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

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
@annielou please please please stop being so hard on yourself , I wish you could be as kind to yourself as you are to everyone else, you have a huge heart full of gold , you are kind and caring and extremely patient . You seem to be under the illusion that everyone is coping fantastically and are under more pressure than you , well speaking personally I am not coping fantastically , I just don’t admit it .... I am getting extraordinarily close to organising a care home for mum, I am struggling on most days and just today in the shower I realise our house has very little laughter ,it’s full of anxiety and stress, not all the time but enough and I want a better enviroment for Mum . I feel a complete failure for not being the happy bubbly person I was , it’s not all due to mum bring here though. You don’t make mum sound bad and you not dealing with it well, you sound like an exhausted, extremely caring daughter who is open and honest in sharing your feelings and thoughts . I certainly appreciate that as I then feel I am not alone in feeling wrung out . Hubby and I have discussed our lines but they are shifting slightly and we may do more or less than we agreed but both feel we are on limited time now, maybe once she goes back to day centre it will help hugely and things will be easier, I’m hoping anyway . Hopefully your mum can get back soon too. Can you find a way to make the SS care visits work ? Was it 3 a day ? I feel you def need a bit more time away if sis can do a few days that may help . Respite well I wouldn’t even have considered it before as I know she will deteriorate BUT I see it as a necessity if I am to carry on , I worry my daughters will resent me for their whole way of life having to change and youngest having to look after her nan occasionally while I help care for in laws , that we haven’t been able to take them out for a meal , a film, shopping or even a holiday , to visit family we used to see a lot , they don’t have friends round now, I don’t even go upstairs to their room to see them or joke around or watch a film with them . Sorry this bit has become about me but I wanted you know you arent alone ? I think you are dealing with it all amazingly , it ISNT your fault and that you arent dealing with it properly .......it’s the bloody horrid disease. I understand how you feel about trying to leave Mum to a crisis , it’s the hardest thing to even contemplate, I get how you feel about respite and mum potentially being worse after and you having to pick up the pieces . I understand that you don’t want to have to move back in and feel pressured . I can’t tell /advice you , you have to do what you think is right and the least worse option . Just want to say that as much as this sounds harsh , your mum has had her life , not an easy one by the sounds of it but you are allowed to have a life and you shouldn’t feel completely responsible for trying to make mum happy every day . Please try and think of a way to have a whole day off , at least (more if you can ) once a week ,thinking of you and sending great big hugs and a lot of respect to you .????? Repeat after me please ,@annielou is a lovely kind caring person doing her very best and I will be kind to her . Xx
 

anxious annie

Registered User
Jan 2, 2019
808
0
Dear Annielou, you are most definitely not a nutcase or a drama queen, you are a devoted daughter who just wants to do the best for your mum. No one else could do better, or do more to help than you are. You just want the best for your mum.
SS and MC may not feel that your mum needs care 24/7 , but that is because you are there for her, if you weren't supporting her to the extent you are, they would realise she is confused and anxious , unless someone is with her, and they can't expect you to provide this. Whilst you are caring for her , they will let you do this.
You are a lovely, caring person and want to help and be there for your mum, but it seems that unless you can be there 24/7 (which you can't as you and your husband have your own lives to lead too) , that your mum's needs are just too much for you as a family. Please talk to your hubby and sis to about a way forward, that your mum can be cared for, but you also have quality time for yourself and your husband. Sending you big hugs xx.
 

DianeW

Registered User
Sep 10, 2013
859
0
Lytham St Annes
@annielou .......I don’t think for one second that anyone else could cope better than you, in fact you are coping much much better than most would, please don’t undermine the sacrifice you are making, or blame yourself....you are enriching your Mum’s life by being there and supporting her as you are.

The carers don’t report any issues because you ensure everything else is ok, your there to greet them etc, and the few hours they are with her passes off fine

Just think for a minute and note down how your Mum would cope if you stayed away for a few days....what Care would be required to keep her at home?

As has been said above it is only the daily care that you provide to your Mum that is keeping your Mum at home.....but let’s be honest it’s not without personal cost.

Also it is going to be very soon now that you will inevitably end up having to move back to your mums and live with her full time....are you and your husband prepared and happy with that happening, and if not how are you going to deal with it when it happens?

