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

imthedaughter

Registered User
Apr 3, 2019
313
She is a large lady so I can’t see she has managed to get in the bath , must of had it in her hands I’m thinking but maybe she did stand in there , we bought a higher toilet a few months ago as to help her not have too far to lower and raise herself .
It's a mystery! I am quite amazed - sorry it was all over the place for the clean up though. Toilet sounds like it was a good idea.
 

imthedaughter

Registered User
Apr 3, 2019
313
Thank you both , I shall try a towel or mat on the side whilst I wait to get a different toilet seat . She had a red/plum coloured one at her home but there was always wee on the floor , I presumed as dad was very wobbly it was him but not so sure now . Will give it a try anyway .
Oh that's a good idea. I got dad teal towels for the home in hopes that he'd identify them easily. He's probably never used them... Maybe one of those old fashioned toilet surrounds around the bottom of loo and a bathmat would help, if it doesn't present a trip hazard and you have room for them? Would need washing frequently though I imagine....
 

imthedaughter

Registered User
Apr 3, 2019
313
This could be a big mistake for quite few reasons including getting mum to go, getting there, dealing with mum at appointment, and if does have surgery then dealing with it afterwards could be impossible as mum won't remember what need to do and will probably really struggle with recovery procedure after. But because mum had said before that she wished she'd gone and heard if they could do anything I felt we should agree and at least go see what they say. Because she also has partial hole in right eye we worry that if that does get worse and goes to a full hole and she has operation on that eye she will have to rely on rubbish peripheral vision she has in left eye, so I thought it's worth finding out if anything can be done to restore some sight in left eye.
They may say when look at it that it's too old and unlikely to restore much vision so not worth pain etc of surgery, or we may decide it not worth putting mum through it if can't follow instructions for recovery properly and won't gain much from it, but at least we'd know what could or couldn't be done. If we can get her there :eek::oops:
First of all, don't panic! Easier said than done. Get the second opinion. If you mum does have an operation it may well be recommended that she will need respite afterwards to ensure she does her aftercare properly - Dad went into respite before he was in care to make sure he did all his pre-testing things (as they had tried before and he has just not done it, and then they had told him again what to do and he'd gone home and starved himself ready for the testing - but not taken his sachets, probably just as well - but the testing wasn't for two weeks. So clearly assistance was needed and even though my brother was only down the road he refused, so SS put him in the home for a week and he also got assessed). It was good actually as it was easier to get him in when he did move after.
It may well be confusing, but what isn't nowadays?
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Yes agree , she would need maybe a nursing home just for a few weeks ,and yes it may confuse her more but what choice do you have ?! Mum keeps on about her eyes , I have concluded now that it is a messaging fault from brain due to AZ and not a problem with eyes as she has had 3 check ups . the relevant hospital def do need to be aware of mums diagnosis as it may factor in their decisions, worth going and talking it over . X
I’ve read things on here about people confusing what see and not being able to understand what seeing too. Another sad thing from dementia 🙁
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
First of all, don't panic! Easier said than done. Get the second opinion. If you mum does have an operation it may well be recommended that she will need respite afterwards to ensure she does her aftercare properly - Dad went into respite before he was in care to make sure he did all his pre-testing things (as they had tried before and he has just not done it, and then they had told him again what to do and he'd gone home and starved himself ready for the testing - but not taken his sachets, probably just as well - but the testing wasn't for two weeks. So clearly assistance was needed and even though my brother was only down the road he refused, so SS put him in the home for a week and he also got assessed). It was good actually as it was easier to get him in when he did move after.
