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

annielou

Registered User
Sep 27, 2019
1,917
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Yorkshire
Thank you for your replies @anxious annie @Sarasa @Woo2 @canary @imthedaughter xxxxx
my sister called CH today and by sounds of it they've checked mums mouth and it's not that causig her not to eat. Sis said mums just the same they're trying to tempt her but still not eating much at all, DR is referring her for investigations. Though we don't think its anything medical really more her mood. Nurse reckons mum will be down to about a size 10 now. Before she lost some weight last year mum was a 16 top and 14 trousers though only certain styles from m&s, Last year she got a few 14 tops n 12 trousers and wore the things that had been tighter on her before she lost weight and thats what I picked plus couple more 12 trousers for when she went in CH but she has lost more weight since being in CH so now they're probably loose too bless her. Looking at her on saturday I'm not sure if size 10 is going to be generous on her she looked like skeleton with loose skin on.
Deputy Manager called this afternoon to talk about my visit saturday as it'll now be in the visiting booth, they said because they have to deep clean between every visit they're having to limit visit to 15 minutes. They told my sister this morning that we have to have temperature taken and fill in questionnaire first too. DM said I could also book for christmas if wanted now so I said we'd already booked yesterday for christmas morning, he checked diary and asked if we could come at an earlier time, which we're fine with as long as we can see mum. I can take mums presents and hand them in so she can open them while we're there christmas day. We're not sure mum will be in mood to open them or manage them all as there will be ours, my sisters and her kids have all bought her bit of something too but we can only see how she is and try. I imagine mum will wonder why she is still there and why she isn't coming to our house for christmas as she always has for well over 20 years. It's going to be a hard day but at least I get to see mum on Christmas day which is something.
DM said he'd just been sat with mum and now she was sat with 2 of the girls and she'd had a little bit of chocolate but only a bit. He said he'd asked mum why she wasn't eating, did she need some bonjela, were her gums hurting, was she in any pain, mum said No, he asked her why she wasn't eating then and mum said she didn't know. I said I ask mum when we visit, I try not to go on at her too much cos don't want to upset her and I want her to enjoy visit and cheer her up but I ask why she's not eating and will she try for me and she just says she can't and doesn't fancy owt. Even the treats I bring she says she doesn't fancy now and the prawn sandwich she looked excited about before, when I said I'd brought one this week she said she didn't fancy it and pulled a face. He said last time he saw her with one she only had a bite and couldn't eat rest but had enjoyed it before. He said she'd had a bit of supper other night when he was on duty but not much and she's barely eating at all.
He said the DR had her down for a GI exam but they didn't really think it was that. Me and my sister don't either, we think its mums mood and he did too. I told him mum was eating at home before hospital but wouldn't eat sometimes when upset, though she would usually have something later even if just a sandwich and biscuit. He said mum ate better when she came in than now, although she was very fussy and her diet wasn't good, but she's got worse and worse and now has barely anything. He said him and mum get on really well and she'll usually do anything for him but he can't get her to eat either but they all keep trying.
I didn't think about it at the time of call, but I'm assuming GI exam will either be a barium xray or endoscopy done at hospital which mum won't like and I'm not sure she'll go along with. I'm not sure how she'll react to even going to hospital again after her stay in hospital in august which she hated, she won't want to go back there again and then after the appointment when she returns to CH I think she'll have to go back in isolation for 14 days again. I don't think that will help her low mood and confusion about why she's there either and I'll probably not be able to visit during that time either.
My poor mum I just don't know what to do to help her I can't stop crying thinking of her slowly wasting away and disappearing more and more each week. She's never had much of a life or a particularly good one and now she's being tortured and tormented by dementia and I'm not even with her and can't help her.
 