I do think your Mum now needs 24 hour care, not for physical care, but she needs constant emotional support and reassurance from staff, you can’t do it alone, unless you are prepared to basically give up your life and move in with your Mum and have your husband visit each day......how can that possibly work??

I think you need to call SS and get a new assessment, be absolutely honest and tell them you are not prepared to provide the care your Mum now needs and that you are concerned for her safety when your not there....unless you are ok to carry on as you are.

Can your sister come up and stay with your Mum for a few days to give you a complete break, because you won’t get it if sister is staying with you.

I know your going to say that would likely upset your Mum and get her used to sister being there overnight.....but you need the complete break, and sister needs to see the deterioration first hand.

You really do need to sit down and talk about the future care needs with your husband.

Please don’t think I’m saying any of this is easy, I know first hand it’s not, but even the basic information you are giving here definitely shows how things are and that you can’t continue this way indefinitely....
 
Last edited:

Banjomansmate

Registered User
Jan 13, 2019
5,393
0
Dorset
Andrea, it is NOT your fault or the way you are coping that is wrong. I have the greatest admiration for what you are doing for your Mum. She is about a year younger than me and I dread the thought that I could ever get as bad as she is becoming, my heart goes out to both of you, you are both struggling with the state her poor brain is getting into.
You cannot go back to stay full time with her but she obviously needs some company nearly 24 hours a day and the LA isn’t going to provide that. If you were to fall and break a leg how do you think she would cope? If your husband was unwell and needed you which would you choose?
I think you really need to pull your head out of the sand and stop making excuses as to why your Mum shouldn’t try respite care at least. Of course she is going to be stressed by it but she is permanently stressed now and so are you and your wonderful husband. You are trying to carry the whole burden of your Mum’s dementia by yourself and you cannot do that and there is no reason for you to do so. Please contact SS and ask for a further assessment for your Mum and a Carer’s assessment for you. Show them what you have written here because that shows you are not exaggerating or wittering on, it shows that your poor Mum’s mind cannot cope with living alone any more and the dementia will pull you down into the abyss too if the pair of you do not get help soon.
i can honestly say I am old enough to be your Mum and I have had to deal with a parent with dementia and a partner with dementia and with both of them I was the one who had to make the decision that they needed to go into residential care for their own sake. Of course they both said they were fine and didn’t need anything like that but it was obvious that they did. It is like being a pet owner, sadly there comes a time when you have to make a decision that is not what you want to do but it is the kindest thing for the animal. Your Mum is in a permanent state of stress with no recollection as to who you are or what has happened five minutes beforehand and sadly there is nothing you can do to put that right however much you try. You both know how much she loves you and how much you love her so you visit every day to support her but her brain can no longer retain that knowledge and she stresses because she thinks you haven’t been to see her, so in one respect your support hasn’t really helped her at all but it has put a strain on you and on your relationship with your husband.
if Mum were to get a place in a residential care home and you couldn’t visit every day she is going to be upset that she hasn’t seen you but that is what is happening now. At least she wowld have people to keep an eye on her and keep her company through 24 hours, people who can walk away and let somebody else take the strain for a while and that’s what you cannot do, you are shouldering the lot.
I understand your fears about Covid 19 but I believe you cannot live the rest of your life in constant fear of catching it or you will be trapped indoors for ever. I don’t doubt there will be a second and third wave once self isolators like me venture out into the big wide world but we cannot eliminate all risk from our lives.
Please think about what I and other posters have written, we all have the best interest of both you and your Mum at heart.
Carol.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Can I add to the chorus to say that you are not wittering orn being a drama queen, or exaggerating things.

Something that I have noticed on here is that many many people say that everyone else is much worse off than they are, they have it easy and they are just being selfish - I have come to the conclusion that when you are in the eye of the storm you cant see how bad it is. You look around and it somehow doesnt seem that bad (especially when the PWD is constantly saying that there is nothing wrong with them), so it is easy to think that it must be you.

Id like to say now that it ISNT you. You are in a situation that is almost as bad as it gets. No-one else sees it, though, because you are trying constantly to fix things and therefore its all being hidden.

