Had enough today.
- Thread starter jorgieporgie
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There is a Quick Guide which you can download and print out, which is very helpful. And the FAQ thread is also very helpful. There's a link in there to the quick guide, and to the help videos. https://forum.alzheimers.org.uk/threads/faqs.104329/
This version is actually easier to use on mobile devices. It's just that we had gotten used to the old ways!
This version is actually easier to use on mobile devices. It's just that we had gotten used to the old ways!
And I just love this feature, where you can alert someone that you have replied to them, by mentioning them @WORRIER123 . That's really useful, in a fast moving thread, or where someone new joins an established thread, and then the thread moves on.
Look at you tech whizzs
I am working from home today. Already had an argument with BT
£45 a month for use of phone and Internet
I said so tell me how much my phone calls are - eh no calls made in 3 months so total £6.45
And my broadband ?
Eh u are nowhere near your limit.
So how am I paying £45 when I can get a tv phone internet package elsewhere for about £20
We can do £42 they reply
Here we go rant rant
I am working from home today. Already had an argument with BT
£45 a month for use of phone and Internet
I said so tell me how much my phone calls are - eh no calls made in 3 months so total £6.45
And my broadband ?
Eh u are nowhere near your limit.
So how am I paying £45 when I can get a tv phone internet package elsewhere for about £20
We can do £42 they reply
Here we go rant rant
Oh Lavender, and you thought the home was suitable. I know no home will be perfect, but still. Your mum so needs to be in a place where they understand and can easily manage her kind of behaviour, but why do so many say they can, but then the reality is different? What about the other place? Is that still a possibility? Maybe things will improve, and these are still 'teething problems'?
I am really struggling, but it's not clear to me right now what is causing the most stress and upset, as there's so much to deal with:-
- Someone living in my home (live in carer). She is very good and it has been tremendously helpful having her here but still, it's a stranger in my home and I have struggled more with this each day. It's just not something I like. But still, at least I have now tried it and KNOW I can't deal with it, whereas before I was just wondering! She leaves midday tomorrow. I am nervous, but I will have three calls a day and in between it will be just me and mum. I'm looking forward to that. Surprisingly, the agency has left her to make her own travel and financial arrangements for her next live in placement, which I was really surprised about. Considering she's not resident here, you would have thought they would look after her a bit more. We've had some stress this morning about that, but in the end I told her to ring the agency and get them to sort it, which they have. Amazing that I'll be paying them a huge amount of money for her services, yet I still got involved in the stress of her onward travel!
- The double incontinence. As well as the challenge of all the cleaning and changing, this is now causing extra issues with a nasty sore mum has, which just won't show any signs of healing. Mum is also on a rather large dose of diuretics, she picked up a new one in hospital. I think it's too much. It's causing sudden floods and we could do without that right now. District Nurse on the case, and GP due to visit early next week. As much as I hate the thought of temporary or permanent catheterisation, I think it might be the right thing to do as this thing just won't heal under current conditions. There's no easy answer to this one, but I will keep trying to find a way to ease the situation a little. Even with 'industrial' pads, we still have problems.
- All the phone calls and comings and goings. They have calmed a bit, but we get three visits a week from District Nurses, plus an OT and Physio occasionally (helpful, but will probably stop in a few weeks as mum not improving at all). There have been umpteen deliveries of various stuff and equipment. We still have one more chair to come on Tuesday. I've never had so much stuff in my home!! I am going to have to accept that my home will get a bit trashed too. May seem minor, but I am very house proud! There's already damage to my lovely wooden floors and doorways, but suspect this will get worse in time. May seem trivial, but it's my home ...
OK, only three points! But with all the above going on, plus meds, feeding, and everything else to do in the house, I am barely keeping myself sane. Maybe it will settle in time.
I conquered the previous challenges I had, and maybe once the live in has left, carers are calling at regular times, and sores heal a little (I hope) and visits and deliveries calm down a bit, I will start to conquer some of these as well. Right now I can't see a way through it all. Of course I am also still acting as the 'double up' and will continue to do so, three times a day, but in time I hope the agency will at least be able to send two carers to cover the morning session, which may further help. I don't know. And on top of all of this, I am really, really struggling to accept that six weeks ago mum was practically racing around the house with a walking stick, and now she's lost the power of walking. So sad.
