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

annielou

Registered User
Sep 27, 2019
474
Yorkshire
Sis came down today so she could be at Social Worker visit and so I could come home for a couple of nights. The visit was about as expected, couldn't offer much and said I'd made mum dependant on me. Doesn't qualify for care home and is only eligible for a small care package which mum has to agree to try and if refuses it now, or when in place it will be removed. I don't know exactly what will be on care plan till finalised but it seems from what she said like will be 4 week respite as before, possibly 2 or 3 x 30 minute carer visits and possibly a day at day centre (we'd have to pay about £10 towards it) and a referal to the voluntary service for a befriender visit once a week.
Mum as always with these sort of visits was more with it than usually is, I know quite a lot of what she said was mixed up or was wrong but to anyone else listening quite a lot of the time she didn't sound that bad. I wish she was as good as she makes out when SW etc there because then I could go back to being her daughter rather than a full time live in carer. According to her she can do most things and does them herself, I just like to make her out to be bad. She doesn't want or need people coming in so doesn't want or need carer or befriender she doesn't like joining in so doesn't want to go to day care.
The SW was here about an hour and half ish, she asked slightly different questions to last time and I don't think went into the same detail as last time either but maybe she had other assessment to go on too. A few of the questions she asked about what mum could or couldn't do like what happened about mum doing her shopping, mum said I went with her, I thought she would ask a bit more about if mum could manage on her own but she didn't.
She also didn't ask why I stayed at mums although I did try to tell her a little about why while she was asking about other things. But she said while she could see why I would want to look after mum, she had apparently moved in with her mum when ill but knew that would end, but she didn't think it was something that was sustainable for me but that I had allowed mum to rely on me and created a dependency by being there and if were to go home there would be some confusion because mum was now used to me being there, but they couldn't step in and take over, they had to look at least invasive way of helping mum while allowing her to be independent. She said we would need to try to know if it worked and sometimes it does have to get worse before it gets better.
She asked at one point what support we wanted, what we'd like to happen. I said I wasn't sure what to say as I know they won't offer what I think mum needs or what I want. While I was thinking of what I could ask for that they could give, or whether to just say what I want is be a daughter not a full time carer, not to be responsible for mum 24/7 to be able to go home and visit a few times a week but know she was safe when I wasn't there, she asked my sister who said she thought I needed some time off. At least a few hours a couple of times a week and a night to go home and be with my hubby and get my work done. SW said they couldn't offer that long and didn't do night time care. Sis said she had thought about arranging a PA or someone to come in overnight and if mum would have befriender or go to day care that would give me some hours in day. Especially if day care transport could pick her up from mums house and drop her at mine so I could stay at mine when she was due back rather than have to go to mums before got back so she wasn't going back to an empty house. SW said that probably wouldnt be do able as transport tend to go on days in areas but could ask.
Then she went on to something else and I didn't get to say what I wanted, not that it would have got me anywhere. I did say later while talking about something else that I thought mum needed to be in a home, not that I wanted her to go in one, but that's what I thought she needed because she can't entertain herself or be on her own for more than five minutes.And at times when she's upset about worried about what she can't do thats what she says too.