I have a feeling that even if you stayed with her during the night, it wont work, because she often just doesnt know who you are and doesnt want you there - and you cant fix that.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
@annielou, as I've said before I did less than 1% of the things you do for your mum for mine. I visited for a couple of hours twice a week, spoke to her on the phone once or twice a day and did stuff like on-line grocery orders from home. I too thought that I was making things worse. Mum would get in muddles and I thought it was me confusing her. Of course it wasn't, it was this vile disease.
Whatever you do now won't be enough. Rather than helping your mum, you are making your own life impossible. I do worry that your husband won't be able to support you much longer. He seems to be at the end of his tether over it all too. He also has his own parents to worry about, which must make things very conflicting for him.
Take a step back now. Phone SS and tell them what's happen and then email a link to this thread, so they can see in detail how untenable things are. Waiting for Covid19 to disappear or a 'crisis' will be too late. Covid 19 isn't likely to disappear until a vaccine turns ups, which is realistically two years down the line and you are slap bang in the middle of a 'crisis' now.
I'm lending you my hard hearted head, the one that got me through moving mum into care, having a brother that nearly died, and various family things I haven't mentioned here. It might make you think you are being uncaring, but you will survive. At the moment I'm not sure you will. {{{hugs}}}
 

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
Thank you all so much for your replies. I really really appreciate them xxxxxxxxx I think I need to have a good think, not easy as my brain is mush most of the time, but you've all given me a lot of really kind caring advice and I know I need to at least TRY to change something soon for all our sakes.
I am a bit of a defeatist and if someone says no once I don't tend to ask again and I think that needs to change if I'm to get mum help. I don't like to bother people and ask people for things, I feel a bother posting on here most of the time but as its anonymous and voluntary I sort of talk myself in to doing it by saying they can just ignore it and don't know it's me to dislike me in person and it is a good place for me to write my day down and keep a record. I need to think about changing my personality a bit to help mum which is scary but I think necessary.
I don't know what I would have done without this site so far. I started looking at peoples posts last summer after googling about mums behaviour and seeing a link to here, then I joined a few months later and posted my first post when mum had a bad few days and we had to pick her up in the early morning and bring her to our house as she was really upset and confused. You've all been very helpful with support and suggestions and I've posted lots of rambling posts, and it has been really helpful to get my thoughts and worries out. I never mean to write as much as I do but I do tend to overshare, funnily enough up till a few years ago I wasn't one for telling people things I worried about, only mum and hubby really and not always even to them, but now I ramble on like mad about everything to do with mum and its' quite embarrassing and surprising.
There isn't much laughter in our lives nowadays either @Woo2 ? and when there is it feels odd I tend to notice it and think OH. Hubby and I are silly people, most people would think we're odd but we amuse each other, it's part of why I liked him so much first day I met him because I could just be daft and he didn't look at me odd. Mum was always silly too and loved to see us being silly, but now we rarely are. I feel for you and your family, you must feel more torn than me with your kids and hubby and mum all under one roof. I really do admire you and feel for you x ?
Thank you all for your replies they made me cry as you are all so kind x I promise I will try to think what I can do and man up to doing something ?
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
You aren’t a bother and people wouldn’t dislike you at all, your lovely caring natures shines through ! We all care about you even though we have never met and that’s why they all reply , easier for outsiders to see how things can be improved /changed , harder when it’s you . You are doing fabulously and please never doubt that , as said before you have taken on a full time job with no experience , qualifications or help , no one has shown you the ropes , so cut yourself some slack ? If it wasn’t for your great care and support , your mum would of either had a crisis or been in hospital or both so you have managed to single handedly keep her safe all this time . I wouldn’t be trying to change your personality or man up as I don’t think that’s necessary , but just try to sit and think of ways that you could make your lives a tiny bit easier and having some dedicated time for just you and time for you and hubby, you are both just as important . You don’t ramble you are thorough:). Like i said last night it’s very helpful to a lot of people to read your posts and realise others are going through it too . Take care and I hope today goes ok .? X
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
@annielou I do agree with @canary that you moving in with your mum wouldn’t work for the reasons she’s given. I’ve been where you are now and I know how hard it is to come to terms that one’s parent is no longer safe and happy at home. I waited too long and it was only after dad became seriously ill that I accepted that I was trying to hold back the tide like King Canute! Dad went to his carehome from hospital so in a way it was easier for me to decide that he needed to stay there. Having said that - a move was very much on the cards by then anyway.

