Who am I ? I won't know myself soon!!!
- Thread starter annielou
- Start date
Thanks @Bikerbeth @Woo2 @Sarasa x Things aren't great at mo and not coping too well. Last few days things have gone a bit rubbish and I feel about two steps away from a straight jacket at the moment, emotions all over the place. I have been writing a post but it's epic so I will post it after this for me to look back on, unless anyone else wants to read it all but I'll summarise on this one. I've been struggling again with mum being in the care home, not seeing her, not knowing how she really is and not knowing what is happening but from friday things have gone downhill.
On friday SW rang and said had invite to CH on the 26th for DST meeting about CHC funding. Sw didn't think mum would get it and so then it would be up to SS to step in, which we thought too. She had been going to go out to do 6 week review at home but was going to call Ch and say would do it on meeting day to cut down contacts. We hadn't had invite so SW suggested we contact NHS SW week before meeting to see if could attend if not had invite by then. We thought at least we know when it is now so that was ok.
But then hubby had a stressful day at work and was feeling a bit sick before bed on friday night and we were wondering if his gastric pains from previously were coming back which was worrying. He's been fine since he had omneprazole and finished the course a few week ago but work has been stressful and I had been quite upset over mum and on friday night he was feeling uncomfortable and sicky. At 6 on Saturday morning hubby rushed to be sick and was sick a few times. He was sick another 3 times about every four or five hours through saturday 3 or 4 times each time. So the weekend went by with hubby feeling ropey, not wanting to eat in case made him sick or it set off his gastric pains and felt exhausted. He's slowly getting over it but still rather worried when eating and I'm still worrying about him.
I'm also more worried about mum as there's been quite a few calls over last few days. SW rang on Tuesday about mums CHC meeting being switched to virtual now probably due to covid restrictions tightening. She said she had also done mums review over the phone with CH and went through it with me.
There were two worrying things, the first mum has lost weight almost 6 kgs since she went in home and the other that the CH aren't sure if that is best place for mum as she's not as advanced as the others. Though SW still thought it was.
Yesterday CH rang to talk about mums weight and we talked about a few reasons why mum might not be eating and what to do and they also said mums mood was really flat and low that morning and talked about them not being sure if there is right place for mum.
This morning CH rang again to say mums mood is still really flat and she'd been crying so they were in touch with memory clinic to increase her memantine and he talked again about them wondering about it not being best place for mum and if being there was depressing mum. So we talked about that and I told him about mums moods in past because she does get like that, which they didn't know.
So my sister and I have been worried about mum being upset and maybe not in right home and wondering where would be best place for her. And I have been in floods of tears most of the time and barely slept for last couple of days.
This afternoon SW rang again to talk to me about it again because she'd spoke to her manager and they still thought mum needs emi and didn't want to move her but said would help us if came to it. She wanted to reassure me about what we'd done. It made feel a little less guilty but still worried about mum and what going to happen.
I'll go in to more detail about calls and reasons on my epic post.
Hope you are all ok xxx Thanks for asking how things are x
On friday SW rang and said had invite to CH on the 26th for DST meeting about CHC funding. Sw didn't think mum would get it and so then it would be up to SS to step in, which we thought too. She had been going to go out to do 6 week review at home but was going to call Ch and say would do it on meeting day to cut down contacts. We hadn't had invite so SW suggested we contact NHS SW week before meeting to see if could attend if not had invite by then. We thought at least we know when it is now so that was ok.
But then hubby had a stressful day at work and was feeling a bit sick before bed on friday night and we were wondering if his gastric pains from previously were coming back which was worrying. He's been fine since he had omneprazole and finished the course a few week ago but work has been stressful and I had been quite upset over mum and on friday night he was feeling uncomfortable and sicky. At 6 on Saturday morning hubby rushed to be sick and was sick a few times. He was sick another 3 times about every four or five hours through saturday 3 or 4 times each time. So the weekend went by with hubby feeling ropey, not wanting to eat in case made him sick or it set off his gastric pains and felt exhausted. He's slowly getting over it but still rather worried when eating and I'm still worrying about him.
I'm also more worried about mum as there's been quite a few calls over last few days. SW rang on Tuesday about mums CHC meeting being switched to virtual now probably due to covid restrictions tightening. She said she had also done mums review over the phone with CH and went through it with me.
There were two worrying things, the first mum has lost weight almost 6 kgs since she went in home and the other that the CH aren't sure if that is best place for mum as she's not as advanced as the others. Though SW still thought it was.
Yesterday CH rang to talk about mums weight and we talked about a few reasons why mum might not be eating and what to do and they also said mums mood was really flat and low that morning and talked about them not being sure if there is right place for mum.
This morning CH rang again to say mums mood is still really flat and she'd been crying so they were in touch with memory clinic to increase her memantine and he talked again about them wondering about it not being best place for mum and if being there was depressing mum. So we talked about that and I told him about mums moods in past because she does get like that, which they didn't know.
So my sister and I have been worried about mum being upset and maybe not in right home and wondering where would be best place for her. And I have been in floods of tears most of the time and barely slept for last couple of days.
This afternoon SW rang again to talk to me about it again because she'd spoke to her manager and they still thought mum needs emi and didn't want to move her but said would help us if came to it. She wanted to reassure me about what we'd done. It made feel a little less guilty but still worried about mum and what going to happen.
I'll go in to more detail about calls and reasons on my epic post.
Hope you are all ok xxx Thanks for asking how things are x
Last edited:
Warning epic post, mainly for me to remember and get out.
Mums reviews was she is ok with meds. mobility, skin, sleep, she needs prompting with personal care, eats independently but mum is losing weight. She weighed 62.1kg on 27/8 (1st day) 60.3kg on 10/9 and 56.9kg on 5/10 CH said they would contacther GP about losing weight and not eating very well. SW asked if a dietician had been involved, CH said GPs tends to wait to get them involved until weight loss gets to certain level but would ask.