She did ask mum at one point what she thought about going in a home and for first time ever to someone other than me mum didn't say her usual you are not putting me in a home. She said sometimes she does think she might be better because she does miss conversation and people being around but she then listed reason why didn't want/need one like not being a good eater and fussy eater and not good at mixing well and not wanting to be with old people as she doesn't think she's old and not as bad as the other people in them
It seemed like SW was thinking about offering a 30 minute call in morning to prompt mum to go in shower and take her 1st lot of tablets, they couldn't do a visit to shower prompt and then another mid morning for tablet so we'd have to move tablets to morning along with shower prompt so only one visit which is ok. Then a 30 minute visit at lunchtime to prompt mum to eat and take lunchtime tablets and then a visit at dinnertime to prompt mum to eat and take tablet, possibly make micro meal (which mum wont have things in microwave) . She suggested if mum didn't want to make meal she could have a hot meal delivered from a service costing around £4/5 a meal.
She also mentioned assisted living so mum had own flat but came out in to a corridor and had to pass reception to go out so wasnt directly outside when checking doors etc she and I might feel safer. They had staff on in week if needed help and call button at weekend, mum could take carer package with her and they had communal areas if mum wanted to mix. Sis did look at one in area herself a while ago and told there were no places and long list and mum said she didn't want to go and sis and me told SW we were worried about the confusion of being somewhere different as often mixes up where lives and where things are in her house now so somewhere new could be more confusing. I told them about mum confusing my house and wanting to leave now
Mum wasn't fond on any of it as expected but SW said will you think about it and give it a go for 4 weeks and I'll come back and see how gone after that. She also said if the carer puts mum already done the things supposed to be prompting her to do or it only took them 15 minute they would reduce or remove the visit. She asked mum to consider it over the weekend and talk to us about it and said she'd ring me or sis next week after spoke to manager. Mum said ok, but just before SW left mum popped to loo and when she came back said I just want to say I don't want people coming in the morning I don't want to have to get up and have people coming in in the morning so I think SW will take that visit away now, she asked mum if ok to try other two and mum said well if I have to stay in and wait for them and be stuck in here all the time I wont be happy.
Mum wasn't very happy with me after visit and said wasn't talking to me as I make her out to be worse than what she is and wanted to palm her off. Sis and I tried to talk to her about visit and why asked SW come and that we weren't trying to palm her off that we loved her and wanted best for her. We talked about how I couldn't cope for much longer, how I had given up all my own things to be there for mum but of course mum didn't see it that way.
Said she never asked me to, that I wasnt always there etc. It got fraught at times with her accusing me and sis of never caring. Saying I wouldn't see her anymore if had carers and she thought we liked being together. All the usual reason she couldn't and wouldn't try carers, day centre etc and she didn't need them. she could be on her own and did everything herself but then when sis said so Andrea can go home and stay at home and you'll be fine on your own, she said no and later when we said if I got ill and couldn't be there she would be stuck and have to do it on her own and she said she couldn't do it on her own and cried.
Its not looking too promising but me and sis will ask when SW rings back if can put them in place and give us the chance to see if mum will go along with it once arranged, Whether she will or not is another matter. She did say that if she puts a care package in place it won't happen straight away at the moment they still have packages from beginning of december they haven't got contract agency to do yet. Said the agencys are already busy and dont have enough staff and weren't taking on new care packages so it looks like even if we get anything it is going to take quite a while to start. So in the meantime looks like we'll just have to manage ourselves.
 

