Thanks @anxious annie x
I called CH again yesterday morning to see how mum was after being moved out of isolation on thursday. They said mum was fine and had moved. I'd been worried she'd be more confused and upset with moving but they said no she was ok, she had been a bit more confused that morning but was ok really and was fine. She said mum was moving round and eating and drinking ok which was reassuring as mum hadn't been eating much in hospital, it sounds like they think she is eating ok there.
I'd been worrying they'd say mum didn't take the move well and had been more upset and wanting to leave more than before thinking her two weeks was up so she should be able to go home but it sounds like she wasn't worse than she had been before the move so that's good. Mum's still confused about where she is and why she's there and still wanting to go home and still getting upset and grumpy as she has been since she went into CH but does sound a little bit better than when she was in hospital.
I feel so sad that mum doesn't understand where she is and why and what is happening and there is no one and nothing around her who she knows, I keep thinking about it and even dreaming about it and wishing there is something I can do about it but I can't really. At home mum didn't know who I was a lot of the time but she knew she knew me so I could reassure her some of the time, that was getting harder but now I'm not there at all. She didn't always think she lived in her house, or thought she had just moved there, but she sometimes recognised it especially earlier in the day and she loved it, she was feeling like she should be elsewhere more and more but now she's somewhere different all the time. I feel so sorry for her, she must feel abandoned at times and so confused where we are and why she can't go home. I wish I could have kept her safe and happy at home, I wish this wasn't happening to mum.
Oh @annielou you did so much to keep your Mum in her home for so long but that evil dementia made it impossible. It is not just the sufferer it is those around them. Your post is so heartfelt and I wish I could say something to make you feel better.
I know it does not help you so much but your Mum is being cared for now 24/7 and staff will have techniques to help with her confusion.
Sending you masses of hugs
That guilt monster needs another whack. You were/are doing everything possible for your mum. You could do no more! Whack it again!!
Fresh air, a little walk maybe? Find a big stick then whack it as necessary. It pounces when you are tired and weary so be prepared to retaliate!!!
Yes its the guilt monster whispering in your ear that you are a bad daughter who has abandoned her and you could have done more.
Lies, all lies - wield that stick!
You did everything you could, tried all tactics, explored every avenue, but eventually dementia brought the tide in and overwhelmed it all.
Remind yourself that she is safe and looked after, which the dementia wouldnt allow you to do - dont forget that she frequently threw you out of her house and wouldnt allow you to do things for her. If it will comfort you at all, time works differently for people with dementia and she is probably not aware how long it has been since she has seen you, so most of the time she probably doesnt feel as abandoned as you fear.
That guilt monster needs a very hearty whack @annielou. You've gone above and beyond what most of us would have done to keep your mum at home. I know being in a home isn't what your mum said she wanted, but it is what she needs and I'm sure she is beginning to settle.
thanks for your kind replies xxxx I do feel guilty though I knew I couldn't carry on much longer I still wish I could have tried harder or done better but mainly I just feel so sad for mum. Sad because the dementia has made her confused and unsettled and took away what she knows and is familiar with and what she was comforted by. I just can't stop thinking of her feeling confused and scared and alone. I know she was like that at home more and more and also when I was with her too sometimes, its not just cos she's in the care home and I'm not there, it's because of the dementia and all it takes.
My sister text a while ago to ask if I'm calling the CH today and I told her I'm not sure but don't think so cos I don't want to cry on the phone. I didn't want to tell her that and feel such a wimp but I tried calling CH earlier and was sobbing before I finished dialling so hung up and as soon as I read my sister's text I started crying again. She said she will try and call them later if its quiet cos she's in the car coming back from visiting her boyfriends sister and will be in the car most of the day. If neither of us manage it today I'll have to pull myself together and call tomorrow and stop being such a cry baby. It's mum that's suffering and I'm the one crying which is no help to anyone.
Cut yourself some slack - you are grieving the loss of your mum. You want the old mum who could look after herself at her own home, back and its very hard when something like a move to a care home shows that its not coming back.
You are allowed to grieve, its not selfish.
