out Covid or your mum getting worse @annielou.
I’m in the same position, such a difficult decision at the best of times but now it feels impossible and hard to think clearly when your dealing with so much emotion day after day.
Sending hugs 🤗 x
 

Sarasa

Registered User
Apr 13, 2018
1,723
@annielou, I know the first week or so in care home would be hard at the moment, but your mum is so upset and confused now that I can't imagine it would be any worse. She needs someone there to distract and comfort her 24/7 and a care home would provide that.
 

annielou

Registered User
Sep 27, 2019
1,660
Yorkshire
Thanks @Just me @Sarasa xx, Yes you're right it does feel impossible to think clearly and weigh up the least worst option @Just me x Good luck with your decision too x
I think at the minute it's the thought she won't have someone there to distract and comfort her most of the time as she would be isolated in a room on her own that's the biggest negative. If she was just there for respite it would mean she'd be on her own a lot of time while there and then coming back home, possibly to carers only coming for short visits if SS reassessed and we had to try their care plan first before offered a full time home. If she could mix and get involved in activities, even if we couldn't visit her, it wouldn't seem as bad as being round others would hopefully help distract her and help her to settle but that's not what would happen at moment.
I want things to change and I know they need to for mums sake and mine but I want them to change for the better and this doesn't feel better for mum. If needs be and we have to do it cos I can't look after mum any longer either cos I can't cope any longer, or mum isn't safe any longer than we'll have to do it but I hope we can last till mum can not be isolated in room.
 

Just me

Registered User
Nov 17, 2013
349
I finally made the decision that mum would be better in a care home but like you @annielou when I spoke the manager they told me there couldn’t be any visits beforehand, mum would be isolated in a room on her own for 14 days with only a carer in a mask checking up on her about 6 times a day. Totally understandable for her sake and staff and residents but I really don't think this is in her best interests being in a strange place on her own, seemingly deserted by me and to be honest I don’t think I’d cope with the worry.
I’m hoping that in a few months the spread of the virus is more manageable and testing can reduce the isolation period.
 

DianeW

Registered User
Sep 10, 2013
743
Lytham St Annes
I do understand that the care home situation would not be ideal for your Mum at the moment.......but it’s not just about your Mum is it, it’s also about your needs and ability to keep up the pace your at and highly probability of increased care that will likely be required very shortly.........I can see from what you write the weekly deterioration, and how distressed it is making your Mum.

I get that the 2 weeks quarantine on a 2 weeks respite is not ideal and would be difficult for your Mum as opposed to her mixing and experiencing respite in a more relaxed way. But respite is for you......so you can recharge and decide how to continue.

Im sure she would settle and would also be assessed by staff, resulting in an accurate idea on her ability to remain at home or require 24 hour care, I’m sure social services would have to consider that.
Staff would still spend time with her even if she is quarantined, she wouldn’t be locked away and isolated with no staff company at all.

People in my husbands care home that are isolated still have staff company, obviously not the same as being out and about around home but they do their best to keep people company. My husband even went in on his days off and played chess with a man who loved to play.

Who knows how long the current restrictions will stay in place...I mean this could go on for months and then the worries of a 2nd wave in winter months is looming - are you thinking that you are willing to continue as you are indefinitely, until restrictions are lifted?

It’s so difficult I know, but your never going to be able to plan everything and tick all boxes and make the situation perfect for your Mum.

The care that you are providing is keeping your Mum at home, but the phone calls are increasing too now, when you think about the settled time your Mum has now in a day, it is diminishing, and she is increasingly more confused and upset, needing reassurance that doesn’t reassure her anymore.

Have you asked your sister if she can come and stay with Mum for a bit, to give you and hubby a break?
 