annielou

Registered User
Sep 27, 2019
474
Yorkshire
Hi @annielou , how are you ? How’s things been today ? Mum went to day centre this morning , I was ridiculously cheerful and sold it as they needed volunteers , she said to them “what days do you want me “ she helped the others doing puzzles , some art and sat and had tea n toast , I had to get her to bring her home . I’m not presuming that it will be like this every time though , just grateful first time went well . Back on Monday which I’m pleased about as it’s not too big a gap. She started sundowning though and I knew it would wear her out and she has just disappeared off to her room . Hope your day has been ok ? X
Thanks for the posts xxxxx

So glad to hear the daycentre visit went well that's really positive well done. i hope it continues to go well X
 

Starting on a journey

Registered User
Jul 9, 2019
79
Thanks for the posts xxxxx

So glad to hear the daycentre visit went well that's really positive well done. i hope it continues to go well X


hi, I have been reading your posts everyday but after your SW visit feel moved to comment.

It appears to me that the SW have an opinion that you have made mum dependent on you and nothing you say will make any difference. I wonder when they talk about independence and Alzheimer’s in the same breath? Yes there is a time for independence but this has clearly passed for your mum, sadly.

I know it’s hard but I think the only way out of your situation is to “dump” mum into their care. For example if a carer from an agency or a manager of a day centre called them up explaining about your mums behaviour they would have to take notice!

It might be reasonable to reduce nights gradually over a few weeks so that you rarely stay. Could you limit your visits to morning only TIL the carers arrive? (Realistically that could be a couple of months and she could have stabilised)

On a more worrisome point, being a live in carer for my mum I know what it’s like. Are there any knitting/craft groups that meet in the afternoon that you could go to?
They are my lifesavers, without a weekly creative stress outlet I would be shattered. (Just struggling now rather than shattered).

Are you claiming carers allowance? If so spend at least a little of it on having a good time!! Half of my allowance went on a sewing lesson yesterday, absolute bliss!!

Sorry for the long post, I wish you and your sister well and hopefully your mum will stabilise. My mum was put on memantine and it changed my life as she is so much calmer, although still restless and up at night. It stops the shouting.

Hoping that today brings peace for you all
 

Bikerbeth

Registered User
Feb 11, 2019
731
Bedford
The SW mentioned hot meal deliveries. My Mum had these and generally the selections were good and Mum did eat them. If nothing else she always ate the pudding. My Mum also objected to Carers coming in saying it would restrict her going out, the fact that she did not go out that often unless I took her was of course irrelevant. As Mum was self funding I cannot really comment on the other but sounds horrendous that people who had needs assessed in December are still waiting for it to be put in place now.
 

canary

Registered User
Feb 25, 2014
11,278
South coast
will be 4 week respite as before, possibly 2 or 3 x 30 minute carer visits and possibly a day at day centre (we'd have to pay about £10 towards it) and a referal to the voluntary service for a befriender visit once a week.
That is actually not bad to start with. I would grab everything that is offered and just make it happen.

The time has come to stop enabling your mums wants and start enforcing her needs.
 

Woohoo

Registered User
Apr 30, 2019
664
South East
I think the sw was realistic but she didn’t put it very kindly and saying you had created dependency wasn’t helpful,Not many people could leave her to be confused and upset so what other choice was there .Let’s hope that you get some carer’s visits soon. I’m sorry to see you are still awake at gone 2am :(. If sister is down then I’m hoping you are getting a little time at home with hubby . Is it possible your sister can come down more frequently ? I feel for you @annielou , sending you more hugs . X
 

Woohoo

Registered User
Apr 30, 2019
664
South East
Completely agree with @canary ’s good advice , you got to take whatever they offer so you can say you have tried everything they have offered . It’s hard but yes mum can longer make a decision based on her needs , you and sister will have to do that for her . She will prob adapt to carers very quickly . X
 

Sarasa

Registered User
Apr 13, 2018
830
I agree with the grabbing all you can get, and keep pushing so you don’t get put at the back of the queue.
Saying you had caused your mum to be dependent on you seems a very unfair statement, and please don’t think you’ve somehow made your mum worse. However from the things your mum said I’m sure the service is fully aware of what the situation actually is. My mum once spent ages talking to an occupational therapist that the memory clinic had sent round. After she’d gone we went out for coffee and mum said ‘I think I said enough to stop her bothering me.’ Well it was a good performance, but obvious both to OT and me, that is what it was. Hopefully the SW thinks the same.
As to other solutions. Your mum is past sheltered accommodation I think. We were going to do that for mum and realised that it wouldn’t be enough, and at the time she wasn’t confused as your mum. Carer visits probably will be tricky, but think you need to show they’ve been tried.
Really I think the only workable solution will be a home, but you need to try the ideas first, jump through the hoops. As Canary says it is now the time that needs trump wants.
Thinking of you, and have some quality time with your husband while your sister is around {{{hugs}}}.
 

