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

Pete1

Registered User
Jul 16, 2019
809
We're waiting for SS to do reassessment of mum, SW rang yesterday to arrange visit but I missed them so hopefully manage to catch them on Monday.
Hi @annielou, this is really sensible, from what you have posted over the past couple of months your Mum does seem to have deteriorated and probably won't present as she did previously. Something needs to change, you can't possibly continue as you are - it isn't fair on you having to sleep on a camp bed in the lounge away from your husband. As I have said before Mum will never want any change, that is perfectly normal, but it isn't solely about your Mum's needs - you matter too! Stay strong, I hope you have an easier day today.
 

Sarasa

Registered User
Apr 13, 2018
1,530
@annielou I stand in awe of your patience and persistence with your mum. I'd have thrown in the towel months ago. I found visiting mum twice a week for an hour or so at a time extremely trying and quite often lost my temper. I only stayed with her once when it was obvious she had dementia and that was for three nights, one of which she wasn't there as she was in hospital for a minor op which was the reason I was staying. She drove me totally nuts and I had to get my brother to come and take her to his house as I couldn't take much more of it. At the time mum knew where she was and who I was, so I wasn't having the sort of conversations you are.
Anyway I hope SS and the mental health team come through with some help early next week.
 

annielou

Registered User
Sep 27, 2019
1,452
Yorkshire
You really do need to be brave & ring the Clinical mental health team for an upto date assessment/ visit. The GP & District nurse as well as social services should be involved. My Mum is now on medication & has carers coming in 4 times a day, you need help. Also when paramedics have attended we have had offers of night time assistance.
You need help as otherwise you are going to become ill with this constant stress! That’s harder to recover from than you realise believe me, I’m struggling with health & mental health & family relationships are almost non existent!

No one can be made to sell their home for care, contact the diagnosing Clinical mental health team first rather than social services & speak to them; care is available at home & the CMHT can advise how & when this is appropriate & how to avail yourselves of it. I’ve got it sorted out for Mum.
This is may be a silly question but are Clinical mental health team the people we deal with at the memory clinic or something else?
I'm not sure who is who and people don't really seem to say what they are when they talk to us.
Gp originally said would refer mum to memory clinic and a mental health nurse would do mums tests. When memory clinic got in touch a lady came and did the test with mum but didn't say what she was but on one of her forms it said her name and then care coordinator.
She sent us an occupational therapist out to talk to mum who was attached to her team who actually introduced herself as that when came out.
Then after had test and ct scan we went to memory clinic for diagnosis and saw a dr who introduced herself as dr so and so but we no idea what sort of dr.
Then original memory worker who I think is care coordinator told us mum would be allocated a support worker who would check on mum every so often for side effects and who was our point of contact for any queries.
She came out and just told us her name and I mentioned support worker and she said thats what she was,
When I rang about mums increasing confusion and agitation the support worker said she had filled a form in and passed it on to a nurse who would be in contact. But I don't know what sort of nurse. In past when I had a query about mums prescription the support worker said they were done by their prescribing nurses so maybe this nurse is one of those or maybe a mental health nurse I really don't know. I feel like most of the time people talk to us as if we know whats going to happen next and how things work and I really don't.
 

Woo2

Registered User
Apr 30, 2019
2,311
South East
Here the clinic mental health team are all part of the memory clinic staff . We see a navigator (care coordinator ) I guess by another name , he comes out once a year and directs us where to go for help etc . How’s your evening been ? We have had fun and games as my youngest daughter sat in a different chair , Mum threw a complete hissy fit saying everyone is trying to use her chair , she never sits with us , she is pulled about from pillar to post , no one cares , everyone disappeared and left me to deal with it :( it created such an atmosphere , my teenagers don’t want to come downstairs, which is sad . X
 