You are allowed to not call every day, especially if it's upsetting you. I don't know what happened to my dad, who loved to travel, went to every show at the local theatre, critiqued the opera on Sky Arts, and I rarely think about it too much but it's really sad that he will never be the same again. I'm not sure I've accepted it myself, and it sounds like you've not either. I wish it hadn't happened too.
Now another team is looking after mum you have this space and it's getting filled with grief. This is natural. It's going to become bearable, though, in time.
On a positive note it sounds like mum coped rather well with the move, which is good.
You are mourning your old mum, so cut yourself some slack In my mum's case things happened slowly over a number of years so I had time to get used to it.
I wouldn't assume she is unhappy, certainly I think she might feel safer and therefore less unhappy in the care home.
Thanks again for kind replies xxx It is like a grief you're right. Also I'm so sorry for my mum and feeling helpless to make things better for her. I suppose all that can be done is to find people to look after her and keep her safe which is really what the care home is for. I hope that she does start to feel safe there and they help her when she is confused and upset to get over it as quickly as possible. Hugs to you all
You're having a tough time @annielou, but don't be hard on yourself, you did the best anyone could do for their mum. Don't worry, I am sure the Care Home is used to having family members cry on the phone. It's very hard not being able to be there for your loved ones. Perhaps try phoning and speaking with your mum next week. Can you FaceTime her? My mum still enjoys seeing us on the Home's tablet X
Thanks @anxious annie x I think you can facetime as I think I remember he told my sister you could when we were talking to deputy manager before mum went in to home from hospital. I'm not sure how mum would react though and last time I rang he said he wasn't sure how mum would react to talking to me on phone when I asked to talk to her, we were on less than a minute and mum was mixed up but it's worth thinking about trying or trying again on the phone. X
My sister text me last night and said she'd called CH and they said mum was doing ok and some of her things were now unpacked. She said mum was playing Mother Hen to the other residents helping them out. That mum was still saying she needed to go home but they were managing to distract her. They said mum was eating ok most of the time, they can sometimes persuade mum to eat a bit of toast at breakfast and some meals she picks at, others she eats fine and she's talking her tablets ok. I was grateful to sis for ringing as I'd been upset and weepy and didn't want to cry on the phone to CH.
It was good to hear at least some of mums things had been unpacked, not sure who by if it was by mum or them, but hopefully they might manage to get a few things washed a bit easier now. The bit about mum being a mother hen to others is very like the old mum, she loves to be helpful and look after people. Of course now she wouldn't pick up on whether they wanted her help or not, or if she is doing right thing and possibly mum thinks she works there which could cause problems too, but at least she wasn't being nasty to them as she really wasn't very nice about some of the other patients in hospital. The other day when I rang they said mum was eating ok which I was reassured by cos I ad been worried about it as mum hadn't been eating much in hospital, but it was slightly different when sis rang yesterday as she said her eating was mostly ok, but still not too bad. We were both surprised about the toast for breakfast though cos Mum hasn't eaten breakfast for most of her life. She usually just has a cup of tea and 2 or 3 hobnobs as she can't stomach much first thing on a morning. That's why I used to give her her galantamine tablet with lunch as it has to be taken with food but it made her feel sick if she took it with her breakfast as she hadn't eaten enough. In hospital they gave her all her tablets together in morning. I told them it makes her feel sick and they said she'd been fine, but mum wouldn't have told them if she felt off it as she thought they would use it as an excuse to keep her there longer. She told me one day when I was visiting that she felt sicky so I told nurses again about tablets can make her sick as doesn't eat much breakfast and after that they gave her omneprazole to help and still gave her tablets altogether at breakfast. By the sound of it the CH is doing same so that and being upset could be reason mum is sometimes picking at some meals.
My sister sounded quite positive about CH call last night and overall it was mainly positive news so I felt a bit better, but then my sister messaged me this morning saying she rung CH again this morning to speak to deputy manager. She said she wanted to see how he thought mum was doing as woman on phone yesterday had said something about mum not being as advanced as some of the others and wondering if it was right place for her. Sis hadn't mentioned anything about that last night in her message but sis was probably trying to be positive for me as I'd been upset and she does tend to summarise things quite briefly, but it must have bothered her and she decided to ring again today.
