Dementia and Finger Painting Go Together

Still home on medical leave and although my time off was brought on by a surgery and hospital stay, I am happy to be home during the day and catch up with my life which under normal circumstances never would have happened. Normal life has a way of doing that.

Gma_mom_1930 While being home, I’ve noticed more and more that Mom is a different person every day. Yesterday she was fascinated with the snaps on her nightgown, keeping her busy for hours. This morning it was taking a spoon
and scraping dried ice cream from her night before that I forgot to take out of her room. Later who knows what
little thing that might catch her eye and mind. A few nights ago I went into the kitchen to prepare dinner and
when I went to check on her she had a large paper towel on her little table. she had poured water on it and proceeded to finger paint with her Desitin. She looked like an over grown child having a good old time finger painting in her own little world. I guess people with dementia find fun in the little things.

I’ve bought her crayons and a coloring book which she doesn’t seem to have any interest in. Cardine sits
and colors and Mom just sits there and watches her do it. Cardine is so good with her, she understands how her mind works. I’m not there yet but I am trying. Before I brought Cardine on board, Mom used to love to use her markers to mark all of her clothing and sheets. I finally had to take them away as she was making a big mess. She had a pair of small scissors which she would sometimes cut her blankets, sheets and clothing. Still can’t figure out why she would want to do that, but in her head it made perfect sense. Of course, I took away the scissors!

Bottom line is, that you can’t trust them with mostly anything, the simplest of things, unless they are being monitored. You see an object in one way but they see it quite differently and you never know what creative ways they will use it.

Bottom line is that this disease of dementia is nasty, no matter which way you look at it.

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My Demented Mother has Turned into a 2 Year Old

mom_beach3  mom_beach2  mom_beach1

It’s summer time, I’m home recouperating from a recent surgery in the hospital which is giving me a lot of time for reflection. The photos above have always been favorites of mine, I guess because it shows Mom as a young blonde haired girl with a world of possibilities ahead of her. To look at these images, there are no signs of OCD, no signs of depression and no signs that there was a troubled life waiting for her in adulthood. My guess is, that these photos were taken at Coney Island Beach.

Since I’ve been home during work hours, I’ve noticed that Mom has really been declining. She has good days and bad days and you never know what you will get. It could be good one minute and 5 minutes later it could turn. For instance, this morning, Cardine was trying to give her medication and she would push them out of her mouth with her tongue. What is that…it’s 2 year old behavior. When we kept telling her to take the medication she stands up and tells Cardine that she will smash her face. I’m having a really hard time understanding this behavior from an otherwise very sweet woman. Cardine handles it very well as she is trained to do so. I, on the other hand have a very hard time watching my mother behave like this.

In the past 2 weeks, she’s not been eating well. She plays with her food and then eventually just pushes it away. When you try to feed her, she won’t take it. I called the doctor to ask for advice on what to do. They took 3 days to call back and I still don’t have any good answer as to what to do. I actually hung up a little annoyed after to talking to the nurse practitioner, not the doctor. Meanwhile, we’ve been giving her Ensure when she will take it, offering her meals and happy with what she does eat. Let’s see where this goes.

So, I know that dementia is a one way road…there is no cure. I know we are closer to the void and I am not sure where we go from there. My demented mother is sinking deeper into her disease as every day passes and there is nothing that I can do to stop it. Even knowing all of that, my mind still can’t help thinking about what more I can be doing to make it better. I bless Cardine’s patience everyday of the week!

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Mom’s Parents, My grandparents…we miss them!

GG_20s     GG_Lil_Ele_44  GG_older

 

It’s been 35 years since Mom’s parents passed away…my grandparents. They were large in my life and I can see they were also large in Mom’s life as well.

Mom came from a stable family with a sister Lillian and 2 parents who were happily married for more years than I can remember. I spent most of my younger life at their house and loved every minute of it.

Mom’s father suffered with Dementia with the final stages in a wheelchair, with complete void in his eyes, In my heart, I know that’s where my mother is going as I can see the similar progression every day. There is nothing that can stop it, even with the modern technologies that her father didn’t have access to at that time. Once diagnosed, it’s inevitable, like a train staring you in the eye as it comes down the track. Nothing will stop it.