It may well be confusing, but what isn't nowadays?
Thanks x So true yes everything is confusing now isn’t it. I think if she was to have op then she would need respite or something similar and think maybe thats something we should push for if go ahead. They may say its too late or cant be done anyway so if get mum there will see what say.
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Two calls from mum tonight, first about bout 20 past 9 and again at 11. She was confused about her furniture and where she lives. She sounded confused and sad and I'm feeling upset and worried about her again and ended up crying again when she hung 2nd call.
First call we were on for about 10 minutes, Mum was asking if she'd left furniture in house she had with dad, where was dad, and where did she live. I tried just saying she didn't have anything anywhere else, she had all her furniture etc at her house with her, and she lived there in her bungalow but it didn't settle her. She asked if dad had furntiture, did he sell furniture, or take furniture, what happened, where did she live when and with who. I talked her through dad left and she kept furniture, moved and took it with her, moved again and took it with her and had bought new things along the way so didn't have much of original furniture anymore. She also wanted to know where dad went when split up and when sis and I had got married, when she had to get a job etc. After few minutes of questioning she seemed to getting it a bit and settling.
She started saying night etc then told me she'd missed repair shop that she'd wanted to watch and I'd left her note on arm of sofa about it. We talked bit bout why, she thinks she was colouring and didn't notice it and then she'd started thinking. That set her off again asking about where she lived, if furniture elsewhere etc and we went over it again. Then she said ok love and said night again, I said night back, but then she asked if hubby still working from home.
After saying yes he was mum started asking if I'd been with someone else before him and asking where I lived and if she'd been. She thought I'd only been visiting her lately but was glad I went a lot. Asked a few more questions about her house and furniture again then she said she was going again, but after we'd said night I'd see her tomorrow and said our love you lots mum asked if hubby was ok. I said yes he was fine and asked if she was ok. Mum said Yes she was ok but she doesn't remember stuff now, I said I know it's when your brain gets tired. I said try not to think too much and try not to work things out cos you'll remember better in morning. She said ok and asked if I'd see her tomorrow and then we said night etc again and that time Mum hung up, I think she still sounded confused and a bit bored but was calmish when we hung up.
She rang again at 11 and asked if she'd woke me up. I said no. Mum asked Where do I live? I told her she lived there in her bungalow. She wanted to know what it was called and when I told her she said she thought she lived somewhere else, didn't she have another house? I told her no she was in right house that was where she lived. She asked her address again and I told her and said she was in right place. She said I keep thinking I've got two houses so I said I know you do mum but you only have one and that's where you are now. She asked if I was sure and said Don't I have another one? I told her No mum most people don't have two houses unless they're rich. Mum said ok and asked again if I was sure she was in right place and I said she was. She said Ok and that she'd go now and said I'm sorry if I woke you up. I told her it was ok we'd not gone to bed yet, we'll go soon and I asked her if she was going to go to bed soon and she said yes she thought she would. I said are you going to be ok and she said she thought so. I told her I'd see her tomorrow morning and we said night etc. We weren't on long that time but she sounded very confused and sad.
I hope she after she hung she got ready and went to bed to get some sleep and forgot about worrying. I had a cry after she hung up. I just feel helpless to help her. Bloody dementia is so cruel! Her mixed up brain just won't let her relax.
We had questions on and off this afternoon about who I was, if I was daughter, but luckily she was quite calm during those and didn't get upset. A couple of times I managed to convince her not to try work it out and she relaxed for a bit but it would come back to her questioning me again after a while. She'd not been bad when we'd left her about 7 tonight but it looks like the mixed up worrying came back again this evening.
 