Deputy manager said today that mum had been wanting to help the others but they had to try and kerb her enthusiasm. He said he could see where other person sis spoke to yesterday was coming from but thinks the trouble is that mum seems quite switched on, but she isn't really and she doesn't recognise that in herself, she's really quite confused and stuck about 30 years ago. He said they will monitor her closely this week and let us know.
So now sis and I are wondering if mum would be better somewhere else and may need to move. I'm also wondering if when we have best interests meeting with Nhs SW and mums council SW if they'll suggest her own home and carers, or another home but not an EMI home like this one. We want mum to be in right place where she is happiest she can be and safest she can be, but aren't fond of idea of her being moved again as will only upset and confuse her again so its not great if say she needs to.
We went for this home because at mums first ever assessment with the first SW she said if mum went for respite to look for EMI home as mum would need the extra security and level of staff to cope with her wanting to leave and not thinking there is anything wrong with her. The second assessment the second SW didn't mention EMI and when sis asked her why not, SW said she thought it might put mum off to be with people more advanced than mum as mum wasn't that bad really. She had been quite dismissive about mum during assessment visit so we thought she was just saying that as thought mum was much better than we thought. The third assessment with third SW she said mum would probably need EMI home and that we should tell any CHs we contacted about mums most challenging behaviour. How mum wants to leave to go home and gets upset and angry when people try to explain she can't and how she gets when someone says there is something wrong with her. When we explained that to one of other homes sis had contacted while mum was in hospital they said they couldn't take that behaviour and suggested an EMI home and named the one mum is in. The hospital told us for their assessment they would put mum in any home with vacancy that said could take her for which might not be EMI as they go for cheapest but when we said this home had a vacant place and didn't require top ups above LA rate they said they would try for that home as sounded like mum would be better there as she kept trying to leave hospital and mums LA SW had said she thought she needed to go there and didn't want her to have to move after assessment. So we thought it was right place.
My sister and I don't know what stage mum is at and what level of care mum needs, we're not trained, we just went on what we were told to do and say. The SW never got to actually finish a proper assessment of mum as mum got annoyed, upset and wouldn't continue once I was asked a question and told the truth rather than mums version and each time they tried to talk to mum at hospital she got annoyed and upset after a short while too so they had to keep leaving it and coming back later, which they said was an indicator itself. They never said what level she was at or what level of care she needed and that this home might not be right, but then that is part of reason she was sent to CH to get a more complete assessment of her needs so I suppose it wasn't final decision and more assessing was to be done before it was made.
When I looked at pictures of CH on facebook most in the photos do look like may be more advanced than mum, I know some are incontinent and need help feeding and getting around which mum doesn't. I did wonder if the activities they did would be a bit under stimulating for mum if others are more advanced than mum but with only photos to go on, and they weren't photos of all residents cos usually just of same few and they have more residents than shown, so we couldn't really tell and weren't able to compare mum to them properly.
So now we'll have wait and see what they think after monitoring her this week. Now she is in proper part of home mixing they will probably be able to get a better idea of her and assess her a bit fuller I hope. If they decide she's not in best place then we'll have to find mum somewhere else if they say still needs a CH but not this one. Nothing just goes smoothly and easily does it,
Hi @annielou, obviously you will find out more at the best interests meeting, but it sounds to me as though your mum is in the right place. Remember that this is the best she is going to be and I don't think anyone would suggest her going home and moving to another home would just unsettle her. The deputy manager said that she isn't aware that she is confused and thirty years in the past and I think that is important to remember.
My mum seemed more together than a lot of people in the home she is in, but she wasn't really, it was just that I knew her and could second guess what she meant and intended.
No home is going to match a persons needs exactly, you just need the best fit you can.
Try not to worry about it too much. It's a bit like when kids start school, you keep on wondering if you've made the right choice.