Lillian, Mom’s mother was a shy and private woman with translucent blue eyes like the skies above. When she looked at you, you knew exactly if she was angry or happy with you as she would get those frown lines on her forehead, with the smaller ice blue cornea and very small pupils, her eyes told us the temperature of the situation. She loved to bake and she did it well. She made the best cakes, cupcakes and chocolate chip cookies ever. She didn’t go out to socialize but people did come to the house occasionally to visit. Looking back, she appeared very reclusive, so I know that I come by that trait quite honestly. My grandfather Bruno was very social and the adult man in my life. He loved to be in the basement in his workshop to make toys and furniture. He loved to tinker with wood and make his ideas come to life in what he built. He loved children…They were the traditional old-fashioned parents and grandparents and were the stabilizing force in my life. I am grateful for their presence in my life.

Above are a few photos of Mom’s parents…my grandparents!

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Mother’s Day, Dementia and Life Lessons

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It was Mother’s Day a few weeks ago and I have found myself doing a lot of reminiscing and soul searching since then. Life with my mother wasn’t always an easy one and I wasn’t always an easy kid to live with either. Mom was burdened with her OCD disorder which in itself was a total life disruption for a kid. It made daily life a struggle for the both of us. There was nothing normal about our lifestyle and if you were the sort of person who craved a close family life similar to the all American Cleavers, it was a daily challenge.

I was a tomboy for as long as I could remember as a kid. As I got close to 12 years old, I also became quite rebellious having seen how my friend’s families were living and interacting at home. It created a lifelong yearning for the large and close knit family, which I am sure is why I love the Walton’s tv series so much. I’ve seen every episode about a million times and it doesn’t look like I will give it up any time soon. Makes me feel as if I am home when I watch shows like the Walton’s and Little House on the Prairie. Probably not realistic, but there you have it. It works for me to project myself into those families.

With all that said, I’ve been reflecting about the years of my life living with my mother, the years raising my children and how, even though I was acutely aware of my mother’s insufficiencies as a parent when I was growing up, I seemed to have acquired a complete lack of knowledge on how to relate to children. Under the circumstances, it was no big surprise. I swore I would never be like her, and I am very much my own person but having been brought up in that atmosphere, there’s no way you can come out without bringing some baggage along with you. I may not be carrying the heavy weight of the OCD affliction, thank goodness, but there’s something there, something that I can’t put my finger on, something that prevents me from moving forward in life.

I was clearly a product of my earlier environment. I can look back and see that now and although I wish that I could have a redo, I know that there are no “command z’s” in life. There are no redos…there are just the memories of yesterday, today and all the tomorrows ahead, carrying forward what you have learned from this life lesson…and it is a lesson. Everything that we go through in life, happy or sad is a lesson to be learned. Hopefully my mother and myself have worked through what we are here to learn from one another. Maybe dementia was part of that lesson and maybe me being her caretaker was all in the universal plan.

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Mom’s Dementia, Time To Think About a New Approach to Her Dementia Care

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It’s been a very long week in our house. I am feeling that Mom has downward spiraled to another stage of this horrid disease. Her dementia care keeps needing updates without warning. The dementia stages are mind boggling if you are not ready for them. She’s been trying to leave the house more often in the day. There was a time, where she used to only try to leave when sun-downing at the end of the day. Now she is starting her dash to the door at a moment’s notice, at any time of the day, which can be set off by just asking her to wash her hair or take a bath. Somehow I can hardly picture her dashing to anywhere since she shuffles and walks at the speed of lava. A few times, poor Cardine, her home aide, had to text me to call the house so that I could talk her off the ledge. She would be so determined to leave the house…go look for a job, look for an apartment, go to find her mother, just whatever came into her head.