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annielou

Registered User
Sep 27, 2019
1,660
Yorkshire
Thanks @Just me @DianeW @Woo2 xxx
That's what I'm hoping @Just me and also hoping we can manage till it does. As it's unlikely mum would go in for respite and be able to stay full time without being sent home first to try carers and be reassessed by SS, I think she'd be in respite for 2 weeks and in isolation all that time and then come home and feel worse than went in, which I would then have to deal with practically and emotionally. This bloody virus is making things so difficult in so many ways for so many people isn't it.
If things carry on as they are with virus restrictions for much longer, which I fear is likely, then I do fear that I will have to give in at some point and it may very well be soon.
I know respite is also for me to give me a break but I would feel so bad and worry constantly if went in now to isolation and I'd have to deal with the after effects when respite was over and its hard to see how much I would gain from it long term at the moment. That could just be because I'm in it and sort of consumed by just trying to get through each day and worrying if doing right or wrong thing for mum but can't actually see what is best for either of us but if I can I want to avoid mum having to do that for as long as possible.
I do feel it may happen one day, either from me or mum having a crisis where we just can't carry on as we are and I wish I could organise in way we could both feel at least a little comfortable with before it got to that but at minute I can't see a way to do that so will try to last and hope for things to get slightly better option wise before a crisis happens.
My sister has offered to come down the weekend after next for a couple of nights but I'm still not sure if its safe for her and mum to do so. Also we're not sure if it will be possible by then as she lives in scotland and the postcode areas next to her have been in local lockdown so we're hoping lockdown doesn't move on to include her area and my town was very high in table of areas with most cases in england and there is talk we may have to go into local lockdown if rates get much higher now restrictions have been eased a bit. So she may not be able to come even if we decide to risk her coming. I think if it is possible I may just have to agree and let her come and just hope it is safe as even a bit of time off would help and I think sis wants to see mum for herself as she's not seen her since february.
@DianeW Your husband sounds lovely and I'm sure there are lots of care home workers who are too. One of hubbys cousins works in a care home and has gone in on her day off in past to help with outings and things so more residents could go out and gone in on resident birthdays to join in celebrations. I hope if mum does go to a care home in the future we find one with staff like your husband x
 

Sarasa

Registered User
Apr 13, 2018
1,723
Hi @annielou, I'd grab your sister coming down with both hands. Could she stay over with your mum like you used to do. Tough for her, but it would give her a much clearer idea of what you've been doing. As long as she is sensible I think the risk from Covid-19 would be fairly minimal
As for care homes, I'd start planning now. If a crisis happens your mother might be moved somewhere you really don't want, if you have her name down for places you can refuse the place when her name comes up and still keep her on the waiting list. I still think you need social services to come and do another assessment and think seriously about getting in extra help to give you a couple of days completely off.
Whatever you decide, we're here supporting you, but do think of your own needs and those of your husband as well as your mum's.
 

Banjomansmate

Registered User
Jan 13, 2019
2,118
Dorset
If your Mum has no financial assets I imagine you will be relying on your LA funding a Care Home place, in which case you need to be looking at homes that accept LA prices. Once SS decide she needs residential care I expect you will be given a choice of two or three homes to chose from, depending on availability of places. This is why you need to have her needs reassessed. Sadly you may have very little choice in where she goes unless somebody can pay the whacking great fees for private care or top up fees over the LA maximum.
 

Jaded'n'faded

Registered User
Jan 23, 2019
911
High Peak
Hi @annielou . I think you make a good point about the CH quarantine period. When someone first goes in, it's so important for them to be able to walk round the place, find their bearings, get to know staff and meet the other residents. All these things help the person to feel settled. But you're not going to get that at the moment, whether it is for respite or a permanent stay. Unfortunately, this is likely to be the case for the forseeable future. Covid isn't going away and as we move towards winter there will be winter flu and the various other bugs care homes have to be wary of. So I think anyone going into a care home will have to undergo 2 weeks of isolation. (Which makes complete sense of course, but doesn't help your mum!)

I don't think there is an answer to this. It wouldn't be a very pleasant respite for you or your mum if she was trapped in a small room for a fortnight. You would just worry and she wouldn't understand. I think I would 'save' this for when your mum goes in permanently, then grit teeth and muddle through that first 2 weeks somehow, knowing that after that she could enjoy (one can only hope...) the full care home experience, which I think she would really benefit from.

In the meantime, as your mum will be LA funded, I think it's time to get SS back in to re-assess. They may just suggest more carers and I think you should go with this (and force it on your mum if necessary) so that it can be tried, then when it fails (as it inevitably will) SS will have to agree it's time for a CH.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
189
I agree with others that a reassessment by SS must be a priority, you gain nothing by continuing to put this off. Also, if possible, could they do the assessment in the afternoon, when your mum is more confused. They need to see how bad the situation really is, there is no point trying to give them the impression things are not too difficult when actually it seems to me you are all a gnats whisker from breaking point.
 

annielou

Registered User
Sep 27, 2019
1,660
Yorkshire
Thanks @Sarasa @Banjomansmate @Jaded'n'faded @CardiffGirlInEssex xxxx
I think long as allowed will agree to sis coming. Think she’ll stay with us although she did say she could stay at travelodge but don’t think thats a good idea for sis and staying with mum is a bit risky in case gets used to it and I have to take over after she goes home.
I think while visiting sis and I will have to have chat about SS assessment etc and what to do next. We should get chance to do that on evening if not too many calls from mum.
Mum would be LA funded so will be a case of SS deciding when home is needed and paying for it. We had hoped to be able to go look round some before hand then if SS said needed home we would have bit of an idea where could go and hope we’d get to have a little bit of a say.
I do feel like for respite it would be not fair for mum to spend it all in isolation but if staying permanent then it would be more worth it.
SS do seem to only visit on mornings, we asked for afternoon last time specifically, using sis travelling here to be at it as excuse, but latest would offer was lunchtime. I do wonder if thats on purpose but I could just be being cynical. I suppose it would probably be on phone nowadays rather than in person.
 

