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 We are so lost. 
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post We are so lost.
Things have gotten worse with my mom and my dad and brother need help ASAP, well pretty much they needed help long ago but have been limping along for way too long.

My dad and I met with a lawyer who deals with elder care issues and she advised him on documents he needed to get together and such and referred him to another lawyer to deal with getting disability. The problem is that they can't apply for Medicaid until after mom gets into a facility but we're reluctant to do that and will be on a waiting list anyway. The one facility that my dad has checked into and likes would cost about $140k/ year. I just don't understand how/ why/ how people are supposed to afford any of this. It makes me so, so frustrated - people scream about not wanting "socialized" healthcare but they never think anything like this will happen to them. I just feel like we're screwed.

Half of my dad's assets can be taken for the care of my mother and they'll drain him as much as they can and only then will Medicaid help. Of course that doesn't include their home but things like his dental practice, any gifts (for my older brother's wedding and for my wedding, any help my parents gave us with college, etc) to us kids can be counted against him. The lawyer is working to see what can be done but I just don't know what we're supposed to do in the meantime. We need someone in the house with mom 24/7 now and I don't know where to look because we can't afford much at all. The economy has taken a huge toll on my dad's practice (and so has the fact that he's only been able to work 3 days/ week since mom went into the hospital in November 2009).

I'm sorry, I'm still reading the other threads under this topic but I really needed to vent too. It's all so, so frustrating. Meanwhile my mom is getting worse and worse. :(

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Aug 29, 2011 5:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: We are so lost.
I'm so sorry Jamie. Here are a couple of thoughts:
Can someone find an alternative place that may not be so expensive? I know that prices are much higher in and around big cities, and am wondering if perhaps looking in another town there may be a place that will be good but not so expensive.Ex. My dad was in a very nice place, that at its most expensive was about $5,700 a month. His LTC insurance only paid about $750 a month, but that's a lot better price than what you are describing.
Can you all limp along a little longer with some in-home help for a few hours that are the most critical for your mom?
Is it possible to have friends or relatives come in on a daily schedule to help?
Sending you all a big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 29, 2011 5:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: We are so lost.
My husband's SNF [skilled nursing facility] is 'only' $88K/year. You are right, it's quite impossible for anyone to continue to pay for. He will have to go on Medicaid in a couple of months. There is no other way.

There are less expensive options, like assisted living facilities and adult family homes but bear in mind that some do not accept Medicaid and some will not keep residents whose needs increase. There are exceptions but you need to determine their care limits before placement. Derek was briefly in a dementia unit in 2009 and they would not take him today because he is not mobile. When their residents are no longer independently mobile, at least per walker or w/c, they are transferred to the SNF.

I feel your pain. Believe me. Years of working, saving and staying out of debt did not prepare us for this.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 29, 2011 5:41 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: We are so lost.
Thanks Pat and Lynn. The place that we're looking at was recommended by my mom's neurologist and my dad likes it because it's fairly close to where they live now and the caregiver/ patient ratio is smaller. It seems like you pay for what you get, it's just the other places he's looked into were not near as good. I guess it's just so heartbreaking to think of her in a place where the individual attention might not be as good. It's heartbreaking either way, just feels like she doesn't belong because she's still so young but in reality she is not functioning well anymore at all. Puts on all her clothes inside out and backwards (how she manages to put jeans on backwards is quite a feat!), won't take a shower or brush her teeth reliably, is now having trouble holding a sandwich to eat, though she can it just takes a lot of time.

I had to take a shower with her when I was visiting and it clearly agitated her because she was doing a lot more movements with her hands and messing with her hair but she wasn't combative or unhappy about it. I just explained to her that she needed help just like I did when I had my knee surgery. Of course my younger brother can't/ won't/ shouldn't try to get in the shower with her so I had to do it while I was visiting. [Good news is that I did buy a wedding dress during the visit and took mom along so at least there was that].

