looking ahead...

SaraKate

Registered User
Dec 29, 2018
49
0
My husband is not diagnosed but clearly there is something wrong. He has tremor, and loses words, can't remember facts even a few minutes later, and gets anxious and 'fussy' about small matters. He's seeing a neurologist so we will soon know more, and it's much easier at home now he thinks that there might be something wrong and it's not just my fault. Reading these forums I wondered if you would tell me if you are glad that you are making/have made these tremendous sacrificies of your own lives to care for a loved one? I understand that this is a good place to vent, and to share distress and difficulties but I wanted to know if behind this there is a sense of willingness - or if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do? I hope I don't offend you by asking? Im looking ahead and wondering what I have to do/can't avoid/ want to do.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do?
Hello @SaraKate . I think these are very good questions to ask, especially at this stage. So many of us just slide into caring or try and keep our loved one at home come what may.
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Hi SaraKate
Gosh, what you have asked will be different for almost all of us.
My husband was diagnosed post surgery and after he had sepsis in March last year.
Two years ago I was oblivious that there was anything wrong. Now, I realise that his symptoms had crept up on us probably over 3 or 4 years, but I just thought he was getting decidedly grumpy and his thinking had become lazy, it was easier to get me to fill forms, spell things, answer questions, etc.
If you read any of my earlier posts, I only joined last June just before my husband was diagnosed in July last year, you will read how devastated I have been, how I just want my husband back as he was such a short time ago.
Life isn’t easy. My husband has other health problems, and these have caused him to be totally urinary incontinent. I have to fit 5 day and night pads, he can’t fit them himself. He is aggressive and obsessive. He frequently shouts and swears at me if anything doesn’t suit him, and very little suits him. He wears me out. His dementia confuses me, because in front of others he appears fine. It always surprises me.... I watch him thinking is it me!
But, he is still my husband, we have been together for 45 years. I love him. I rarely see the man that made me smile and laugh. I don’t see the man that idolised me. But I know he is still in there. To date, apart from when he had sepsis, he has always known who I and the family are. That part of his brain is not affected. Whether that will change, who knows?
I recently had to stay in hospital and so my husband went into respite for two weeks. I was lost without him. I was on crutches.... I had no one to carry my cup of tea!! And he has yet to forgive me for, in his words, having him locked away in an asylum!
I need space which he doesn’t want to give me. He follows me round th house, it really irritates me as he makes me jump.
I find that total dependence on me very draining and hard.
I find it hard to not respond when he is aggressive.
But I still love him.
I don’t think he should go into care permanently until I just can’t cope anymore, if he didn’t know who I was or where he was, then it would be different.
He doesn’t want to go to day care I think because he is lost without me.
So, would I change anything? Apart from the obvious that dementia didn’t exist, no, I wouldn’t. I will only consider care or Carers when I can’t cope anymore. And when he doesn’t know who I am or where he is.
When that will be.... who knows?
Sending warm thoughts and love to you, B xx
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
All I can say in answer is that I wished I had known then what I know now. That doesn't necessarily mean that I would not have looked after my mother but I might have done it in a very different way.
When I was at work I always maintained that I was not going to look after my mother in her old age. But who else would (invisible brother)? So I took on her finances and I gradually took on all of her care, getting rid of the fraudsters and conmen, etc. It creeps up on you.
Then I got made redundant and as a result, we moved to another house to accommodate her, sold her house and I cared for her for about 8 years prior to the move and a further 6 after. At times she ran me ragged and I had a good old vent on this forum. At times I felt resentful that my life was being taken up in caring for someone who was not necessarily a nice person and super critical. At times I laughed and at times I was a screaming wreck. This was primarily caused (IMO) because I did not have a clue about how long this was going to go on for, not because our relationship had never been particularly close.
I had made a decision that she was going into full time care in August this year and had arrangements in place. But she died in February. Eleven months on from her sudden death (not from dementia) I can honestly say I am glad I did it - not because it was my duty or indeed because I felt that she appreciated it but because I have learned so much and I think I am a better person for it.
Thinking back, I would probably have opted for a care home earlier - but the care home where she had respite and where she went for day care was excellent and she looked forward to her visits there.
Research your options, make sure you make time for yourself and don't allow your care for someone to cut short your own life. And, of course, I am speaking about my mother, not my husband.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi @SaraKate and welcome to talking point and yes this is a good place to come to and just vent if you want to. I am looking after my 88 year old dad so it is different to looking after a husband but yes I do wish I had done things differently. I should have been a bit stronger and not have allowed my sibling to just blank me each time I spoke to him about dad. Perhaps if I had thrown a wobbler I may have had some help. I have a bit of help now but it was very late in coming. Perhaps I could have kept my job instead of just the carers allowance that I finally received (which was actually very hard to get)