I am really struggling, but it's not clear to me right now what is causing the most stress and upset, as there's so much to deal with:-
- Someone living in my home (live in carer). She is very good and it has been tremendously helpful having her here but still, it's a stranger in my home and I have struggled more with this each day. It's just not something I like. But still, at least I have now tried it and KNOW I can't deal with it, whereas before I was just wondering! She leaves midday tomorrow. I am nervous, but I will have three calls a day and in between it will be just me and mum. I'm looking forward to that. Surprisingly, the agency has left her to make her own travel and financial arrangements for her next live in placement, which I was really surprised about. Considering she's not resident here, you would have thought they would look after her a bit more. We've had some stress this morning about that, but in the end I told her to ring the agency and get them to sort it, which they have. Amazing that I'll be paying them a huge amount of money for her services, yet I still got involved in the stress of her onward travel!
- The double incontinence. As well as the challenge of all the cleaning and changing, this is now causing extra issues with a nasty sore mum has, which just won't show any signs of healing. Mum is also on a rather large dose of diuretics, she picked up a new one in hospital. I think it's too much. It's causing sudden floods and we could do without that right now. District Nurse on the case, and GP due to visit early next week. As much as I hate the thought of temporary or permanent catheterisation, I think it might be the right thing to do as this thing just won't heal under current conditions. There's no easy answer to this one, but I will keep trying to find a way to ease the situation a little. Even with 'industrial' pads, we still have problems.
- All the phone calls and comings and goings. They have calmed a bit, but we get three visits a week from District Nurses, plus an OT and Physio occasionally (helpful, but will probably stop in a few weeks as mum not improving at all). There have been umpteen deliveries of various stuff and equipment. We still have one more chair to come on Tuesday. I've never had so much stuff in my home!! I am going to have to accept that my home will get a bit trashed too. May seem minor, but I am very house proud! There's already damage to my lovely wooden floors and doorways, but suspect this will get worse in time. May seem trivial, but it's my home ...
OK, only three points! But with all the above going on, plus meds, feeding, and everything else to do in the house, I am barely keeping myself sane. Maybe it will settle in time.
I conquered the previous challenges I had, and maybe once the live in has left, carers are calling at regular times, and sores heal a little (I hope) and visits and deliveries calm down a bit, I will start to conquer some of these as well. Right now I can't see a way through it all. Of course I am also still acting as the 'double up' and will continue to do so, three times a day, but in time I hope the agency will at least be able to send two carers to cover the morning session, which may further help. I don't know. And on top of all of this, I am really, really struggling to accept that six weeks ago mum was practically racing around the house with a walking stick, and now she's lost the power of walking. So sad.
I hear you Marnie, it sounds like what I went through apart from the live in carer. This morning I looked at pictures of my dad from 20 April to 1 June - the deterioration was frightening walking one minute then bed ridden, eating like a horse then nothing, smiling then no expression
I still beat myself up thinking I could have done more but you can't
huge hug I know what you are going through I just wish I could help xx
Marnie I think I would struggle with a live in carer too regardless of how good or nice they were. I hope you find you can manage without the live in support. I know you want the absolute best for your mum and rightly so, but your mum would want the very best for you at the same time. She would not want you totally run into the ground. I guess you can only see how things go. Wish I could offer some practical support, but at least a big virtual (((hug))) is on its way to you and one for your mum too. Xxx
I went in to see mum this afternoon, but she barely saw me as she was fast asleep. I had a long chat with the one to one assigned to mum and I feel a lot more confident about the home. I also spent a while reading mum's notes and quite frankly she's appalling.
I'm hoping mum will settle down, but mindful that she never really calmed in all the time she was sectioned. At the moment she's hitting the staff and residents with her full assault arsenal, she's biting, scratching, kicking and punching. She's dragging staff by the hair, putting herself to the floor and chucking drinks about including hot tea. She's also making allegations against the staff claiming they are doing to her what she is in fact doing to them. All in all she's an absolute handful and I have to admire them for coping. There are 15 residents in mum's part of the home looked after by 5 staff. Mum is one of 3 residents on a one to one, so that's brings the total up to 8. I bet they need every one of those staff just to get through the day. The one to one said they have had residents with worse behaviour than mum, but not one who can go from calm to aggressive as fast as mum can. Oh dear, oh mum trust you!