SW asked if mum showed any signs of anxiety or depression and CH said that she is on anti depressants. They said Mum appears ok when you see her. She does say she wants to go home but she is easily distracted. They said she is usually ok except when she gets bored. She is engaging with carers to a certain extent and engaging with some residents. She likes walking the corridors with a male resident but when she gets tired she just stops and doesn't want anything to do with him.
Deputy manager said he feels sorry for Mum because to look at her she looks like she doesn't need to be there and isn't as far on as the others. He wished there was something in between for mum. SW said council don't run to that and they'd need so many different types and people still wouldn't fit in them exactly, there is only emi and residential and mum has cognitive issues, she'd seen them when she'd met mum and she'd wanted me to leave and didn't know I was me and she needs emi.
SW asked me if we were looking at other homes or felt she was safe there and if we were at peace with it. I said we hadn't really seen her, only a short visit, but although she did still talk about leaving and my dad and was mixed up she was much calmer and easier to distract and from what CH had said she seemed more settled there than at home or in hospital. I told her I didn't like thought of mum being in a CH, didn't like not being able to see mum and felt guilt about it all but thought she was better with more people looking after her where she was safe. That we didn't really want to move mum but if she's not getting right stimulation cos others needed different to mum maybe would be better for her. SW said mum would still need emi and wouldn't find a home with others same as mum cos all have different needs at different times which I agree with. I told her bit about how mum was before she went in hospital and that I thought if mum came home she'd be back to how she was before and I couldn't keep her safe and SW said we shouldn't bring her home, mum couldn't cope and neither could I. I asked if it was still her recommendation for mum to stay in CH and she said it was.
On wednesday Deputy Manager of CH rang and said they had contacted mums gp to ask for referral to dietician because mum was losing weight. I said SW had told me day before. We talked about mum not eating and I said it may be her teeth cos they rub on bottom and had been before hospital. They are old and mum says getting thin but also I think with age and possibly losing weight they have got bit loose too. Also I'd noticed before she went in hospital that she wasn't soaking them as often and were brown and rough inside. I think it was another thing in mum forgetting her morning routine like showering etc and told him what used to do and how she thought still did it. So he said he would speak to mum and see if hurting as could be reason not eating and maybe they should contact a dentist but at moment just going on a waiting list. I offered to take her some bonjela but he said it needs prescribing.
We also talked about mum not eating in hospital cos she was upset and annoyed at them for keeping her prisoner and he said there may be an element of that. And about her losing over a stone in 3 months last year and had got scared to eat after a bad bout of diviculitis and I thought she wasn't cooking properly so I took over cooking for her and ate with her and GP found she was lacking allsorts of vitamins and gave her tablets too which after a while she got back to eating, stopped losing weight and put a bit back on. He said Gp may give her supplements then.
He said SW had also asked if mum was showing signs of depression and said what he'd told SW, and said but today mum seems quite flat. He told me same as SW that they felt sorry for mum because she didn't look like she should be there and was functioning more than others and he wondered if it was best place for her there. He said you go from a diagnosis of dementia while living at home to being in an emi home and they feel sorry for her. I
I said I thought part of reason SW said emi was because of mum wanting to go home all the time and although mum looks ok and can chat, most of what she's saying is mixed up. When anyone came such as SW, OT, MC mum would be fine and chatty but soon as it came out there was something wrong or she couldn't do something she would switch and get annoyed, say she did everything herself, I was lying, she didn't need any help and wanted everyone to leave.
He said she did look ok till started talking to her and realised she had problems with her memory. We talked a bit about how mum mixed things up and how she hadn't recognised me for a lot of the time, who she thought I was and wanting to go looking for me thinking I was a kid out playing when I was with her and it was getting so hard for me to distract her and stop her leaving so I think that's why she needed a home. He said he didnt think mum cud come home with a care package and they would look after her but just wished there was somewhere a bit more suited.
Today DM rang again and told me he'd spoke to SW and MC cos mum was really flat again and a bit teary, she said she missed us and also was worried she was forgetting things. He said it's hard cos mum is in early stages and still has awareness something's wrong and he's not sure if mum fits in there and if its upsetting her being there. He said they' been in touch with MC to increase her memantine. He said they can manage mum and don't want her out but were thinking what was best for mum and if she'd be better somewhere else. He didn't want me to worry. I said I do worry, it's all I've thought about since spoke to SW and him. He said they'd see how she went on with memantine and talk about it more at mums review.
I told him mum has days like this and gets down and some of reasons she gets upset, like thinks her mum just died, her and dad just split up, or she realises struggling remembering and says she is going mental and I told him some of the things I tell her and how I tried to cheer her up but didn't always work. Sometimes it's cos she is bored but can't entertain herself and said things I suggested and did and I said sometimes she would be upset and grumpy because she thought I didn't visit her anymore cos she didn't know I was me, or she imagined things that hadn't happened. Like she'd think my sister had rung and told her she didn't want to see her, or my dad had been in house, or I'd just left without telling her I wasn't living with her anymore, or things off tv or she'd read she thought we'd done. She wouldn't always tell me what was wrong, sometimes a matter of picking a bit till she did.
He said he didn't realise it had happened before he thought it was new cos first time they'd really seen her like this. I said she'd been like this for ages, last year it used to show more as she got anxious or aggressive but then she had sertraline and when happened after it wasn't as often and she was just sad. He said they hadn't really seen the aggression. I said she did seem more settled when I saw her and I wondered if it was memantine working cos she had only just started it day got lost and went in hospital, although it hadn't been working in hospital cos she was still agitated there, but I thought it might be working now or maybe CH setting working with people around all time and some of things that triggered mum had been removed such as cleaning, cooking etc. I told him about mum being anxious on her own and me staying with her for 4 months then sertraline helped the anxiety and I went every day instead. A bit about some of the things she couldn't do at home and ways she reacted when I tried to help and how towards the last week she was getting more aggressive and constantly wanting to go home, thinking I was a kid and not me and how she would tell me she thought our Andie didn't love her cos she hadn't seen her, would ring me after I left asking if I would come see her cos been on her own even though I'd been there all day. He said they hadn't known a lot of this and hadn't seen it so would see how she does on memantine increase and how things go and discuss it at review.
