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

Woo2

Registered User
Apr 30, 2019
2,278
South East
Thank you @anxious annie , we do ok really was just grumbling earlier . Hoping for late July/early Aug opening . Hope you get to speak to centre Monday , I hope the transport won’t be an issue 🤞
 

annielou

Registered User
Sep 27, 2019
1,430
Yorkshire
Thanks for replies xxx
@Woo2 glad I'm not only non juggler, good news about your mums DC hopefully mums will be thinking of reopening soon and she'll agree to go. It does sound quite complicated arrangements but as you say good to get a rest and I think a big benefit to our mums when they go. Going to try ring mums DC before go over on Monday. And you definitely have been good enough to warrant time off X

Mum has rung 3 times within an hour of us leaving her house tonight and apparently also rung her brother too. The first call was because she thought she hadn't seen me and wanted to know if I'd go see her sometime and the other two and I think the one to her brother were to tell us my dad is dead and she's living there now. Poor mum bless her. And selfishly poor me and hubby too as hubby and I could have really done with a quiet night to try relax a bit tonight.
It must be awful for mum though because she hasn't got a clue what has happened or when in her life and is obviously mixed up and unsettled and it doesn't matter how many times I tell her she does retain any of it she just carries on feeling confused. As the day has wore on today mums questions have got more frequent and lasted longer like they do most days. All the usual ones about needing to go in to council, her other house, is this, that and the other in other house, she's not paying rent, where's W(my dad) is he dead, why did he die, what happened to their house, I thought I'd only been here few weeks, we got back together didn't we, where's our andrea, is she married, who to, where does she live, she used to live with me, you're not her, wheres - (my sister) she doesn't come to see me or ring me now, I think I'll go to my other house tomorrow and get my stuff, where's my--,- where's my ---,on and off all day.
As I left about 7 tonight she asked if I was going tomorrow and I said yes, as she waved us off I was calling her mum and said see you in morning. At 7.09 my mobile rings. It's Mum saying Hello Andrea it's mum. I asked Hello, What's a matter? A grumpy mum said What do you mean what's the matter I want to talk to you! I said Oh ok I thought something might be wrong cos we only just left. Mum didn't know we'd just left, thought 'friend' and her hubby had been, she said sorry and I told her it didn't matter and asked if she was ok. Mum said yes she'd just wanted to talk to me cos thought not seen me and then she moved on to questions and for next 10 minutes we went round in circles, asking if I knew dad was dead, did our andrea know, she thought only lived there few weeks, did she have to tell council, or pay rent, who had been today, had hubby been, what had we eaten etc etc. I kept telling her not to worry about it everything was sorted but she said it didn't feel sorted to her. I told her I know it doesn't feel like it to her, I know its hard but try not to worry because it is. I said her brain mixes memories up when it gets tired sometimes, try not to think about things too much if you can and it will come back to you tomorrow. But it didn't settle mum, round and round we went and I must admit I was a bit short at times. We were in car and I could see hubby tensing up listening to me and mum and I know he is getting frustrated with things at mo and so am I and I felt bad for hubby he had listen and I couldn't leave room as in car and also felt bad cos I'd been bit short with mumwhen i answered her a few times . We ended call with me telling her again I'd be there in the morning and saying night love you lots. She still sounded confused when hung up.
She rang my mobile again at 7.56 and said who she was and that she'd just been talking to Uncle - ( her brother). I said Oh have you did you ring him. Mum said she was talking to him, then she said did you know your dads dead and I've come to live here now. I said yes I know mum it's been a long time. She said Oh is it, Our - (brother) said he knew about W dying when I was talking to him. I asked her Is that why you rung him to tell him about dad? Mum said I was talking to him and he said he knew. He's with ....er whats her name? I told her my Uncles wifes name and mum said Oh yes _ and they've got a son now. I said yes they have -. Mum told me bit more bout him and then said Our - knew W was dead so I thought I better tell you. I said It's ok mum I know. Then mum started asking if there was still stuff in the house and should she get it and so then we had 5 minutes about if she'd lived with dad and where he'd lived and where she had. She told me she thought someone else had told her that today. I said I did mum. Mum said No it was 'friend' who is my 'friend' who comes? It's me mum. Oh I thought it was a friend, so have you been today, and hubby and did we have.. for dinner? Yes. Oh sorry, I get mixed up. I told her again try not to worry about it mum, she asked again if would see my sometime and I told her I'd see her tomorrow.
A minute after we hung up the house phone went, Its me I just wanted to tell you you're dad's dead and I'm living here now. I said I know mum. Did you, how did you know? I told her I'd known a long time and then mum told me she'd just been talking to her brother and he said he knew about it and she'd thought she better ring me and tell me. I probably shouldn't but I told her She'd rung me just a minute ago and just talked about same thing. Mum was surprised and said Did I oh sorry love. I told her to try to relax, try not to keep thinking about things and watch tv or something. I said she'd nothing to worry, about we know where she is and about dad and I know it's confusing but she's in right place and everything is fine and she'd remember it all tomorrow and I'd see her tomorrow morning. Mum said Ok love sorry. I said Vera was on why didn't she try watching that cos she liked that and mum said It is I will. We said see you tomorrow and bye etc and she hung up. Poor mum I do feel sorry for her, it's cruel that her brain won't give her a rest.
This morning had set off quite well, I'd rung her at 1/4 to 9 to tell her we were going to Drs for BP taking today and we'd be over about half 9 ish and set off about 1/4 to ten. She didn't say not going, just said she wasn't dressed yet and I told her no rush we weren't going for an hour so had plenty of time to get showered and dressed and she asked a bit about why going and when and where DRs was but that was it. When we arrived at hers she tried going loo a couple of times like she usually does when going out and asked a few times why going and where it was and if still Dr K, old DR who retired years ago. But not once did she say wasn't going or get annoyed. I just kept saying only for BP and wouldn't be there long. She put her mask on fine when we got there and didn't get annoyed when I told her not to touch it a couple of times while we waited. I couldn't go in room as nurse said too small to socially distance was that ok, I said as long as you don;t have to ask her any questions as she might not give right answers and nurse said it's just a blood pressure test so won't need to I'll come and get you if need you so I said ok. Later this afternoon mum said she'd still got her tape on and when looked she'd cotton wool taped on inside her arm so looks like took a blood test too. I asked mum if took blood and she said yes, She'd put thing on one arm and then stuck needle in other, I asked mum if nurse said anything or asked her anything and mum said Not really, she said I might get something, I think a letter, but I think she might have said I might not get one, I couldn't tell what she was saying cos she was quiet (that's mums go to reason when doesn't understand or remember what said) I assume checking blood to see if deficient in anything like did when went last year and will let us know if have to go back.
Hubby dropped us off from Drs at mums and went to pick up click and collect then brought it back to ours and we took mums out. Mum thought it was saturday cos we'd got shopping and so kept saying I could go home with hubby if wanted then said she'd get our Andrea to come. I reminded her it was friday and I was our Andrea and was going to stay here with her. Hubby stayed for a cup of tea while I wiped and put away mums shopping and then went home to sort our shopping and go back to work, mum thought as doesn't know hubby is off this week as she'd wonder why I wasn't with him.
All day on and off since we got back from DRs this morning she has been asking questions. She hasn't been upset or angry, just confused. The questions are more spread out earlier in day and each spell of questions doesn't last that long so we did manage to chat bit bout other stuff and watch a bit of tele and colour a bit till about 4 when the questions got closer together and last longer and she couldn't really concentrate much so most of time was spent on questions and we didn't do much else.
 