anxious annie

Registered User
Jan 2, 2019
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Oh dear @annielou, I am so sorry to hear how your mum is, and how this is making you feel as there is so little we can do to help our loved ones with all the visiting restrictions. Did you say the home wouldn't do the Lateral Flow tests? If they don't accept these would they let you have the same test as the staff so that you are able to be close with your mum and give her a hug? It seems to me that with your mum not eating this can be classed as an "exceptional circumstance" and you should be allowed a visit to lift her mood and see if this will encourage her to eat.
My mum went to an outpatients appointment with staff, and didn't need to isolate. She had to isolate for 14 days after she'd been overnight in hospital, so it may be the same for your mum. The self isolation period in the community has now come down from 14 to 10 days, but I don't know if this applies to care homes? I hope it does as my mum is due an operation in January ( though I imagine it could be cancelled if covid numbers go up and there is a bed shortage. Sending you love and hugs xx
 

annielou

Registered User
Sep 27, 2019
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Yorkshire
I don't know if they'd use the tests @anxious annie but I have my doubts. There has been no mention of them at all by CH, I think as its only a small home with mainly LA funded residents I think, so they'll probably be quite low on the list for both the vaccine and tests. The city near us who we share a mayor wit has advised the homes in the city not to use tests as their director of public health doubts how good they are and I wondered if ours may follow suit. There has been no mention of them in local media so I don't know, I'm just guessing and may be being pessimistic as I do tend to get that way, especially lately.
Maybe mum won't need to isolate after hospital appointment if she's lucky, I hope so ? Mums CH are extremely cautious, they told us when mum went in they had had no cases of covid and were so worried about it so were being extremely cautious. When mum had paramedics after she fell one time they saw her out on deck to avoid having them inside the CH.
I hope when your mum has her op next year she can isolate for as shorter time as possible ?Love and hugs to you too x?
 

annielou

Registered User
Sep 27, 2019
1,917
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Yorkshire
Mum is now not leaving her room refusing to eat and barely drinking. I think she has given up and I think the CH think so too.
I had a call from Deputy Manager who's also a nurse this morning to tell me bout telephone consultation he'd just had with DR at hospital about mum. Consultant is booking mum in for a scan to see if anything physical causing mum not to eat, not sure what date yet. DM said he asked if there was a physical reason what sort of treatment they thought could give mum and because of age and condition they said didn't think mum would be able to tolerate much treatment. I asked if mum would have to go into isolation if had scan, he said he would make sure someone went with and stayed with mum and she wore PPE, mask etc so hopefully might not need to isolate but she isn't leaving her room now.
DM said mum just wants to lie in bed and not do anything and she's not eating. Said he sat with her yesterday for hours and he only managed to get her to have 3/4 a glass of lemonade and she wasn't happy with him about it. Mum is getting more reluctant to drink and flat out refusing to eat now. Said she getting frailer by the day and she's so weak now. I said I think she's giving up because she doesn't want to be there and doesn't understand why she is and I told him mum used to sometimes say to me at home I don't want to be here like this Andie, just let me die. DM said she'd said the same there. I think we all think mum has given up I spoke to my sister afterwards and she is thinking the same. I said I wished I'd been able to keep her safe at home and we said bit bout not being able to and her not knowing me and wanting to be out all the time. DM tried to make me feel better by saying I'd done what I could and he understood what is was like to have to put someone in care. I said I keep thinking if I'd been able to go in if I could have helped get her to eat, but it could be wishful thinking. We talked about how close he is to mum and he used to be able to get her to try but now she wont even try for him and about mum being stubborn and how when she gets an idea in her head you can't change it. I was crying a bit and he sounded upset too, him and mum really hit it off.
He said he is going to try get GP out and talk to unit manager cos he is really worried about her and will let me know later if anything done. He mentioned my visit tomorrow and said he didn't know if mum would be strong enough to walk to visiting booth but he would talk to unit manager and see what they could come up with so I could have visit.
I think mum thinks if she stops eating and gives up she'll die and that's what she wants to do.
 

