I am beginning to dread each visit I make to see mum now. I've said before how anxious I've been every time I park up and enter the home, because of what is waiting to greet me. As much as I want to see my mum and hope she's doing OK, more often than not she is distressed or in some other poor state.
The latest visit we made this weekend was a perfect example of why I worry so much about going. At this new home, after parking the car, we pass windows of residents' rooms before getting to the front entrance, and one of them is her room. As we pass, I notice her in her nighty exiting her room and going into the corridor, with the day room almost opposite. When we get inside, her voice is the first thing I hear. Her nighty is dirty and she is clearly uncomfortable - she is in the corridor with other residents and staff walking around, and she pulls up her nighty, no underwear on, and is asking to be helped. It is a very distressing scene and even after calling after her, she doesn't acknowledge my voice.
It is 10:30 and lots of residents are sat dressed in the day room, else we find them laying in bed in their rooms. We soon learn that mum refused to be cleaned and dressed earlier, so they had to leave her be while they sorted out the other residents. We sit in her room with her but she is groggy and confused. She says she doesn't want to stay there and wants to go home.
Two of the nursing staff come in, unaware that we're in there with her. They've come to attempt cleaning and dressing her. I take our little lad out of the room while my wife stays and tries to help. It's perhaps the single most distressing thing I've heard, if not seen, since this whole thing started.
She is clearly distressed at having people handle her. She screams and wails. It's evident she attempts to punch and kick them. She says she is cold and doesn't like being washed. She keeps telling them she can do it herself, or that she's already washed, but she doesn't know how to. It's a good 10 or 15 minutes of hearing something I've never heard from my mother before - even at the last visit we made to the former care home. It was awful. But what can you do?
When they had just about finished, I was able to make my appearance again, which didn't help things much at all. Even if my wife and I had swapped placed and I stayed in there, I couldn't have done anything. I would probably have been even more angry and upset than I was being outside with my son. No amount of reassuring or attempts to calm her worked. She doesnt' understand if she's told that those ladies are there to help her, and that nobody wants to harm her, and that she'll be better once she's clean and dressed. It's not that she doesn't listen - she simply doesn't understand anymore.
This is something the staff must be challenged with everyday from her, and I imagine more than once a day. It's an awful situation for them and for mum - the poor soul is confused and doesn't understand why she's there and being handled. When she's sat and settled, she appears fine - but talking gibberish a lot of the time and going to and fro beween speaking English and Thai. She does seem to be speaking English more often though.
It doesn't get any easier. That feeling of dread is still with me now, eve after visiting her - I can't shake off the worry and anxiety I feel about how she might be and what she's doing. Perhaps sitting there alone in a chair in the day room, like the other residents, not speaking to each other, just moving around and acknowledging greetings from the staff. It's a sad, sad sight to see.
Sunday, 28 February 2016
Friday, 26 February 2016
The Neverending Worry
I haven't seen mum since my visit on Friday and despite reassurances from the manager of the nursing home, as well as encouraging reports from my sister who is often visiting, I still don't feel at ease.
My father too had visited yesterday morning. While mum is apparently settled when sat listening to music and watching the world go by in the confined surroundings of the day room, it's when she needs assistance with toileting and changing that she really becomes a different person. My dad witnessed this himself yesterday - he told me how upsetting it was trying to get her changed, even with help from staff, but they got there eventually. It just goes to show that even though she's been moved to what should be a better home, it doesn't mean her behaviour or habits will change with it - she'll still exhibit the same response when people try to wash or change her, and it's down to this new set of staff to deal with it.
I am wondering also what the mood of the former care home is now that mum isn't there anymore. I wonder whether the staff are breathing a sigh of relief and feeling glad that the dynamics have got back to normal. It's a terrible thing but quite far to say she was a disruptive force in the three months she stayed there. I haven't yet been back but I plan to visit to return my pass and speak with whoever might be on duty. It would also be nice to see, one last time, the other residents there as we got to know who they were, as well as the staff. It would be a shame to completely cut them off seeing as they have been instrumental in getting to where we are today.
Tomorrow I plan to visit mum with my wife and our baby boy. I am dreading it already. As much as I want to go and see her, I am still hugely anxious about how she will be when we arrive. The new place, as I've said before, it not nearly as modern as the former home. I'm worried about the sights and sounds and even the smells that will greet us. It's a different environment with different people and different furnishings and men and women mixed together.
