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Date: 14.06.2019
From: lois

Subject: Hi Lucy Colin

I asked the moderator to remove all the dodgy ads as they had added loads more. They removed us as well I don't remember any of us saying anything Dodgy. LOL

Lucy sorry your visit wasn't very good. Have they discussed with you what may happen after the two weeks is up?
Lucy if I can help with any tips just ask. I am sure the North and South work pretty much the same. (pretty useless as one another)
Joking aside ty to have a good week-end. speak soon
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Date: 15.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

I lois , dont worry if they removed anything else , I am pretty dodgy , or so I am being told ,

I am having a good week , new (very old ) car , well bit newer than last one we had for 9 years but it works & I will be able to get in it + getting a new chair , one of those that lifts my old worn out joints

hope you are ok & getting on well
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Date: 15.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Not sure yet Lois, the social worker was meant to go and see him during last week and she hasn't so not sure what happens come Friday. I don't have much faith in her at all.

That's great, Colin, about getting a new car, well even if it isn't brand new, as long as you can get around in it that's all that matters and the chairs are good, I have one too and also a bed that lifts up too, oh and a higher toiler seat lol.

xx
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Date: 16.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi Colin glad you are having a good week.anything that is going to help you get mobile and out and about is good.
The chairs are great my aunt has one she loves it. Good luck with it all.


Lucy you can ask for a new social worker.I changed Mums in March.
They seem to be leaving it a bit late if they intend giving your brother more care time. Maybe you might have to call and just ask what is happening.

Take care all speak soon.
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Date: 16.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Just thought I would shift our post to the top.
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Date: 16.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

They don't take the hint, Lois. Why on earth are they on an arthritis site? so annoying.

I will be calling the social worker during the week, so frustrating when people don't do what they should be doing.

I've been in most of the weekend as not feeling great, i think it's a mixture of the cold and a bit of a flare as feeling so sore.

Take care everyone xx
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Date: 18.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

I am off to the eye clinc today again , been like second home for me of late , had problems with scleritis when they changed over biologics & now have a ulcer on my eye so got 5 or 6 drops to put in my eyes

hope u guys are good , take care
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Date: 18.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

That's not so good, Colin. I hope you get it cleared up soon and keep using the eye drops.

I'm not feeling good at all today, I'm thinking I may call and ask for a steroid injection. I've had a cold or virus but I think a lot of it is coming from the RA and my ankles are so painful, can barely stand on my feet and shoulders sore too, I honestly think stress triggers this.

How is the weather at your end, Colin, we have had an awfully lot of rain although it's dry at moment but i'm still using a hot water bottle at night and this is June too.

Take care xx
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Date: 19.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi Lucy, just been to see my mum. My hubby is so quiet usually but to-day he lost it big time. My mum hasn't had a shower since she came home last Thursday. She is incontinent let's leave it there. I have never seen him so angry. I have been in touch with her social worker waiting for a call back. They have changed the care company and this one is clearly not working. The better staff have left and not replaced. So standards are dropping.
I am going to see if I can get her moved.

I am not surprised you feel unwell Lucy stress is a big factor for us. I am in trouble this week. This weather doesn't help either.
Take care

Colin your eye sounds really sore I hope they get it sorted for you. All these drugs take there toll on us but what can we do. Take care.

Off for my scan on Saturday. Hoping for good news but is doubtful
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Date: 19.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

That's the same reason that I lost it with the social worker, Lois, and I called today and of course she was out and hasn't bothered to call me back and I am going to see my brother on Friday and I know he will be expecting me to take him home but I have a feeling she will want him to stay there as it will make her job easier and without carers he can't go home. If I had power of attorney it would have made things so much easier.

Hope the scan goes well, what are you getting scanned? I went for one a few weeks ago for osteoporosis and surprisingly it was normal.

Take care and lets pray for some sunshine xx
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Date: 21.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi Lucy, the safeguarding team have got involved because the Paramedics reported she had an untreated back ulcer. Their documentation is below average.
I am waiting for a meeting in the Hope's of her getting a move with more care facilities. I have no idea how long all this is going to take. Between the family we are visiting every other day so that will keep them on their toes.

I am having a spinal scan. I hurt myself trying to get mum out of the car. They suspect another prolapse disc. I am worried because I have had a disc removal before and surgery is the last thing I want.

