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Find out How to Write Down the Your Privacy Rights Huntington's Online Privacy Policy Huntington's Form

[Music].hi welcome to another episode of here's.the deal I'm Jennifer Simpson today.we're going to be talking about an issue.that has unfortunately impacted I think.a lot of folks in the community and it's.probably something folks have had to.figure out how to deal with on their own.we're talking about end-of-life an.end-of-life care how it impacts the.caregiver we're really lucky to be.joined today by the wonderful geumja.Nonie gia is an incredible young woman.she is also a member of the NY board and.we're very lucky to have her here.sharing her experiences hi Gia so why.don't you tell me a little bit about how.HD touches your family okay so as far.back as I could go it really just goes.to my grandfather on my mom's side so he.had it late in age and it just seemed.very normal to me as a kid but I.witnessed the mood swings the.aggressiveness towards my grandma and it.just was like what's going on I wasn't.necessarily told that he had.Huntington's disease probably until a.little bit later probably towards his.end of life but I was 10 when my dad and.my mom decided to tell me and my sister.that my mom had HD so um it's been a.long time that I've known so she had a.very different HD than him I would like.to say she did go through a period of.her mood swings and being aggressive but.it wasn't as bad as my grandfather's was.and it was more so the Korea that was.like full-blown and my mom and.unfortunately she passed away March 20th.2016.okay so we're coming up on four years.yeah so you found out when you were 10.that your mom.was to had Huntington's disease so it.impacted a lot of your your childhood.and your the process of growing up.definitely so when did you get to that.point knowing that we're four years off.of her passing that you started to.realize okay we might be coming up.towards the end her mom so something I.definitely would like to point out is I.think I definitely had a different.experience maybe than most people.because I decided to stay in New York.while my whole family moved to Florida.so I kind of got flashes of the disease.as it progressed I wasn't there for the.entire thing I would say so anytime I.would go home I would see a new version.of my mom which definitely was not easy.I always thought in the back of my mind.oh she's just going to be the same as.before but I would say the marker for me.and realizing that it was end of life.was when my mom's private aide left.because she was going to school in a.different city and my dad thought this.is time for hospice and just that word.alone was enough to send me into well.that must mean the end is coming yeah.yeah I think at any time anyone hears.the word hospice they think someone is.imminently dying right they're about to.go how long was your mom on hospice for.so the private aide left in May of 2015.and very shortly after we got Hospice in.and so she passed March of 2016 so very.short time actually so yeah but 10-ish.mom yeah about that.ten months I think for because for some.folks Hospice is this idea of like.usually or six months out right from.passing something of a boy you know you.could be on Hospice for a day or you.could be on Hospice for three or four.months but for folks in HD a lot of.times they end up being in hospice for a.much longer period of time right because.you are that sort of end-of-life.term laughs yeah longer than for someone.going through a different disease course.how did how did it impact your your mom.and your family when that sort of term.the hospice came into play I think I.don't think my mom was so much aware at.this point I think honestly what was.harder for her was that her best friend.was leaving because she formed such an.amazing relationship with the private.aide we had so I think once hospice came.in she was more just kind of like these.people are here to help me out I think.she was just very relaxed with the whole.process but for me and my sister I just.remember we were very defensive when we.got a private aide we had two private.it's one when we still lived in New York.and then one when we moved to Florida.and we hated that idea but once hospice.came in I think we hated that idea more.because it was more so like now she.won't be comfortable with just one.person it's going to be a different aide.either every day or every a couple of.days and we didn't have help on the.weekend so it was gonna be can we get a.volunteer that works well with her can.we even get a volunteer at all so I.think for us it was just like this is.scary not only for us and how we feel.about it but because we want her to be.in the best care that she possibly could.be yeah it's a big transition point yeah.right going on Hospice one from your.whatever caregiving routines you guys.had figured out before which is.something you guys that are really lucky.and a wonderful caregiving routine with.their personal aids than having to go.into this new whole new dynamic where.you're right you do have different folks.coming in it's not always going to be.the same person you know sometimes it.might be you know you need a hospice.nurse and you need them in the middle of.the night so it's or whoever is on call.is going to come and.help out it's a very it can be tough for.for caregivers especially who I think a.lot of times feel such a sense of.control over what's going on with their.loved one and the pride over that yeah.like I've got this under control.I'm doing this the right way that's.definitely I think what we all felt at.first is even when we had the personal.aides coming in well why do we even need.you if we're doing a fine job we know.what we're doing we know her in and out.her likes or dislikes we know what's.gonna set her off what's gonna make her.calm and happy and laugh and you know it.takes time for the aides to catch on but.they they do catch on and with hospice.we were really lucky to get amazing.nurses like even if it was every other.day that they would come they loved her.the only downside that I saw at the.hospice was you get 30 minutes they.would come in they would say hello how.are you doing give her a shower and be.on their way and to someone who is.caregiving every day and you see that.this organization that's meant to like.really be there and support you it was.really just showering her hmm it's.frustrating yeah and that's also that.goes to speak in so many ways