I guess we need to try to find someone on the cheap to at least come into the house and help mom with the self-care things, it's just a matter of knowing where to look. Mom's neurologist recommended someone very highly but she is booked up right now. I have a small list of numbers to call but the biggest barrier right now is cost.

And the thing of it is that I feel like the whole system is designed for failure - our country was built on the basis that everyone would/ could work to take care of themselves but when something catastrophic happens like this you're just stuck. That's a whole 'nother vent though!

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Aug 29, 2011 6:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: We are so lost.
Oh Jamie, what a sad, frustrating situation! I feel your pain -- and your father's. Dealing with this kind of thing was as bad for me as dealing with Coy's dementia the first year.

How long was your mother in the hospital in 09? Maybe different states have different rules, but Coy had not been in a nursing home at all when he was approved for Medicaid. Instead eligibility was based on a 1994 hospital stay of more than 30 days, that had nothing to do with his dementia. (This was in 2003.) That meant we could keep only half of the assets we had in 1994. I didn't even remember what cars we owned in 1994, let alone what they were worth! (A car-crazy grandson remembered and looked that up for me.) We had to spend down all of Coy's life insurance, and about 75% of my pension, at an early-withdrawal penalty, because I could only keep half of what I had in 1994, and most of the value had been added since then. If we had been merely living together and not married, I would now be facing retirement with a much bigger nest egg. Politicians were then bragging about how "family values" were so important to them. Yeah, right. So valuable there is a penalty for being married if your spouse gets a devastating disease.

The house is exempt as an asset -- but the state can demand to be repaid from the estate when Coy dies. Welfare recipients aren't expected to pay back what they receive, but Medicaid recipients are, if there is anything left for the state to grab.

In spite of the pain of qualifying for Medicaid, I think it had to be done. I was mainly trying to position us for the eventuality of long term placement (which looked immanent at the time, but hasn't been necessary yet), but even without nursing home costs, I don't know how we'd manage the $40,000 drugs we used last year.

Does your state/county have any other programs that your mother might qualify for? Since you are hoping to keep her home at present, are there any programs aimed at keeping people at home instead of nursing homes? Have you talked to someone in your county's social services?

This is sooooo hard. If the caregivers aren't reeling enough from the devastating pain of the illness we also have to figure out how to survive paying for it! (I guess I needed to vent, too.)

Sincere best wishes to you.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 29, 2011 7:01 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: We are so lost.
Jamie,