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Woo2

Registered User
Apr 30, 2019
2,278
South East
Sounds like a heavy day of loops and confusion 😞, sorry you have had a couple of calls to deal with too , hopefully you have reassured mum now and she will settle ok and you can try to switch off a little until tom . I know that’s not likely bit the thought is there.🤗 Take care , hope you manage to sleep ok and tom is an ok day🤞
 

DianeW

Registered User
Sep 10, 2013
683
Lytham St Annes
@annielou i really don’t know how you can carry on like this for much longer, I know it’s your Mum and you love and want to keep everything on an even keel for her, but you can’t without paying the price and you and you husband are paying the price...... and it’s getting you both down, even though you don’t want to admit it.

I am not going to go over what you should and shouldn’t do....only you can decide when you as a family (you and hubby), can’t continue this high level of care you are providing .....your Mum is very very lucky to have you.

I will just say I think respite is needed sooner rather than later, what your waiting for may never happen but you do need the break for both of you.

I think yes in an ideal world respite could wait until virus is completely gone....but that may never happen, can you honestly say you can continue this level of care and possibly more if your Mum continues to deteriorate and be ringing you and her brother more?

Your husband obviously wants to continue to support you in the care of your Mum, and I think your a lovely couple who support each other, but there has to be a limit too.....
 

annielou

Registered User
Sep 27, 2019
1,430
Yorkshire
Thanks @DianeW x
I know we are struggling to cope but I just don't see much alternative to trying to carry on unless I'm willing to put mum in danger or at least lots of distress by stepping away and leaving her on her own more and hoping she copes, or letting a crisis happen as in SS terms she's not bad enough for more than a few quick visits a day, or respite. Which will maybe give us a break while mum is there but as MC agreed she may struggle more when comes home afterwards.
If I step back and let SS do their 3, or possibly now mums not taking medication at dinnertime it could be only 2 visits a day and me or carers we arranged, don't spend all day with her then she won't understand why I'm not there everyday anymore and will feel lost and lonely and call more and more so I will still be stressed and feel terrible.
If we had been able to start with short carer visits last year before I started spending all day with her it would have been better and we may not have got to this stage where hubby and I are struggling being there everyday but we couldn't get mum to agree or accept that.
I feel like it's me who doesn't cope well and me that doesn't know what I'm doing, or do it well enough that's the problem really, that mum isn't probably that bad compared to lots of other people with dementia and doesn't need as much care it's just me that doesn't cope well with what she does want/need. Physically mum is much better than a lot of people it's mainly confusion and emotional help mum wants and me that struggles to give it without feeling stressed.
 

canary

Registered User
Feb 25, 2014
12,900
South coast
in SS terms she's not bad enough for more than a few quick visits a day, or respite.
You are basing this on what you were told several months ago.
Things have changed. Her needs have increased and you may well find that SS will change their recommendations too.

Personally, I dont think its going to be long before a crisis occurrs and I am very concerned about your and your husbands health.
 

Lorna44

Registered User
Jul 16, 2016
196
Surrey
I agree, there comes a point where you have to put yourself first...... Your mum would never want you to put yourself through the ringer like this. You need to contact SS for more help and step back if need be. It has to happen for you & your mum and your family. Big Hugs xx
 

Pete1

Registered User
Jul 16, 2019
800
Hi @annielou, as I said before you must be on tenter hooks the whole time - I would imagine you aren't sleeping very well (I've been there - phone by the bed waiting for the call), and you have been battling valiantly for over 9 months now. The situation has changed significantly recently as Mum is concerned and constantly anxious at home. When Social Services assessed previously that was not the case. I'm sure you know at the back of your mind that it will only get worse (again I can sadly vouch for that). At the very least I think that two weeks respite care would give you the breathing space to assess the situation - at the moment you are in the eye of the storm and it must feel impossible to do anything else. Did your sister manage to progress the POA for Mum? I do really feel for you Andie.
 

anxious annie

Registered User
Jan 2, 2019
306
Hi @annielou
You are really amazing , your mum is so lucky to have you to care for her. Like everyone else I worry for you and your hubby and how much longer you will be able to keep this up, particularly when your mum deteriorates and becomes even more confused than she already is.
Please think about putting other support in place so that you and hubby can have a break together without worrying about your mum. Sending hugs xx
 

Jaded'n'faded

Registered User
Jan 23, 2019
799
High Peak
I wonder, @annielou , if you and your husband have had a discussion about the future? Sadly your poor mum is only going to get worse so I wondered if you have discussed what your absolute lines in the sand would be? I know you feel you can cope right now (though I fear what it's doing to you and your husband) but at what point would you say, 'Enough!' ?
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
166
Like others, I’m I awe of the extent to which you have provided this level of care for your mum. But, you must be realistic. This cannot continue indefinitely, it is more than any one person can possibly manage. Sit down and think carefully what would happen if you became unwell yourself, or if your husband became unwell and needed you to look after him. What then? I’m not wishing for it, of course not, but you have to face the fact that things do happen and you cannot assume you will always be able to spend every day with your mum. You need to get SS back for a reassessment urgently and make sure they understand how bad things are on the bad days. Push them for appropriate help, including respite care. You absolutely must protect your own health and welfare, and your relationship with your husband.
 

canary

Registered User
Feb 25, 2014
12,900
South coast
I wondered if you have discussed what your absolute lines in the sand would be?
I think this is a very good point and one that perhaps you should consider very seriously

I also get the impression that although you say you are coping, what is actually happening is that you feel that you aught to be coping - if only you could find the right way of doing it (a very common, but totally erroneous conviction)
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,607
Nottinghamshire
Do you think your mum is coping @annielou ? She might be happier in a home with people around her all the time to reassure her. I know my dad was in the end. I'd convinced myself I could cope but didn't really truly think about how things were from my dad's point of view.

Maybe try for respite and see if it suits her now that visiting is starting again in carehomes. It doesn't have to be a permanent decision. Just try it and see.
 