Bikerbeth

Registered User
Feb 11, 2019
1,315
Bedford
Your patience is incredible, I am sure you feel you have no choice but you do it so kindly so I am not surprised that you had a cry. It is mentally exhausting.
I think you mentioned about using respite after the possible eye operation. Gentle nag please try to get some respite booked before then. I know there is the virus issue but who know how long this will go on for. I know it is slightly different but Mum’s home has decided to start taking in new residents. They have managed to create a quarantine area where the resident has a bedroom and a lounge area with 1:1 care until they can go into the main residential area. The family can also visit from the other side of a window. So just saying please try and investigate options. You can always stop the process if you start to feel uncomfortable.
end of nag and sending you lots of🤗. Enjoy your afternoon and I hope this morning remains calm.
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Thanks @Bikerbeth x I hope mums new dose of sertraline has an effect on her worrying on an evening and lets her relax instead of being upset and worried she's in wrong place.
Weirdly when mum rang at 11 I was on a care home website looking at care homes in our area for ones that offered respite for when virus is more under control. I felt a bit weird, a bit guilty and a bit like I was tempting fate cos I was looking on there when she rang.
I do find those sites annoying though as mum would be LA funded and I can never tell which ones she could go to. My sister thought maybe SW would give us a list of the ones could use so we could look them up etc to choose but when SWs came out they said we'd to find our own. The first SW mentioned there was one near where mum lives that did respite she had clients in that only had smallish top up fee for respite. My sister thought that might be a good one for mum to go to, but I think it would be good if mum went for respite if it was a home that if it suited her she could go to long term if/when SS think its time, and if that has top up for respite then I assume it would have top up for long term and mum can't pay it.
I gave up looking after mum rang last night but will try again another time and send some emails off for details. Mums first SW said she thought we should look for EMI home mainly I think as she thought mum might try to leave and resist help, but second SW didn't put that on her care plan. When my sister asked her about it she said she thought it might put mum off and upset her if went for respite in EMI home but if we wanted to look for one we could.
When we looked before we could only find 4 homes in town that came up as emi, one more or less up my street that we visited last year and sis wasn't too sure about. The one near mums that has a small top up fee, one near town hospital thats not got great reviews, a posh one near me that's double rate of what mums care home plan said LA paid a week, and one that has quite good reviews but the woman my dad used to live with is in there.
On site I was on yesterday there were few that said dementia and alzheimers care but not sure from reading on here if they'd be ok long term. I looked at a video on one homes details and the way the staff talked about the people in their homes and dementia sounded really caring but I don't know what its like in real life and I think it was one that would have large top up. Think its going to take a bit more homework.
 

Woo2

Registered User
Apr 30, 2019
2,011
South East
I’m sorry about last night , I echo @Bikerbeth, you are amazingly patient and caring , crying is an important release valve so please let it out . I would say the sw would give you a list of la funded ones , that’s what happened for a friend , I wouldn’t even consider top up ones as it’s not something you want to commit too . I agree that why not go to the one that she would move to permanently as it will be familiar and she will have started to build up a relationship with staff , I do think if the upped dose of sertraline doesn’t have an effect within the next 6 weeks then you might well need some more help to get through this stage . Mum is starting to get more confused , anxious etc and the time is edging ever closer when I won’t be able to cope /care for her alone . Hope this morning goes ok and you can have some down time this afternoon . 🤗🤗 X
 

Sarasa

Registered User
Apr 13, 2018
1,410
Hi @annielou. Glad you are looking at care homes for respite. I agree about not committing to top up fees. Hopefully the larger does of sertraline will help calm her down, but your mum sounds like she needs constant company, which is something you can't provide. Carers would be able to distract her when she gets worried for instance.
Glad the hospital appointment went well. I sometimes wonder if mum should have another check up at the hospital she used to attend, but as there is nothing they can do, and her dementia has progressed so much since she last visited I don't think it's worth the hassle.
Have a lovely relaxing afternoon, and I'll join in the general nagging and say don't do any housework!
 

Pete1

Registered User
Jul 16, 2019
772
Hi @annielou,
She sounded confused and sad and I'm feeling upset and worried about her again and ended up crying again when she hung 2nd call.
I remember those late night calls very well - it is very upsetting and it naturally makes you feel very sad to think of your lovely Mum frightened and confused. It is a heavy load to carry, I know. In the current situation you can do no more, you should take some solace in that. I know you are now looking at residential care, I think it is important that the Social Worker is aware of the recent developments in that Mum now seems to need constant support and is worried late at night on her own.