I went in to see mum this afternoon, but she barely saw me as she was fast asleep. I had a long chat with the one to one assigned to mum and I feel a lot more confident about the home. I also spent a while reading mum's notes and quite frankly she's appalling.
I'm hoping mum will settle down, but mindful that she never really calmed in all the time she was sectioned. At the moment she's hitting the staff and residents with her full assault arsenal, she's biting, scratching, kicking and punching. She's dragging staff by the hair, putting herself to the floor and chucking drinks about including hot tea. She's also making allegations against the staff claiming they are doing to her what she is in fact doing to them. All in all she's an absolute handful and I have to admire them for coping. There are 15 residents in mum's part of the home looked after by 5 staff. Mum is one of 3 residents on a one to one, so that's brings the total up to 8. I bet they need every one of those staff just to get through the day. The one to one said they have had residents with worse behaviour than mum, but not one who can go from calm to aggressive as fast as mum can. Oh dear, oh mum trust you!
Mum's sores and wounds are getting worse. The DN came today and she called me in the afternoon to say a nurse will come tomorrow as well to try to dress the big wound near her bottom (though how you keep a dressing in place in that area I don't know). It's getting bigger and more painful for mum. I hope someone finds an answer soon, it looks terrible. And she has lots of little dark purple blisters appearing, some within hours, on her feet. She is diabetic and many nurses have looked at her feet now, but no one seems to know what's going on. Apparently the GP is going to come out early next week to look her over and an urgent referral to Podiatry has been made. I've been told that if things get a lot worse over the weekend, I'm to call 111 for an urgent nurse visit. I really, really hope someone does not suggest another hospitalisation, not sure I can go through all that again. I'm sure they won't, but who knows. On a slightly more positive note, the carer and I decided to use the 'riser' facility on her new recliner chair to see if she could do some stands on the rotunda, and she managed about five. She was not able to pull herself fully upright, but she was standing on her own. She was also using her left (weak) hand a lot more this evening, more than I've ever seen. Some nice things, but the wound and skin issues are really worrying me now. I just wonder if, with all the new changes, the body is reacting badly. Immobility clearly cannot be helping her cause.
Feeling glum.
Feeling glum.
I'm really not sure about this new TP layout. Things moving around all over the place and popping up on the screen. I'm too old for this! I just want everything looking like it was before, much easier! I remember when I got my new mobile I had to switch off all the moving and flipping images on the screen as they drove me mad. Why does it have to keep telling me every few seconds that the draft has been saved?!! Grrr.
I have obviously become so much more of an emotional wreck recently - the carer left just after midday and I really cried. I think although it was an intrusion in my home, it was also someone without dementia to have conversations with! I will miss her. The care agency messed up further as the taxi they had supposedly booked to take her to the station did not turn up. We had to stress further booking another. I do think it's awful they don't give their ladies some better support from one live in placement to another. You would think that with the amount they charge clients, it would be a bit slicker. I also found out from her that they only pay a paltry sum for travel between assignments, so they have to pay the rest themselves!
So, now it's just me and mum until the first of the regular carers arrives at 3. Mum will now only have her pad changed three times a day as I cannot hoist her on my own. A bit unacceptable, but what can I do? I have to time the diuretics well. I also need to talk to GP or someone about how long they take to act and maybe I can be a bit more 'scientific' about when I administer them. Of course this would not be such a concern if she did not have this awful wound in a delicate spot.
DN supposed to come this morning, but no sign yet. I've been told to call 111 if the wound/sore gets much worse over the weekend, so will have to see how it looks later. Problem now is that without another carer here I cannot get mum onto the bed nor can I position her alone for her to be examined. That's going to be the next challenge.
Please, please someone on TP get that 'draft saved' message to pop up less frequently - it's SO irritating!
I have obviously become so much more of an emotional wreck recently - the carer left just after midday and I really cried. I think although it was an intrusion in my home, it was also someone without dementia to have conversations with! I will miss her. The care agency messed up further as the taxi they had supposedly booked to take her to the station did not turn up. We had to stress further booking another. I do think it's awful they don't give their ladies some better support from one live in placement to another. You would think that with the amount they charge clients, it would be a bit slicker. I also found out from her that they only pay a paltry sum for travel between assignments, so they have to pay the rest themselves!