Sarasa

Registered User
Apr 13, 2018
1,507
Dear @annielou, I've been thinking a lot about you today. There is loads I could say, but that really would sound like nagging, just that I agree with what every one else has been saying.
{{{hugs}}}
 

DianeW

Registered User
Sep 10, 2013
683
Lytham St Annes
@annielou ......your mum already doesn’t understand that you are there with her every day, when she calls you she has forgotten that you have just left her, and have spent the last 8 hours with her!!!! You can’t do anything to change that....it’s her illness.

The truth is your Mum has changed now and can’t keep up with reality of each day, and her confusion is rapidly deteriorating....just because she does still have some lucid moments doesn’t mean she is ok still.

Her emotional needs are just as important as a person who has physical needs.

It is so very sad, but nobody can continue to give this increasing level of care and support without there being a high personal cost, I am very worried for you, your husband and your Mum x

There is no easy answer and some hard decisions need to be made, but please don’t expect your Mum to help you make those decisions and agree, because she is not able to, as she has lost the capacity to understand the consequences of certain decisions now.

I hope you don’t feel people are nagging you....because honestly from a personal perspective I really am only trying to help, as I am sure we all are.
 

Rosettastone57

Registered User
Oct 27, 2016
1,307
I also agree with @Jaded'n'faded .....you need to have a discussion about the future, both yours and your mum. Everyone has their own personal line in the sand and from your postings I'm not sure what yours is. Your mum will never be happy wherever she is, that's the nature of the illness. Seriously, you will find the relief of not " firefighting " every problem , not being on tenterhooks all the time about your mum, overwhelming if your mum is in care home. The pressure will just lift.
 