annielou

Registered User
Sep 27, 2019
1,452
Yorkshire
Here the clinic mental health team are all part of the memory clinic staff . We see a navigator (care coordinator ) I guess by another name , he comes out once a year and directs us where to go for help etc . How’s your evening been ? We have had fun and games as my youngest daughter sat in a different chair , Mum threw a complete hissy fit saying everyone is trying to use her chair , she never sits with us , she is pulled about from pillar to post , no one cares , everyone disappeared and left me to deal with it :( it created such an atmosphere , my teenagers don’t want to come downstairs, which is sad . X
Thanks for that x, I'm thinking ours is probably at memory clinic too. I do find it all so confusing though. :confused:
That sounds like a tough evening. It must be hard juggling kids and mum and trying to keep both happy. I'd imagine an impossibility. Things seems so extreme, just little changes seems to throw them off and they take things so personal too don't they.
I'm in a bit of a daze tonight wondering if done right thing and totally unsetlled and feeling guilty as I am at home currently and mum is at her house. I'm petrified to go to bed in case need to get up and go to mums quickly.
Mum hasn't had a bad day, I was me first thing, then I was the other Andrea for a few hours until hubby came and took us to supermarket, and then I was me again. Supermarket wasn't as stressful as usual, and then back to my house for lunch and dinner. Mum was ok most of day, still mixing things up forgetting things but calm and ok and not questioning who were for a change. I found a couple of jesse stone films on channel 5 which she likes and they kept her interest for most of time with a bit of help keeping track of story even though shes seen them before she enjoyed them.
About 7ish she said she ought to be going home so we took her back with some fresh clothes for me and were going to see how she was when got her home.
She asked if I was staying when saw me take fresh clothes out to car and said she'd be fine on her own. Then she said her mum would be back soon anyway which worried me a bit but then she said oh no my mum is dead isn't she, here I am going on about her and she won't be there, I am daft I tell yer.
When we got to hers she was ok seemed quite settled and acting like thought we were just dropping her off and going home. We hung around for a while putting shopping away and chatting a bit. She said would be fine when i asked if wanted me to stay. So we decided to try coming home. We said we'd see her tomorrow, pick her up before lunch and I'd ring in morning. As I left she said mine and 'friends' name which worried me.
When I rang to say I was home she asked where I'd been and then asked if I was coming home tonight. I told her I was home and she said oh yes you don't live here now. asked where i lived and mentioned i lived with boyfriend or hubby now and she'd forgot. We had 10 minutes conversation where she told me she had been to 'friend' and friends hubbys house and they had asked her for lunch tomorrow so could she see me another day when I said I'd see her tomorrow. She seemed quite mixed up saying things we;d done had been 'friend' and her hubby but seemed happy enough there at home and so we said I'd ring in morning and see her soon. It worried me as she had mixed us up but thought as she was calm on phone maybe just let her think was friends today and see how she went on.
She rang bout half hour later asking why i hadn't said I wasn't coming back. Think she'd completely forgot the previous call. She said she thought I lived there still but couldn't find my bedroom.We chatted for about ten minutes again and she said it felt funny being on her own as I'd been there for long time. She couldn't work out if I lived there or not. She said what was happening to her brain, it had gone altogether and was scared what was happening to her. Which worried me and I felt bad.
She still thought she had been out to friends house today not ours, didn't think she had seen me today. She asked if she would see me tomorrow and I said yes I'll come pick you up before lunch and ring you in morning is that all right? and she said yes, but then started saying she thought she was going somewhere else again. I told her I'd ring in morning and we'd sort it then so she said ok see you tomorrow.
Since then I've been feeling guilty for not going over when she's scared about whats happening to her and confused. I've not been able concentrate on much and apart from text sister about it and talked to hubby about it I've just been worrying about her. I keep thinking I should have gone and am being selfish leaving her there confused.
My sister said just be ready to go if she rings and asks you to. If she needs you she will ring back. Part of me thinks when she is confused who I am and I'm there it doesn't help, I think it confuses her even more so maybe I'd make her worse if went, but at least she wouldn't be alone.
Even though she recognised my voice as me on phone if I turned up would she think I'm me or 'friend' and be upset Andrea hadn't come? So I have stayed here in a bit of a fog wondering and worrying.
I hate this not knowing what to do and worrying if she's coping I wish I could see how she is doing, I haven't rung since her last call because it could confuse her more and even if ok on call it could change five minutes afterwards.
I really should go to bed in case she calls in night or morning so I have had some sleep and I want to be up earlyish to ring her when she would normally be up and about to check ok and remind her when we'll see her, and I want to go over mid morning so she's not on her own too long. But I'm so nervous to get changed into my pjs and add time on by needing to getting dressed again if we need to go over.
 