DianeW

Registered User
Sep 10, 2013
743
Lytham St Annes
Thinking of you and really hoping you get the time you need to get a break.

As I’ve said as long as you are happy and willing to continue caring and supporting your Mum......then that’s all that matters.

The only thing I will say though is if your sister is staying with you I don’t think your going to get much of a break, but it will help having her to talk to and plan, but she needs to experience a tiny bit of what you do every day.

If you want any input or additional care from social services then you need to contact them, but you must be honest and tell them you can’t continue at the level you are.
 

annielou

Registered User
Sep 27, 2019
1,660
Yorkshire
I hate bloody dementia I hate bloody covid 19 and I hate the bloody effect it is having on my poor mum and those of us who love and care for her. Sorry for the swearing but I'm so mad and bloody fed up, it's been such a sad day today, poor mum has been so confused and upset.
When I arrived this morning mum told me W (my dad) had died and so had her mum. W killed himself. I told her I knew, it was a long time ago and dad didn't kill himself he just didn't look after himself. She was snuffly as she sometimes is on a morning and said her cold was back. She looked and sounded a bit rough, she was bit sniffly and sounded quiet and confused and sad, She hadn't washed her hair again and it looked a bit of a mess, it's been over a week now, she had on same trousers had on since monday and same cardi from sunday.
There were lots of questions about my dad and her mum dying and lots of our Andrea was supposed to be coming but she hasn't, our Andrea didn't come did she and lots of are you our Andrea, are you my daughter. She sounded like a scared confused little girl. By lunchtime she was sounding a bit better, her snuffly cold thing had gone and although she was still asking same things she wasn't asking quite as much and didn't sound as worried.
I told mum just before half two that eye hospital was calling today and mum said she wasn't having op cos she was 73 and was too old. I said you might live another 10 or 20 years and mum said I won't I'll shoot myself. Then after I told her she wouldn't and couldn't she said she dint see any family anyway and she didn't get to go to her mums funeral, which was a bit of an odd thing to say. i told her lets just see what they say and we'll ask for time to think about it and mum agreed.
Mum had been calling me 'friend' in between questions today so when Dr rang and asked if someone was with mum she said her friend was with her. He asked if she was ok for her friend to be in on conversation and mum said yes, I did get chance to introduce myself and say I was her daughter a few minutes later which probably confused him but he didn't say anything other than hello. Mum was a bit confused with her answers to things he asked but I corrected where necessary. She kept telling him she didn't want operation. Basic outcome was that as hole is old there isn't much chance of it healing by much or sight improving by much. If mum really wanted it they could try it but he didn't sound like would help much and if mum was coping with things as were that might be best. Mum said she was and I do agree might be best if not going to improve much if at all.
Mum asked him about her right eye, she'd been referred for left but they had images of both eyes and he said her right eye looked like there had been some tension but she didn't have a hole and likely hood of her developing a hole was low. He did say he would have expected mum to be able to read further down eye chart but her retina looked ok so that could be because she needed new prescription, or her cataract lens was clouding. I wondered if maybe that could actually be to do with mums dementia as I have heard eyesight and abiltity to read goes. Anyway upshot was mum isn't having op on left eye and they will discharge her. She's still under our local hospital so they'll be able to look out for right eye if it deteriorates.
Five minutes after hospital call mum seemed to have forgot about it. She was back to asking about dad and her mum and me. She kept saying are you my daughter, are you my andrea, will you come see me again sometime, do you love me. She went back to sounding worried and confused. She asked if she had another one a few times and which one I was. Was I married etc. Mum also said a few times not seen our - (my sister) for years and wished she'd she come and see her again. She told me she didn't like being on her own, that she wished her mum was still alive a few times, also that she didn't know what to do on her own. I tried to keep answering her and trying to make things sound ok for her by saying people died long time ago, she'd done what needed to at time, she's been ok on her own, she liked her house. She did agree she liked her house and instead of worrying about paying her rent today she actually said someone had told her she didn't need to pay her rent which was good cos she could manage gas etc but couldn't pay for rent and didn't know where to go if couldn't live here.