So, now it's just me and mum until the first of the regular carers arrives at 3. Mum will now only have her pad changed three times a day as I cannot hoist her on my own. A bit unacceptable, but what can I do? I have to time the diuretics well. I also need to talk to GP or someone about how long they take to act and maybe I can be a bit more 'scientific' about when I administer them. Of course this would not be such a concern if she did not have this awful wound in a delicate spot.
DN supposed to come this morning, but no sign yet. I've been told to call 111 if the wound/sore gets much worse over the weekend, so will have to see how it looks later. Problem now is that without another carer here I cannot get mum onto the bed nor can I position her alone for her to be examined. That's going to be the next challenge.
Please, please someone on TP get that 'draft saved' message to pop up less frequently - it's SO irritating!
Hello People...
There must be something mixed in with the change in the weather, going by the few posts I've managed to read in hopes of a catch-up; everyone appears to be wilting a little
I am so sorry but I can't stop for long cuz I'm after some directions, if anyone has the map
Mum is still in hospital but they are keen to move her on - fair enough - so I've got the whole Carers coming in vs care home with nursing battle going around in my head. So...any ideas on WHERE TO FIND LEGAL REFERENCE in easy-to-read preferably
ENDURING POA PRE-OCT 2007.
How to get POA HEALTH - WELLBEING.
CAPACITY ASSESSMENT.
As sure as eggs is pomegranates I've been looking all over the ruddy tintawebbie & can't find the answers I'm needing...ie legal definition At the moment I think the hospital is saying anything to get the bed from beneath her & - not through lack of trying - I'm going to end up in the DooDoo District
Gotta go, but not without a mahoosiff group ((((((((((HUG)))))))))) for you all
There must be something mixed in with the change in the weather, going by the few posts I've managed to read in hopes of a catch-up; everyone appears to be wilting a little
I am so sorry but I can't stop for long cuz I'm after some directions, if anyone has the map
Mum is still in hospital but they are keen to move her on - fair enough - so I've got the whole Carers coming in vs care home with nursing battle going around in my head. So...any ideas on WHERE TO FIND LEGAL REFERENCE in easy-to-read preferably
ENDURING POA PRE-OCT 2007.
How to get POA HEALTH - WELLBEING.
CAPACITY ASSESSMENT.
As sure as eggs is pomegranates I've been looking all over the ruddy tintawebbie & can't find the answers I'm needing...ie legal definition
At the moment I think the hospital is saying anything to get the bed from beneath her & - not through lack of trying - I'm going to end up in the DooDoo District Gotta go, but not without a mahoosiff group ((((((((((HUG)))))))))) for you all
Not clear on your query PT - do you mean you're trying get Health and Welfare PoA sorted, but not sure if mum will pass the 'capacity test' for you to be able to get it in place? If she has periods of some clarity, you can still do it. I did. Mum was very confused at that point, but there were still times when she seemed more lucid, and it was in one of those moments that I discussed the PoA with her, and got her to sign it.
Sorry to hear your mum is still in hospital. Hope you are not spending most of your life there like I did recently with my mum! If you think you can cope with mum at home, use the opportunity of her being there to get a care package in place. It seems they won't let anyone home these days without one and there's your opportunity - because if she comes home without one, they won't rush to visit you at home. That's how mine started up. I'd recommend direct payments though, then you can use the money to buy the care you want (from who you want), assuming mum is not self funded of course.
Two new carers visited today. They were both very good. It was more slick and fast than with the live in, but we had all day with her and these ladies are on a time limit! It's very quiet in the house. Mum was in bed by eight. Very weird. I will keep asking for the carers to come a bit later, but am having to be flexible initially. I think the 'standard' caring should work OK, even with me having to be carer no. 2, but the wound and the foot issues are really worrying me all the time now. I try not to worry, as I can't change anything, but I can't stop! The DN who came today has put a dressing on and she seemed to suggest that all the dark little blisters appearing over mum's feet might be due to changes after the stroke combined with her being diabetic. The hospital stopped her diabetic meds and she's only just back on them after her sugar levels rocketed. I will never know if that has added to the problems. No one will admit it if it has, anyway. She's being taken as good care of as we can, and that's all I can do in this ugly dementia and post stroke mess.