TNJJ

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May 7, 2019
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cornwall
Mum is now not leaving her room refusing to eat and barely drinking. I think she has given up and I think the CH think so too.
I had a call from Deputy Manager who's also a nurse this morning to tell me bout telephone consultation he'd just had with DR at hospital about mum. Consultant is booking mum in for a scan to see if anything physical causing mum not to eat, not sure what date yet. DM said he asked if there was a physical reason what sort of treatment they thought could give mum and because of age and condition they said didn't think mum would be able to tolerate much treatment. I asked if mum would have to go into isolation if had scan, he said he would make sure someone went with and stayed with mum and she wore PPE, mask etc so hopefully might not need to isolate but she isn't leaving her room now.
DM said mum just wants to lie in bed and not do anything and she's not eating. Said he sat with her yesterday for hours and he only managed to get her to have 3/4 a glass of lemonade and she wasn't happy with him about it. Mum is getting more reluctant to drink and flat out refusing to eat now. Said she getting frailer by the day and she's so weak now. I said I think she's giving up because she doesn't want to be there and doesn't understand why she is and I told him mum used to sometimes say to me at home I don't want to be here like this Andie, just let me die. DM said she'd said the same there. I think we all think mum has given up I spoke to my sister afterwards and she is thinking the same. I said I wished I'd been able to keep her safe at home and we said bit bout not being able to and her not knowing me and wanting to be out all the time. DM tried to make me feel better by saying I'd done what I could and he understood what is was like to have to put someone in care. I said I keep thinking if I'd been able to go in if I could have helped get her to eat, but it could be wishful thinking. We talked about how close he is to mum and he used to be able to get her to try but now she wont even try for him and about mum being stubborn and how when she gets an idea in her head you can't change it. I was crying a bit and he sounded upset too, him and mum really hit it off.
He said he is going to try get GP out and talk to unit manager cos he is really worried about her and will let me know later if anything done. He mentioned my visit tomorrow and said he didn't know if mum would be strong enough to walk to visiting booth but he would talk to unit manager and see what they could come up with so I could have visit.
I think mum thinks if she stops eating and gives up she'll die and that's what she wants to do.
I’m sorry to hear this. What an awful time. You have done the best you can . But that won’t make the guilt stop..((hugs))
 

Starting on a journey

Registered User
Jul 9, 2019
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Sorry to hear this, hoping that you get a visit with your mum. You did so much to support her.
Thinking of you and your mum nearly every day, don’t post much but I read and feel the pain of your posts.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
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Nottinghamshire
So sorry to hear that your mum is so poorly. I hope they allow you to visit your mum in her room. If they do you may persuade her to eat and drink a little, and it would put your mind at rest that she is being well cared for.
Please don't blame yourself. You tried everything to keep your mum at home. There was no more that you could have done to keep her there.
Thinking of you and her {{{hugs}}}
 

canary

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Feb 25, 2014
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South coast
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))) @annielou

Im so sorry to hear about your mum. I have nearly posted about this before, but wasnt sure it was appropriate, so I didnt, but Im going to now because your mum seems to be following the same path as my mum. My mum stopped eating and drinking after a spell in hospital - for a broken hip after a fall in her case, which seemed to heal up OK, but she didnt eat well in hospital and stopped completely in her care home.

When someone passes away from dementia it is, unfortunately, a slow, long drawn out process as the body shuts down gradually over days and weeks. As part of this process they reduce the amount that they eat and eventually stop eating and drinking. Mum also complained that the thought of food made her feel sick. What I really, really want you to understand is that they dont die because they stop eating - the process of dying has already started and they stop eating and drinking because they are already dying. We instinctively want them to eat and think that if we can get them to eat it will stop them dying, but it wont. Making them eat at this point will not stop that and sometimes it can cause pain because the body can no longer process it.

I may be wrong and your mum has not reached this stage - I was told 3 times that mum had reached End of Life only for her to rally again, but if she does not then please, please, dont feel that you have done anything wrong or that you could have changed it. I suspect that it was (like my mum) caused by the fall and the stay in hospital and the process started then.

Hang on to the fact that on the past few weeks your mum was happy, well looked after by the staff and (most importantly) she knew you again. She will not pass away thinking that she has been abandoned and that you are not visiting, that its a friend coming instead. She has found her daughter.

xx
 

Wildflowerlady

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Sep 30, 2019
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Hi @annielou I have to say that your mum and my dad sound very similar dad saying the same thing and going downhill faster than anyone thought he would. As you know we have seen dad change a lot this year and his appetite started to get poor a while back and I wonder if some stuff has been deliberate as he now wants to pass but of course I want him to last longer and still hoping he will recover from his latest UTI. Hospital that dad was admitted to are treating him for dehydration and UTI presumably the thrush too say he is comfortable and said he has eaten some Weetabix this morning. I so feel your pain as think we are probably in a place that mirrors how we are both feeling watching our beloved parent go through this horrible disease and wish we could help them more. We had no real choice but to place dad in a CH and neither did you and your sister. We must somehow learn to accept we really could do no more but I know is easier to say when directed at a fellow TP poster/blogger than accept ourselves. I wish and hope that whatever happens with your mum you will find some comfort and peace and know your really did do your very best as I know from reading your posts you did. My journey with dad is now on the same path so we will probably be walking it together. Sending you lots of hugs and thank you for the support you offer me. ? ? ?
 