SW rang this afternoon to talk about it as she'd spoke to her manager after CH rang her. She was really nice. She said they still thought mum should be in emi, she hasn't got the cognitive abilities to be in residential home, mum wouldn't cope and neither could staff and I shouldn't bring her home either as neither of us could cope. She said it's out of their hands at moment but after CHC they will look at it, but they don't like to move people and don't think there is a place where people are just like mum. We talked about how people might react in residential care as they'd know mum wasn't like them and might avoid mum cos gets mixed up and can get upset and that isn't fair to mum. SW said CH haven't said can't manage mum or don't want her and if did they would have to give notice and then she would help us find another emi. She told me not to feel bad I'd tried my best looking after mum and we had done best for mum and tried to get her a place going on what we knew her to act like and we would get it sorted.
Mums reviews was she is ok with meds. mobility, skin, sleep, she needs prompting with personal care, eats independently but mum is losing weight. She weighed 62.1kg on 27/8 (1st day) 60.3kg on 10/9 and 56.9kg on 5/10 CH said they would contacther GP about losing weight and not eating very well. SW asked if a dietician had been involved, CH said GPs tends to wait to get them involved until weight loss gets to certain level but would ask.
SW asked if mum showed any signs of anxiety or depression and CH said that she is on anti depressants. They said Mum appears ok when you see her. She does say she wants to go home but she is easily distracted. They said she is usually ok except when she gets bored. She is engaging with carers to a certain extent and engaging with some residents. She likes walking the corridors with a male resident but when she gets tired she just stops and doesn't want anything to do with him.
Deputy manager said he feels sorry for Mum because to look at her she looks like she doesn't need to be there and isn't as far on as the others. He wished there was something in between for mum. SW said council don't run to that and they'd need so many different types and people still wouldn't fit in them exactly, there is only emi and residential and mum has cognitive issues, she'd seen them when she'd met mum and she'd wanted me to leave and didn't know I was me and she needs emi.
SW asked me if we were looking at other homes or felt she was safe there and if we were at peace with it. I said we hadn't really seen her, only a short visit, but although she did still talk about leaving and my dad and was mixed up she was much calmer and easier to distract and from what CH had said she seemed more settled there than at home or in hospital. I told her I didn't like thought of mum being in a CH, didn't like not being able to see mum and felt guilt about it all but thought she was better with more people looking after her where she was safe. That we didn't really want to move mum but if she's not getting right stimulation cos others needed different to mum maybe would be better for her. SW said mum would still need emi and wouldn't find a home with others same as mum cos all have different needs at different times which I agree with. I told her bit about how mum was before she went in hospital and that I thought if mum came home she'd be back to how she was before and I couldn't keep her safe and SW said we shouldn't bring her home, mum couldn't cope and neither could I. I asked if it was still her recommendation for mum to stay in CH and she said it was.
On wednesday Deputy Manager of CH rang and said they had contacted mums gp to ask for referral to dietician because mum was losing weight. I said SW had told me day before. We talked about mum not eating and I said it may be her teeth cos they rub on bottom and had been before hospital. They are old and mum says getting thin but also I think with age and possibly losing weight they have got bit loose too. Also I'd noticed before she went in hospital that she wasn't soaking them as often and were brown and rough inside. I think it was another thing in mum forgetting her morning routine like showering etc and told him what used to do and how she thought still did it. So he said he would speak to mum and see if hurting as could be reason not eating and maybe they should contact a dentist but at moment just going on a waiting list. I offered to take her some bonjela but he said it needs prescribing.
We also talked about mum not eating in hospital cos she was upset and annoyed at them for keeping her prisoner and he said there may be an element of that. And about her losing over a stone in 3 months last year and had got scared to eat after a bad bout of diviculitis and I thought she wasn't cooking properly so I took over cooking for her and ate with her and GP found she was lacking allsorts of vitamins and gave her tablets too which after a while she got back to eating, stopped losing weight and put a bit back on. He said Gp may give her supplements then.
He said SW had also asked if mum was showing signs of depression and said what he'd told SW, and said but today mum seems quite flat. He told me same as SW that they felt sorry for mum because she didn't look like she should be there and was functioning more than others and he wondered if it was best place for her there. He said you go from a diagnosis of dementia while living at home to being in an emi home and they feel sorry for her. I
I said I thought part of reason SW said emi was because of mum wanting to go home all the time and although mum looks ok and can chat, most of what she's saying is mixed up. When anyone came such as SW, OT, MC mum would be fine and chatty but soon as it came out there was something wrong or she couldn't do something she would switch and get annoyed, say she did everything herself, I was lying, she didn't need any help and wanted everyone to leave.
He said she did look ok till started talking to her and realised she had problems with her memory. We talked a bit about how mum mixed things up and how she hadn't recognised me for a lot of the time, who she thought I was and wanting to go looking for me thinking I was a kid out playing when I was with her and it was getting so hard for me to distract her and stop her leaving so I think that's why she needed a home. He said he didnt think mum cud come home with a care package and they would look after her but just wished there was somewhere a bit more suited.
Today DM rang again and told me he'd spoke to SW and MC cos mum was really flat again and a bit teary, she said she missed us and also was worried she was forgetting things. He said it's hard cos mum is in early stages and still has awareness something's wrong and he's not sure if mum fits in there and if its upsetting her being there. He said they' been in touch with MC to increase her memantine. He said they can manage mum and don't want her out but were thinking what was best for mum and if she'd be better somewhere else. He didn't want me to worry. I said I do worry, it's all I've thought about since spoke to SW and him. He said they'd see how she went on with memantine and talk about it more at mums review.
I told him mum has days like this and gets down and some of reasons she gets upset, like thinks her mum just died, her and dad just split up, or she realises struggling remembering and says she is going mental and I told him some of the things I tell her and how I tried to cheer her up but didn't always work. Sometimes it's cos she is bored but can't entertain herself and said things I suggested and did and I said sometimes she would be upset and grumpy because she thought I didn't visit her anymore cos she didn't know I was me, or she imagined things that hadn't happened. Like she'd think my sister had rung and told her she didn't want to see her, or my dad had been in house, or I'd just left without telling her I wasn't living with her anymore, or things off tv or she'd read she thought we'd done. She wouldn't always tell me what was wrong, sometimes a matter of picking a bit till she did.