I’m sure the Covid situation is making it even more difficult for you so I’d just like you to know that even though I don’t post much on your thread I often think of you and hope you can find a way forward that you feel comfortable with. Stay strong.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
I say sod SS and the MC! Believe me, @annielou , the people on here know your mother much better than they do! We know what she is like day to day, all day long, on and on, over and over, the total confusion and bewilderment. We also (between us) have massive experience of the stages of behaviour a PWD goes through and at what point they need a care home.

For me, one of the crucial aspects is that you just cannot comfort your mother (as you so want to do and constantly try!) because she thinks you are someone else. You can't change that and she's not going to 'come back' to knowing you tomorrow or next week or next month, even if she appears to at times. In other words, what you are trying to achieve is no longer possible.

No one here would suggest it was time for a care home if there were any other possibilities that might work.
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
There's no shame in asking for help @annielou . There are some things you just can't fix and dementia is one of those things. We've all been there, read the book, had the t-shirt. You've done a great job, far more than I would have done. You haven't failed because your mum is ready for a care home
 

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
thanks again for your replies xxxxx I wish you all worked for SS. I know mum doesn't want to go into a care home and I don't want her to either really but I do think it's probably what she needs. I think she needs someone there to reassure her whenever she's confused, which can be any time of day now and some days I do think with her not knowing who I am most of the time, sometimes I am actually stressing her out more being there. Besides not knowing if I personally could cope with staying at mums overnight again I think some days she would be more stressed if I was there as she would want me to leave so our Andrea could come, think I was 'friend' and was outstaying my welcome, think she could cope and I was treating her like a baby who needed babysitting and on those days she would very likely get annoyed and want me to leave and if I wouldn't leave she may well try to. I do think mum needs someone with her all the time and I don't think that person should be me because of how it would affect me and mum, but I don't think SS would agree with me.
Even if SS did agree mum needed a care home I am worried about that too. I don't like the idea of mum being in a care home with strangers, what if they aren't nice staff and residents and they don't look after her properly. How would I know where it is safe for her and would I even get a say as we have no LPAs for mum and I don't think we're likely to get them now. I don't feel equipped to make decisions on mums health and wellbeing, I don't even feel equipped to make decisions on my own. I just want to run and hide. That's not really an option though is it.
Today's been an average day. When we went over this morning mum was sat doing her puzzles with washing on the line as if she was settled in for the day so had obviously forgot she was supposed to be coming over to our house today. When we asked her if she wanted to come she ummed and ahhed and said she didn't know if our Andrea was coming. I said I am our Andrea and I'm here so that's that sorted and then did a ta da step and hand wave thingy. She laughed which was what I was hoping for and then I said So are you going to come then? and mum said Ok then. She went off to get her shoes and bag and cardi and we brought washing in and locked up. I noticed mum still hadn't washed her hair but it looked like she had been in shower today. She had on some old trousers that she looks dreadful in as they're wide leg and size 16 so way too big for her. I don't know why she wears them but she does A LOT. She bought them years ago by accident instead of her usual 14 so rarely wore them. Since she lost weight last summer even her 14s are loose on her so sis and I have bought her a few pairs of size 12s but she wont wear them, just keeps wearing same few pairs, including this pair that she found a few months ago and started wearing. I took them off hanger a couple of months ago and put them in top of wardrobe at the back out of the way but she must have found them as she wears them loads now. She had on a nice tshirt but then added one of her knock-about cardis that has also become one of her regular wears whether knocking about at home or going out.
She was ok at our house, though I'm not sure she knew who we were, until 3 o'clock when she said I best be off soon as lads will be in and they may get rid of my stuff. I didn't say anything and she carried on colouring. Ten minutes later mum said W (my dad) brought me my wardrobes back cos their A had took em, well i think it was him or somebody brought em back anyway. I just mm'd and she went back to colouring for another ten minutes then she started saying she better be off cos her brothers would be emptying her mums and some of her stuff was there. I told her it was all sorted, then a few minutes later when she said it again I said It's sorted mum you cleared it together already.