I almost put dad in a care home when I reached breaking point early last year, my husband had three heart attacks in three months and that on top of looking after dad was just too much. I didn't put dad in a care home after all because I found that he had cancer and was terminal and it just seemed too mean. So here I am almost a year later still looking after dad who has advanced cancer and advancing dementia. Husband seems ok now so that is one thing to try not to worry about.

I don't regret my decisions because dad is still very lovely and still in his own home and quite happy so I feel I have done well by him but it was hard and there is an end in sight somewhere although I don't know how long he has left. I can't believe how quickly the months fly by when the days go so slowly but I think I have achieved my aim of keeping dad happy. He has forgotten that he is ill which does make things difficult at times. Dad has had alzheimers for about 7 years but is still early stage so not too bad at the moment.

I also hope I never have to do this again, in fact I don't know if I could do it again. I might just run for the hills if my husband starts showing signs.

Nobody has to take up the caring role, we are not duty bound to give up what could be years of our lives to caring for our loved ones. We are all different, some of us can, some of us can't but we can't know until we start and it is very easy to get overwhelmed with emotions of guilt.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
My husband is not diagnosed but clearly there is something wrong. He has tremor, and loses words, can't remember facts even a few minutes later, and gets anxious and 'fussy' about small matters. He's seeing a neurologist so we will soon know more, and it's much easier at home now he thinks that there might be something wrong and it's not just my fault. Reading these forums I wondered if you would tell me if you are glad that you are making/have made these tremendous sacrificies of your own lives to care for a loved one? I understand that this is a good place to vent, and to share distress and difficulties but I wanted to know if behind this there is a sense of willingness - or if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do? I hope I don't offend you by asking? Im looking ahead and wondering what I have to do/can't avoid/ want to do.
My OH's dementia progressed slowly until he had major surgery and then it advanced rapidly. After the surgery his children and myself, all said that I was not going to be his carer - I have been a carer several times already, and did not have it in me.
We were totally ignored.
I do not want to be his carer, but there is no one else.
I have been told by the GP that my only way out is for one of us to die - or for me to leave home ( which I cannot afford to do)

Most days a completely wretched, no, ALL days are wretched, and I am constantly plotting my escape... I console myself by looking for houses to rent - that I cannot afford anyway.

We have only been together 8 years, he has had dementia for about 5, we have no real history together.

You consider your options, hopefully you will have more than me. Remember much as you love or loved him - he is not the same person now. You might get dragged into caring for him our of love or duty, but think carefully about it.

Most of all, keep coming on here, keep asking for advice and keep your judgement clear, so that whatever decisions are made, are done with the right intent for both of you.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,116
0
south-east London
My husband is not diagnosed but clearly there is something wrong. He has tremor, and loses words, can't remember facts even a few minutes later, and gets anxious and 'fussy' about small matters. He's seeing a neurologist so we will soon know more, and it's much easier at home now he thinks that there might be something wrong and it's not just my fault. Reading these forums I wondered if you would tell me if you are glad that you are making/have made these tremendous sacrificies of your own lives to care for a loved one? I understand that this is a good place to vent, and to share distress and difficulties but I wanted to know if behind this there is a sense of willingness - or if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do? I hope I don't offend you by asking? Im looking ahead and wondering what I have to do/can't avoid/ want to do.