I got her doing her colouring about 4 which slowed questions down a bit but by five she was back asking again who I was and did I love, could she come to my house sometime and would hubby mind it was more or less constant till hubby arrived just before 6 when she stopped asking. When we were leaving just after 7 she seemed ok till just as I was putting shoes on and she said I wish my mum was still alive so she could live with me. She said as we were leaving she was going to wash up and then watch repair shop and waved us off ok saying she'd see me tomorrow.
She rang my mobile about ten minutes after I left about 20 past 7 sounding upset asking why I didn't speak to her when she'd not done anything bad to me.She thought we had only gone at dinner time and not spoke to her and she hadn't seen me before. Then after I told her been there all day and had been talking to her all time, I wouldn't do that cos I love her and I was going back in morning. Mum asked if I was mad at her and I said no I'm not mad I'm sad you're upset cos think I haven't been talking to you and there's no need to be sad mum I love you lots. She was crying and saying feels like she's on her own and nobody comes. I told her I come every day she's not on her own, try not to be upset mum. We were on a few minutes and I hoped I'd got her to calm down and feel bit better. She was going to go wash up and watch tv later.
She rang again 1/2 hour later at 7.54 in floods of tears and said I can't find W and I can't find my mum. I could barely make out what she was saying she was sobbing so much. She said she didn't know what to do on her own, nobody came to see her, everybody had gone, she couldn't find anybody. She didn't want to be on her own. I tried to explain didn't live with dad or her mum, I didn't say they were dead. I told her I'd been today and hubby had and would go tomorrow. She saw me everyday and was only on her own on evening I'd be back tomorrow. I tried change subject on one of times sobbing slowed a bit and asked if done washing up ready for tv and she said No I've not done anything I've been looking for W and my mum. After another couple of minutes trying calm her down she said she would and see me tomorrow and we said night, she was still crying but slowing down I thought.
Five minutes later she rang again at 8.04 She asked if I was home now and if hubby had took me, I thought she'd forgot been ringing before and thought I'd only just got in. She asked me if I was ok and when I said yes she said good then said I've no W and no mum they've gone. I said I know mum it's sad but they've been gone a long time. She started crying and I asked what was wrong. Mum said she wanted to live with W she didn't want to be on her own. I told her she hadn't been with dad for years and mum said I don't want to be on my own now I want to live with W now. I told her she didn't really, he was rubbish, even when she was with him she was still on her own, if he was here now he'd be in pub. Mum agreed. I told her he was selfish and lazy and she hadn't wanted to be with him for a lot of years. Sometimes when I remind mum what he was like it seems to comfort her and stops her being sorry not together, I hoped it would tonight. Mum did agree but then said Then I want my mum. She was sobbing like mad. I said I was sorry she couldn't be with her mum and I couldn't do that for her. She just cried and said again I want my mum I don't want to be on my own I don't know what to do. I said I know I'm sorry. I want my mum too, you're my mum and I love you to bits and I'm sorry I can't be with you all the time but I have to come home to hubby some of the time. Mum said she knew I couldn't but would she see me again sometime. I said I go everyday, I'll be back in morning. Mum said she felt like always on her own and didn't see anyone. I told her she sees me everyday. There's someone with her in day its just on an evening, she's not on her own much. I told her she liked her house and was safe there and I'd be back tomorrow. She said ok. I suggested she try find something to do to pass time for few hours for evening and I'd be back in morning. I reminded her repair shop was on soon and she liked that and she said she would try and she'd watch that. We said night and see you tomorrow and she hung up.
Poor mum I feel so bad for her, she sounded so sad, worried, unsure, confused and upset today. Hearing her ask questions sounding so scared and seeing her huddled in on herself and fiddling when she was asking and she was worried and unsure and hearing her sobbing on the phone tonight has been awful and heartbreaking. My poor mum this disease is so cruel
 

Pete1

Registered User
Jul 16, 2019
871
Hi @annielou, those days are awful, so sorry to hear what you and Mum are going through together. Are you sure Mum hasn't got a UTI? Has that been ruled out? It seems as though the confusion has moved to another level, which can be an indicator of a UTI - just a thought.

In terms of the eye operation - it's the right decision in my opinion.

Stay strong.
 

Sarasa

Registered User
Apr 13, 2018
1,723
Glad you were able to make an informed decision about the eye op, @annielou, but so sorry that the dementia has moved up a notch. I do hope you can get hold of social services and explain what happened last night. That sort of distress if awful for your mum and for you, and there is really nothing you could have done. If you had gone back, she wouldn't have recognised you as 'her Andie', and might have tried to leave the house to get away.
{{{hugs}}}