I just hope mum is calm and settled and feeling OK when we get there. I want to be able to sit and hold her hand and give her a hug without seeing her hair messy or her teeth not brushed or with dirty clothes or sticky hands. I guess I still have the memory of the last visit we made to her before she left the former care home, but that plus many other instances will stick in our minds for a long time.
My father too had visited yesterday morning. While mum is apparently settled when sat listening to music and watching the world go by in the confined surroundings of the day room, it's when she needs assistance with toileting and changing that she really becomes a different person. My dad witnessed this himself yesterday - he told me how upsetting it was trying to get her changed, even with help from staff, but they got there eventually. It just goes to show that even though she's been moved to what should be a better home, it doesn't mean her behaviour or habits will change with it - she'll still exhibit the same response when people try to wash or change her, and it's down to this new set of staff to deal with it.
I am wondering also what the mood of the former care home is now that mum isn't there anymore. I wonder whether the staff are breathing a sigh of relief and feeling glad that the dynamics have got back to normal. It's a terrible thing but quite far to say she was a disruptive force in the three months she stayed there. I haven't yet been back but I plan to visit to return my pass and speak with whoever might be on duty. It would also be nice to see, one last time, the other residents there as we got to know who they were, as well as the staff. It would be a shame to completely cut them off seeing as they have been instrumental in getting to where we are today.
Tomorrow I plan to visit mum with my wife and our baby boy. I am dreading it already. As much as I want to go and see her, I am still hugely anxious about how she will be when we arrive. The new place, as I've said before, it not nearly as modern as the former home. I'm worried about the sights and sounds and even the smells that will greet us. It's a different environment with different people and different furnishings and men and women mixed together.
I just hope mum is calm and settled and feeling OK when we get there. I want to be able to sit and hold her hand and give her a hug without seeing her hair messy or her teeth not brushed or with dirty clothes or sticky hands. I guess I still have the memory of the last visit we made to her before she left the former care home, but that plus many other instances will stick in our minds for a long time.
Tuesday, 23 February 2016
A New Home
I had almost given up on attempting to write anything here, but in the last two weeks there has been progress made at least.
Mum's condition however has gone from bad to worse - we have never seen her in such a distressed and hysterical state as she's been in the last few visits we've made to the residential home. In the time I've been signed off work by my GP, we've had meetings and discussed options for mum's care as the care home, as I've probably mentioned many times in this blog, just can't cope with her or give her the level of care she needs.
We considered whether bringing her home would help. My father and I started to clear space in the living room for a bed, seeing as the bathroom is downstairs, to help with day to day toileting needs and easy access to the bathroom during the night. But, all parties involved - social services, the care home, the CCG (Clinical Commissioning Group) and the doctors that have said that "the patient is not safe to go home", meaning there is a high level of risk in her being at home with dad, even with a care package in place such as having 2 carers visit them 4 times a day.
What this means for dad is that he will, at least for the foreseeable future, have to accept the fact that she won't be coming home, and I doubt she ever will now.
Social services contacted a few local nursing homes to review mum to see if they would take her. One had refused on the basis of not having any vacancies and another had refused because they couldn't provide the level of care she needs. Only this weekend, after I had visited and found her in such a distressing state and moments after emailing social services and the CCG to request a change to her medication that another nursing home called me to say they will accept her, and that arrangements would be made for her discharge from the current care home.
It's difficult to process seeing your own mother in such a miserable state. I felt that awful trepidation when entering through into the area at my last visit, but instead of seeing her sat in the day room, I heard her wailing and crying in her room down the corridor. Dinner all over the floor and desk, dirty clothes, no socks on, and a bed unmade and left to dry out after she had obviously had an accident. Her knees are bruised from throwing herself on the floor in her worst moments. Rejecting even my help to wash her hands and wipe food from her hair and face. She is a frail, scared and broken woman now.
The transfer happened yesterday while I was catching up during my first day back at work. I was very anxious about the move - would she let them dress and move her, would she be non-compliant or aggressive, would she refuse to go outside? Apparently though it went quite smoothly, from what I have been told, and by the end of the day I was informed she was already settling in to the nursing home. It's at least a step in providing better care for mum. It's such a pity it didn't happen when I was off work and available to help with her transfer.