Sorry to hear your mum is still in hospital. Hope you are not spending most of your life there like I did recently with my mum! If you think you can cope with mum at home, use the opportunity of her being there to get a care package in place. It seems they won't let anyone home these days without one and there's your opportunity - because if she comes home without one, they won't rush to visit you at home. That's how mine started up. I'd recommend direct payments though, then you can use the money to buy the care you want (from who you want), assuming mum is not self funded of course.
Two new carers visited today. They were both very good. It was more slick and fast than with the live in, but we had all day with her and these ladies are on a time limit! It's very quiet in the house. Mum was in bed by eight. Very weird. I will keep asking for the carers to come a bit later, but am having to be flexible initially. I think the 'standard' caring should work OK, even with me having to be carer no. 2, but the wound and the foot issues are really worrying me all the time now. I try not to worry, as I can't change anything, but I can't stop! The DN who came today has put a dressing on and she seemed to suggest that all the dark little blisters appearing over mum's feet might be due to changes after the stroke combined with her being diabetic. The hospital stopped her diabetic meds and she's only just back on them after her sugar levels rocketed. I will never know if that has added to the problems. No one will admit it if it has, anyway. She's being taken as good care of as we can, and that's all I can do in this ugly dementia and post stroke mess.
I think I am fast reaching the stage where "one person cannot cope alone at home with the level of care needed". I now have another, big stress factor - the DNs are coming regularly - four days in a row now. But, they can only come when I'm able to position mum in bed, so that they can examine her. I cannot do this alone, so they have to come when the carers are here - but this cuts into the care time, massively! The one who came yesterday suggested I need to keep mum in bed until the sores heal and turn her every 2 hours - how the heck am I supposed to do that?! The SW who came a week ago said I may need to consider a hospitalisation again or a temp stay in a home to get the sores healed. I doubt they will hospitalise her ... unless I cunningly make that happen.
But a nursing home .... I know myself ... I will spend endless days there as I will feel so bad.
There is no answer to this. I feel so utterly helpless and out of my depth now, and when it comes down to protecting mum or me, it's got to be me as I'm too young to go down with this too. But I just can't let go.
But a nursing home .... I know myself ... I will spend endless days there as I will feel so bad.
There is no answer to this. I feel so utterly helpless and out of my depth now, and when it comes down to protecting mum or me, it's got to be me as I'm too young to go down with this too. But I just can't let go.
Hi Marnie
What would the world be without people like you that love and care for nearest and dearest.
You do the most amazing job, every time I read, I just know I could not do it. I love my Mum so much but struggle now.
I think to myself what would my Mum do if it was me, she would of course do everything like you.
I unlike you would doubt myself and be scared of getting it wrong not giving enough and letting her down when she needs me. You have carried on and fought the battle, you've won on every level delivering everything you possibly can as a professional carer.
I so wish I had your patience, tenacity and drive. You inspire me to step into the next day.
Like you say there is only so far you can take your role when others are required. You have the common sense to recognise the team needs to grow beyond what it is now, do the thing you are best at and go get it. YOU ARE AMAZING
What would the world be without people like you that love and care for nearest and dearest.
You do the most amazing job, every time I read, I just know I could not do it. I love my Mum so much but struggle now.
I think to myself what would my Mum do if it was me, she would of course do everything like you.
I unlike you would doubt myself and be scared of getting it wrong not giving enough and letting her down when she needs me. You have carried on and fought the battle, you've won on every level delivering everything you possibly can as a professional carer.
I so wish I had your patience, tenacity and drive. You inspire me to step into the next day.
Like you say there is only so far you can take your role when others are required. You have the common sense to recognise the team needs to grow beyond what it is now, do the thing you are best at and go get it. YOU ARE AMAZING
Dollybird is right you are amazing!
You mentioned the option of a temporary nursing home placement. Maybe that could be a solution. A placement for now and then you'll see.
I sound hypocritical having ranted and raved about the things I saw in mum's home last weekend, but hindsight says I was looking for trouble and was always going to find it. I hate change and part of the problem was me hating the move. Since last weekend I have been in on Monday, Tuesday and Friday and I can see that whilst it will never be perfect they genuinely care about mum, they must be saints to do so given her behaviour chart!