On a brighter note we have blue skies and a strange yellow circle I think they call it the SUN. This keep care x
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Date: 21.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Lucy, social services are a nightmare for calling back ring again. I had to ring three days running before I got a call. They are really busy but for me I am only concerned for Mum and you for your Brother. This is exactly as it should be.
Just keep calling until you get your answers. They should have sorted all this by now.
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Date: 21.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Lois,

Sorry to hear that your Mum has a back ulcer, that sounds so sore, poor soul. A lot of the things that are happening are caused by neglect. It's not right that they get away with it.

Oh I hope the scan is normal, I wish I had a magic wand and could wave all the pain away from us all.


After two days of calls and emailing I got an email last night to say she would like him to stay until she has spoken to the mental health doctor as on his last report it was said that he had capacity and this is debatable. I am going to see him today so I hope he is agreeable to that as there is no care plan in place if he goes home. I have booked a hotel for tonight as it will save the drive home tonight and I can see him again tomorrow and hopefully take him out somewhere. The forecast tomorrow looks better.

Have a good weekend
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Date: 24.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

hi Lucy , the words capacity fills me with dread , the hospitals etc just seems to use it to how it suits them , we had problems with my late mother-in-law , they dont care about the carers

it comes down to can he look after himself , & be safe , most things can be set up in a home or flats where there are someone on call , we kept my Mother-in-Law at home to long , she needed 24 hour care & was awake most of the night & only the last three weeks of her life did she go into hospital & home , its very hard on the family looking after them
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Date: 24.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Colin. You are so right. At the moment I don't know what is going on. The social worker hasn't been in touch so he is still in the care home and to be honest I really can't see him getting home as he is quite confused. I am so disappointed in the care he received at home (I should say lack of care) if the proper care had been on place he may have managed at home but he wasn't being looked after at all. When he was at home he was going out and leaving his door unlocked and the same at bedtime. He wasn't even sure where his light switch was. It is such a worry though. The care home isn't perfect but at least he has people there that are hopefully keeping an eye on him. Hope you are doing ok, Colin x
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Date: 25.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi, well mum is back in hospital she had a fall and the staff left her on the floor 5 hours waiting for an ambulance. They are now wanting to talk with me because I have complained as well.
My mum had a blood transfusion because she was so aenimic. This is what was causing her falls. I saw her later that day and she looked so unwell.
She may be 93 but she deserves to be treated better.
Colin and Lucy it is so hard to be left to deal with the unknown this is the first time I have encountered Dementia and I hope it is the last time.
Lucy good luck with it all.
Just waiting on my ct scan results.

Take care both x
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Date: 26.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Sorry to hear about your Mum, Lois. That is a terrible time to wait for an ambulance, you would think at 93 she would have been a priority case. I hope she is getting good care at the hospital.

Hope you get good news with the scan.

I hear we have to get some really warm weather over the next few days. It will make a change and be nice to sit outside.

I had a call today from my brother's friend, he was up visiting him today when the social worker came in, she told him that he will get sent home once they get a new care plan in place for him, that is a worry as he really isn't fit to look after himself, will just have to wait and see what transpires.

Take care everyone and I hope your Mum improves soon, Lois. xx
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Date: 26.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

I know but I don't blame the NHS what can they do no money not enough hospitals.

I hope your brother gets the care plan he deserves. They should be involving you how can your brother answer the questions and know whatis best for him. I go mad at home about them questioning Mum. She has no idea what they are asking her
I am waiting for a call about what they are going to do about mums care.

Lucy I hope the sun comes out these grey skies are making me miserable SAD sufferer. I don't mind cold rain snow just grey skies.
Take care speak soon
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Date: 27.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Just bumping up
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Date: 27.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Lucy & Lois I feel for you guys , my late father-in-law was not that bad & we could work around most of the problems he had but my mother-in-law was different & alot depends on the personality

twice we was forced by the hospitals to have her home , it is such a commitment to look after someone 24/7 , they did give us three days a week night sitting , but my wife would be up 5am & my son going bed after 3am

Lucy dont wait and see what transpires , you cant trust them , they respond to who shouts the loudest , the work capacity is change to how it suits them , dont offer to have him home , it seems cruel but you would never cope , got yourselfs to think of
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Date: 27.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Colin, His friend called me today to say that he went to see him at the home today and he wouldn't speak to him, he is very angry that he is still in there and wants home. I called this afternoon and the nurse that I spoke to said he doesn't want to be there so it makes things very difficult now especially when they are saying he has capacity, so he could really leave if he wants to. The social worker seems to be ignoring me, It would be a lot easier for us if he did stay but if he hates it then it seems cruel to leave him there. she hasn't replied to my email and doesn't return calls. I was hoping he would have settled and if not then she would have had a care plan in place for him.