Today, I visited her myself. My sister had visited the home last night and fed back some positive news, and my father has already been there too. I found her in the common room in a settled and pleasant mood. But how long will that last? The nursing home has both men and women mixed together and many of them are mobile. I only hope the episodes that the former residential home experienced with her in the afternoons and evenings don't occur in that environment. I fear that something awful might happen given the amount of people moving around amongst themselves...
But, it's only been a day so far. We need to give it time. I must admit feeling terribly sad as I sat next to her today, in another new environment with new strange faces. Time will tell...
Mum's condition however has gone from bad to worse - we have never seen her in such a distressed and hysterical state as she's been in the last few visits we've made to the residential home. In the time I've been signed off work by my GP, we've had meetings and discussed options for mum's care as the care home, as I've probably mentioned many times in this blog, just can't cope with her or give her the level of care she needs.
We considered whether bringing her home would help. My father and I started to clear space in the living room for a bed, seeing as the bathroom is downstairs, to help with day to day toileting needs and easy access to the bathroom during the night. But, all parties involved - social services, the care home, the CCG (Clinical Commissioning Group) and the doctors that have said that "the patient is not safe to go home", meaning there is a high level of risk in her being at home with dad, even with a care package in place such as having 2 carers visit them 4 times a day.
What this means for dad is that he will, at least for the foreseeable future, have to accept the fact that she won't be coming home, and I doubt she ever will now.
Social services contacted a few local nursing homes to review mum to see if they would take her. One had refused on the basis of not having any vacancies and another had refused because they couldn't provide the level of care she needs. Only this weekend, after I had visited and found her in such a distressing state and moments after emailing social services and the CCG to request a change to her medication that another nursing home called me to say they will accept her, and that arrangements would be made for her discharge from the current care home.
It's difficult to process seeing your own mother in such a miserable state. I felt that awful trepidation when entering through into the area at my last visit, but instead of seeing her sat in the day room, I heard her wailing and crying in her room down the corridor. Dinner all over the floor and desk, dirty clothes, no socks on, and a bed unmade and left to dry out after she had obviously had an accident. Her knees are bruised from throwing herself on the floor in her worst moments. Rejecting even my help to wash her hands and wipe food from her hair and face. She is a frail, scared and broken woman now.
The transfer happened yesterday while I was catching up during my first day back at work. I was very anxious about the move - would she let them dress and move her, would she be non-compliant or aggressive, would she refuse to go outside? Apparently though it went quite smoothly, from what I have been told, and by the end of the day I was informed she was already settling in to the nursing home. It's at least a step in providing better care for mum. It's such a pity it didn't happen when I was off work and available to help with her transfer.
Today, I visited her myself. My sister had visited the home last night and fed back some positive news, and my father has already been there too. I found her in the common room in a settled and pleasant mood. But how long will that last? The nursing home has both men and women mixed together and many of them are mobile. I only hope the episodes that the former residential home experienced with her in the afternoons and evenings don't occur in that environment. I fear that something awful might happen given the amount of people moving around amongst themselves...
But, it's only been a day so far. We need to give it time. I must admit feeling terribly sad as I sat next to her today, in another new environment with new strange faces. Time will tell...
Friday, 12 February 2016
The Reunion and the CCG Decision
It's truly been a week of ups and downs. In my last post on Sunday evening, I was expecting to go to bed, be up a few times in the night as usual because of our poor lad having tonsilitis, to be up in the morning and follow the normal morning routine and then heading to the nearby GP practice for my scheduled appointment with the doctor before going into the office.
I got as far as the GP but came home. I have been signed off work for 'stress related health problems', as well as having a chest infection which is more easily remedied by some antibiotics and rest. It's the first time it's happened to me, but I guess it was a matter of time. I simply don't feel well in myself.
My absence from work has afforded me the time to switch off (as was the intention) and concentrate on things outside of work, but this has still been challening. We're no closer to finding ourselves a new home, so that is very much something still needing to be done sooner rather than later. But, at least our lad is getting better and (touch wood) has actually been sleeping fairly well in the night - perhaps it's just his time, as today (Friday 12th February 2016) he is 10 months old. The problem has been getting him to take his own antibiotics - not easily done when the stuff tastes horrid and the guy has been known to throw everything up, so it's been a testing time to say the least with his illness alone.