annielou

Registered User
Sep 27, 2019
474
Yorkshire
Thank you for your posts, you are all right. We are going to have to try whats offered. The SW is right, I just don't like it.
I think whats been suggested is c@@p personally but I know there isn't the money available and they don't want to take away mums independence and rights to make own choices, to be honest neither do I, but I think her ability to make choices are seriously flawed.
You never know though, if these things SW talked about are actually put on plan, and we get someone to do the care package, and mum goes to day centre, and mum gets a befriender she might actually like it, and if she has more people in her life and more things to do she may stop depending on me as much, then I could maybe visit less and not stay overnight.
When and if they happen and if mum does them and the biggest IF is IF me and mum can make it to the WHEN these things might happen as by the sound of it its going to be quite a while.
This morning sis mentioned she may stay at my house tonight rather than staying at mums. Now according to mum yesterday while talking to SW and us later, she is ok on her own and doesn't ask or need us to stay and she told sis she would be better staying at mine as I have proper spare bed. This morning however when sis mentioned it she has started fretting about it like she does everytime I have tried the same.
 

imthedaughter

Registered User
Apr 3, 2019
152
Got to agree totally with @Sarasa

I also object to the 'making mum dependent' comments and agree that unfortunately that's just the situation now and it's unlikely to improve.

Take everything you can, including morning visits if you can as I think it will give carers a fuller picture.

I also thought assisted living would be enough for dad but I was wrong - dad quickly was found to be needing more help than they could legally offer - care is regulated.

Also we did have a great experience with meals on wheels, the menus were good and they were set up in 48 hours. We had lunch and supper and I think even with desserts it was less than £7 a day.
 

Pete1

Registered User
Jul 16, 2019
469
Hi @annielou, sorry to hear the Social Worker didn't help as you would have wished. The funding of appropriate care for you Mum is not an issue, the Local Authority have a statutory obligation to ensure your Mum's needs are appropriately met. The harsh reality is if you withdrew the Local Authority would be required to deliver 24 hour care. I still think respite care would lead to a proper assessment of Mum's needs, if that is on the table you and your sister should try it - the worse that could happen is that it doesn't work as you would hope (its a safe environment). But also take up the offer of additional care support however frugal the offer is (it clearly doesn't meet your Mum's needs). I really feel for you. All the best.
 

Woohoo

Registered User
Apr 30, 2019
664
South East
Your mum hasn’t got the capability to understand she is ill and cannot cope alone , that’s why it is down to you and sister to make the decisions about what she needs not wants . I too feel respite but will help in that it will become clear to others what mum really needs , I realise that will be exceptionally hard to do, it might be thats a better option than you completely breaking down. It’s so difficult isn’t it . Carers could work , day centre , befriender. It’s all worth a try it’s just how long you may have to wait for it . Sending more hugs your way . X
 

anxious annie

Registered User
Jan 2, 2019
248
Hi Annielou
I quite agree with what others have said about the SW being wrong saying you have made your mum dependant, that's just the dementia.
Good advice to take all the help that has been offered (your mum needs it, even if she doesn't think so).
She may enjoy day centre as she obviously doesn't like being alone. My mum didn't think she needed help, but went happily to day centre and I think her need for company is what has helped her to settle into residential care. It would be good to get respite for your mum so you can see if she will settle there, and can be assessed by others about if she now needs care 24/7. It will give you and your husband a much needed break too. I hope it doesn't take too long to get support in place xx.
 

deepetshopboy

Registered User
Jul 7, 2008
238
Hi i read your updated post just wanted to say you haven't made your mum dependent shes not independent shes got blooming dementia sw just not properly informed about dementia! !
My advice is too take take up what they offer you definitely try day centre because nobody needs to come into your mums ‘ territory ‘ my dads similar he cant understand why theres a carer there in hes home in hes kitchen making him tea ‘ im not a baby ‘ quote
its really hard ! Especially when they dont want carers as my dad does also im making do with temp carer( 6 weeks ss carers )2 hours x 2 hours twice week as didnt want more as o know he will kick off so trying to make it less invasive as possible
Try n build the carers up
Little by little to get her used to it , carers and strangers in your home is not nice
I'm still here over night though no answers for me on that one unless i get going and get my own carers in overnight not sure he thats going go down with dad again no help from social worker she just gawped when the question came up
Money /funding is the issue unfortunately when it comes down to it ( box ticking too )
Also ive taken my dad to 3 assisted living places that was my idea about a yr /6 months ago but was quickly shelved thank god , bad idea for my dad I personally would not find them at all suitable for a person with moderate dementia who’s confused if she’s confused about your home she will be completely out of her depth same as she is at home but alone at night by herself in a new environment she needs 24 hour care not a glorified shelter housing with visiting carers she may as well stay at home .
 