It’s becoming a dilemma. Thankfully, we are due to go to the doctor this Wednesday for her progress checkup, so this is something we can discuss at this visit. Having said that, I am already stressing about getting her to cooperate in getting dressed and out the door. Hopefully I can put on the Pavarotti Cd which will make her calmer and more cooperative. What I suppose will happen, is that the doctor will up one of her meds, but at the same time, I don’t want her to be sleeping all day long either. She’s finally sleeping at night so I don’t want her days and nights mixed up. Plus she needs to have her brain engaged with something that makes her happy. It’s the only way to slow down her progression of this nasty disease.

mom_doc_july14Another issue we’ve been having is that she will almost be falling out of the bed by morning. She leans to one side, never the other and by the time morning comes, her head is on her night table, not a good thing. It’s just too strange. I’ve tried putting her in the middle of her bed at night but she is still hanging off by morning. Might be time to get a bed rail, which she will be none too pleased with…another daily challenge I see coming. We shall see.

Photos Above: (1) Mom on the left and Theresa my mother-in-law on the right. (2) Mom way back when she was working, living in San Diego, sitting in front her her typewriter, something that she loved. The good ole’ days…before our parents were boomeranging. Below (3) Mom at the doctor’s office.

Theresa, my mother in-law (pictured above) went on to be called Oma by just about everyone, including me and my Mom. She is still with us, happy, healthy with the exceptions of a few age related illnesses, but she’s got her head thank goodness. She presently lives with her daughter in CT. and is another Boomerang Parent. I wish that my own Mom was that lucky!

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Easter Sunday, Dementia, Mom and Memories of Her Sister Lillian

mom-sister_1929mom-sister2_1942It’s Easter Sunday, the sun is out, temps a bit cool, but it’s a happy, positive and upbeat day! The house is quiet and peaceful, just the way I like it and Mom started her day, on a bad note. She apparently got up in the middle of the night after having a little accident and took some of her night clothes off…so she woke up a little wet and cold. No matter, I got the situation under control and we were off to a better start. Got her breakfast, the Sunday newspaper and we sat together reading and eating. You never know what to expect with dementia or Alzheimer’s disease.

Photos: (1) Mom and Lillian as young ladies, (2) Lillian and Mom considerably younger, (3) Below, Mom and Lillian again, very young, probably 1929.

This afternoon, Mom is wandering around the house appearing to have a good ole’ day and I am sitting here thinking about Lillian, her big sister. Mom spends a lot of time talking about her older sister who she worshiped, as they were very close as they were growing up. Lillian passed away very early on of Leukemia, leaving 4 small children and a husband. They lived on the other side of the United States in the state of Washington, so we didn’t get to see her before she left us. Back then it was a big deal to fly across the country, especially for my grandparents who never ate out, let alone get on a plane to fly cross-country. I know that my grandmother had always felt somewhat guilty for Lillian’s Leukemia, even though she had absolutely nothing to do with it. Never-the-less, she couldn’t shake that feeling.

Lillian was a kind and gentle woman who was not only very intelligent but was lucky enough to have gone to college as well. She had always wanted to be a mother and was blessed with 4 beautiful children, Michael, David, Maggie and Mom-Lil_brookynSam, my cousins. I don’t have any siblings, so these first cousins are close to my heart. Matter of fact, there was a time that I almost became a part of their clan when Lillian and Bob wanted me to permanently come live with them when my mother’s OCD was out of control. Mom actually never wanted to be married with kids as Lillian had. She had only wanted a career in Manhattan which she had accomplished, it was her dream. I was really only holding her back when I think about it now…but she was a trooper. I never actually knew that fact as a child, so she hid it well. I’ve always wondered how my life would have been different if that had happened? I suspect, I would have been more educated, had more people skills, have made better choices in my life and would have had a male role model in Uncle Bob not to mention a very present mother figure. But that’s all hindsight now…we only have the here and now. Everything happens for a reason.