On Wednesday my father and I took the chance to visit the care home together to see mum. Thankfully she was settled but still showed signs of being distressed and generally not with it. She did recognise him and spoke to him and even said at one point "love you, dad" which I found rather touching. My dad of course is not one to wail or scream but the tears flowed freely for much of the time there. It was only the second time he had seen her since having his heart attack back in November and it isn't pleasant for any of us seeing how much of her we've lost to the dementia.
When she was settled and sleepy again, we took our chance to slip out quietly without too much anguish. A tough thing for my father to do, but I'm used to it now.
Yesterday, we had some positive news - if you could call it that. The Clinical Commissioning Group had confirmed that they have accepted the suggestion by the mental health team and approved full continuing care funding for mum, for at least three months with a review again at the end of that period. What this means is that whatever care package they put in place and wherever that might be, that the NHS pays for it in full. I had that very same day written a cheque and sent it off the council in response to the bill we received for mum's care up to that point.
That same evening I was lucky enough to check my email to see an invitation from the care home asking me to be present at a meeting with social services and a rep from the CCG to discuss the next plans. I took my father with me and the team discussed what could be possible going forward, as the care home are not equipped to deal with mum's behaviour and have for some time already been finding it very difficult. One other specialist nursing home representative had visited but had refused to take her, because they already had several other clients with similar challenging needs. Another specialist nursing home was mentioned and it became a ray of hope for us - it is the same care home that looked after my uncle some years ago in the later stages of his life, so there was some encouragement that that particular home might be involved in helping with mum's care.
Sadly, the Assistant Manager called me this afternoon to tell me that they took had refused to take mum on the grounds of her challening and complex needs. It has been a blow to us, as there is only one other option left before the council have to look outside of the borough - which means mum will be taken further away and it will be difficult for my father to visit.
We have of course wanted to consider her going home, but this doesn't appear to be the way forward. It makes sense for her to be in her normal home environment, but she has been away so long now that even that might not feel as safe or comfortable as it once was. The fact is that things can't go back to the way they were anyway, anymore.
So, it's another matter of waiting for the weekend to be over with before the council can make new enquiries. Day by day, mum is getting worse and worse. The future looks bleak, but it's a future that is unavoidable.
I got as far as the GP but came home. I have been signed off work for 'stress related health problems', as well as having a chest infection which is more easily remedied by some antibiotics and rest. It's the first time it's happened to me, but I guess it was a matter of time. I simply don't feel well in myself.
My absence from work has afforded me the time to switch off (as was the intention) and concentrate on things outside of work, but this has still been challening. We're no closer to finding ourselves a new home, so that is very much something still needing to be done sooner rather than later. But, at least our lad is getting better and (touch wood) has actually been sleeping fairly well in the night - perhaps it's just his time, as today (Friday 12th February 2016) he is 10 months old. The problem has been getting him to take his own antibiotics - not easily done when the stuff tastes horrid and the guy has been known to throw everything up, so it's been a testing time to say the least with his illness alone.
On Wednesday my father and I took the chance to visit the care home together to see mum. Thankfully she was settled but still showed signs of being distressed and generally not with it. She did recognise him and spoke to him and even said at one point "love you, dad" which I found rather touching. My dad of course is not one to wail or scream but the tears flowed freely for much of the time there. It was only the second time he had seen her since having his heart attack back in November and it isn't pleasant for any of us seeing how much of her we've lost to the dementia.
When she was settled and sleepy again, we took our chance to slip out quietly without too much anguish. A tough thing for my father to do, but I'm used to it now.
Yesterday, we had some positive news - if you could call it that. The Clinical Commissioning Group had confirmed that they have accepted the suggestion by the mental health team and approved full continuing care funding for mum, for at least three months with a review again at the end of that period. What this means is that whatever care package they put in place and wherever that might be, that the NHS pays for it in full. I had that very same day written a cheque and sent it off the council in response to the bill we received for mum's care up to that point.
That same evening I was lucky enough to check my email to see an invitation from the care home asking me to be present at a meeting with social services and a rep from the CCG to discuss the next plans. I took my father with me and the team discussed what could be possible going forward, as the care home are not equipped to deal with mum's behaviour and have for some time already been finding it very difficult. One other specialist nursing home representative had visited but had refused to take her, because they already had several other clients with similar challenging needs. Another specialist nursing home was mentioned and it became a ray of hope for us - it is the same care home that looked after my uncle some years ago in the later stages of his life, so there was some encouragement that that particular home might be involved in helping with mum's care.