How many places did the neurologist recommend? If just the one you've seen, you should probably look for more. Have you checked Medicare.gov? They have ALFs, SNFs and others identified and a rating system that is based on inspections done on a regular basis. The place my mom is in just went through inspections last month. Check out a few other places. A place that regularly works with Medicaid is likely to take your Mom and wait for the Medicaid portion of the payment until it goes through, though they do need to see your finances to be sure your Mom is elegible.
Was your Mom working before Lewy started up? If so, you may be able to file for Social Security Disability, which should be close to the SS payment that will start up when she is 66. If she also had long term disability through work, you can check into that. That should help with expenses.
I know it is hard. I want the very best for my Mom, too and I believe she has a right to it - she's earned it. But please understand that a lot of people struggle as they get down into the area of eligibility for Medicaid. Mom and I lived together to stretch her savings out for as long as we could. It wasn't her fault that she wasn't well off. My father died when she was 50 and left with 2 kids in college and 2 in junior high. Few breadwinners had insurance at that time. What savings she had accumulated was lost in an investment by her second husband, who died leaving her nothing 5 years after they married. Personally, I think my Mom deserves to be treated like a queen. I'm sure you feel the same way about your Mom. (BTW, Mom lived in my home, she didn't have a home of her own that could be exempt. When she got down to the required level of $3000 that was all she had - no jewelry, no car, no anything.)
The reality is that there are only so many Medicaid dollars to go around. So, the attempt is to apportion it to those with the greatest need. Your family may not be able to live at the level it had because of these new expenses, but are you really that poor? Are your parents living in their childrens' homes? What about cars? What about IRAs or annuities? The people on Medicaid don't usually have IRAs or annuities. They have reached the point at which they really have nothing. As a matter of fact, I went deeply into debt trying to protect the last of my mother's savings, as a lot of her sense of self worth was tied up in them.
I feel for you. But I also wonder how realistic you are being. You said your Dad has a dental practice. I understand the standard of living in which you probably grew up. My Dad was a consulting engineer of some repute in the 1960s. We weren't rich, but we were very comfortable. But things happen. My Dad died. Yet the mortgage and all the bills had to be paid (plus a huge hospital bill). In the midst of losing her love, my Mom was likely to lose everything else except the daughters she had to care for. My point is that things come up. You-know-what happens. You get through it. You do what you have to in order to keep things going, even if not as gently as they had before.
If your Dad has to make sacrifices in order to cover the care he believes your Mom deserves, I have no doubt that he will make them and feel good about doing it. You are young. This may be the first trauma you have had to deal with as an adult. It is normal to want everything to be as it was. I was about your age when my Mom sold the home I grew up in. I was devastated and was very cruel to Mom. But it had to be done. There are things that will have to be done on your parents' side now and you will either participate or observe and it will tear at you. But you'll make it through. So will your family. And you might even gain some wisdom you hadn't counted on.
Right now, everything looks bad to you. But, it could be far worse. Your Mom is receiving treatment and care. Your family has resources. Maybe you'll have to release some of them to pay for your Mom's needs, but what do you suppose your parents were accumulating them for in the first place? For the expenses that happen in life that come as surprises or shocks.
Do yourself a favor. Imagine how much worse it could be and jot a few of the things that could have been down. Then, start thinking of the blessings that are preventing the worst from happening. Then, continue to try to find blessings - good days - good minutes - even the seconds of a fleeting smile. This disease teaches us to take what good times we can and be grateful for them. Looking at this negatively, though unavoidable sometimes, serves no one. Looking for the good things (and they are there if you lower your standard a bit) brings joy and comfort.
I understand your frustration and despair only too well. But you will come through this. Do it well, for your own sake and your mother's.

Sending a hug.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Aug 29, 2011 8:23 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: We are so lost.
Kate, thanks for the reminder to remember the good things. I definitely take my moments of frustration/ sadness/ etc, deal with them, and move on to the next thing (something I learned well from my dad). The thing is that even though it's an easy assumption that my parents would have been financially well-off because of my dad's profession, unfortunately, that hasn't been the case. We certainly didn't grow up with much and everything they have achieved have been a struggle. It's a long story but basically they hadn't been able to even start saving for retirement until a few years ago (though I absolutely acknowledge many people are never even able to think of saving at all) and the economy has taken quite a toll on the area and my dad's practice has been no exception. He hasn't been paying himself for nearly a year just so that he is able to continue paying his employees so he's very worried that he'll have to sell his practice or something drastic.

My dad is working on getting everything together to file for disability benefits so we'll see how everything pans out. I think my dad is just worried about the future - for both of them. He's just overwhelmed right now with all the decisions that need to be made and keeps saying that he'll figure everything out, I just want to help in some way, somehow.

Jeanne, my mom was in the hospital for about 5 weeks but I don't think they specifically require any length of hospital stay to determine disability in Maryland. It looks like they'd look at medical records and maybe do an interview with my mom or parents so I'm pretty certain that she'd qualify. Right now I just want to try to find some help for my dad and brother so that when my brother does move out they're better prepared (I've offered for him to come live with my fiance and I when we move to the area in October).