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DesperateofDevon

Registered User
Jul 7, 2019
2,697
Here the clinic mental health team are all part of the memory clinic staff . We see a navigator (care coordinator ) I guess by another name , he comes out once a year and directs us where to go for help etc . How’s your evening been ? We have had fun and games as my youngest daughter sat in a different chair , Mum threw a complete hissy fit saying everyone is trying to use her chair , she never sits with us , she is pulled about from pillar to post , no one cares , everyone disappeared and left me to deal with it :( it created such an atmosphere , my teenagers don’t want to come downstairs, which is sad . X
If it’s any comfort my two when teenagers escaped to “their pits of doom”
( bedrooms) whenever they got the chance (& their was no PWD or scene & plenty of space downstairs. )
I’m sorry that those precious moments of family were dominated by mum & her wobble.
Deep breath & new day
Xx
 

annielou

Registered User
Sep 27, 2019
1,452
Yorkshire
@annielou I stand in awe of your patience and persistence with your mum. I'd have thrown in the towel months ago. I found visiting mum twice a week for an hour or so at a time extremely trying and quite often lost my temper. I only stayed with her once when it was obvious she had dementia and that was for three nights, one of which she wasn't there as she was in hospital for a minor op which was the reason I was staying. She drove me totally nuts and I had to get my brother to come and take her to his house as I couldn't take much more of it. At the time mum knew where she was and who I was, so I wasn't having the sort of conversations you are.
Anyway I hope SS and the mental health team come through with some help early next week.
Thanks x me too, things do seem to move slowly but I suppose like most things there aren't enough people to keep on top of things any quicker.
 