annielou

Registered User
Sep 27, 2019
474
Yorkshire
Thanks for all your posts @imthedaughter @Woohoo @pete @anxious annie xxxx
I don't know if it was mums new tablet or the after effects of social workers visit and sis and I talking to her about it afterwards, or if it was sis's influence, or what it was but mum was really calm yesterday and during the day today.
Hubby and I went over on Saturday late morning to pick sis and mum up and go to supermarket and then come back to my house for the day. Sis said mum had been fretting in the morning about her staying at mine that night but by the time we got there she had calmed down and mum was quite relaxed going round supermarket. She still needed help, sis and I did the list and sorted what to buy and sis helped her pack and pay like I normally do, but she was much calmer than normal.
When we were at my house later she was quite quiet but seemed happy enough, she was smiling and talking with us, but not asking lots of questions and not getting het up over things like usual. She did still say some mixed up things and didn't remember some things, including where she lived when it was time to go back home, but her mood was so much better. We took mum home and hubby and I left while sis stayed with mum for about half hour so we didn't all leave en masse and leave her feeling abandoned and sis could gauge if thought would be ok to try leaving mum on own for night which she did about half hour after us.
Sis rang mum to say back when she got to ours and mum rang half hour after to check if sis was back here, think she had forgot sis had rung, but seemed ok and didn't ring anymore last night.
This morning when I rang and then sis went over to see her and give her tablets mum said she'd had a bit of upset tummy which is usual for mum and felt a little bit off it but was ok, she said she had slept ok so it seems like it went better than last weeks night on her own.
Sis said mum was telling her when she got over there this morning that a friend (not the one I've been recently, but a more recent friend) had been staying at hers but mum was getting a bit fed up of her coming all the time and didn't like sleeping on fold up bed so she was thinking of asking our Andie (me) if she could stay at hers for a while so friend didn't come but she didn't think hubby would like it but after a while she stopped talking about it.
Sis brought mum over to ours before lunch and sis left a while later, mum seemed quite chilled again. Normally mum spends most of the afternoon after sis leaves asking do you think she will be home yet? I hope she's ok, will she be back yet? But today she only asked once and just sat happily watching tv and chatting a bit on and off while I did some paperwork.
She did say she ought to go home about 4 as she didn't like walking home too late but when I explained she doesn't walk home and never has as it's too far she just said oh I thought I walked here earlier, so I told her sis brought her and she said oh yes Sis was here today, so how will I get home? and I told her we'd take her like usual in car and she just said oh ok then love,
She did call me friends name when she thanked me for making dinner and a couple of times after that, but I just answered her as if she hadn't and said you're welcome mum. She also said she had forgot where she lived again and how she got home when it was time to go home after dinner tonight but she was ok about it when I told her again that we take her home in car she doesn't walk.
When we took her home we put tv on and sat with her for a little while chatting and she was ok and I decided to try coming home again. When I told her I would see her mid morning tomorrow she said oh are you coming tomorrow, its a long way to walk down from yours yer know. So I just said oh I don't walk, its too far, I always come on buses in week and she seemed ok with that and waved us off. She sounded ok when I rang to say we'd got home and said night night.
So I'm hoping she will manage ok tonight and until I get there tomorrow morning. I'm nervous and worried and feel quite weird and unsettled but I think we need to try me not staying overnight and while she was calmer it is probably best time to try.