anxious annie

Registered User
Jan 2, 2019
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So sorry to hear your sad update @annielou. Surely they will allow you in to your mum's room to see her if she is not strong enough to come to you. I do hope you get to give her a hug. You care so much for your mum, it shines through every post. Thinking of you and sending hugs xx
 

Banjomansmate

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Jan 13, 2019
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Dorset
I agree with @canary, this isn’t happening because Mum has given up because she has ended in residential care because you couldn’t look after her any more. This is happening because her dementa‘s progression forced her need to get out of the house and get away, causing her to have a fall and need hospital intervention which found that she needed full time care. You couldn’t stop that because back than she didn’t really know you a lot of the time and wanted to get away from you too.
Since she has been in the Care Home, who sound as though they are doing everything they can for her, she has calmed down and known who you are which is a major improvement but it sounds as though the dementia is still messing with her emotions but in a different way.
I probably sound harsh, my views aren’t always appreciated by some people but if, as you say, she had already been saying she doesn’t want to live like this, and you know the dementia is leaving her stressed by its repercussions, what do think it is the kindest thing for her?
 

annielou

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Sep 27, 2019
1,917
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Yorkshire
Thanks for all your replies, it means a lot and I really appreciate your posts xxxxxxxx

I've been in the home to see mum this afternoon for a few hours and have been told I can call and visit anytime now as its extreme circumstances. I spoke to GP today while I was with mum and it seems mum could be in the dying stage now but don't know how long for if so and she may not and could perk up.
When we got back from handing mums keys back this lunchtime I had 2 missed calls on home phone from mums home, I was going to call them back when they rang again. Nurse wanted to update that GP was coming to mum this afternoon and to say I could visit mum if I wanted and go in home to her bedroom if I wore ppe. I said I would. She said, I could come anytime, she talked bout consultant this morning and mum not eating and said they'd let me in to try and see if I could tempt her and let me see her as it's extreme circumstances now . I said I'd get my husband to bring me now and put my coat straight back on.
They took my temp,and I had to wear mask, gloves and apron. Nurse took me to mums room, she was laid in bed looking very small and tired bless her but she recognised me. Not long after the GP arrived so she chatted to us all and examined mum. When she introduced herself mum said this is my beautiful daughter. Bless her. GP asked about if had any other children and mum said my sister and said Do I have another Andie? I said No just me and _ (sis) two's enough when it's us two which mum smiled at and said No you're both lovely. GP asked mum how long been there and what she thought about it and mum said it was ok, it was quiet. Later mum told me she didn't like it there, I said why did you tell DR you did and mum said Well and shrugged.
Apparently mum hasn't taken her medication the last couple of days when GP asked mum why, she said she didn't know cos she usually does, GP said you're usually ok with taking them aren't you and mum said Yeah maybe I forgot, she said Our Andie gives me them sometimes don't you. I said I used to give you them, I was your daily drug pusher wasn't I, which was what we used to joke about sometimes and Mum smiled at it. Nurse said mum is usually fine but last couple of days hasn't wanted anything including tablets, GP said Could you just not face them and mum said No.
Mum was really calm while being examined and didn't look uncomfy or in pain while being checked. Mum kept looking at me which she used to if we ever saw DR. GP asked if she could listen to mums tummy and I said You might have a rumbly in your tumbly mum like winnie the pooh. Mum smiled and said We always say that. I don't know why but I always try to lighten things up when mum not well or seeing DRs, trying to make it less scarey or upsetting I suppose, I don't know if that's right or wrong thing to do but I do it. GP had had good look at mum and chatted a bit to her, then she asked if it was ok to talk to me and nurse for a few minutes which mum said yes to, which was a surprise as mum used to be paranoide about people talking about her.