He said he didn't realise it had happened before he thought it was new cos first time they'd really seen her like this. I said she'd been like this for ages, last year it used to show more as she got anxious or aggressive but then she had sertraline and when happened after it wasn't as often and she was just sad. He said they hadn't really seen the aggression. I said she did seem more settled when I saw her and I wondered if it was memantine working cos she had only just started it day got lost and went in hospital, although it hadn't been working in hospital cos she was still agitated there, but I thought it might be working now or maybe CH setting working with people around all time and some of things that triggered mum had been removed such as cleaning, cooking etc. I told him about mum being anxious on her own and me staying with her for 4 months then sertraline helped the anxiety and I went every day instead. A bit about some of the things she couldn't do at home and ways she reacted when I tried to help and how towards the last week she was getting more aggressive and constantly wanting to go home, thinking I was a kid and not me and how she would tell me she thought our Andie didn't love her cos she hadn't seen her, would ring me after I left asking if I would come see her cos been on her own even though I'd been there all day. He said they hadn't known a lot of this and hadn't seen it so would see how she does on memantine increase and how things go and discuss it at review.
SW rang this afternoon to talk about it as she'd spoke to her manager after CH rang her. She was really nice. She said they still thought mum should be in emi, she hasn't got the cognitive abilities to be in residential home, mum wouldn't cope and neither could staff and I shouldn't bring her home either as neither of us could cope. She said it's out of their hands at moment but after CHC they will look at it, but they don't like to move people and don't think there is a place where people are just like mum. We talked about how people might react in residential care as they'd know mum wasn't like them and might avoid mum cos gets mixed up and can get upset and that isn't fair to mum. SW said CH haven't said can't manage mum or don't want her and if did they would have to give notice and then she would help us find another emi. She told me not to feel bad I'd tried my best looking after mum and we had done best for mum and tried to get her a place going on what we knew her to act like and we would get it sorted.
Last edited:
I’m no expert but it doesn’t sound like your mum is early stages as DM said , I can’t see what his point was in saying Mums needs could be better met elsewhere 
Surely they know that there will always be people at varying stages , you can’t possible have people all at same stage , and if you did they would constantly being moved . You have done the right thing and I think Mum is in the best place as SW says . The weight loss I also think it sadly a stage , maybe they will be able to tempt her with different things but a quick search on here and you will find umpteen threads on PWD not eating or only eating sweet things. None of what the home have said is anything new , maybe they should of called you for a more in depth conversation a while ago to build up a better picture of your mum . I’m so sorry you are going through such a hard time , sending masses of hugs, you are doing brilliantly???? take care .
Surely they know that there will always be people at varying stages , you can’t possible have people all at same stage , and if you did they would constantly being moved . You have done the right thing and I think Mum is in the best place as SW says . The weight loss I also think it sadly a stage , maybe they will be able to tempt her with different things but a quick search on here and you will find umpteen threads on PWD not eating or only eating sweet things. None of what the home have said is anything new , maybe they should of called you for a more in depth conversation a while ago to build up a better picture of your mum . I’m so sorry you are going through such a hard time , sending masses of hugs, you are doing brilliantly???? take care .
Forgot to say , SW and hospital would not have sent Mum direct to home if they thought she didn’t need it , it wasn’t your decision alone , it had to be sanctioned by a multi disciplinary team , they can’t all be wrong . There are only 2 options for care home and Mum wouldn’t be able to stay in a residential only for long so what would be the point of moving her , the right decision was made and they need to manage it. What dose of Memantine is mum on ? Mine is on 20mg.
Good to hear your update @annielou. There is never going to be a care home that would fit your mum (or anyone else's loved one) exactly and I think she is where she should be. What I think is making things tricky at the moment is that you can't visit, and the home probably can't run the sort of activities they used to do, so your mum is probably a bit bored. My mum's care home has a mix of residents, some more advanced than mum, some that just need a bit of help with medication or their mobility. In 'normal' times they would all mix together and there was loads going on. I bet your mum's home was similar. I don't think moving her, even if you could, would be a good idea. Eventually she is going to need to be in the sort of place she is in already. The home sounds like a good one, so that wouldn't be a reason to move either. Her losing weight sounds a worry, but it could just be that they haven't found out what your mum likes to eat yet. Maybe send in a few more snacks for her. You could investigate getting her teeth seen too, but that might cause too much confusion and stress.
Try not to stress about it too much, your mum is safe and that is more than she would be if you tired to take her home. You've done a brilliant job looking after her, it's now time to let others do it and return to being a daughter. I just hope you get to see her soon. I also hope your husband feels better soon. Is it worth him going back to the GP to find out if there is a root cause.
As my dear mother in law always says look after you, you are important too.
Try not to stress about it too much, your mum is safe and that is more than she would be if you tired to take her home. You've done a brilliant job looking after her, it's now time to let others do it and return to being a daughter. I just hope you get to see her soon. I also hope your husband feels better soon. Is it worth him going back to the GP to find out if there is a root cause.
As my dear mother in law always says look after you, you are important too.
Thank you for your update on your mum Annielou. I think everyone has given you good advice that your mum is in the right place . I think all our loved ones in care homes are struggling at the moment as it's not normal times anywhere. Activities will be different, entertainers may not be allowed etc. I hope that a decision is made so that things can get settled for your mum. My mum went through a spell of not eating for a while and the Dr prescribed some special drinks with added calories. She had those for a while, and has now started eating again. I do hope your mum picks up soon, so you can feel more settled about it all.
Thanks @Woo2 @Sarasa @anxious annie xxx
I did feel a bit better after I talked to SW this afternoon and my sister has text to tell me she had rung CH later this afternoon to see how mum was and DM said mum was feeling brighter and had gone downstairs. He said they were worried that the upset was new so it made them feel easier to know that it happened before and I'd helped and given him more insight into mum.