As a child, I remember Lillian and her family coming to visit my grandparent’s house, which is where I was most of the time while growing up. It wasn’t a big house but we always found room for the McCracken clan when they came to visit. To my delight, we kids would camp out on the floor on a big quilt in the living room. Aunt Lillian would come in and read to us…I thought it was amazing. Nobody had ever read to me when I was a kid…just Aunt Lillian, in her very soft, expressive and compassionate voice. You couldn’t help but love her. She was living her purpose, on her life’s course and obviously was very happy doing what she loved to do. And her kids loved her so much…they were lucky to have her and I believe they knew it. To me, they seemed to have a great life, great parents, brothers and sister…what could be better? Who was to know how things would change so drastically in the future with the passing of their Mom. It would be a life changer for their family.

From what I can remember, Lillian took after her father, my grandfather, who by the way, had dementia in his later years. She seemed to have more of him than my mother did actually, but that’s only my personal observations and opinion. I often wonder, had she of lived, would she be in the middle of this dementia curse as my mother is? We will never know. We only have the wonderful memories of Lillian and although Leukemia took her, she was spared the torture of dementia.

When I had originally written this post a year ago, I didn’t know that my mother with dementia would be gone by now. I thought for sure that I could get her to 90 years old…a milestone for our family, but it was not to be. Out of left field, she was diagnosed with Leukemia of all things, like her sister. As if having dementia and Parkinson’s wasn’t enough…she developed Leukemia. She was gone less than 2 months later. What are the chances that sisters would both have Leukemia? Hematologist told me that they both were probably exposed to something as children. Could my grandmother have known something, or suspected something, therefore feeling guilty all those years? I guess that I will never know the answer. She’s with her sister Lillian now, running around with the angels…waiting to welcome us someday.

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What Am I Trying to Say? Dementia thoughts…It’s Been a Week…

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Mom and her father, also with dementia.

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This week has been an unusual week for Mom. Not sure why, but we all know that every day is a new day with dementia patients. Who knows where these things come from but they happen and we deal with them as they unfold. It started out with the usual bath and hair wash on Monday and that was a good thing…as she needed it after the weekend. Cardine works her magic and manages to get her to cooperate. Then Tuesday came…..like a bad dream. Seemed okay in the morning, but then again she can fool us all when she has a mind to. Things can turn on a dime….

Once a month, the Visiting Nurse Service comes to give her a vitamin B12 shot due to a deficiency. So, this day, the nurse shows up and walks into Mom giving poor Cardine a run for her money. Apparently since I left in the morning, Mom has been giving Cardine a hard time. All morning she has been trying to leave and go to find her mother. We’re familiar with this but not necessarily at the start of a day. It usually happens when she is sundowning….later in the day. By the time the Visiting Nurse arrived at noon, Cardine was nervous and worn out, not to mention stressed….let’s not leave that out. At that point after the nurse witnessed what was happening, she called me at work. She told me that she was trying to leave the house and being very aggressive which was unusual. She thought I was still a child and that it was a bad situation. She thought perhaps I could have some influence on Mom if I spoke with her. They put her on the phone and I talked her off the ledge and stayed on the phone while her B12 shot was given and everything seemed to be all right. Afterwards, she took a nap and woke up normal and back to her old self. Thank goodness for small miracles.

She had another day of looking for her mother but it wasn’t as intense as on Tuesday. I was grateful for that. On Saturday, after I came home from my errands and appointments, I found that she had been working with her papers all day and was intensely writing on a greeting card seeming to be totally engrossed in what she was doing. I didn’t say anything because it was a good thing. At dinnertime when I came in to sit with her, I noticed a greeting card on the table next to me. While I was eating, I opened it out of curiosity. It is shown above. It says:

Dear L

Aas of linuse to g you anothew omng om thee tho rourte. up….to das sull–––keel thirn is turning imme my This is getting me ne me nousre,, Can’t rain the street!!! Don’t P got to gstap the misc….the lc s to N D. Dr t lakin I can’t s as of any thing any molbre. So long, well uille will well stand. Will I’pp.