I guess all of us do what we can, but you cannot make yourself into the two people needed for moving and positioning your mum. Maybe if you tried a temporary placement whilst the sore heals you could later decide if it's to become a permanent move or not. I guess in some ways you are in a similar situation to me doing what is needed rather than what we'd prefer. It's also possible that like me you will be able to reconcile yourself to the move knowing it's the best thing for your mum just now. Marnie I don't mean that as criticism at all, I just mean that the path the illness has taken is one which needs more than one person can deal with. If only this illness didn't exist! X
You mentioned the option of a temporary nursing home placement. Maybe that could be a solution. A placement for now and then you'll see.
I sound hypocritical having ranted and raved about the things I saw in mum's home last weekend, but hindsight says I was looking for trouble and was always going to find it. I hate change and part of the problem was me hating the move. Since last weekend I have been in on Monday, Tuesday and Friday and I can see that whilst it will never be perfect they genuinely care about mum, they must be saints to do so given her behaviour chart!
I guess all of us do what we can, but you cannot make yourself into the two people needed for moving and positioning your mum. Maybe if you tried a temporary placement whilst the sore heals you could later decide if it's to become a permanent move or not. I guess in some ways you are in a similar situation to me doing what is needed rather than what we'd prefer. It's also possible that like me you will be able to reconcile yourself to the move knowing it's the best thing for your mum just now. Marnie I don't mean that as criticism at all, I just mean that the path the illness has taken is one which needs more than one person can deal with. If only this illness didn't exist! X
I guess in some ways you are in a similar situation to me doing what is needed rather than what we'd prefer.
That's it Lavender spot on. You too are amazing in what you do.
Not only is everyone caring for loved ones, you are equally caring for folk like me who gets to learn so much as you take the time and trouble to post.
I so hope you realise how much you give to me too. Massive thanks. XX
That's it Lavender spot on. You too are amazing in what you do.
Not only is everyone caring for loved ones, you are equally caring for folk like me who gets to learn so much as you take the time and trouble to post.
I so hope you realise how much you give to me too. Massive thanks. XX
Thanks DB and Lavender. That is the crux of my problem - I keep doing what I think and want for mum, rather than perhaps what she needs. But what she needs is many of me, in her own home, and that ain't gonna happen. Next best thing is other carers in my own home. I think we have started off OK and our usual lady was here for two hours this morning, so it wasn't so rushed. I need to sort out the DN visits and I think they need to be more flexible in the timing of their visits, I cannot allow them to stress me out further (like yesterday's one did).
Somehow I managed to change mum myself late last night. Same as before, nothing all day and then a few hours after bed, the floodgates opened. I managed to roll her by running from side to side. lifting and dropping the bed sides and changing everything. She was sopping wet and I had to change her nightie as well. No easy thing, on my own, when she can't help! Anyway, I did it and this morning's flood was not as bad. Now we are waiting for the 3pm carer and I think mum will need changing, so maybe tonight will not be so bad. We'll see. I think we are getting the same nurse as yesterday, so will probably have to bite my tongue.
Right now she's so tired she's bent over in the wheelchair and I'm trying to keep her upright. One hour forty until the next carer comes. Will she survive? Probably, but it's worrying. Maybe I need 4 calls a day but, AARRGGHH all those people, coming and going. This is awful. Wish I could do more myself.
Somehow I managed to change mum myself late last night. Same as before, nothing all day and then a few hours after bed, the floodgates opened. I managed to roll her by running from side to side. lifting and dropping the bed sides and changing everything. She was sopping wet and I had to change her nightie as well. No easy thing, on my own, when she can't help! Anyway, I did it and this morning's flood was not as bad. Now we are waiting for the 3pm carer and I think mum will need changing, so maybe tonight will not be so bad. We'll see. I think we are getting the same nurse as yesterday, so will probably have to bite my tongue.
Right now she's so tired she's bent over in the wheelchair and I'm trying to keep her upright. One hour forty until the next carer comes. Will she survive? Probably, but it's worrying. Maybe I need 4 calls a day but, AARRGGHH all those people, coming and going. This is awful. Wish I could do more myself.
I think we all support each other Dollybird. You all listen to me when I moan or rant or fret about mum and that is hugely important to me. I know this thread and the wider talking point forum has been a life saver for me. Without the advice and support I've received I'm convinced I'd have "gone under" overwhelmed by the whole dementia situation ages ago and I know for certain I'd still be trying to convince my mum that her mum and dad have been dead for donkeys years!
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