about the.issues that we have set up with.insurances right what people are getting.approved separately and that's like a.whole other series it's massive did you.get a sense when you were when you were.making that transition as a family into.this new Hospice routine was there.anything about that that you did find.helpful about getting into this sort of.that end-of-life care routine I think it.was we started out being so scared about.the connections that my mom would have.with them but there was nothing to worry.about like we knew my mom's personality.that she would have lit up with whoever.was gonna walk through the door really.so I think once she formed those great.connections with literally every single.nurse that came in it made it easier for.us and then we.it would be like able to make jokes with.them as if like they were a part of the.family which is exactly how it worked.out with the personal aide - they became.a part of the family so that was.something we weren't expecting to think.of hospice as like a family but that's.what it became and that made it so much.easier you mentioned something your kind.of reactions and how your mom adjusted.versus how you guys as caregivers.adjusted so many times sometimes there's.this worry on the part of the caregiver.that the person being cared for is going.to be the one who struggles but the one.who's really struggling is the caregiver.right right it's served you're.projecting that on to your loved one.when it's really like okay this is.really me I have to make this adjustment.they're okay they're gonna be there.they're fine they're gonna be okay it's.me I have to yeah I'm having to let go.and I'm having to adjust and I'm having.to deal with my fear and anxiety and and.maybe the grief that I'm starting to.feel it kind of goes into a different.topic which is did you find yourself.starting to experience grief when the.word hospice came up when that came into.your life definitely and I think it's.because when we got each personal aid I.was there to be able to kind of like.check them out see do you fit my.criteria in a sense but when Hospice was.introduced I was in New York and I.couldn't be there for that process so.what I remember from that day actually.is my sister facetimed me while they.were there and was like this is what's.going on like this is what's happening.and I I wasn't really like listening to.conversations that they were having but.my sister's just letting me know like.this is more voices yeah this is where.we're at so I I think like I said before.since the word hospice was enough to.just make me think of end-of-life I was.just trying to really prepare myself for.how long it could really be left that's.also a really a really interesting point.is sort of the anxiety that then can.come with that knowing that Hospice.last a month a week or ten months right.right.how did you won how did you did you.experience some of that anxiety and then.how did you find yourself coping with.that so it was difficult um mainly.because I had those flashes of the.progression so it was just like I would.come home and we had this ongoing.tradition of Gia's coming home we're not.telling mom it's a surprise and I would.film it I would film my entrance into.the house and like saying hi to her and.everything so I have all those videos.and I think now that it's been four.years I could look at those videos and.be reminded and reminisce and that helps.me cope but when it was earlier like a.year that she had passed I couldn't even.look at those videos because it just.brought up so much like emotion but.seeing the flashes is what really I I.always in my mind was like she's just.gonna be the same exact way she's gonna.be the same exact way and my dad had.told me if I call you it's serious.because my sister liked to give me.updates mm-hmm which I appreciate and I.appreciate it then but it was hard.because she would be like you know mom.fell or this happened and I'm all the.way in New York and I'm like oh my god.what can I do from over here nothing I.can't do anything so when my dad called.me he called me like I believe three.days before she passed and he said I.think it's time you come home and it was.on my spring break and I met this this.is the thing I missed a call from him so.it's a voicemail that I never listened.to but I got on a flight I went home I.did my video I took my video of me go.in and saying hi and that that's the one.video I can't ever watch because you.could see from the video prior and that.video how like different her appearances.hmm that I think was the most.mind-blowing thing for me was her.physical appearance that I still like.get flashes of yeah hard to kind of.forget yeah what that looks like.definitely and that's something I think.can that might be helpful for other.folks to hear as well is the challenge.of just watching someone physically.change right as they get closer to end.of life as they get close to that that.could by point.do you remember what were things that.you kind of noticed changing over that.period so her speech definitely was like.almost completely gone we used to joke.that's our coping mechanism a hundred.percent was laughing finding a joke that.we could make because she got a kick out.of it whatever it was even if it was.like making fun of her in a sense she.lived for it.so um we just laughed through everything.but the physical appearances like I saw.she was like skin and bones very very.skinny she wasn't eating she wasn't.drinking we had to actually she wasn't.able to swallow her pills towards the.end so we had to like syringe water and.stuff so that was really difficult.especially because for most of it I.wasn't there so my sister would like.tell me so that I would be prepared for.when I went but again I never thought.that that's what I would walk into yeah.um but it was just like she which is.weird because she had all like memories.she could recall things from like my.first birthday even towards the end of.her.hmm but it was just like those motor.functions she couldn't walk she could.barely talk as much and she was getting.sick a lot.she had fevers like probably every week.she had colds that like just didn't go.away really and we actually had I don't.know when exactly it was but we had a.scare which I wasn't there for but my.mom like passed out and she wasn't.waking up and my sister and my dad had.told me that they were like smacking her.face and throwing water on her and it.must have been close to when she was.going to pass because