We didn't get chance to have a proper assessment before mum went into care home which I think would have helped to tell them a bit more about things mum struggles with and how she reacts. I've told him some things yesterday and today which hopefully will have helped understand what are mums problems.
The care home mum is in is emi nursing and residential but most of residents there are nursing, there are only one or two that aren't nursing like mum. So I think it comes from them caring about mum and wondering if she is getting best attention and not wanting mum to miss out or feel worse cos others are more obvious and might make mum feel worse or worried. They do seem to care about mum. He told sis to try not to worry, it's been a lot in last few days especially with meeting coming up but they're taking best care of mum they can and she's well liked there.
He told sis they have mums new prescription now, she was on10mg but I don't know what new dose is. He said they've got an appointment now with dietician in couple of weeks for mum and him and sis talked a bit more about what mum likes to eat too. He said they'd had a bit of a buffet the other day and mum had eaten lots of that so that was good. My sister said it would remind mum of being at mine cos I do that when sis and family come and sometimes on a weekend and mum likes that sort of thing. Maybe the thought of sitting down to eat big plate of food and the type of meal that's putting her off eating a bit again. Possibly if lot of others need soft food or help eating mum might be only person sat eating her dinner herself on her table and last year when she lost weight she ate better if we ate with her and if we finished before her she would stop at same time as us so we used to eat slower till she finished.
So we'll see how mum goes on with increased memantine and what dietician says and me and sis will try not to worry too much in meantime.
I did feel a bit better after I talked to SW this afternoon and my sister has text to tell me she had rung CH later this afternoon to see how mum was and DM said mum was feeling brighter and had gone downstairs. He said they were worried that the upset was new so it made them feel easier to know that it happened before and I'd helped and given him more insight into mum.
We didn't get chance to have a proper assessment before mum went into care home which I think would have helped to tell them a bit more about things mum struggles with and how she reacts. I've told him some things yesterday and today which hopefully will have helped understand what are mums problems.
The care home mum is in is emi nursing and residential but most of residents there are nursing, there are only one or two that aren't nursing like mum. So I think it comes from them caring about mum and wondering if she is getting best attention and not wanting mum to miss out or feel worse cos others are more obvious and might make mum feel worse or worried. They do seem to care about mum. He told sis to try not to worry, it's been a lot in last few days especially with meeting coming up but they're taking best care of mum they can and she's well liked there.
He told sis they have mums new prescription now, she was on10mg but I don't know what new dose is. He said they've got an appointment now with dietician in couple of weeks for mum and him and sis talked a bit more about what mum likes to eat too. He said they'd had a bit of a buffet the other day and mum had eaten lots of that so that was good. My sister said it would remind mum of being at mine cos I do that when sis and family come and sometimes on a weekend and mum likes that sort of thing. Maybe the thought of sitting down to eat big plate of food and the type of meal that's putting her off eating a bit again. Possibly if lot of others need soft food or help eating mum might be only person sat eating her dinner herself on her table and last year when she lost weight she ate better if we ate with her and if we finished before her she would stop at same time as us so we used to eat slower till she finished.
So we'll see how mum goes on with increased memantine and what dietician says and me and sis will try not to worry too much in meantime.
That all sounds more reassuring but really it sounds like the DM had a knee jerk reaction , which isn’t very professional or really very helpful for family unable to visit and at home worrying . Glad you felt better after speaking to SW and after text from sis . Things are being out in place by sounds of it . My Mil can’t face a big plate of food , she does better with a small amount and helping herself to more if wanted , maybe the home will try and adapt a little . Hope you can manage to take a breath and get some rest tonight . Big hugs ? ?
I know it's easier said than done but it does sound like where your mum is is about right for her, she certainly wouldn't fit in in residential.
I do hope that you get to sleep tonight.
Can you ask about having buffet style food put on her plate for other meals, I know you worked hard to keep her eating when she was at home, so maybe if you make some notes of what you did and didn't do and what she would eat and email them over. I know you've told them on the phone but they won't have made perfect notes. That way you know you've done everything you can.
I do hope that you get to sleep tonight.
Can you ask about having buffet style food put on her plate for other meals, I know you worked hard to keep her eating when she was at home, so maybe if you make some notes of what you did and didn't do and what she would eat and email them over. I know you've told them on the phone but they won't have made perfect notes. That way you know you've done everything you can.
I have been thinking of you for some days, wondering how your mum was getting on.
People are quite complex and it seems that the home are still finding out about your mum. Let’s face it we all have problems with our loved ones and this disease and we have known them for a long time.
Perhaps the DM means an EMI home which has more residents like your mum rather than people who require nursing care. I really think it needs clarification. Hopefully the meeting will bring this.
Memantine... it can make a real difference, my mum is on 20mg a day. Enough for your mum to live alone? I doubt it. Sadly there is no miracle drug for that, your mum needs safety and security which she will find in the home.
Diet and eating..now that is something the home must act on. I guess they have to go down the formal route ask dietician etc etc but we all know the elderly like small regular meals with plenty of treats!!
My mum eats well but is still 8st 7 ! and size 12! I watch her like a hawk.
I would take a bag of treats and maybe something nice like new undies to the home . Write a short note to say “we love you” , maybe a card which she could put in her room?
So sorry you are worried (understandably) hope that your husband’s tummy calms down and you can have a relaxing weekend with Star Wars and knitting!!
People are quite complex and it seems that the home are still finding out about your mum. Let’s face it we all have problems with our loved ones and this disease and we have known them for a long time.
Perhaps the DM means an EMI home which has more residents like your mum rather than people who require nursing care. I really think it needs clarification. Hopefully the meeting will bring this.
Memantine... it can make a real difference, my mum is on 20mg a day. Enough for your mum to live alone? I doubt it. Sadly there is no miracle drug for that, your mum needs safety and security which she will find in the home.
Diet and eating..now that is something the home must act on. I guess they have to go down the formal route ask dietician etc etc but we all know the elderly like small regular meals with plenty of treats!!
My mum eats well but is still 8st 7 ! and size 12! I watch her like a hawk.
I would take a bag of treats and maybe something nice like new undies to the home . Write a short note to say “we love you” , maybe a card which she could put in her room?