annielou

Registered User
Sep 27, 2019
1,452
Yorkshire
T
Hi @annielou, this is really sensible, from what you have posted over the past couple of months your Mum does seem to have deteriorated and probably won't present as she did previously. Something needs to change, you can't possibly continue as you are - it isn't fair on you having to sleep on a camp bed in the lounge away from your husband. As I have said before Mum will never want any change, that is perfectly normal, but it isn't solely about your Mum's needs - you matter too! Stay strong, I hope you have an easier day today.
Thanks x it was a better day x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,697
Thanks for that x, I'm thinking ours is probably at memory clinic too. I do find it all so confusing though. :confused:
That sounds like a tough evening. It must be hard juggling kids and mum and trying to keep both happy. I'd imagine an impossibility. Things seems so extreme, just little changes seems to throw them off and they take things so personal too don't they.
I'm in a bit of a daze tonight wondering if done right thing and totally unsetlled and feeling guilty as I am at home currently and mum is at her house. I'm petrified to go to bed in case need to get up and go to mums quickly.
Mum hasn't had a bad day, I was me first thing, then I was the other Andrea for a few hours until hubby came and took us to supermarket, and then I was me again. Supermarket wasn't as stressful as usual, and then back to my house for lunch and dinner. Mum was ok most of day, still mixing things up forgetting things but calm and ok and not questioning who were for a change. I found a couple of jesse stone films on channel 5 which she likes and they kept her interest for most of time with a bit of help keeping track of story even though shes seen them before she enjoyed them.
About 7ish she said she ought to be going home so we took her back with some fresh clothes for me and were going to see how she was when got her home.
She asked if I was staying when saw me take fresh clothes out to car and said she'd be fine on her own. Then she said her mum would be back soon anyway which worried me a bit but then she said oh no my mum is dead isn't she, here I am going on about her and she won't be there, I am daft I tell yer.
When we got to hers she was ok seemed quite settled and acting like thought we were just dropping her off and going home. We hung around for a while putting shopping away and chatting a bit. She said would be fine when i asked if wanted me to stay. So we decided to try coming home. We said we'd see her tomorrow, pick her up before lunch and I'd ring in morning. As I left she said mine and 'friends' name which worried me.
When I rang to say I was home she asked where I'd been and then asked if I was coming home tonight. I told her I was home and she said oh yes you don't live here now. asked where i lived and mentioned i lived with boyfriend or hubby now and she'd forgot. We had 10 minutes conversation where she told me she had been to 'friend' and friends hubbys house and they had asked her for lunch tomorrow so could she see me another day when I said I'd see her tomorrow. She seemed quite mixed up saying things we;d done had been 'friend' and her hubby but seemed happy enough there at home and so we said I'd ring in morning and see her soon. It worried me as she had mixed us up but thought as she was calm on phone maybe just let her think was friends today and see how she went on.
She rang bout half hour later asking why i hadn't said I wasn't coming back. Think she'd completely forgot the previous call. She said she thought I lived there still but couldn't find my bedroom.We chatted for about ten minutes again and she said it felt funny being on her own as I'd been there for long time. She couldn't work out if I lived there or not. She said what was happening to her brain, it had gone altogether and was scared what was happening to her. Which worried me and I felt bad.
She still thought she had been out to friends house today not ours, didn't think she had seen me today. She asked if she would see me tomorrow and I said yes I'll come pick you up before lunch and ring you in morning is that all right? and she said yes, but then started saying she thought she was going somewhere else again. I told her I'd ring in morning and we'd sort it then so she said ok see you tomorrow.
Since then I've been feeling guilty for not going over when she's scared about whats happening to her and confused. I've not been able concentrate on much and apart from text sister about it and talked to hubby about it I've just been worrying about her. I keep thinking I should have gone and am being selfish leaving her there confused.
My sister said just be ready to go if she rings and asks you to. If she needs you she will ring back. Part of me thinks when she is confused who I am and I'm there it doesn't help, I think it confuses her even more so maybe I'd make her worse if went, but at least she wouldn't be alone.
Even though she recognised my voice as me on phone if I turned up would she think I'm me or 'friend' and be upset Andrea hadn't come? So I have stayed here in a bit of a fog wondering and worrying.
I hate this not knowing what to do and worrying if she's coping I wish I could see how she is doing, I haven't rung since her last call because it could confuse her more and even if ok on call it could change five minutes afterwards.
I really should go to bed in case she calls in night or morning so I have had some sleep and I want to be up earlyish to ring her when she would normally be up and about to check ok and remind her when we'll see her, and I want to go over mid morning so she's not on her own too long. But I'm so nervous to get changed into my pjs and add time on by needing to getting dressed again if we need to go over.
I truly do believe having carers come in on a regular basis would be helpful. please consider it !
Routine, stimulation & rhythm of day helps
X
 

Pete1

Registered User
Jul 16, 2019
809
We're hoping to some will be offered by SW and we can get mum to try them this time round x
Hi @annielou, just get the social worker to arrange the care company and the visits and take it from there - from how you have described Mum now it is likely she will adapt to a new routine. I know it was a big step yesterday leaving Mum, I got used to the midnight and 3.00am calls, first of all I used to tear round, then I just used to say 'It's 3.00am Mum go back to bed, the carer will be round to get you up' and strangely that worked! I understand your confusion with the system it is about as clear as mud, at the moment you aren't being supported properly and are on the end of a tick box approach, when the SW comes this time you must explain how impossible the situation has become for you. I will carry on saying that you are doing an unbelievable job looking out for Mum, but you do need to look after yourself too. All the best - stay strong.
 