I wouldn’t worry too much about that if you can help it , there will always be differing stages and it’s better she is there and not have to be moved again . Maybe the person your sis spoke to yesterday isn’t privy to all the information on your mum and how upset she was before , they won’t want to move her unless they have to I’m sure . Sounds positive though, that mum eating ok and helping others (even if that’s not really what they want ) they maybe able to find some little jobs for her to do now she is in main home and finding her feet a little . I don’t see any negatives in there , it’s just time , they need to fully assess , I’m sure they will not send mum home with carer’s , they won’t fund 24hr care and 4 visits wouldn’t be enough now , they have all the info in front of them re wanting to go and find family , how she was in hospital etc . Try and not worry too much and see what happens . Easier said than done I know .
That deputy manager sounds spot on in his summery of your Mum.
There is absolutely no way anyone would suggest she can go home with carers!!! I mean the risk is still there after all isn’t it, that’s the reason she is now in care.
Like others have said every person is never going to fit a home exactly and I do agree the one your Mum is in does really sound right for her, because when she had her tough days she does need that level of care to keep her both there and safe.
I wouldn’t worry about the activities either they will cater for all residents needs and abilities.
Your mum just needs time to settle and I think she seems to be doing that nicely.
Try not to worry about it all, I know it’s hard to accept your Mum’s new life, but please be comforted in that she is safe and has staff on hand to support her whatever her mood.
She will settle and be as happy as this terrible disease will allow her to be.
Thanks @Sarasa@Woo2@DianeW xxx I was a bit shocked and I think my sister was too as we assumed that's where mum needed to be from what we'd been told before and now someone at CH is wondering if it is or not and it came as a surprise.
If it's not best place for mum then we would want her to be where it would be better suited but are worried how we will know where is better suited as its up to us to find places, our LA don't help in anyway. Also it's not great if mum has to move and isolate again as that will add to mums confusion and upset as well as ours if I'm honest.
I did wonder at first look at CH mum is in now on facebook if it was suitable for mum as she is now, but as we'd been told before EMI would be best for her and there weren't many we could choose from we assumed that it was the right place. And really what can you tell from a few facebook photos and videos of a few residents when you don't really know what you're looking for.
Mum was so confused and mixed up about where she was and who she was with at home and didn't believe anything was wrong with her, or that she needs any help so we thought that was reason for EMI and while she was in hospital she was constantly trying to leave and mixed up and everyone seemed to agree a home was best place for mum rather than returning home.
I suppose the worry they'll send mum home with carers is me worrying, as that's all that's ever been offered before and I worry they'll go back on it now and we will struggle with that. It's not been mentioned by anyone, so its probably not going to happen now and it's just the level of care in CH they're looking at now. It's just a shock when we thought it was just a matter of confirming her needs and she'd be staying where she is, and to hear someone say she might not be in right place is bit of a worry.
There isn't anything we can do about it though really it's just wait and see what they come up with. Deputy manager didn't say if he agreed with other person or not, but he did say mum seems quite switched on but isn't really and he seems to have a good grasp of mum when we've talked to him before. So it's wait and see and expect anything again I think
I think this care home is the right one for her too.
I wouldnt worry about other residents being more advanced than she is - it shows that they can continue to look after her as her dementia advances. If you moved her to somewhere where no-one is that advanced then it wouldnt be long before they decide that they cant meet her needs and you would have to move her again.
My mum was about the same stage as your mum - she too was stuck about 30 - 40 years previously, kept wanting to go home and was out wandering. She moved to an EMI unit and to start with I thought it wasnt the right place for her, but after the 6 weeks stage at the Best Interest Meeting, I knew it was exactly the right place for her. Having people around who were further along than she was didnt seem to bother her at all, she chatted to the ones who were still able, plus the carers and made friends with the ones at about her stage.
One of the carers commented to me that if you listened to them chatting, but not intently, you might think that there was nothing wrong, but listen in detail and you could tell that there was something very wrong! Im guessing that the woman your sister spoke to doesnt have as much experience of dementia as the deputy manager. I would listen to what he says.
Thanks @canary x
I thought similar to what you say even if Mum’s not at the same stage now she wouldn’t need to move when reached it. As it’s not up to me and sis we’ll just have to wait and see how this weeks monitoring goes and what they say. Will try not to worry too much