Totally took me off guard. I mean, I know that she can’t speak correctly but on the other hand, I know that she knows what she wants to say. She just can’t get it out of her mouth. I didn’t know about how she would write it. This was an eye opener for me….a reality check. It means that although she knows what she wants to say, she cannot say it, or write it. How frustrating that must be for her. Knowing exactly what’s on your mind but trying to say it while seeing the blank look on your audience. It has GOT to be frustrating. She had always been a very smart and articulate person, reading, writing poems, working on her vocabulary throughout her whole life, doing crosswords, and hard ones at that. Now, she can’t express herself in any way. Unless you can guess at what she wants to say, there is no way you can understand what she is trying to say.

This greeting card, which was originally from me to her back in 2012, turned into a reality check for me. Can’t help but wonder, what she was trying to tell me. We will never know.

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Dinner For 2 Please, Dementia Patients And Social Interaction

 

picnic

There was a time when Mom would always sit at the kitchen table with the family and eat meals. That’s what the old timers did and families today still do it..thank goodness. Since she’s been at my house she’s never sat down at our kitchen table to eat dinner with the rest of us, except once when my son Shad came to visit. Not sitting at the table was mostly an OCD thing, but over the years, with the dementia setting in, she has forgotten about the OCD, but out of habit, still wouldn’t sit at the table. So, with that, she would opt to have dinner in her room and I, of course, humored her and served her dinner on a table in her room, which became the norm. If that’s what made her feel comfortable, I would of course, do that. I continued to eat in the kitchen, usually multi tasking while eating because there is not much of a window at night after the work day to get things done. Crazy way to live but that’s today’s world. 

Photos: Above (1) Mom, Eleanor Van Meter’s family, mother, father, sister, aunts and uncle out on a picnic, pre 1949. Below: (2) Mom after dinner on her 86th birthday…going to bed looking content, happy and tired.

Birthday 86

After Cardine, Mom’s home health aide started with us, I noticed that they would do things together in her room, such as eating lunch together, coloring or playing games. I also have noticed that Mom has directly responded to that by being more alert and in touch with reality. Cardine told me that Mom wouldn’t finish her lunch until she ate her lunch also. Mom would always leave some food on her plate saying it was for Cardine. I guess that she was feeling badly eating in front of Cardine, so she would take that as a hint to heat up her own lunch…sure enough, Mom would finish her lunch. I don’t know whether it is a “polite” thing or a “being in company” thing, but it seems obvious to me that she does better when eating in company with social interaction. As a matter of fact, looking back, she will never take the last of anything….even if it is the last chocolate chip cookie…..now that is self control…or perhaps a result of growing up in the depression years.

As a kid, she would always eat dinner at the table with her sister Lillian and her parents. When I came along, I would always sit at the table with my grandparents as well…seemed to be a family thing that she somehow lost along the way. Now, when I come home from work, I settle in and fix both of our dinner plates and I go sit in her room and eat with her. She eats all of the dinner on her plate happily, we have some conversation and we watch a tv show, even though she really doesn’t understand what is going on with the show, it doesn’t matter…it’s interaction and stimulation. She seems more alert and ready for her night after dinner. Btw…Vladimir doesn’t feel badly that I’ve abandoned him in the kitchen….mainly because he has always eaten every leftover in the fridge like a vacuum cleaner before I even get home, so he’s finished for the night.

After it all and in the end, I know that I will be happy that I had spent time eating dinner with her after work, creating some good quality time with her, knowing that she had a full stomach at the end of her day. It’s also a good thing for her interacting with people and engaging her brain. It’s a win-win situation.

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Oh No, I’m in the Doghouse Again…Dealing with Dementia Patients

Basic CMYKMondays are usually a stressful time for me when caring for a dementia patient, in that you’re bouncing off of a weekend, hopefully a good one…the alarm goes off at 5 am, you’re tired because you’ve been going to bed later than normal for the past 3 days but work is calling. You drag yourself out of bed, do all the things that you do in the early am and out of nowhere, Mom decides to get up early. I pass by her room, and notice her toes moving…I say to myself “OH NO…I’m not ready for her to get up yet, I am still trying to get ready for work” I pass by deliberately a few minutes later, and now I see her feet dangling off of the bed. I peek my head in her room and I say “It’s really, really, really early, you can go back to sleep for another hour”, praying that she will lay back down for awhile. As fate would have it, on this Monday morning, no such luck…I can see trouble in her eyes…or rather that weird stare when she goes into a dementia attack. I continue to go about my business thinking that maybe, just maybe she will give in and go back to sleep for an hour….nope…she’s up and shuffling towards my bedroom door…Happy Monday.