Then she asked another few minutes later where she lived so I told her. Mum said I don't live there! Where's the street? When I told her street she looked at me like I was wrong and sneered Nope its not. Then mum asked me where it was, so I told her village and she said No I don't live in -- where-abouts in --- do you think it is?. So I said Where I went to school on such and such road your road is just below there. Mum shook her head and said Er no it's not, you don't know where it is, I don't live there. She was quite snotty and condescending like I was stupid for getting it wrong, which I hadn't. I asked her where she thought it was, which of course she didn't know but she said I know where it is it's you that doesn't. So I said Ok.
A few minutes passed and I started talking about my colouring as mum had put hers down when she'd started asking about where she lived and I hoped to get her back into it. She talked about mine but didn't pick hers back up and just after 4 she said Well I'm going to get off now. and she sat up and reached for her bag and cardi. I said there was no need to rush off why didn't she stay for tea and she said she needed to go check on her brothers cos they'd chuck all her stuff. away. We had ten minutes of trying to put her off going and persuade her to stay but it wasn't working, she got up put her shoes and coat on and no matter what we said she was going home. She went into porch and tried door, which we keep locked and keys are in internal door which I moved when she went in there so she couldn't get them.
I couldn't convince her to come back in and sit down. She wanted to go home and was going to walk, though she didn't know the way she is always adamant she walks here often when in reality she never has and it would take almost 2 hours on foot. I said if she really wanted to go we would take her which she didn't want cos she wanted to go by herself but eventually gave in to us taking her. I'm pretty sure if the door wasn't locked she'd have been through the door and down the path.
While waiting for hubby and I to get our shoes and go to loo she was saying when do you think my mum died, no it wasn't that long, You're wrong, you don't know, it's not long since, though she didn't know when. She did agree at one point it had been a while ago so the house must be sorted but she still wanted to go home anyway so we drove her home.
At her house she kept saying you can go if you want to I'm alright on my own. Then saying I wonder where our Andrea is? Do you think our Andrea is married. I had a feeling she thought if I left she could ring our Andrea to come. I told her I was Andrea and yes I was married this is my hubby. She said no yer not. Then she'd say I think I'll ring our - (brother) ask him about my mums house, I'd tell her it was sorted and she'd roll her eyes and say how would you know, you don't know. Then she'd say do you think my mums dead and when I said yes a long time ago she'd say I was going to ask her come live here or goto live with her. She said she had to get in touch with brother cos he'd throw her stuff away and her bed was at her mums. I told her it was in her bedroom in there. No my other one, that one was our Andreas when she lived with me (it wasn't) Then she had to ring him to tell him not to throw her stuff away cos her wedding and engagement ring are at her mums. I told her where they were. No you're wrong they aren't there they're at my mums. So I told her to go look and we did and there they were. Oh good I'm glad I must have got them back. They'd never been at her mums because 45 year ago when her mum died her and dad were still married and she was wearing them and she didn't have anything at her mums as she had her own house but mum doesn't believe any of that.
She'd go back then to asking about our Andrea, it was quite funny how she'd ask about her and if I said I'm our Andrea she would just ignore me and say I wonder if she's married and if I said I was she'd ignore that and say I hope she's got someone. Then she said I think she was married but he's older. I dunno where that one came from unless she's thinking of me being with friends hubby who she sometimes thinks my hubby is.
We went round those few things with a bit of is W dead where was he living, is house empty, was he with C? thrown in till about 6 when we had a bit of tea and we got talking about a daft film that was on tele. She seemed more settled when we left about 7.
My sister text me about 8 to say mum had just rung her. Mum was telling sis that dad and nannan had died and mum was going to live with nannan but she had died. She hadn't seen me for a while cos I'm married now. Sis said she talked to her about it being a long time ago and then tried to chat to her about other things. She said she wasn't totally confused but sounded a bit fed up at times but she'd also got her laughing and chatting a bit at times too.
 