Sarasa

Registered User
Apr 13, 2018
1,530
@annielou, glad you managed to have a night at home. I think you should make this the new normal, so that you can re-charge your batteries for the day ahead. Maybe when you are there, also go out without her for half an hour or so to see how she gets on. I also think when she thinks you are someone else just change the subject as it is obvious she can't really remember and trying to explain is only making her more confused.
You are being a truly amazing daughter.:)
 

anxious annie

Registered User
Jan 2, 2019
310
You're having such a tough time, Annielou. I hope that SS can help out with getting some carers and your mum will accept this in so that you can have a break as you really need and deserve this . Sending you hugs X
 

annielou

Registered User
Sep 27, 2019
1,452
Yorkshire
Thanks @Bikerbeth x
After the phone call about 1/4 to 9 mum didn't ring again. I was on tenterhooks and feeling guilty but I did manage some sleep inbetween waking up and checking home and mobile phone which I had on bedside just in case.
I rang mum bout 1/4 past 9 this morning making sure I introduced myself when she answered so knew it was me as she doesn't always think I sound like me. I asked if she was ok and she said no, and when I asked why she said there was no one to talk to. She asked if I was at my home and if I would show her it. I said I'd pick her up and show her it today. She asked if she'd meet my hubby and did she know him. I told her she did. So she said she must have forgot him. And I said oh well you'll know him when you see him. Unfortunately though she might not know him when sees him or me for that matter but I didn't say that to mum.
She seems to think I lived there with her and have only just got a house and hubby and she doesn't know them. I asked her if she had slept ok and she said no. She hadn't really been to sleep, maybe nodded a bit and she thinks about 7 she might have had an hour. She said it felt funny being in house on her own, she knows I'm sometimes out and I don't normally get up early on a Sunday but I'm in house and she's not used to it being there on own now. She asked me where my sister was and I said at home in..... where she lives now. And mum said oh yeah what about other one? I said theres only me Andie and Sis and she said not another one and I said no just us two me and sis. So then she said oh yeah sorry I don't know what I'm talking about Andie,
Then she asked about if I was in my house now then and did I like it. And asked if she could come and look at it so I said yeah we'll come pick you up and we arranged to pick her up in an hour. She wrote it down somewhere 10.30 Andie and Hubby. I told her to put our names as twice while we were talking about going over she said she thought she was going to 'Friend and friends hubbys' so I told her no mum it was me that asked you to come to our house today so they're not expecting you so I thought if she put our names down on paper with time if she looks at it it might remind her its us not them coming. if she looks at it and if she recognises us when we go.
I feel so bad about leaving her on her own especially as she says she hasn't had much sleep, which she probably can't remember fully but I do think she will have struggled.
I feel really selfish for it and I'm not sure if I can do it again.
 

canary

Registered User
Feb 25, 2014
12,942
South coast
Shes probably had more sleep than she remembers Annielou. If she was worried, she would have phoned you.
Staying with her isnt going to "fix" her and I worry that you will reach carer burnout.
Look after yourself, or you wont be able to look after her
xxx
 