So sorry you are worried (understandably) hope that your husband’s tummy calms down and you can have a relaxing weekend with Star Wars and knitting!!
@annielou - good to have an update but I am sorry you are so worried.
I agree with others, there is no perfect care home. At the start Mummy was probably less affected by dementia than some, but we knew what the prognosis was, and wanted a home where she could stay when her cognition declined. That is what happened and I am glad we did what we did as she got to know the staff well when she had more capacity and this really helped later on.
Teeth can be a bit complex in care homes as dentists don't tend to visit, so even in non-COVID times it can be difficult to access them and very stressful for the PWD. Perhaps best to try different foods, dietitcian input first.
Even in an EMI unit, the staff will usually (they did in my Mum's unit) get those that can together to eat round a table, as you would at home. I doubt that your Mum would be eating on her own. Mummy had her meals on her own but only because she had very long legs, and was forever kicking people accidentally (and on purpose if she was bored!).
I agree with others, there is no perfect care home. At the start Mummy was probably less affected by dementia than some, but we knew what the prognosis was, and wanted a home where she could stay when her cognition declined. That is what happened and I am glad we did what we did as she got to know the staff well when she had more capacity and this really helped later on.
Teeth can be a bit complex in care homes as dentists don't tend to visit, so even in non-COVID times it can be difficult to access them and very stressful for the PWD. Perhaps best to try different foods, dietitcian input first.
Even in an EMI unit, the staff will usually (they did in my Mum's unit) get those that can together to eat round a table, as you would at home. I doubt that your Mum would be eating on her own. Mummy had her meals on her own but only because she had very long legs, and was forever kicking people accidentally (and on purpose if she was bored!).
Hi @annielou, just catching up after a very busy few weeks.
Its so hard putting someone we love into care and made worse by not being able to visit and help reassure ouselves that everything is a good as it can be. I don't have anything to add to the others comments, lots of good support which we need when we make these decisions. In the end mums EMI unit turned out to be the best thing for her. They can't make her eat, but they can accomodate her needs, over time she has settled in and become a part of the Windsor Unit family -something I never thought in a million years I would hear myself saying. Its still hard as I try to cope with the loss of what was and also move into the reality of now. You've tried your best @annielou I don't think anyone could do anymore than you have.
P.s. write and write if it helps xx
Its so hard putting someone we love into care and made worse by not being able to visit and help reassure ouselves that everything is a good as it can be. I don't have anything to add to the others comments, lots of good support which we need when we make these decisions. In the end mums EMI unit turned out to be the best thing for her. They can't make her eat, but they can accomodate her needs, over time she has settled in and become a part of the Windsor Unit family -something I never thought in a million years I would hear myself saying. Its still hard as I try to cope with the loss of what was and also move into the reality of now. You've tried your best @annielou I don't think anyone could do anymore than you have.
P.s. write and write if it helps xx
Thanks @Woo2 @jugglingmum @Starting on a journey @Helly68 @Palerider xxxxx for your replies and the advice and support ? it is very much appreciated.
I think the whole covid thing has made things much worse as normally we'd probably have spoke to CH before mum went in about things she struggles with, needs help with and way she reacts. Though I'm not sure I could have given them many tips on how to deal with mum as I really struggled myself and don't really have any. But if I was visiting regularly I could see mum for myself and might notice problems like her teeth, her weight, her mood and she might tell me things that hurt etc and the staff could ask, or tell me things too as they happened. It might help mum to see me regularly or it might upset her but at least we could try and I'm sure she would like a visit at times even if she didn't always know who I was exactly. But because of covid we can't do these things and so opportunities to spot things and me tell them, or them tell me things aren't there so I think they are having to get to know mum as they go along by themselves and we're having to rely on bits of info from quick phone calls which isn't ideal for any of us.
I do think the CH are doing a good job of caring for mum, probably better than I was as I used to struggle to do best for mum when I was looking after her and didn't know what to say and do quite often, as everyone has seen from my many long posts on here when I was doing it. Mum seemed a lot calmer when I visited her that 1 time at CH and from what deputy manager and staff have said on phone she has started to settle and join in and mix a bit more and deputy manager told me yesterday they haven't seen the agitation and aggression side of mum so that is a positive change since she was at home and in hospital.
I think the fact mum is calmer and more able than most of the others is why they feel a bit sorry for mum and wish there was somewhere with more people like mum for her to interact with. It is something me and my sister worried about when we were looking for a home but we had to find one that would accept mum as she was then, which could be quite aggressive and agitated and anxious especially when she couldn't or wouldn't do something and when she wanted to go home, but there aren't may emi homes in our area, especially ones that don't charge top ups. We did ring one home near me that did dementia care but when we explained how mum sometimes acted they said they didn't have staffing levels to cope with that and suggested this home mum is in. Now she is in the CH she isn't really showing those behaviours which is good, but then you wonder if she could have gone somewhere else. One thing my sister and I thought when SW said mum needed emi place was that mum probably wouldn't then have to move as her dementia got more advanced but maybe a place where there were different levels she could move between would have been better but we couldn't find one.
Both SW and Deputy Manager at CH have said they think mum does need an emi care home and couldn't cope at home so at least we didn't do wrong thing saying we thought she should be in a CH which I was worried about and so hopefully knowing they both think that will help me a bit with the guilt of doing it. Both the CH and us want what's best for mum, they say mum is well liked there which is good to hear. So we'll have to see what comes out at review about best place for mum etc, and I'll try not to drive myself and everyone else crazy worrying.
I think the whole covid thing has made things much worse as normally we'd probably have spoke to CH before mum went in about things she struggles with, needs help with and way she reacts. Though I'm not sure I could have given them many tips on how to deal with mum as I really struggled myself and don't really have any. But if I was visiting regularly I could see mum for myself and might notice problems like her teeth, her weight, her mood and she might tell me things that hurt etc and the staff could ask, or tell me things too as they happened. It might help mum to see me regularly or it might upset her but at least we could try and I'm sure she would like a visit at times even if she didn't always know who I was exactly. But because of covid we can't do these things and so opportunities to spot things and me tell them, or them tell me things aren't there so I think they are having to get to know mum as they go along by themselves and we're having to rely on bits of info from quick phone calls which isn't ideal for any of us.