Banjomansmate

Registered User
Jan 13, 2019
5,393
0
Dorset
If your Mum went into residential care she would soon get to recognise the staff’s faces even if she didn’t know their names, she has got used to the two visiting carers, hasn’t she? The home’s staff would get to know her too so she wouldn’t be with ‘strangers’ very long. Once she started socialising with other residents there is a good chance she could make a friend amongst them. You are making excuses Andrea, I understand how much you want to protect Mum and none of us have taken the decision lightly, we have been kicking and screaming against the idea of handing on their care as much if not more than the person we love, but it has to be tried, the effort has to be made, for all your sakes.
I felt awful the day I signed the paperwork agreeing to The Banjoman’s move from hospital to residential care, felt that I had let him down but common sense told me he could no longer live safely by himself, he was a danger to himself and others. You don’t yet have that cold logic to fall back on to bolster your concerns but you do have your Mum’s continuing anxiety and stress and I know you would want to ease her mind and not have the worry that one day she just might decide to go wandering off “back home” when by herself.
Please contact SS tomorrow and explain how Mum has deteriorated and ask for a reassessment. You might find they insist on trialling more daily carers (you had to have carers 4xdaily before residential care was considered by our LA) but that shouldn’t stop them giving you a break by allowing Mum to have a week or so in respite care.
 

Palerider

Registered User
Aug 9, 2015
4,160
0
56
North West
Morning

I am up for work, a little early so thought I would send a message.

Its very hard to deal with the stage your mum is now at @annielou because you still will get glimpses of her in the now and that falsly reassures you all is ok again. But, the time will come when that shifts again in another decline and you will struggle as your mum sundowns, starts packing bags and trying to leave the house in the afternoon or at night. Eventuially she will do this even though you are there to reassure her. All you can do is keep going as you are until you can't anymore. It will become all consuming and you won't be able to leave your beautiful mum alone at all. No one can tell you what to do, I struggled with mum and her own wish to remain at home, but in the end it wasn't possible. You said you didn't like the idea of strangers caring for your mum, but it seems by what you write that you have become a stranger yourself.

This path we all walk is painful for many of us, sometimes described as the 'long goodbye' -and indeed it is. Part of this journey is about ourselves and learning when to let go, not because we don't care, but because we can't care enough any more and we can't give the reassurence we were once able to. Mum when she entered the home became much more relaxed, and wasn't isolated anymore and was able to socialise, albeit in her dementia way with other residents. her peers. Its was a difficult time, but looking back it was the right thing to do in the end. You will arrive at this bridge at some point and you will have to decide if you want to cross it and how you will cross it, painful emotionally as it is.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
If your mum went into a care home she would make friends easily - she has already made friends with e the carers who come in - and they wouldnt be strangers anymore. She would also make friends with the other residents. Mum made a friend at her care home and the two of them were always together - they were both convinced that they had been friends since their childhood, which was very sweet. The staff all knew them well and I got to know the staff and residents too, so that they became like an extended family.

So you see, she wouldnt be looked after by strangers - they would become friends. On the other hand, you have become a stranger to her and she is rather suspicious of you because you keep telling her you are someone that she is certain that you are not. So your presence does not reassure her, and perhaps just re-enforces her worries.

You seem to have convinced yourself that because SS have said in the past that she was not ready for a care home, that they will always say this, even though your mum has deteriorated a lot. Her confusion is only going to get worse. I do think you need to get her home before she starts sundowning at 4.00pm. My mum was the same and I always made sure I took her home at about 3.00pm.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
One thing that someone (@Grannie G ?) said to me really resonated. Today is the best your mum is going to be. Also things can seem OK until they are suddenly really not. Even if you don't think your mum is ready for a care home now, it would be wise to get SS in to discuss options.
As @canary says your mum doesn't really trust you I'm afraid. It must be scary when you think someone who is a friend from the past that did you a wrong keeps on turning up at your house claiming to be your daughter. You've mentioned a few times that your mum is quite settled when you arrived. I wonder if you could re-arrange carers to come in to give her meds, check she's eating and basically OK and just contact her via phone for a week or two. She thinks she never sees you as it is, so I don't think you'd upset her more than she already is.
Sorry if you think that really won't work, but what your attempting at the moment isn't working either and at least that way you could take a step back catch your breath and re-group.
As to care home. your mum taken to carers and liked the Day Centre too. At least try a week or two respite. I think when you are in the middle of something you think you are the only person who can sort everything (my son seems to have been like that with his work during lockdown). Take a step back and let others try. Please.
Sorry if that was loads you didn't want to hear, but we all care for you and want the best for you, your husband and your mum. {{{hugs}}}
 