We went to nurses office, GP didn't think there seemed any medical reasons mum wasn't eating, she didn't feel any lumps that felt like anything in mums tum, or see anything in her mouth and mum said she wasn't in pain, she didn't look like she was and I watched mum carefully to see if flinched or anything. She wasn't sure if was mums mood either as she thought mum seemed quite calm and settled and not that down. She said it could just be the alzheimers progression into that stage, it does happen and she asked me why I thought could be mood. I told her about mum before and what she had said about not wanting to be here and just let her die and how she'd said she didn't want to eat in hospital a few times cos didn't want to be there. She asked nurse about anti depressants which mum's been on ages, though actually went on them for anxiety and agitation. We talked about how mum had been since last year, how mum was just before went in hospital and during and how calmer she was in home. I wasn't sure if calmer cos of medication, or enviroment with some of her triggers and stresses being taken away, or just given up, I said she still talked about going home and didn't know why she was there.

GP said she'd spoke to hospital consultant, they don't think scan will show any medical reason but if it does they don't think mum will be able to manage surgery or treatment so it would just be a diagnostic tool. GP said not sure if mum could manage physically with going for scan and it would probably upset her emotionally and mentally. We think same, mum never liked hospitals and would get in a state beforehand and hated it in hospital so I don't think she'd want to go back. Plus she is so weak now physically getting her there and in for scan would be a struggle. I said if there was chance it could show something simple that would be a simple treatment to help mum feel better then I'd say do it but if not then I think not fair to risk her being upset. GP said if it showed anything it wouldn't be a simple fix to make her feel better, the things it could show that they couldn't already detect would require surgery which she didn't think mum was strong enough for or if cancer she didn't think mum could cope with chemotherapy, mum was too frail now so between us we've decided not to send mum for scan.
GP talked about how mum seemed quite lucid today and maybe only mild in alzheimers stage but some parts can be further than others, everybody is different and things can happen at different times. She said not much we can do to make mum eat and not really lot could do except keep her comfortable. Talked about fast tracking mum for nursing care from CHC now and told me they usually do that for people they think may have less than 6 months left. She told me she wasn't sure about mum, she could rally and perk up but she probably might not and seemed like she was in final stages She said that people stop eating and drinking and then they get tired and weak, drowsier and sleep more, then often just slip away. She said mum didn't look in any pain, some people don't have pain but she was going to prescribe some things just in case for mum. She said they can't stop it, or make mum better, just keep her comfortable. They can give her something if sick, or in pain and she can have some of her medications in injection form if she stops tablets which is why she needs nursing care as a nurse must give injections. GP said she would prescribe them now so there if mum needed them CH won't have to wait to get them. She said she couldn't say how long mum had or if she'd perk up and improve.
She said she would go back and talk to mum about fast tracking her as she seemed quite lucid today and you could still have a conversation with her. We did talk about how well mum presents as being more with it unless you know truth of what she's saying and I told them that they would probably have to look for signs of pain rather than rely on mum telling them. Mum won't always say, in hospital when had headache or diarrhoea cos she didn't tell them cos didn't want them to know and keep her longer and she likes to be brave in front of DRs. GP and nurse said they'd look out for it then. GP went back and told mum going to fast track mum for funding so she could have nursing care and if needed medicines in injections, or painkillers if in pain and we wouldn't have to pay. Mum said OK but not sure she really understood. GP was really nice with mum and me and took quite a bit of time with both of us.
I'd took a sandwich and some chrunchie ice creams as we'd bought some earlier. Mum wouldn't try sandwich, I offered quite a few times. She did try ice cream but couldn't bite it as chocolate hard so I broke end and mum put couple of pieces in her mouth, she pulled face and when she put ice cream in she did same and wouldn't have anymore. I offered her things throughout visit but she wouldn't try. She did try a bit of dunked biscuit but only had a small nibble and had about inch to 2 inch of lemonade and a couple of sips of tea.
She wanted loo at one point but I couldn't manage to get her up myself as she was scared so two carers came and we got her on commode but she didn't go. They changed her pants and nightie while there and combed her hair as she'd not been washed or changed today. The chiropodist was there today so they asked him to come. After years of mum being adamant nobody was touching her feet she let him and actually said it was ok. I think that might have been cos she said she was so comfy. She was sat on end of bed when they went to get him so I'd propped pillows behind her on bed against wall and she'd laid back with her foot out.
After that I helped her back in bed but then she needed a wee, I couldn't see anyone and mum needed to go so I helped her back up onto commode. We weren't quick enough and she ended up catching end of her nightie so I changed her nightie again. I couldn't get her up on my own, she was feeling yuck by then. Luckily next time I looked I saw a carer down corridor who came to help. Mum was feeling a bit off it, think tired out getting out of bed twice etc so I stroked her hair and fanned her with my hand a minute while carer talked to her then we got her back on bed. I opened window a bit as it was hot in room, got mum comfy and mum nodded off for a bit. She woke a few times and about 1/4 to 4 said I could go home so she could go to sleep but then said she wanted me to stay a bit. I told her I didn't mind if nodded while I'm there, she did on and off but she tried to keep awake a bit for me I think. I asked again if she wanted anything to eat or drink about half four and mum said she was tired. I asked if she'd like me to go home so she could go to sleep and I'd come back tomorrow so she said yes and I left a few minutes later.
 