The thing to remember is that we are all in different circumstances as carers and the ones we care for never follow an identical path as dementia progresses.

Before my husband was diagnosed we had started to tread an unsure path in some ways due to my husband's strange, out-of-character behaviour - but fortunately, our relationship was strong.

Once the diagnosis was made everything changed for both of us in as far as we could now make sense of what had been happening - and that brought huge relief to both of us and a resolve to do the best we could.

I can honestly say that I never felt pushed into caring, it was something that happened naturally and willingly. I didn't see dementia as his problem or my problem - it was our problem, our life - and something we would face together.

It wasn't until four years after diagnosis that I even realised that I was technically a carer - it came as something of a shock to see myself listed as that on hospital paperwork.

My husband passed away last summer, six years after diagnosis, and we were really put through the mill during that time, particularly the final two years..My life became very different but I didn't really think of it as making sacrifices, for me it was more about adapting, finding ways around problems and developing strategies to make our lives liveable and as enjoyable as possible. I have few regrets and wouldn't do anything much differently a second time around - save for the handful of times I was snippy through sheer tiredness.

But that is just me talking from my particular circumstances. I had a lot going for me on my side - an incredibly supportive employer; the option of working from home; an adult son and daughter living at home, which in turn relieved any feelings of isolation I might have had; my own transport; reasonably good health; a variety of local groups to attend - not to mention a fantastic day centre which helped ease the stress in the final two years.

Not everybody has what I had and their outlook will be coloured differently, but for me, despite the downs (and we faced some very challenging times) there were many ups and good experiences along the way too.

I don't feel satisfaction looking back, so much as a feeling gratitude that my own situation allowed me to see things through to the end in the way that I did.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,005
0
72
Dundee
@LynneMcV has summed up more or less exactly how I feel. My husband was diagnosed in 2001 but his behaviour had been difficult for some time before that. In some ways the diagnosis was a relief. He died in July 2016 and until the week before his death he was at home with me. I had no family near me but I was lucky in terms of carer support. I didn't feel pushed into being a carer. I know, however, that circumstances are different for everyone.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,455
0
Kent
Quote @SaraKate
if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do?

My husband was diagnosed in 2005 after at least six years of challenges.

During this time I wondered if we were getting under each others` feet, both being retired and spending too much time together, if he was turning into a grumpy old man or if our marriage of 42 years was coming to an end.

We relocated in 2002 to live nearer our son, to a place we both loved and which we had visited regularly for 10 years. When we finally moved my husband said `This is the biggest mistake I have ever made.` He then proceeded to do everything possible to return to our previous home, at the same time mistakenly thinking he had left his Indian family in Manchester and blaming me for the trouble I had caused him.

It took three years to get a diagnosis and during that time and the years following diagnosis I was driven to distraction. It never occurred to me to abandon him and I just saw it as an extremely difficult time after many good years and tried my best to accommodate all the challenges, determined to keep him at home with me.

A psychotic incident was the turning point and he was prescribed medication which eventually affected his mobility. He could not remember he needed help and fell out of bed every night while I was sleeping the sleep of exhaustion. Although we still shared a bed, I never heard him because of my hearing loss. He was never left unattended, but at night, I slept and he fell.

We were both considered at risk and my son and I decided I would have to give in and accept residential care.

My husband was not `put in a home`. He went into residential care so I could have someone to share the caring because I could no longer meet his needs 24/7.

I always considered myself wife first and carer second. Caring was an extension of being a wife.

This Wednesday will be the 5th anniversary of his death and I still see myself as his wife.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
“if you had the chance all over again would you have arranged alternative care? Or involved more others? Or set down boundaries as to what you would do?” I have been thinking about this but it has never occurred to me to do otherwise than care for him as long as I am able . It is awful, painful and I do feel that I would like to escape at times. But this is the thing, I know that I can’t desert him in the hour of his need. Apart from anything else, things change all the time and it’s no good saying one thing, because circumstances alter cases, and if you box yourself into a promise of some sort, the guilt may be great if you have to break it. Keep an open mind if at all possible because this disease is willy and insidious, breaks the strongest and if I need to, then I shall make other arrangements. Also I find my strength waxes and wanes, my reaction to his illness affects how he behaves. As someone has said, we all approach the disease differently but nothing is “the right way”.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
When caring for my dad I always though that incontinence would be my line in the sand - but I carried on regardless!!