How are things with your Mum, Lois? Any word on your scan? It is a scorcher here today, really warm. I have just stayed between the house and the garden as too warm to do anything else.

Have a good weekend xx
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Date: 27.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi Colin you are 100% right. I went to see my mum today. Her consultant was there I told him my concerns and I was waiting on Social worker. Guess what this afternoon I get a call to say they have found mum a three week stay in a care home no charge and she will be accessed there
AMAZING sometimes you just have to bite the bullet and go to the top.
Not saying all will be straight forward
Lucy you can speak for your brother believe me they will leave you with it. You need to know for his sake what care plan they intend doing. Ring and ask who you can make a complaint to. It is so hard when you love someone to be hard. Lucy my back issue is because I was stupid enough to say I will take her home from hospital. She slipped getting in the car I caught her and new things had gone wrong in back straight away. Still waiting on results.

I am 68 now and feel it lately
We just take on far too much as Colin said and we pay the price.
Take care the weather is great today.
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Date: 27.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Guys I do feel for you , its never easy

Lucy , one of my older brother has dementia , over fifty years ago he had a accident on a push bike when he was a young lad , endded in a coma for two weeks but was left suffering epilepsy , as a result of drugs & epilepsy he has dementia , he cant stand the noise from his grandkids & goes into his room , its never easy & such a shame

we found it very had with my mother-in-law , my Wife & Son was at the wits end , no help from social care , she refused respite & its all about her , not saying your brother the same + your health not great , think hard before & get a exit plan with the social workers

Lois , hope your back is better , & with some good sunlight will make you feel better
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Date: 27.06.2019
From: lucy

Subject: Re: Hi Lucy Colin

Colin, My brother has never married and always been on his own and likes his own space so I suppose being in a home is especially hard for him. He has had a few bad falls probably because of alcohol and it may well have contributed to his problems with dementia. I am at my wits end wondering what is best for him and even thought of bringing him to stay with us but after reading your posts I am wondering if this would be taking on too much as we have our own health problems. My husband has Parkinson's disease but it is hard travelling to see him every week and beginning to wonder if it would be better having him here,

Hope your Mum settles in the care home,Lois. xx
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Date: 28.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Lucy , my late Father-in-law had Parkinson's , his GP knew he had it by the wat he walked/shuffled into his surgery , its a horrible illness , he also had mini strokes epileptic fits & after he died we found out he had Lewy body dementia , within six months he would not have known us

he was never a problem caring for , its non of my business telling you what to do , your husband will need some help & get attendence allowance for him , I do feel for you , take care
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Date: 28.06.2019
From: Lois

Subject: Re: Hi Lucy Colin

Lucy enquire about assisted living. It worked for mum. I guess Scotland would work exactly the same as down south.
He would be allocated somewhere with 24/7
carers on site. He would still be able to retreat to his own space. Mum had a one bedroom purpose built flat with wetroom.
This scheme is co run with local councils. His social worker can help you with this. It can be done. I feel for you so much.
Mum will probably be going next week when she comes out of hospital.


Colin it is a shame your brother retreats from the grandchildren. My mum used to do the same when mine visited. It just got too much for her. I found mum retreating more and more to her room hard but then I realised her bedroom was her sanctuary.
Take care.x
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Date: 30.06.2019
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Date: 30.06.2019
From: Colin W

Subject: Re: Hi Lucy Colin

omg they are very desperate to con someone with thier dodgy websites

must be something we posted that impressed them :)
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Date: 01.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

What a cheek they have, bad enough using our site but now they are onto us. lol. Perhaps they think if we buy their counterfeit bank notes we will be cured. We could go and live in the sun by the beach if we buy enough.

Hope you are both doing alright. Have you had your scan results yet, Lois?

I can't get rid of this virus or whatever it is that I have so i've made a doc's appointment for tomorrow just to check that it isn't in my chest.