So, with that I make sure she’s not needing the bathroom, and I continue to go about my business in getting ready for work. When this happens in the morning, she reminds me of a lost kid, with all of us running all over the house from this room to the next in preparing for the day, and there she is standing there wondering what is happening. It’s obvious that she wants some attention paid to her but since she seems all right, we just keep doing what we are doing so we can stay on schedule for work. Vladimir leaves for work and now it’s just me, Mom and the dog, waiting for Cardine, her home health aide to come. I’m still running around trying to be done on time. Finally it’s 7:30 am and Cardine’s car pulls up. Tonya, the dog sits in the window eagerly waiting for her to walk through the door in anticipation of the usual snack that I leave for her when I go to work. Mom is standing there wondering what is happening going further and further into her dementia attack, and I am saying thank goodness Cardine is here, a sitcom in the making. After she arrives and settles in, I brief her on the morning, I say my normal goodbyes and I get a wicked awful blank stare from Mom. Her face is expressionless and her mouth is like a straight line across her face. She does this whenever she is angry with me….so, I just excuse myself and leave for work saying “Have a nice day ladies”. I wish I could think to take a photo of this because it’s a funny face…Mom was mad at me so I’m thinking Oh Boy…poor Cardine, Mom is in a tailspin and they will have a rough day and that’s never a good thing. On that note, I was gone…

Photos: (1) Mom and her home health aide, Cardine…my hero!

mom-cardineUpon my arrival home after work, I found that Mom let her anger go right after I left and Cardine had a wonderful day since Mom readily agreed to have a hair wash and a bath in the morning without a fight. People with dementia apparently let go of anger a lot faster than the rest of us, probably because their mind is in out of sight, out of mind mode…It was a good day for all….after all.

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Can Music Therapy Help Soothe Dementia Patients…it did for my Mom.

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Mom at a very young age sitting on the
stoop at the family house.

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We work all week long, getting up on Monday wishing our lives away for it to be Friday, only to have a hard weekend dealing with dementia attacks from Mom over the weekend. This weekend however, has been quiet and normal thanks to music therapy. She had a wonderful Saturday listening to Pavarotti cds all afternoon, which I can honestly say is her favorite thing to listen to. I actually feel it makes her normal, calm and puts her into a completely different head set making her thoughts clear. She can sit and listen to him all day and never tire of it, just sitting there as if in a trans, swaying back and forth to the music. She came to live with me with a love for Pavarotti’s music and in her mental void, that has held true.

Today, she is passing the time going through all of her papers, which of course, she loves to do. I know it makes her feel like she is in the office, which is her second love to Pavarotti. I enjoy seeing her involved in the things that she loves and although it’s not what we would choose to do for ourselves necessarily, it works for her life. Helping to make a dementia patient engaged and involved is helpful in that, they are not stressed, leading them away from dementia attacks. That helps both the patient and the caretaker to have a better day. Keeping a person with dementia engaged is key to helping to slow down the progression of the disease.

?????????????????????????????????????????????????????????????????????  mom_typewriter

Photos Above: (1) Mom as a little girl sitting on her front steps, (2) Mom out in California sitting at her home typerwritter.

She also has a lot of games and puzzles, but she much prefers the paperwork and music therapy. I have recently been given some brochures and information about people coming in to the house to give her music therapy during the work week when Cardine, her home aide is here. I think that would be a wonderful idea and would help to keep her mind moving during the day, while also give her something to look forward to. With spring coming on, it would be a good idea to start new things which will engage and stimulate her in different ways. There are probably organizations that would come in for arts and crafts as well. I think that Cardine would love that tool….she loves to color!

So, it’s a sunny and tranquil Sunday, and I find myself appreciating the day knowing that Mom is having a good day. Bring on Spring!

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