Dad lived on his own in a bungalow with lovely neighbours who looked out for him. Apart from one incident of wandering at 2am I felt he was fairly safe at home. I know he was often up at night but as I didn’t live with him I still got to sleep...mostly.

It was when he became too frail and confused to be left alone that I fought to get him a place in a carehome. He was there for about 3 months before he died and I know it was the best place for him at that stage.

It was a difficult journey and I often felt like walking away. I do wonder if I should have moved him in into residential care a little earlier than I did so he could have enjoyed some of the activities there and perhaps made some friends but things moved very quickly at the end with regards to his deterioration and I couldn’t have predicted that.

I did what I did through love first and foremost and although dad could be difficult at times he had always been there for me and my family so I couldn’t have left him when he needed me.
 

AliceA

Registered User
May 27, 2016
2,911
0
We are all different, SaraKate. I do not think sacrifice, it is just how it is.
I suppose much depends on the core relationship. We have been together for 63 years. We gave seen the best and the worst of each other, it is hard to see two separate lives, we are like the yin/yan symbol. Part of and sharing the same but opposing qualities.
I do not look too far ahead, there is no profit in it. Just dealing with everyday matters is enough.
For me planning ahead too much has not worked because there are too many changing factors beyond my control.
I do find joy in our relationship, I hope to care for as long as I am physically able.
My quirky sense of humour helps.
There is a thread 'going with the flow' about that is about finding the easiest way through this.
We had a 'hiccup this morning' now we are back on stream. So both sitting having a rest.
I know my own mood matters so much as this communicates more than words ever do.
I feed my positive mood.
I get exhausted, my age does not always help but age has advantages too. Lessening ambition, I do not have to prove myself to others.
Some of us on here have an inner life, not necessarily religious, I cultivate mine it gives me a strength.
I am grateful for so much in our lives together over the years. We are warm with a roof over our heads.
Other people mean well but they see things from their own perspective not yours. Learn to say No.
There are some plus factors too, I have learnt new skills found strengths I did not know I had.
It has been a steep learning curve.
So for me, I have simplified as much as I can. Put a few home improvements in place.
Learned that Love does not have to be returned, I have to love for two.
This takes me back to the beginning, so much depends on the relationship one had to start with.
I am not decrying the anguish, pain, frustration the need to rant.
Caring for a partner is very different from caring for anyone else, there are low times but high times too.
A sudden glimpse of what was. Once my husband winked at me and I was transported back in time.
Hold on to small treasured moments.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Oh @AliceA -that was just such a lovely expression! I do agree !
I have learnt to manage most of the situation because of love- I know I will be devastated when I lose my husband. We can still share the trivial and funny moments , the pets and the weather. The small things. And I am pleased I am here for him.
 

B72

Registered User
Jul 21, 2018
332
0
The thing to remember is that we are all in different circumstances as carers and the ones we care for never follow an identical path as dementia progresses.

Before my husband was diagnosed we had started to tread an unsure path in some ways due to my husband's strange, out-of-character behaviour - but fortunately, our relationship was strong.

Once the diagnosis was made everything changed for both of us in as far as we could now make sense of what had been happening - and that brought huge relief to both of us and a resolve to do the best we could.

I can honestly say that I never felt pushed into caring, it was something that happened naturally and willingly. I didn't see dementia as his problem or my problem - it was our problem, our life - and something we would face together.

It wasn't until four years after diagnosis that I even realised that I was technically a carer - it came as something of a shock to see myself listed as that on hospital paperwork.