Are you still on any of the biologic drugs, Colin?
How is the leg ulcer? Hope it's a bit better and your eye. xx
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Date: 02.07.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Lucy , I should be changing biologics back to the tablet one I was on last year , done little for RA but kept scleritis under control (eyes)

ulcer are not bad justa shame everything else is knackered , wont do list , post will be greated that the stupid scam post

hope you are ok , & hope your brother settles in somewhere btw dont listen to me , do what you think is right , we did not have a chioce because they decided my mother-in-law had capacity , second time she wanted to stay on the ward which was not what they planed
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Date: 03.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi just a quick post. Hope your brother is doing ok Lucy.
Mum still in hospital long story. I am so stressed at the minute.

Colin i wish you well and hope you get to where you want to be. I have stopped all my meds after a long chat with gp. I am coping with it so far and feel better.
Speak soon take care.
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Date: 04.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Just bumping post up. I am not selling anything honest.
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Date: 05.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Guys,

Hope you are both alright. I've had some sort of virus, still not feeling great as coughing a lot and hubby has it too. I've been given antibiotics so if no better today I will start taking them.

Are you having sunshine where you are Colin? Do you live close to the sea? Can't remember if you said it was Cornwall. It is dry here but really doesn't feel like July, last night was quite chilly.

Hope you Mum is a bit better, Lois.

Have a good weekend xx
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Date: 05.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

bumping up
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Date: 05.07.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Lucy , we are on the west coast of Mid Cornwall , Meva & Charlestown where they film Poldark is only a few miles away , I am hoping to get out next week & try to find somewhere to see & here the sea

the OT I seen was very good but nothing has happened since , still not started my biologic , they are not a patch on yours , somehow need to lose weight & drugs & be healthy to get my joints done
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Date: 05.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Colin, That is a lovely part of the country where you live and your weather is always warmer than ours here. I love the sound of the sea.

I've had an awfully lot of rituximab over the years and don't think it is working as well anymore plus before I seldom had a cold and now when I get them they seem to linger on. I've put two stone on since starting it, not sure if it has anything to do with it, maybe too many glasses of wine lol

Have a good weekend and take care xx
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Date: 08.07.2019
From: Colin W

Subject: Re: Hi Lucy Colin

Lucy , the grass is not always greener & most the anti-tnf are crap , look at your other DRAMD first , you can always go back on Rituximab or you can down here , hoping to get out tomorrow & over next few months see if we can change a few things to make it easier to get out the house

next plan maybe weight loss surgey ( the boss is not kean on the idea !!! )
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Date: 08.07.2019
From: lois

Subject: Re: Hi Lucy Colin

Hi, Colin and Lucy,
I think all the pills make weight gain a nightmare. I came off all my pills and 10lbs came off straight away. I have lost over a stone now. I would like another stone please but I think I might have to work hard for that.

My mum is in a care home being assessed and to-day she had another fall and went to A&E. They asked me to take her there but although I felt bad I said I was out. I just think they need to see that without my input she cannot care for herself.
The hospital called and said she is fine and going home.
I am learning to toughen up otherwise I will be back to square one. I do feel a little bit bad like I am ignoring Mum. I have visited twice she has only been there since last Thursday. I will pop in tomorrow to check on her.

How did your brother get on Lucy.
Hope you and Hubby are feeling better. I will try to blow some better weather your way.

Colin I didn't realise you lived in Cornwall one of my favourite places Devon and Cornwall was always our holiday destination when we were kids. My Dad loved all of it and would of lived there given half the chance.
I hope you got out and about and got some sea air.

Well take care x
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Date: 08.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

Hi Colin & Lois,

Surgery is a lot to think about, Colin, I would be trying all other options first, it's hard when you have been on steroids as i'm sure they will have contributed towards it. I went for a wee swim today, I am having problems with my ankles but in the water it was fine, so I will try that and cut down on my wine.

Sorry to hear that your Mum had another fall, Lois, it is hard but I am of the same mind as yourself, I keep telling them that I can't always be there and it does put pressure on you when you have your own things to deal with. We went on Thursday to see him and we took him out for a couple of hours, we went to a hotel for afternoon tea and he got a pint of lager. Yesterday his friend took him to Ayr races, so at least he is getting out and it is a nice home, he has his own room with bathroom and tv and it is a nice big room that he has and in the dining room they have lovely table cloths on the tables, they even have a hairdresser, but he still wants to go home, we are still waiting on the social worker getting the doctor to re-access him regarding capacity, personally I think he would be safer staying there, she certainly isn't rushing for this to be done.