I think I feel more frustrated because I'm always trying to find answers and "fix" things and that's just not possible. I know that's the little kid way of dealing with things but otherwise I'm left feeling like I'm not doing enough to help them.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Aug 29, 2011 8:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: We are so lost.
Jamie - are you anywhere near Easton, MD? That's where the nice ALF was that my dad was in. It is pretty affordable compared to a lot of places. If you are in the Balt. - Wash. area places there are much more expensive. I'd recommend looking in the smaller towns, even if it is a longer drive. And the waiting lists tend to not be as bad in the smaller communities either.
Of the MD ALFs I'm aware of, I don't know of any that will take Medicaid patients. There may be some somewhere on the Western Shore. The place where my dad was and some others I investigated will only bill the family and if/how the family gets reimbursed by any entity is up to the family. They won't deal with any gov't agencies or insurance co. to get paid.
Most of the SNFs in MD that I know of DO take Medicaid patients. There are small homes that take care of people and they charge much less. There is a small home care situation I know of that is very nice and I think charges around $1,500 a month. You can send me a PM if you want and I can give you more specific info. about places in MD that I know about. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 29, 2011 9:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: We are so lost.
Jamie, I wasn't thinking of disability when I mentioned the hospital stay. That is what counted toward Medicaid, instead of one month in a nursing home.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 29, 2011 9:33 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: We are so lost.
Wow, Jamie. Your Dad is pretty special. He's probably right to avoid selling his practice. With the economy like it is, he probably wouldn't get what he should. To keep paying his staff and not himself is amazing, especially with what is happening with your Mom.

I'm not sure, but I think Medicaid exempts those things necessary for your livelihood, too. So I don't think your Dad needs to worry about his office and equipment.

Maryland and Minnesota probably have some differences, but one thing I'd try is to go to Social Services at your county. You may already be dealing with them on Medicaid, but ask them about other aid, too. Was your Mom or Dad in the military service? If so, you might get help there, too. I have learned to start at the lowest level of government offices and get them, if possible, to represent you on other levels.

We have fairly good Social Service here, so I got a lot of help. I don't know what you'll find there, but give it a try. The worst they can do is say no. I will tell you that Mom's Medicaid application took 6 months to go through and it was a pretty sure thing from the start. There was a delay of about a month because I had to get a VA application in (Dad was a WW2 vet. so Mom may be eligible for benefits, which will just go to reimburse Medicaid). The Medicaid benefit covers almost everything. Mom is responsible for keeping up her Medicare part B and D, as well as almost all of her Social Security check. She gets $82.00 spending money a month, which we mostly use for things like shampoo, body lotion and things like that. You can probably expect about the same, only in place of the SS check, it will be the Disability check. As Mom's a widow, I don't know much about how the spouse's assets and expenses figure in.

I do encourage you, though, to look at Medicare.gov, even though your Mom isn't at the standard Medicare age. There is information about the various facilities all over the US, but there is also a lot of information about where and how to get help. It has been a standard reference for me. Medicare does a lot more than just pay medical bills.

Your Dad is very generous, paying his staff instead of himself. But he should check into how Medicaid will see this. He may need to start paying himself something, even if it is a token. What your Dad is doing is unusual and government agencies don't handle "unusual" very well. Probably best if he runs this past your attorney.

Sorry about making assumptions based on your Dad's profession. Be a bit careful, because a govt agency might make the same assumptions. Though your Dad's practice shouldn't (at least ethically and in my opinion) be taken into account, there may be some questions about his business accounts and how and why he hasn't been paying himself.

Try to break yourself of wanting to fix everything. From one life-long fixer to a younger one, you can't fix everything and by trying, you deprive the "fixee" of the chance to fix his/her own problems. It's also the fastest road to depression that I know of. You can't fix Lewy. But you can fix how you deal with it. That doesn't mean being a full-time cheerleader. You have to let yourself feel things. But a little bit of Pollyana won't hurt and might help. Look for those moments of joy, happiness or just contentment. And point them out to each other. My sisters and I have the nightly "Mom Report" when whichever of us was with Mom that day tells the others about how she is doing and about one positive thing they saw. It does help.

Best wishes.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Aug 29, 2011 11:33 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: We are so lost.
Thanks, everyone, again, I so appreciate the support. None of us have looked into Medicare at all since my mom's too young but it sounds like it could be a helpful resource nonetheless.