My husband passed away last summer, six years after diagnosis, and we were really put through the mill during that time, particularly the final two years..My life became very different but I didn't really think of it as making sacrifices, for me it was more about adapting, finding ways around problems and developing strategies to make our lives liveable and as enjoyable as possible. I have few regrets and wouldn't do anything much differently a second time around - save for the handful of times I was snippy through sheer tiredness.

But that is just me talking from my particular circumstances. I had a lot going for me on my side - an incredibly supportive employer; the option of working from home; an adult son and daughter living at home, which in turn relieved any feelings of isolation I might have had; my own transport; reasonably good health; a variety of local groups to attend - not to mention a fantastic day centre which helped ease the stress in the final two years.

Not everybody has what I had and their outlook will be coloured differently, but for me, despite the downs (and we faced some very challenging times) there were many ups and good experiences along the way too.
@
I don't feel satisfaction looking back, so much as a feeling gratitude that my own situation allowed me to see things through to the end in the way that I did.
The thing to remember is that we are all in different circumstances as carers and the ones we care for never follow an identical path as dementia progresses.

Before my husband was diagnosed we had started to tread an unsure path in some ways due to my husband's strange, out-of-character behaviour - but fortunately, our relationship was strong.

Once the diagnosis was made everything changed for both of us in as far as we could now make sense of what had been happening - and that brought huge relief to both of us and a resolve to do the best we could.

I can honestly say that I never felt pushed into caring, it was something that happened naturally and willingly. I didn't see dementia as his problem or my problem - it was our problem, our life - and something we would face together.

It wasn't until four years after diagnosis that I even realised that I was technically a carer - it came as something of a shock to see myself listed as that on hospital paperwork.

My husband passed away last summer, six years after diagnosis, and we were really put through the mill during that time, particularly the final two years..My life became very different but I didn't really think of it as making sacrifices, for me it was more about adapting, finding ways around problems and developing strategies to make our lives liveable and as enjoyable as possible. I have few regrets and wouldn't do anything much differently a second time around - save for the handful of times I was snippy through sheer tiredness.

But that is just me talking from my particular circumstances. I had a lot going for me on my side - an incredibly supportive employer; the option of working from home; an adult son and daughter living at home, which in turn relieved any feelings of isolation I might have had; my own transport; reasonably good health; a variety of local groups to attend - not to mention a fantastic day centre which helped ease the stress in the final two years.

Not everybody has what I had and their outlook will be coloured differently, but for me, despite the downs (and we faced some very challenging times) there were many ups and good experiences along the way too.

I don't feel satisfaction looking back, so much as a feeling gratitude that my own situation allowed me to see things through to the end in the way that I did.
LynneMcV sums up my attitude completely. I don’t, and won’t have her level of support,. We’ve been married over 52 years, so I don’t work. It’s early days, no diagnosis yet, but I accept this will be it, probably, for the rest of my life. I miss my OH’s intelligent conversation and insights, but we still have flashes. I feel frustrated at this slow pace at doing things, but realise everything will deteriorate. We are lucky to have had a long and happy marriage. I intend to see it through as long as I can. When it’s impossible, well, then we’ll have to consider a Care home. I don’t feel resentful about the probable loss of quality time for me in old age, how can I? We’ve had many good years (although, obviously, difficult times too).
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
PS Sarahkate - you asked if we had the chance all over again would you have arranged alternative care? Or involved more others?
For me - I would have liked more and better knowledge sooner - and I feel it would be very beneficial to have others in my community - my town - that I could share with on a personal way - like a mentor - but TP helps there.
Otherwise I wouldn’t change my role - except to be better at it. :cool:
 