This is the first day in a few weeks that I finally feel as though this virus is lifting. I got an antibiotic prescription but decided to wait and see if it would go on it's own before getting it so hopefully i'm ok now.

Enjoy your days out and about Colin.

hope things improve with your Mum, Lois. xx
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Date: 09.07.2019
From: Colin W

Subject: Re: Hi Lucy Colin

well what happened was !!!! we live in a town on the south coast , & they decided we needed road works about hundred yards up the road , which means chaos , + my joints not great & my brother pulled out because his Son wants something & so endded going now where , I am very happy NOT


lois , hope your mum goes on better , its never easy but she needs to be in somewhere like that where there is 24/7 care

Lucy , think your brother getting out will help him & its a bit more like normal life , pleased your cold is settling at last

take care
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Date: 09.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

Uff, same here Colin, we have a road closed not far from us and it's to be closed all week. Goodness knows what they are digging up, think it's maybe one of the cable companies.

I called today to see how my brother was as it is going to be the weekend I think before we can get down, they said he is sitting in his room all the time and doesn't want to come out for meals or socialise, he has told me he doesn't like to be around the type of people that are there, some do look quite bad.

Going to go to bed shortly, hope you are both sleeping alright. Night night xx
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Date: 11.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Bumping up
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Date: 11.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Just a quick post. Mum had some glue to a cut on her head. She seems ok and isnt to bothered about it. She is more bothered she cant get her hair done. She is still bothered that her hair must be done by a hairdresser every week.
I am shattered been gardening all this week. I love gardening I just let the world go by when I am working in the garden. Take care
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Date: 13.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Bumping up.
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Date: 13.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Hi guys. Just popped in to say hope you have a good weekend Off to see Mum shortly. Then a bit of down time with my daughter shopping. Maybe a coffee or two.
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Date: 14.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

You have a good weekend too Lois, you to Colin. Hope you Mum is improving, a good sign if she is bothered about her hair.

I am going to visit my brother this afternoon, we are going to stay for a couple of nights in a hotel close by and that will allow us to see him tomorrow and Tues as well and we can take him out.

I'm thinking I should have taken the antibiotics as I'm still coughing, but I have my blood to get checked next week so would prefer not to if possible as think they can alter the readings, I guess an infection can to.

Oh and it's a lovely sunny day here..what a difference it makes to see a blue sky xx
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Date: 14.07.2019
From: lois

Subject: Re: Hi Lucy Colin

Lucy, hope you have a few good days with your brother. Staying at hotel is a great idea it will take some pressure off you and hubby.
These summer colds and coughs just hang on forever.
I am also reluctant to take to many antibiotics.

I saw mum her dementia is worse every time I go. I should be hearing from her social worker next week. I am trying to stay positive.
Lucy enjoy that sunshine and blue sky. x
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Date: 19.07.2019
From: Lois

Subject: Re: Hi Lucy Colin

Bumping up
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Date: 20.07.2019
From: lucy

Subject: Re: Hi Lucy Colin

The weather was lovely last weekend and we managed to get my brother out which was nice. I got a call yesterday from the home to say that the doctor called in and he has been deemed as not having capacity now, I don't know how he will be when I next see him now that he won't be getting home. I just feel so sad for him. Hope your Mum is doing better, Lois.

We have the rain back and I have a funeral today, my husbands niece was found dead at home, she was just in her forties, neighbours heard her cat crying and called the police.

Take care xx
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Date: 20.07.2019
From: Colin W

Subject: Re: Hi Lucy Colin

hi guys ,
Lucy sorry for your news , but maybe for the best for your brother , I hope he gets to like it there or somewhere he likes , You will fell very guilty not having him live with you but it would be hard plus he is not getting any better . My father inlaw was never any problems , he short term memory was very bad & we had to write down how to use the TV , my Mother-in-law was all about her & she could not think of anyone else , we had carers in 3 days a week because she needed around the clock care
Some people get angry , like my brother who is big & 6ft tall , can't stand the noise of his grandchildren & stays in his own room most the time , you want them to have some quality of life but to be safe at the same time

I am sorry for your loss , that is no age , & cant imagine how her family is coping
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