I do think the CH are doing a good job of caring for mum, probably better than I was as I used to struggle to do best for mum when I was looking after her and didn't know what to say and do quite often, as everyone has seen from my many long posts on here when I was doing it. Mum seemed a lot calmer when I visited her that 1 time at CH and from what deputy manager and staff have said on phone she has started to settle and join in and mix a bit more and deputy manager told me yesterday they haven't seen the agitation and aggression side of mum so that is a positive change since she was at home and in hospital.
I think the fact mum is calmer and more able than most of the others is why they feel a bit sorry for mum and wish there was somewhere with more people like mum for her to interact with. It is something me and my sister worried about when we were looking for a home but we had to find one that would accept mum as she was then, which could be quite aggressive and agitated and anxious especially when she couldn't or wouldn't do something and when she wanted to go home, but there aren't may emi homes in our area, especially ones that don't charge top ups. We did ring one home near me that did dementia care but when we explained how mum sometimes acted they said they didn't have staffing levels to cope with that and suggested this home mum is in. Now she is in the CH she isn't really showing those behaviours which is good, but then you wonder if she could have gone somewhere else. One thing my sister and I thought when SW said mum needed emi place was that mum probably wouldn't then have to move as her dementia got more advanced but maybe a place where there were different levels she could move between would have been better but we couldn't find one.
Both SW and Deputy Manager at CH have said they think mum does need an emi care home and couldn't cope at home so at least we didn't do wrong thing saying we thought she should be in a CH which I was worried about and so hopefully knowing they both think that will help me a bit with the guilt of doing it. Both the CH and us want what's best for mum, they say mum is well liked there which is good to hear. So we'll have to see what comes out at review about best place for mum etc, and I'll try not to drive myself and everyone else crazy worrying.
You're right @annielou we have to prepare for the worst of days when finding a home to suit. At least everyone agrees mum is better in 24/7 care.
I think your mum is especially good at appearing ok, but you know how difficult it was to even keep her in her own home. I'd be worried about the weight loss as well but I recall you saying mum was a bit fussy so perhaps it's that plus her not settling yet. Work with the home to get her eating again and keep an eye on the meds - but try to have your own life as well. Hugs x
I think your mum is especially good at appearing ok, but you know how difficult it was to even keep her in her own home. I'd be worried about the weight loss as well but I recall you saying mum was a bit fussy so perhaps it's that plus her not settling yet. Work with the home to get her eating again and keep an eye on the meds - but try to have your own life as well. Hugs x
Thanks @imthedaughter x Yes, it is a relief we've not done wrong thing and rushed her in to CH too quick, was worried we had and that professionals thought mum shouldn't be in any CH let alone that one cos I hate idea of doing wrong thing by mum. She hasn't got as upset and angry as she was at home about wanting to go home which is a relief as I don't want mum to feel like that, but I think that is part of what's causing the wondering where is best, so we'll have to see what happens next.
Yes you remember right x mum is a fussy eater and can go off her food when upset and also gets into a habit of not eating once she starts too. I talked about that with deputy manager the other day on phone as well as maybe her teeth rubbing, so hopefully they'll be able to work out why and hopefully we'll be able to get mum back eating soon ?
I've dropped her a goody bag off this morning with 2 packs of hobnobs that she usually has for breakfast, pack of blue ribands and cake bars, multipack of crisps, a pack of milky ways and 3 bags of chocolate sweets, along with some mints, some magazines, a new puzzle book and a little note from me, so hopefully she might be tempted to eat some of those things and she'll have something to do and hopefully she'll know I'm thinking about her.?
Thanks for the hugs x and hugs back to you and anyone else who wants one ?????????
Yes you remember right x mum is a fussy eater and can go off her food when upset and also gets into a habit of not eating once she starts too. I talked about that with deputy manager the other day on phone as well as maybe her teeth rubbing, so hopefully they'll be able to work out why and hopefully we'll be able to get mum back eating soon ?
I've dropped her a goody bag off this morning with 2 packs of hobnobs that she usually has for breakfast, pack of blue ribands and cake bars, multipack of crisps, a pack of milky ways and 3 bags of chocolate sweets, along with some mints, some magazines, a new puzzle book and a little note from me, so hopefully she might be tempted to eat some of those things and she'll have something to do and hopefully she'll know I'm thinking about her.?
Thanks for the hugs x and hugs back to you and anyone else who wants one ?????????
Last edited:
Had two more calls from care home where mum is this week, first was to talk about flu jabs and moving mums GP as local authority is having all home residents registered at one GPs so mum will be moving surgeries. I don't have any objection to that as mum rarely went to the GP and each time we went she saw someone different so it's not like we're losing someone we'd built up trust and a relationship with. Mum won't know either as she still thought we were at old surgery with DR we had over 10 years ago and each time we went to knew one she was surprised. I couldn't give permission for mum to have flu jab as we don't have LPA so CH said will have to ask GP to do a best interest on it. I did tell them mum had it in past and had said would continue to have it so wouldn't have any objection to having it just so they'd know wouldn't be going against her past wishes. I asked how mum was, if she was brighter than after last call and he said she'd been brighter over weekend but still worried about her eating. I asked if mum had said anything about teeth rubbing and he said he'd got some bonjela but mum hadn't said they were hurting. I said It may not be her teeth that's bothering her then and she may have got into habit of not eating cos mum has done that before. He said it could be that yes and maybe she was trying to show them she wasn't happy there. I think that was partly what she was doing in hospital, mum won't eat if she's upset. He said he'd let me know how got on and what happens with dietician appointment in fortnight.
This afternoon CH called to say mum has tripped over a door sil going outside, He said mum was laughing about it and seems okay. They checked her over and she seems more embarrassed than anything and just wanted to get up and laugh about it. She landed on her bottom but one of carers who saw it thought she may have bumped her head on fence as she went down so they have called an ambulance just in case of head injury, though there is no sign of any injuries they said they have to call to be safe. They'll probably just check mum over but they're going to let me know what happens when they've been. I hope she is ok and doesn't need hospital. Don't want mum to have hurt herself and she didn't do well in there last time and would probably have to go back into quarantine when she comes back to CH too.