Take care of yourself.
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Thanks @Woo2 @Sarasa @Pete1 xxx
We thought SW would give us a list too @Woo2 but nope :(
Sis and I are hoping the increased sertraline starts having a calming effect soon as its awful for mum being so upset and on edge.
This morning when I rang mum was very grumpy sounding and off with me. She asked why I was going when I said I was setting off and when I said I come every day she said No you don't. So she'd probably been thinking hadn't seen me in ages again. I reminded her I'd been yesterday and we'd had stew and dumplings for dinner and she said Oh ok then. I acted all jolly on the phone and when I arrived at mums I carried on being Jolly. I shouted hello as I went in like normal and she said a very sullen Hello. I just chatted on, smiling away like a loon as I washed my hands and put my bag and coat out of way and could feel her thawing and after I told her she looked like a teenager with her hair bobble in she laughed and was fine after that.
She's probably forgot I've been today again though as she was back to calling me 'friend' again before lunch :(.
During lunch there was bit on tv about home births and I said I was born at home wasn't I mum but it wasn't planned was it. Mum said no W (my dad) kept thinking I'd be still going in hospital though and midwife said No point going in now she's had her. I said what I've said for years and years when we talk about it, I was in a rush to meet my lovely mum and knew her and dad didn't like hospitals so thought I'd save them going. Mum laughed and then a moment later said Our Andie was born at home 'friend' and went on to tell me same thing I'd told her. :rolleyes:
Before carer came today mum was asking what they did when carer came cos she couldn't remember if just chatted or if she had to do something. Then she asked about half one if she went somewhere to them or if they came to her and said she'd forgot cos it had been a while cos they'd not been able to come cos of virus. She asked if I was going home when carer came and asked if I was allowed to stay or if had to go. I said I usually went home just after they came to get on with some jobs. As it got closer to 2 when they were due she kept saying I bet she's not coming today, Oh she might not be coming now cos she's late. I told her she doesn't start till 2 so not time yet but mum thought carer came early and cos not there she might not be coming anymore cos of virus. She was happy to see carer when she arrived just before 2 and didn't say anything about thinking she might not come to her.
 

canary

Registered User
Feb 25, 2014
12,656
South coast
Well done in jollying your mum along.
Its bloomin' hard work, though, isnt it?

What a pain that the SW didnt give you a list of care homes. It just creates more work using time that you havent got
 

imthedaughter

Registered User
Apr 3, 2019
313
Fingers crossed Mum is settled tonight @annielou ...

Do you think sis could call round some local homes, ask if they are taking people (for respite or permanent), ask about top up fees, ask about their dementia support, make notes on them all and look up their ratings online, then you can decide together which ones you'd be happiest with, say a list of 3-5, and send to SW? Explain how mum is (on her worst day, no sugar coating) and that she's not on any day understanding that she's home and could soon be a flight risk? From what you've said before, it sounds like something sis could perhaps take on, especially seeing as you're doing so much already.

As you may or may not recall my dad had respite at and then was moved permanently to his home and I wasn't able to visit it beforehand, but I knew that if it didn't work out we'd have to move him. I definitely agree this is best, if you can, but don't let this concept get in the way of getting mum the help she needs.

I imagine that for all our PWD, there is always the risk that eventually they will have to be moved anyway, to a more secure place, for example. Obviously we hope not but I try to be open minded about it. Dad thinks he's staying there 'on a course' or 'for a while' most of the time anyway, and how long he'd been there varies from 'a couple of days' to 'ten years' - time is extremely fluid to him, and I never argue with him, I let the staff distract him.

Hope you're able to enjoy a glass of wine or something you enjoy tonight, I'm looking out the window at some miserable weather so will be declaring it gin o'clock very shortly I think!
 