That's the frustrating part - our whole situation is unusual and I know the government doesn't do well with that necessarily. I believe my dad has been paying himself the bare minimum since the start of this year on the advice of his accountant. I do understand since there need to be rules and standards but it does make you feel like you're being left high and dry sometimes. All we can do is take things day by day and see what happens; most of all I want the best care for my mom (as I'm sure we all do for our loved ones).

I think this whole process is definitely defeating my natural urge to fix everything - there's no way to fix any of this for everyone (my fiance keeps gently reminding me, ha). I know that this is mostly my dad's battle (at least the financial aspect) but I try to play as supportive a role as I can. It's just gut-wrenching to watch and know that I'm more or less helpless; I suppose I should appreciate the small things I can do and take pride in the small victories (I was the only one who could get my mom to get in the shower, even if I had to get in there with her, she had been resisting my dad and brother's efforts). And I think I'll feel a lot better when my fiance and I move in a few months, at least I'll be able to see my mom and hug her whenever I want. Sometimes maybe that makes a difference, just her knowing that I'm there, and even if she doesn't know at least I know I'll be doing my best.

I like the idea of the "Mom report" - especially having to provide something positive. My dad used to do that but I think he's just gotten much more overwhelmed as of late. My positive thing lately - trying to help my little brother by having him potentially move in with my fiance and I. I've been concerned for his mental health and just inability to have his own life lately so I think it would be good for him.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Tue Aug 30, 2011 9:56 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: We are so lost.
I'm glad you and your dad went to see an attorney. Maybe it also makes sense to see a financial planner. Shockingly, for some couples it works out better financially if they divorce.

And you might consider getting long-term care insurance for yourself. When I realized the cost of my dad's care, I got LTC insurance for myself.


Tue Aug 30, 2011 10:10 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: We are so lost.
Jamie, Medicaid does not require Medicare, and is not based on age. My 50 yo disabled prother is on Medicaid. I'm surprised the lawyer did not suggest looking into this. As Kate said, the county Social Services should be an excellent agency for knowing what programs are available in this situation.

Good luck!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Aug 30, 2011 10:26 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: We are so lost.
Jamie, Robin is right. Learn from this experience and get your own Long Term Care insurance - your fiance, too. Be careful about what policy you get, though, and be sure the benefit is set to keep up with inflation.

This is something I keep reminding my nieces and nephews about. The earlier you get LTC insurance, and life insurance for that matter, the lower the premium. And you never know when some medical condition might affect you. Once that happens, you may even have some trouble getting insurance of any kind. One thing I did with both LTC and life insurance was to buy policies outside of the insurance my employer provides. If you leave that employer or if that employer leaves you (both are possibilities even if you are the perfect employee) will you be able to keep those policies the employer provides? My experience has been no - not at an affordable price.

And one other thing I've learned. Don't deplete your own resources to care for your Mom. We fixers tend to do that and go into debt because of it. I don't imagine your Mom would want that. I'm sure you want to fix things as much as possible for your brother, too. But you also have a fiance to think of. Be sure your brother understands that.

You and your brother are having to face this situation so early in your lives. At your age, I was doing the same with grandparents. It isn't the same, though. I had Mom for a buffer. Maybe that's why I feel such a need to make things better for her. Don't forget to be young - to find things in tune with your age to enjoy. And let your fiance help you with that. His job is now to be sure you don't age prematurely.

Truth be told, my nieces and nephews don't see their grandma much these days. I understand. It is as hard on them as it once was for me to visit my grandma. You're in the tough spot because of it being your Mom, not your Grandma. You have no choice but to show up. Avoid thinking you have to be the strong one (another thing we fixers do). Let yourself feel what you need to. It's important.

Stay healthy.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Aug 30, 2011 1:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: We are so lost.
I'm looking into LTC insurance too for my husband and me. I'd hate for either of us to deplete our investments if/when either of us needs LTC. A combo of saving and LTC ins. is necessary to insure our future security if one or both become seriously disabled. And, if you plan to leave money to kids/grandchildren, setting up financial arrangements now, like trusts, is really important. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 30, 2011 4:22 pm
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