I hope this is a one off and isn't start of mum falling. Mum isn't very observant and can trip and bump into things, though she hasn't often fallen, it could just be mum might not have been paying attention and not noticed the door sil but I'm worried it's not that. Mum got a bit wobbly when she was barely eating and lost a lot of weight last year so it could be same now she's not eating much again, or it could be a side effect of tablets being increased as CH got new prescription to increase mums memantine last week. It's so hard not knowing why things are happening. I just want to give mum a hug and see how she is for myself, this not being with her is terrible. My sister said when I text her about calls that we've had few weeks of relative calm where thought mum was starting to settle in the CH and things were going ok and then this past week or so its been all worries again which is true.
This afternoon CH called to say mum has tripped over a door sil going outside, He said mum was laughing about it and seems okay. They checked her over and she seems more embarrassed than anything and just wanted to get up and laugh about it. She landed on her bottom but one of carers who saw it thought she may have bumped her head on fence as she went down so they have called an ambulance just in case of head injury, though there is no sign of any injuries they said they have to call to be safe. They'll probably just check mum over but they're going to let me know what happens when they've been. I hope she is ok and doesn't need hospital. Don't want mum to have hurt herself and she didn't do well in there last time and would probably have to go back into quarantine when she comes back to CH too.
I hope this is a one off and isn't start of mum falling. Mum isn't very observant and can trip and bump into things, though she hasn't often fallen, it could just be mum might not have been paying attention and not noticed the door sil but I'm worried it's not that. Mum got a bit wobbly when she was barely eating and lost a lot of weight last year so it could be same now she's not eating much again, or it could be a side effect of tablets being increased as CH got new prescription to increase mums memantine last week. It's so hard not knowing why things are happening. I just want to give mum a hug and see how she is for myself, this not being with her is terrible. My sister said when I text her about calls that we've had few weeks of relative calm where thought mum was starting to settle in the CH and things were going ok and then this past week or so its been all worries again which is true.
Hi @annielou, that's all a bit up and down isn't it. I hope the ambulance doesn't take your mum to hospital unless they think there is a good reason. My mum's had a few falls in her care home. I think it might be the drugs, but also that she tends to wear sandals as she doesn't find slippers comfortable. Whatever the reason for the fall I hope she's OK and it is just a one off. I fall over pretty easily due to my dodgy ankles, and it does shake you up whatever your age.
I hope they can sort out your mum's eating. My mum has become increasingly fussy about what she likes as she's got over, but the home seem to have found enough to keep her weight up.
I hope you are beginning to feel better about it all, and I hope the best interests meeting happens sooner rather
I hope they can sort out your mum's eating. My mum has become increasingly fussy about what she likes as she's got over, but the home seem to have found enough to keep her weight up.
I hope you are beginning to feel better about it all, and I hope the best interests meeting happens sooner rather
@annielou it sounds as though, barring the fall, things are going pretty well, all things considered.
CH have to let you know if they fall, even if they are OK afterwards. It took me ages to get used to this and I used to dread the home phoning. Mostly though it was just to let me know.
We switched Mummy's GP to the one the home used. Like your Mum, she didn't have a lot of history with her GP and as she needed more support in the later stages, I am glad we switched as the GPs often visited the home and were very good about seeing her (later on video call during Covid).
We found, once Mummy went into a care home, she ate much better. Regular mealtimes, the social nature of eating with others. Hopefully this will be the case for your Mum too.
Sorry you are having a worrying time, but I think you made the only decision you could. Any of these things could have happened outside the home, with no one to help her. It is awful not being able to visit, but I am sure she appreciates her "care packages".
CH have to let you know if they fall, even if they are OK afterwards. It took me ages to get used to this and I used to dread the home phoning. Mostly though it was just to let me know.
We switched Mummy's GP to the one the home used. Like your Mum, she didn't have a lot of history with her GP and as she needed more support in the later stages, I am glad we switched as the GPs often visited the home and were very good about seeing her (later on video call during Covid).
We found, once Mummy went into a care home, she ate much better. Regular mealtimes, the social nature of eating with others. Hopefully this will be the case for your Mum too.
Sorry you are having a worrying time, but I think you made the only decision you could. Any of these things could have happened outside the home, with no one to help her. It is awful not being able to visit, but I am sure she appreciates her "care packages".
Thanks @Sarasa @Helly68 xx Care home rang back about 5 to say mums ok and doesn't need to go to hospital so that's a relief. I'm so glad she's been checked over and is ok and not had to go to hospital. Here's hoping the fall is a one off. ?
Mum is a really fussy eater but she was eating ok up to her going into hospital. She lost 13 kgs last summer after a bad bout of diviculitis where she was barely eating as scared make it worse, was also struggling to cook for herself and not enjoying eating on her own but she had got back to eating ok with me making meals and us eating with her. Mum stopped losing weight, put a little bit back on and stayed the same weight until she went in hospital then onto CH in august . It's such a shame mum has lost more weight again now, Its awful not knowing why, I knew why she'd lost weight before but we're not sure why now. I hope she starts eating again and stops losing weight soon.?
Mums CHC meeting is beginning of next week and appointment with dietician is middle of next week so will see what comes of both of those and hope for some settling news.
Mum is a really fussy eater but she was eating ok up to her going into hospital. She lost 13 kgs last summer after a bad bout of diviculitis where she was barely eating as scared make it worse, was also struggling to cook for herself and not enjoying eating on her own but she had got back to eating ok with me making meals and us eating with her. Mum stopped losing weight, put a little bit back on and stayed the same weight until she went in hospital then onto CH in august . It's such a shame mum has lost more weight again now, Its awful not knowing why, I knew why she'd lost weight before but we're not sure why now. I hope she starts eating again and stops losing weight soon.?
Mums CHC meeting is beginning of next week and appointment with dietician is middle of next week so will see what comes of both of those and hope for some settling news.