B72

Registered User
Jul 21, 2018
332
0
We are all different, SaraKate. I do not think sacrifice, it is just how it is.
I suppose much depends on the core relationship. We have been together for 63 years. We gave seen the best and the worst of each other, it is hard to see two separate lives, we are like the yin/yan symbol. Part of and sharing the same but opposing qualities.
I do not look too far ahead, there is no profit in it. Just dealing with everyday matters is enough.
For me planning ahead too much has not worked because there are too many changing factors beyond my control.
I do find joy in our relationship, I hope to care for as long as I am physically able.
My quirky sense of humour helps.
There is a thread 'going with the flow' about that is about finding the easiest way through this.
We had a 'hiccup this morning' now we are back on stream. So both sitting having a rest.
I know my own mood matters so much as this communicates more than words ever do.
I feed my positive mood.
I get exhausted, my age does not always help but age has advantages too. Lessening ambition, I do not have to prove myself to others.
Some of us on here have an inner life, not necessarily religious, I cultivate mine it gives me a strength.
I am grateful for so much in our lives together over the years. We are warm with a roof over our heads.
Other people mean well but they see things from their own perspective not yours. Learn to say No.
There are some plus factors too, I have learnt new skills found strengths I did not know I had.
It has been a steep learning curve.
So for me, I have simplified as much as I can. Put a few home improvements in place.
Learned that Love does not have to be returned, I have to love for two.
This takes me back to the beginning, so much depends on the relationship one had to start with.
I am not decrying the anguish, pain, frustration the need to rant.
Caring for a partner is very different from caring for anyone else, there are low times but high times too.
A sudden glimpse of what was. Once my husband winked at me and I was transported back in time.
Hold on to small treasured moments.
Totally agree with you too!
 

AliceA

Registered User
May 27, 2016
2,911
0
Oh @AliceA -that was just such a lovely expression! I do agree !
I have learnt to manage most of the situation because of love- I know I will be devastated when I lose my husband. We can still share the trivial and funny moments , the pets and the weather. The small things. And I am pleased I am here for him.

Xxx
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Agree with so much of the above. I regret the years of odd behaviour before getting a diagnosis of Alz. I was definitely tuning out of our marriage as I couldn’t fathom what was going on. The diagnosis gave me an explanation but not a solution.

Seven years on I can’t really see what I could have done differently. I wish it hadn’t happened but it has and I have to deal with changes as they arise.

Would I do it again? I would like to say no but then who would have stepped in?
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hi SaraKate
Gosh, what you have asked will be different for almost all of us.
My husband was diagnosed post surgery and after he had sepsis in March last year.
Two years ago I was oblivious that there was anything wrong. Now, I realise that his symptoms had crept up on us probably over 3 or 4 years, but I just thought he was getting decidedly grumpy and his thinking had become lazy, it was easier to get me to fill forms, spell things, answer questions, etc.
If you read any of my earlier posts, I only joined last June just before my husband was diagnosed in July last year, you will read how devastated I have been, how I just want my husband back as he was such a short time ago.
Life isn’t easy. My husband has other health problems, and these have caused him to be totally urinary incontinent. I have to fit 5 day and night pads, he can’t fit them himself. He is aggressive and obsessive. He frequently shouts and swears at me if anything doesn’t suit him, and very little suits him. He wears me out. His dementia confuses me, because in front of others he appears fine. It always surprises me.... I watch him thinking is it me!
But, he is still my husband, we have been together for 45 years. I love him. I rarely see the man that made me smile and laugh. I don’t see the man that idolised me. But I know he is still in there. To date, apart from when he had sepsis, he has always known who I and the family are. That part of his brain is not affected. Whether that will change, who knows?
I recently had to stay in hospital and so my husband went into respite for two weeks. I was lost without him. I was on crutches.... I had no one to carry my cup of tea!! And he has yet to forgive me for, in his words, having him locked away in an asylum!
I need space which he doesn’t want to give me. He follows me round th house, it really irritates me as he makes me jump.
I find that total dependence on me very draining and hard.
I find it hard to not respond when he is aggressive.
But I still love him.
I don’t think he should go into care permanently until I just can’t cope anymore, if he didn’t know who I was or where he was, then it would be different.
He doesn’t want to go to day care I think because he is lost without me.
So, would I change anything? Apart from the obvious that dementia didn’t exist, no, I wouldn’t. I will only consider care or Carers when I can’t cope anymore. And when he doesn’t know who I am or where he is.
When that will be.... who knows?
Sending warm thoughts and love to you, B xx
Daring B, what a beautiful post. Gxx
 

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