annielou

Registered User
Sep 27, 2019
1,430
Yorkshire
Oh gosh I have popped on for a minute a couple of times today and seen I had replies but then not really had time to read them properly before I had to come off again until tonight. I'm a bit lost what to say and think now.
I feel a bit of a drama queen and a nutcase, like everybody else is coping so much better than me with so much more than me and yet here I am writing rambling post after rambling post. I must sound like I'm cracking up and I know caring in any capacity is hard but I just don't know why I struggle so much.
I know I haven't given mum dementia and nobody can make it go away but I don't think I help things with the way I react and feel about it, but I just don't see an alternative to me and yes I do feel I ought to cope better and be less emotional. I've always been over emotional and I've always wanted to make my mum happy and help her and now even though I think I'm trying hard to help I don't think I am.
I feel that with a different person looking after her she wouldn't be ready for a home yet. Nobody else seems to think mum is as bad as I do and how I must make her sound on here. The carers don't seem to write anything or act like they think she isn't coping at home. SS and MC don't seem to think she is ready for a home yet, so I feel it's because of me and way I cope with looking after her that I feel and give impression on here that she probably does, but I think it's more because of me than her. Which I struggle with and feel like SS aren't going to put mum in a home because I find looking after her hard and can't cope, especially as she doesn't want to go in one and they think she doesn't need one.
I don't know what our lines in the sand are, I don't think I have one at moment, I'll just try to go on while I can until someone says they'll take over. Hubby and I talked about things ages ago and thought about having mum to live with us even though we have stairs to worry about her on, but after trying to spend night here over christmas and then seeing how she is on weekend when here in day, we said earlier this year that we didn't think that would work. We think she would be constantly wanting to go home and confused and unhappy we were keeping her here, mind you she's not much better than that at her own home now. But I also don't think it would be fair on hubby to have mum here to live now. I have said occassionaly lately that I feel it's getting back to a time when I will feel like I need to stay at mums again on a night to help her feel safe and keep an eye on her. I don't want to do it and don't know if I could cope doing it again which I said to MC on thursday. Hubby has said he doesn't want that, but so far I'm just hoping and praying it doesn't come to that and trying to put it off.
Tonight being an example of when I wondered if I should but put it off. Before I left mums tonight she said she thought her brother might come a couple of times. I thought she just meant for a visit so said he wouldn't due to virus restrictions but mum seemed to think that he had been staying there and that it wasn't her house. She'd been saying earlier she wished her mum wasn't dead cos she would go live with her and talking about brother being married etc, as if she thought it was a new thing, and said I'll have nobody now. She'd also been asking if I knew where W (my dad) was now and if he was dead at the same time so she was obviously thinking about being on her own and I wondered if she'd be ok on her own and thought did I ought to stay with her, but I didn't. I just wanted to come home as today had felt hard work, it probably wasn't unusual for a person with dementia, it's not unusual for mum, but I find it hard.
On the phone this morning mum said she wasn't going to come over today cos she had loads of washing to do but she'd like to come tomorrow. She asked if I was going over and said I didn't need to but I said I needed to go with her tablets so she said she'd forgot bout them ok. When we arrived she was very quiet and a bit grumpy and after giving her her tablets she started saying we could go home wanted to be on her own she'd got cold. She'd not been in shower cos dint feel good. there'd been no mention of it on phone 20 minutes before or to sis a couple of hours before. She didn't want us to stay so I said I'd go and come back later, we had usual leave tablets on fireplace with note I'll do em. I said hubby had go for haircut so I'd come back after he'd been and ring me if wanted me but mum ignored me and didn't speak as we left.