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
Yes I suppose it is a bit of an excuse that they would be strangers, but as you say that wouldn't be for long. Mum has taken to carers ok, she was wary at first but when she had relief one recently she accepted her even though mum said she was quiet and preferred usual one as she is bubbly and knows mum better, she said she was nice woman and she didn't make any fuss about her coming which to be truthful amazed and pleased me. She did enjoy day centre and after sitting with a chatty woman one week mum referred to her as her mate the following week, unfortunately she didn't go week after and then it was lockdown and now mum says she only went once and stopped because it was rubbish, or she don't think she'll go back cos nobody was going so it was boring, but she did enjoy it and hopefully if starts again I can get her to go again if still at home.
I do worry how to pick a good home, if had any choice, if she'd be well treated and safe, one in our town that hubby had relative at few years ago has recently had staff arrested for neglect which is a worry.
I do think at times I am confusing her more and she doesn't always trust what I say when she asks questions because I lie to her about being our Andrea so I'm probably lying about other things like her rent and people being dead too. Luckily mum doesn't seem to remember that 'friend' is part of reason her and dad split up so she isn't mad with her for that, just sometimes thinks she's stayed too long and because 'friend' is there our Andrea won't come as we're not seen together.
I know mum thinks a lot of the time I haven't been, or seen her for ages, but she mostly mum realises someone has been with her even if 'friend' or a friend called Andrea and at the time knows someones there, so if I stopped going and she just had quick carer visits with no one in between it would be like she had been abandoned by everyone and I don't know if can do that even though I think SS will say I have to. If she goes in respite/home she will wonder why our Andrea or at least 'friend' doesn't come to see her but there at least would be people with her and she wouldn't actually be alone.
Going to have to change something though aren't I as none of us are doing too well at moment and a miracle isn't going to happen and suddenly everything be sorted.
Thanks for all your replies XXXX
 

DianeW

Registered User
Sep 10, 2013
859
0
Lytham St Annes
Your spot on that you are going to have to change something...unless as I’ve said you carry on as you are and increase your support of Mum......because nobody else is going to do it.

Please don’t be put off by stories of poor homes, my husband is a carer and he has worked in quite a few homes and honestly the staff care so much for the residents and they do become very fond of each other like families are.....

Some of the heartwarming stories he tells me are so very special and I am very proud that he is able to give that special care and create a lovely bond with his residents.

I really think your Mum would be very happy in a Care home, she would form friendships and would have the constant reassurance that she now needs.

She will still have some difficulties because the illness won’t go away, but you will still be able to visit and spend pleasant times with her, without the heavy weight of being her carer and holding that responsibility.

I think you do need to step back and get carers in to do meds etc and you go in only maybe 2 days a week, plus tell social services you can’t continue to be there every day....it’s the only way.

Nothing will change whilst you continue to do what your doing, except her demands will increase on you rapidly and how you are then able to manage is very worrying.

Example off top of my head of carer plan for week....

Monday, Wednesday, Friday, Sunday = carers 15 min twice a day for meds.

Tuesday, Thursday, Saturday = carer am for meds - then you visit give afternoon med, give shopping on Saturday and maybe have tea together

Of course this can be planned correctly when social services do a new assessment for Mum.
 
Last edited:

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
Thank you @DianeW x
My sister heard back from one of the homes she contacted about respite today, they said they are accepting people at the moment but currently they would have to isolate in their room. They are hoping restrictions will be lifted soon and then we can go and have a look round and there would be no restrictions to isolate in room or to visitors. She said it's nice for us to be able to look round and see where going to be and shame if goes in with no visitors and restricted to room but understands sometimes things get desperate and so they are still accepting people at moment. They test staff weekly and residents monthly for covid and haven't had any cases so far. Sis and I would prefer to wait if possible so we'll see if can and how things go.
I tried to contact the day centre manager this morning but she's away till end of next week so will try again after she's back. Drs rang mum this morning before I arrived, I had to ring them back as mum had made a note but time wasn't clear and wasn't sure what they'd said. They want to check her BP again as it was high. Mum used to have quite low BP but for good few years its been high so I'm not surprised it was last week when we went. Hope that it's not going to be a problem for mum.
I was 'friend' from arriving today until about half three when mum called me Andie and Andrea a couple of times so I thought she had got me back, but then during a round of questions about dad etc she said something about our Andrea not coming and then our Andrea' not been. When I said who I was she said I wasn't and so I asked her who I was she said 'friends' name but didn't know surname, so I asked who I was to her and she said You're my mate. I just left it at that.
She hasn't had quite as many questions today, she's still had all the usual ones, just not repeated them as many times as most days lately, in fact she's been quite quiet and been doing her puzzles a lot of the day. About half four she was asking about where she had lived and about when her and dad split up and when I explained things to her she said she felt like it was only few weeks since they'd split up and thought she 'd seen him recently and had been looking for him, she said I'm really going mental aren't I. I told her she wasn't, it was just her brain getting mixed up when it's tired. It takes old memories like how she can remember being with dad and it feels recent but she also remembers that they split up so her brain puts the two together and tries to make sense and comes up with thought that they split up but got back together. Mum said Yes it does seem like that, isn't it weird and I said it was and also not fair. Mum said No but at least am not mental and I said no Mum you're not. It settled her for a bit but later she asked again and was surprised by fact she had been on her own so long even though she accepted she'd not wanted another man, As she walked off to bathroom she said what a waste though I've done nowt I might as well not have been born.
Mum said today she wished she had been to see her mum, she said she had been going to see her but this was on (lockdown) and there were no buses so she hadn't been able go but she wished she had. Then she said I best go to house now though cos our -(oldest brother) will take all my stuff. I bought my mum a tele like this you know and I bet our _ will take it. Then she said again she wished she'd gone to see her before. When nannan died she was taken into hospital and mum was going to go see her later because dad was due in from work and would want something to eat and she wanted to take us to other nannans (dads mum) for her to look after us while she visited but nannan died before she could go. Nannan had really bad asthma and had been in hospital a few times before with her breathing so I don't think mum realised how serious that time was. Mum has told me a few times in past that she wished she'd just took us straight to nannans and gone to hospital when found out instead of waiting to feed dad so I think there is a bit of that memory still there but as she thinks nannan only died recently and she knows we're in lockdown she thinks she didn't go cos no buses.
She seemed to think she was at her mums house a few times today again, at lunchtime she noticed a couple of cups in sink and said she'd had all these cups and things there before, she'd put some away earlier but she hadn't left them there, there were some plates and quite a few cups, she bet it was our - (brother) who'd had them and left them for her. I think they were the cups and plates from us having tea at mums yesterday but she'd forgot about.
After dinner tonight mum was on about going to her house cos A (dads brother) would empty all the stuff out, I told her no one has seen him for almost 20 year since nannan (dads mum) died but she said he'd still be there so she was still going to go. I told her she didn't have another house, this was her house and mum said she did, this wasn't her house she had meant going back to her and dads house. She went off to wash pots after that with a bit of a glare at me but was ok when she came back in room afterwards and for the half hour before we left.
She rang my mobile about 5 minutes after we left tonight and said hello Andrea it's mum, I said Hello and she said Are you ok? She didn't know we'd just left her and I'd been there all day, when I told her she said Oh I thought it was my other ..... My other one, sorry love. I said that's ok and mum said So you've been today and I said yes we just left 5 minutes ago and she said again Sorry I thought it was my other one, Ok then I'll let you go now love. I asked if she was Ok and she said Yes love so we said night and I told her I'd see her in the morning.
 

Pete1

Registered User
Jul 16, 2019
899
0
Hi @annielou, I think you mentioned the other week you weren't sure what the 'line in the sand' was, in all honesty I didn't know either until it happened and I immediately knew one evening after an incident of trying to get home (it had been in my thoughts for a while but I had put it to the back of my mind), I think that is just the way it is. It would be really helpful if your sister was able to visit the home(s) - hopefully that won't be too far off, to enable some respite care and some thinking space for you and your husband. Never forget that you have given absolutely everything to looking after Mum and keeping her safe. I wish you all the best - stay strong.