Woo2

Registered User
Apr 30, 2019
2,011
South East
I’m glad you managed to cheer her up :) I sometimes am horrible because I resent having to act and make things ok, think I shouldn’t have admitted that but it gets me that way occasionally . You are so kind and patient ! Sorry it sounds like a mixed up day again . I had a thought yesterday that I cannot ask my mum anything now , about my birth or anything else as she just doesn’t know , feels so sad . Was you watching Loose Women ? We were and I almost cringed at the talk about Alzheimer’s but mum didn’t bat an eyelid . I could relate to some of the things Nadia does though:oops:. Hope you have had a little relaxing time this afternoon /evening and that you don’t get any phone calls tonight🤞🤗
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
I’m glad you managed to cheer her up :) I sometimes am horrible because I resent having to act and make things ok, think I shouldn’t have admitted that but it gets me that way occasionally . You are so kind and patient ! Sorry it sounds like a mixed up day again . I had a thought yesterday that I cannot ask my mum anything now , about my birth or anything else as she just doesn’t know , feels so sad . Was you watching Loose Women ? We were and I almost cringed at the talk about Alzheimer’s but mum didn’t bat an eyelid . I could relate to some of the things Nadia does though:oops:. Hope you have had a little relaxing time this afternoon /evening and that you don’t get any phone calls tonight🤞🤗
Yes we were and before that we'd watched a bit of this morning and just as we switched it on Ross Kemp was on just talking about doing a series called 'living with' and one program will be living with dementia.I'll look out for that coming on. He said something about it's the uk biggest killer and increasing in next 20 years mum said Oh thanks. Also while they were talking about it on tv Mum said Well my doctor said I haven't got alzheimers but everybody else tells me I have. :oops: She asked me then if she had so I said Yes you have mum memory team DR told you you have Alzheimers. She said I thought I did.
It seemed to be day for talking on tv about Alzheimers/dementia today. Poor Nadia looked so worried didn't she. I do a few of the things they were mentioning too and had been putting it down to menopause. Mum used to be forgetful and do daft things in her 40s like occassionaly put margarine away in microwave and tea towel in fridge sometimes which we used to joke about and she blamed it on menopause. For years mum has forgot names too, going through everybodys names, girls and boys, before getting right one, it used to be a bit of standing joke.
I do worry I'll get Alzheimers too. :( I told hubby a while ago to make a run for it now so he didn't get stuck looking after me.
It is sad that you can't ask your mums questions now🤗, My mum remembers some things so I'm fortunate in that at moment although she often gets things mixed up. The other day looking at photos she kept getting pics of me and my sister mixed up. There is a photo of me as a baby after I've eaten sand and it has been a story mum has told for years but the other day mum said it was my sister.
You aren't horrible at all. I resent having to act like things are ok sometimes too, in fact a lot of the time really. I resent it too when she's accusing me of things and shouting at me for things that she thinks are wrong but aren't and she sulks but I can't. Although I do sometimes sulk but not for long as we can't can we. I don't think I'm very patient to be honest either.
I've been getting summer clothes out today ready to mix in with ironing over next few times and then did some ironing before and after dinner, but didn't get round to changing bed as taking clothes out of underbed drawers, tops of wardrobes etc took some extra time. I'll have to do it tomorrow or it'll drive me mad knowing it's not been done this week. We had a chicken cheese and pineapple salad for dinner today which was yum and we've not had one for absolutley ages as mums not a salad person really.
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Well done in jollying your mum along.
Its bloomin' hard work, though, isnt it?

What a pain that the SW didnt give you a list of care homes. It just creates more work using time that you haven't got
It is hard work jollying yes x And yes a big pain didn't get much info from SW. She said there's a website you can search on for care homes but didn't know name of it and also when she mentioned meals on wheels she said she thought there was more than one company in town, she knew name of one but no others and said I should be able to find them if I googled that too. She mentioned door sensor and panic button but didn't give us details of that either, we got that from memory team OT. :(
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Fingers crossed Mum is settled tonight @annielou ...

Do you think sis could call round some local homes, ask if they are taking people (for respite or permanent), ask about top up fees, ask about their dementia support, make notes on them all and look up their ratings online, then you can decide together which ones you'd be happiest with, say a list of 3-5, and send to SW? Explain how mum is (on her worst day, no sugar coating) and that she's not on any day understanding that she's home and could soon be a flight risk? From what you've said before, it sounds like something sis could perhaps take on, especially seeing as you're doing so much already.

As you may or may not recall my dad had respite at and then was moved permanently to his home and I wasn't able to visit it beforehand, but I knew that if it didn't work out we'd have to move him. I definitely agree this is best, if you can, but don't let this concept get in the way of getting mum the help she needs.

I imagine that for all our PWD, there is always the risk that eventually they will have to be moved anyway, to a more secure place, for example. Obviously we hope not but I try to be open minded about it. Dad thinks he's staying there 'on a course' or 'for a while' most of the time anyway, and how long he'd been there varies from 'a couple of days' to 'ten years' - time is extremely fluid to him, and I never argue with him, I let the staff distract him.

Hope you're able to enjoy a glass of wine or something you enjoy tonight, I'm looking out the window at some miserable weather so will be declaring it gin o'clock very shortly I think!
Yes sis probably would look some up for us, she did contact the one we went to look round last year so probably would again. I'll mention it to her and keep looking a bit myself too.
Good point that Mum may have to move at some point for some reason anyway and I suppose if she goes for respite even if it's one she could go back to later if/when SS say she needs a permanent home, we may have decided we don't like it, or it might not have a vacancy and so might be different place she went back to anyway. So while it's something to consider it's not necessairily the be all and end all. Thanks for that. X