Banjomansmate

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Jan 13, 2019
5,395
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Dorset
Oh Andrea, I’m so pleased you have been able to spend some real “time” with your Mum, although sad that it was under the current circumstances. The GP sounds as though she really cared about what is happening to Mum and to you. Hopefully she has helped you realise that this is progression of the dementia and definitely not because you couldn’t keep Mum at home.
It will be hard but try to get some sleep tonight, ready to pin that smile back on your face tomorrow because now you have to put on the biggest act of your life so Mum doesn’t see you unhappy or fearful of what might happen. It was good that she responded to your family jokes so keep up the good work!
You will all be in my thoughts.
Carol.
 

annielou

Registered User
Sep 27, 2019
1,917
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Yorkshire
Thanks carol @Banjomansmate x I welled up a couple of times today but managed to hold them back and don't think mum saw, I hope I can keep it up as don't want to upset mum bless her. Hardly stopped since I left though. Mum was so sweet today, kept telling carers, dr etc and me how lovely me and my hubby are. I think she was pleased to see me but I still couldn't tempt her or convince her to eat. She did try a couple of bits but then couldn't face it but mainly said maybe later or just pulled a face and shook her head when I offered anything.
Hubby and I were supposed to be visiting in new visiting booth tomorrow morning but I think I'll ring in morning and check if it's ok for me to go in to mums room again about same time as booth visit was due, they did say I could visit anytime so think be ok. Not sure how long to stop for cos today mum wavered between wanting me to stay but wanting to sleep and trying to stay awake cos I was there, I don't want to tire her out and I don't want to be in the way of staff so I suppose I'll just see how it goes.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
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Nottinghamshire
@annielou, I'm so glad you got to see your mum, and that you are allowed to see her as much as you want. The home sounds excellent as does the GP and I think you all made the right decision about not going to hospital for a scan.
Although it is so sad that she seems to be slipping away she is content, and you know she now knows you are her lovely Andie and not 'that woman' and that she is happy to have you there.
Stay strong. Whatever happens you know your friends on Dementia Talking Point are supporting you. {{{hugs}}}
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Hello @annielou

When I visited my husband at this stage I just sat by his bed and didn`t ask anything of him other than to enquire if he was comfortable. I held his hand and allowed him to doze as he pleased.

I made sure he had sips of fluid whenever he woke and did ask if he was hungry but he always refused food.

I`m sure you won`t be in anyone`s way if you visit.
 

Starting on a journey

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Jul 9, 2019
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Visit as much as you feel able to do. You won’t be in anyone’s way and may actually be helping them...
Thinking of all your family today, and of your sister.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

I remember this sort of conversation - I had a very similar one with mums GP in her home when she stopped eating. Your mums GP sounds very sensible and compassionate. It sounds like she has organised for all eventualities.

Im sure that everything you did was right and I expect that you will be able to visit her in her room again today.
 

imthedaughter

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Apr 3, 2019
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Oh @annielou we are all thinking of you and your family. I am glad that mum knows you as you, but it sounds like her dementia is progressing in other ways. You have done so much and continue to do so much for mum. No-one could have done more. Wishing you strength today and in the coming days, for whatever happens. ????