Sadly, the Assistant Manager called me this afternoon to tell me that they took had refused to take mum on the grounds of her challening and complex needs. It has been a blow to us, as there is only one other option left before the council have to look outside of the borough - which means mum will be taken further away and it will be difficult for my father to visit.
We have of course wanted to consider her going home, but this doesn't appear to be the way forward. It makes sense for her to be in her normal home environment, but she has been away so long now that even that might not feel as safe or comfortable as it once was. The fact is that things can't go back to the way they were anyway, anymore.
So, it's another matter of waiting for the weekend to be over with before the council can make new enquiries. Day by day, mum is getting worse and worse. The future looks bleak, but it's a future that is unavoidable.
Sunday, 7 February 2016
The Low Point
I feel pretty miserable right now. The last few days have been horrible but only because I succumbed to an illness that left me feeling weak and exhausted and hard to concentrate on anything. Plus, I made the mistake of 'being available' to my Company so got roped into lots of urgent tasks that I made me feel even worse. The last thing you need to do when you're not fit to work is... work. It's really frustrating.
Since my last blog entry, the written report from the full assessment we carried out at the care home had been written up proper and a copy sent to all parties, including my father and I. I had told him at the assessment that it was probably a good idea that he didn't hear much of what was being discussed because it wasn't particularly pleasant. But, he needed to read the report and when I spoke to him on the phone on the evening of the day we had both received them, I knew from the tone in his voice that it had affected him quite a bit.
Until then he had been for the most part ignorant of what was going on since he had spent his 5 weeks in hospital and the recovery from his heart bypass operation. But now, having got over the worst of and getting his strength back at home, the true reality much have struck him hard. Even I haven't ready the report from start to finish. I know what's in there but I had picked up the most pertinent points after the very first skim-through. Regardless of what's in there, we all - social services, the care team, our family and of course mum herself - await the decision from the Clinical Commissioning Group, or NHS panel, or whatever they should be called, as to whether she stays on where she is with additional support or gets moved to a nursing home. It's all about the money - if they don't approve and she doesn't get help with the funding, I don't know what happens next.
As for me, I'm pretty much close to breaking point as I write this. The middle of last week I felt absolutely rotten at work and had been under great demand from my job. Wednesday evening was the start of a couple of days of a high fever and a chest complaint. I don't know what it is but I had already booked an appointment to see the GP tomorrow in order to go over my health in general, given that I've been under a huge amount of stress, have lost weight (5 kilos or so) and am generally feeling that the last couple of months seem to be catching up with me - something the district nurse pointed out to me at mum's assessment. Big mistake of me to offer to help out with things at work - I could hardly concentrate on the tasks that normally demand some thought and attention to detail and to follow proper processes. How are you expected to do that when you're sick? I should have turned off my laptop and left it alone that Thursday.
The next two nights were pretty awful - I haven't felt that unwell in a long time. I'm feeling much better today but yet another problem has arisen - that our lad has tonsilitis. He had finished a round of antiobiotics after a GP had said he had a throat infection. He started feeling better when I started feeling ill, but the last couple of days he's been ill himself again. So, off we trot to the NHS Walk In Centre today and thankfully he's seen pretty quickly by a doctor. He has tonsilitis. So, once we're home we try to give him some of his new medicine but what does he do? He throws it up. We change him (and ourselves) and try again and guess what? He throws up again. It's a difficult thing for us to have to cope with, especially with everything else going on.
I haven't seen mum since last Sunday and spoke - with some difficulty as I was pretty sick that day - with the mental health doctor who was visiting mum and who wanted to discuss with me the matter of changing her medication. They are going to try a small dose of an anti-psycotic drug to help with her mood, which in turn should help the care staff be able to give mum the care she needs, rather than being non-compliant or rejecting their assistance. So, I can imagine her being even more groggy and less and less of the person we all use to know her as. But, it's something we have to try, for the sake of her wellbeing as well as the wellbeing of the care staff and other residents.