She rang about an hour later asked if I'd been today and said she was sorry she didn't know it was me. She had called me Andie while there and seemed to know who I was. Then she said she hadn't been up long and was bit confused. She told sis on her call at 9 she'd been up since 8 doing puzzles and we didn't get there till 11 so she hadn't got up. She was just looking for excuses why. She said sorry and I told her I would come back when hubby did but couldn't for little while. We were on ten minutes and mum asked me if I was ok and was I fed up of her, I said I was a bit fed up and she asked why. So I told her it was bit of a pain going over to be told to go and then coming back to then have to go back again. I said I know she didn't know that and didn't mean to do it but it was hard work. We talked about mum not wanting help but needing it and she said she didn't like feeling like she was 2 and couldn't do things. I said I tried not to be like that with her but she did need help and her saying go away i don't need it then ringing cos did was hard on me even though I know she doesn't realise doing it. We talked bit more and mum said she wasn't going in a home she didn't want to go in a home. I said I know she doesn't but she does need help I wasn't talking about a home now thought just her having help at home and not wanting it. She kept saying I didn't need to go back today she'd be ok on her own she'd do her puzzles or watch tele if she could get it on. I told I had go do tablets and dinner but it was ok I didn't mind and didn't want her to be on her own all day anyway I had just been bit fed up going back and forth and told didn't want my help.
I know there was no point telling her any of that as she doesn't grasp it and has no control over doing it but I just said it as felt it at time. When hubby got back from haircut I rang mum, she still didn't want to come over to ours but was ok for me to go there so hubby dropped me off and I stayed at mums till after dinner. Most of the day consisted of mum asking where our Andrea was, did I ring her or was it our Andrea who rang and asked her to go over but she'd said she didn't want to, had I seen our Andrea, our Andrea hasn't come has she. If I said I was here and I was her she would pull her Oh yes I know you say that face, or tell me I was her friend not daughter.
She asked multiple times all her usual questions about rent, where was dad living now, did I know where he was, if dad died, thought he was here recently, someone else told her it was 4 years ago, was house empty, was her mum dead, had she gone to funeral, was her house empty, she wished she wasn't dead cos she would go live with her. She told me someone had took her wardrobes out of house and took them somewhere I told her they were in her bedroom there. Mum said Oh are they, wonder how they got here. Told me she'd rung my sister last night and said did you know your dads dead, sis said yep, its four years though isn't it and mum said she'd told sis I thought he was here other day telling me he wanted to be with C. Mum said sis didn't say much, She didn't ring my sister last night, she had rung me to tell me dad was dead and my sister had rung this morning and mum told her same so she had mixed the two up. I didn't put her right just said mm and mum said I'm sure he was here. She then said and my mums dead isn't she, I rang our -(brother) last night and his wife had said yes love she is dead it was long time ago and then her brother had come for chat and he'd said he knew about W too. Our - has got a wife and son now and lives at so and so, I'm glad cos he was on his own for years and lived at so and so. She'd missed out a great chunk of time and gone back to where he lived bout 30 odd year ago. She seems to like that time much more than now bless her.
Then after we had dinner she started asking if my man was coming for me and started saying she hadn't seen our-(brother) or she thought our - might come today. As I put earlier I thought she just meant for visit so said not allowed visit at minute but then after hubby arrived and I was getting ready to leave I asked her Are you going to come lock up mum said Our - might come. I told her he wouldn't be coming to visit tonight and she said he's been staying here. I told her he hadn't and she said he had, I said there's only one bed and its your, mum said she hadn't been staying here he had, she snapped it wasn't her house. I said, This is where you live mum, and mum said Just go will you. I didn't want to leave her upset thinking he'd come and it's not her house so I tried to gently explain it was her house, and brother wouldn't be coming tonight. She said ok. I asked if she'd be ok on her own and she said Yes love and gave me a hug bye and said Sorry for snapping. I said Its ok I just didn't want to leave you thinking he was coming when he won't and mum said I know. So then we said bye and see you tomorrow. I didn't know if should go or not but I did.
That's probably a normal day for someone with dementia, but I found it hard and didn't handle it too well.
 

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