deepetshopboy

Registered User
Jul 7, 2008
280
Thanks @Bikerbeth x
After the phone call about 1/4 to 9 mum didn't ring again. I was on tenterhooks and feeling guilty but I did manage some sleep inbetween waking up and checking home and mobile phone which I had on bedside just in case.
I rang mum bout 1/4 past 9 this morning making sure I introduced myself when she answered so knew it was me as she doesn't always think I sound like me. I asked if she was ok and she said no, and when I asked why she said there was no one to talk to. She asked if I was at my home and if I would show her it. I said I'd pick her up and show her it today. She asked if she'd meet my hubby and did she know him. I told her she did. So she said she must have forgot him. And I said oh well you'll know him when you see him. Unfortunately though she might not know him when sees him or me for that matter but I didn't say that to mum.
She seems to think I lived there with her and have only just got a house and hubby and she doesn't know them. I asked her if she had slept ok and she said no. She hadn't really been to sleep, maybe nodded a bit and she thinks about 7 she might have had an hour. She said it felt funny being in house on her own, she knows I'm sometimes out and I don't normally get up early on a Sunday but I'm in house and she's not used to it being there on own now. She asked me where my sister was and I said at home in..... where she lives now. And mum said oh yeah what about other one? I said theres only me Andie and Sis and she said not another one and I said no just us two me and sis. So then she said oh yeah sorry I don't know what I'm talking about Andie,
Then she asked about if I was in my house now then and did I like it. And asked if she could come and look at it so I said yeah we'll come pick you up and we arranged to pick her up in an hour. She wrote it down somewhere 10.30 Andie and Hubby. I told her to put our names as twice while we were talking about going over she said she thought she was going to 'Friend and friends hubbys' so I told her no mum it was me that asked you to come to our house today so they're not expecting you so I thought if she put our names down on paper with time if she looks at it it might remind her its us not them coming. if she looks at it and if she recognises us when we go.
I feel so bad about leaving her on her own especially as she says she hasn't had much sleep, which she probably can't remember fully but I do think she will have struggled.
I feel really selfish for it and I'm not sure if I can do it again.
Hi
Just wanted to say im going through almost identical to you
Think im further along then you with dad after almost a yr asking for help the social services have sent in 1 carer 2 x2 times a week 4 hours in total tbh its a waste of time as dad doesn’t need personal care want have her help run a bath and can dress himself had all private carers before but they cancelled the situation is soo complex and ive tried going home ive been living here for the best part of a yr nearly since April was going home from late aug to beginning of nov but he was getting disoriented and walking the st all night luckily i had cameras and door sensor so will able to get over via a taxi so that was me staying again ive told ss they said he's not ill enough for a home
The carer will be here for another 3 weeks then what do i do ? The while system is broken
Ive not been able to sleep in my own bed since nov absolutely horrific
Ive had to get a locksmith to put a lock on the door so i can bolt it at night and give him herbel sleeping tablets at night memory clinic wont give him sleeping tabs or anxiety tablets as said they make dementia worse
Im now left thinking what to do do i pay 160 a night for carers to come in at night then rush over in the morning? Dad wont go even to daycentre ive tried several different ones
Ive troed getting a move as we are both in council property had no help whatsoever from the council and mp never got back to me went to see solictor which will cost a further 5 k ! The situation is hopeless
 

canary

Registered User
Feb 25, 2014
12,942
South coast
The trouble is, @deepetshopboy that SS wont recommend a care home unless it can be shown that the PWD is at risk of harm or harming others. All the while someone is with them, keeping them safe, SS will not take action. If you had not been able to move in with your dad and prevent him from wandering outside, then SS would have recommended a care home to keep him safe. The care system relies on the fact that most relatives are unwilling to force a crisis and will do everything they can to prevent one
 

deepetshopboy

Registered User
Jul 7, 2008
280
The trouble is, @deepetshopboy that SS wont recommend a care home unless it can be shown that the PWD is at risk of harm or harming others. All the while someone is with them, keeping them safe, SS will not take action. If you had not been able to move in with your dad and prevent him from wandering outside, then SS would have recommended a care home to keep him safe. The care system relies on the fact that most relatives are unwilling to force a crisis and will do everything they can to prevent one
I know ! But to be honest i think with my dad as long as hes deemed capable of saying no I dont want to go to a home they wont make him and said care home will have a hell of a time keeping him there he will be ripping the doors off .!
I did try to go home but like i said it wasnt safe for him he was disoriented and distressed I couldn’t bring myself to keep going home at night and leaving him theres no point id be up all night and then over in a taxi when he wanders out and I haven’t heard from the ss since so i dont know what to do or whats happening after the carer leaves i think the only thing i can do is advertise privately for live in carer 2 days /night a week .sorry to jump on your thread annielou