I tell you, I wouldn't wish this on anyone. I know my wife is struggling to stay positive too. Afterall, she's worrying about me worrying about everything else, and it isn't easy on her either. I just hope the GP bothers to listen to what I have to say tomorrow as I don't think anyone would be able to carry on like this without breaking down completely. Then again, what could they do anyway? Send me off with a packet of paracetamol no doubt, and I'll be going straight into the office afterwards, still feeling pretty poorly I'm sure and tired from lack of sleep due to poor little man not being well, and with the weight of everything still happening hanging over me. What joy.
One good thing to happen lately is that dad made the bold step of visiting the care home to see mum himself for the first time. I won't go into detail but apparently it wasn't as bad as we might have expected. I'm glad he did it.
Since my last blog entry, the written report from the full assessment we carried out at the care home had been written up proper and a copy sent to all parties, including my father and I. I had told him at the assessment that it was probably a good idea that he didn't hear much of what was being discussed because it wasn't particularly pleasant. But, he needed to read the report and when I spoke to him on the phone on the evening of the day we had both received them, I knew from the tone in his voice that it had affected him quite a bit.
Until then he had been for the most part ignorant of what was going on since he had spent his 5 weeks in hospital and the recovery from his heart bypass operation. But now, having got over the worst of and getting his strength back at home, the true reality much have struck him hard. Even I haven't ready the report from start to finish. I know what's in there but I had picked up the most pertinent points after the very first skim-through. Regardless of what's in there, we all - social services, the care team, our family and of course mum herself - await the decision from the Clinical Commissioning Group, or NHS panel, or whatever they should be called, as to whether she stays on where she is with additional support or gets moved to a nursing home. It's all about the money - if they don't approve and she doesn't get help with the funding, I don't know what happens next.
As for me, I'm pretty much close to breaking point as I write this. The middle of last week I felt absolutely rotten at work and had been under great demand from my job. Wednesday evening was the start of a couple of days of a high fever and a chest complaint. I don't know what it is but I had already booked an appointment to see the GP tomorrow in order to go over my health in general, given that I've been under a huge amount of stress, have lost weight (5 kilos or so) and am generally feeling that the last couple of months seem to be catching up with me - something the district nurse pointed out to me at mum's assessment. Big mistake of me to offer to help out with things at work - I could hardly concentrate on the tasks that normally demand some thought and attention to detail and to follow proper processes. How are you expected to do that when you're sick? I should have turned off my laptop and left it alone that Thursday.
The next two nights were pretty awful - I haven't felt that unwell in a long time. I'm feeling much better today but yet another problem has arisen - that our lad has tonsilitis. He had finished a round of antiobiotics after a GP had said he had a throat infection. He started feeling better when I started feeling ill, but the last couple of days he's been ill himself again. So, off we trot to the NHS Walk In Centre today and thankfully he's seen pretty quickly by a doctor. He has tonsilitis. So, once we're home we try to give him some of his new medicine but what does he do? He throws it up. We change him (and ourselves) and try again and guess what? He throws up again. It's a difficult thing for us to have to cope with, especially with everything else going on.
I haven't seen mum since last Sunday and spoke - with some difficulty as I was pretty sick that day - with the mental health doctor who was visiting mum and who wanted to discuss with me the matter of changing her medication. They are going to try a small dose of an anti-psycotic drug to help with her mood, which in turn should help the care staff be able to give mum the care she needs, rather than being non-compliant or rejecting their assistance. So, I can imagine her being even more groggy and less and less of the person we all use to know her as. But, it's something we have to try, for the sake of her wellbeing as well as the wellbeing of the care staff and other residents.
I tell you, I wouldn't wish this on anyone. I know my wife is struggling to stay positive too. Afterall, she's worrying about me worrying about everything else, and it isn't easy on her either. I just hope the GP bothers to listen to what I have to say tomorrow as I don't think anyone would be able to carry on like this without breaking down completely. Then again, what could they do anyway? Send me off with a packet of paracetamol no doubt, and I'll be going straight into the office afterwards, still feeling pretty poorly I'm sure and tired from lack of sleep due to poor little man not being well, and with the weight of everything still happening hanging over me. What joy.
One good thing to happen lately is that dad made the bold step of visiting the care home to see mum himself for the first time. I won't go into detail but apparently it wasn't as bad as we might have expected. I'm glad he did it.
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