I remember my dad.telling me like Lisa you need to wake up.it's not your time to go you need to.wait for Gia yeah so like hearing.stories like that which again like I.didn't always want to know what was.happening I wanted to stay in my safe.little bubble sometimes but when I look.back on it I think it's good that they.let me know because I I'm still part of.the family.I needed to be a part of what was going.on well and it's also managing that.balance between your own kind of mental.health of being separated from it but.also the anxiety of not knowing yeah Rex.and that's the other thing about being.away and having a person who's on.hospice knowing especially if you're dad.saying if you if you hear from me we're.there then I'd be you know I can imagine.if I were in that situation sort of.checking my phone being constantly.worried about what am I getting at that.call when is it gonna is it today is it.tomorrow.I can imagine kind of putting your life.on hold a little bit during that time.what what was that like for you it was.tough because I really really wanted to.focus on school as best as I could but.it was hard like professors would always.say you know on your first day of.classes don't have your cell phones out.but if you need to for an emergency it's.fine and I was always like that student.hmm so I always had like my phone on.vibrate or just to make sure and some.those calls would come from my sister or.a text and I would walk out of the.classroom and not return but for the.most part I really tried to just like.set my mind to.getting my schoolwork done and making.sure that I had those moments with my.mom on FaceTime.so like however I could get in that.family time while I was still at school.I made sure I did.yeah and I think that's what helped me.prepare the most mm-hmm like I guess in.a sense like you said it was my mental.health I was able to not be there all.the time so that prepared me in a way.mmm it kind of gave you a little bit of.that space to definitely to allow.yourself almost sort of like a like a.strength boost that you needed at the.end yeah when you went and you saw your.mom and you or you got the call from.your dad and you knew it was time yeah.to go and we all breathed extremely.differently and I think that is because.I had that distance also so because one.thing I was that I'm interested in you.know talking again about grief is you.know we know that grief is not a process.that begins when someone passes.especially in HD there are so many.things that you grieve throughout the.course of the disease right from you.know finding out you're at risk to.getting a positive test to losing an.ability any kind of thing that includes.a loss includes grief yeah did you find.that your grief or that you had a.particularly fun you were in that.hospice period of like okay this is we.are getting there like there will.there's an end to this journey and it's.insight yeah I think mostly for me at.that time it was thinking of everything.that's going to happen in the future.yeah I agree.her not being at my graduation for.undergrad I was grieving knowing that I.was going to attend graduate school and.not have her there for that graduation.which would be.my final graduation you sure you don't.wanna PhD you keep going I thought about.it but I grieved like her witnessing the.growth of my relationship with my.boyfriend.I also grieved for my sister and.everything she's going accomplished and.what my mom will miss out on I grieve.every time that my parents anniversary.comes because they met when they were 18.so it was a very very long relationship.and I grieved for him because he is.still really really in the depths of.grieving and mourning her loss Wow me.and my sister have been able to find.those coping mechanisms a little bit.more and had I guess a little bit more.support mm-hmm I grieve for him and his.relationship with her a lot so I think.when hospice came I was just flooded.with like well these are all the things.that are to come and I know she's not.going to be there for them mmm yeah.recognizing that there's this whole.beautiful future right that she's not.gonna be able to see you as your mom.right right and which gets to another.idea of sort of like you know as people.approach end of life and his family's.approach end of life a lot of times.different family value systems faith.traditions kind of come into that.process did that impact your experience.of that as of end-of-life so my mom was.religious to a degree and one thing that.I found like really nice about her.passing was that we honored that side of.her even though she didn't keep up with.it as much.we had a chaplain we were calling our.church in Florida which we hadn't known.them for very long but I mean and we.said like we need someone to come and.they came and they prayed over her.it he he gave us the time for all of us.to say something to my mom while he was.praying which is like like it was just.so different for I would say myself.because I'm not very religious but I.remember that moment so perfectly.because he gave us each a second to say.something and after the last person said.something is when she passed so yeah so.it was like like a full circle type of.moment I guess especially because I knew.that that's something she would have.loved in that moment yeah that was great.in terms of like what helped us through.everything I would say our traditions.was really just finding laughter and.anything that we could that's how we got.through every single day well and it's.it seems like also such a lovely thing.that you were you know constantly.thinking of her her personality her.wishes her beliefs and values and being.able to honor that for her at the end of.her life yeah and be a part of that as a.family is really lovely it was really.difficult because I don't think any of.us saw it coming did in the days that it.was coming yeah.even though my dad had called me I don't.think any of us knew it was going to be.within three days of that call yeah um.but that was like a scramble we were.like well what do we do we didn't have.anything set up um we were like does she.want to be buried does she want to be.cremated like we were not sure we also.had the very last minute thought of.let's donate her brain so it was a.scramble when dealing with that and also.her just passing away we were like I.think we're putting too much on.ourselves like we have to make the.decisions that now that she's gone that.we think are the best and they like the.logistics of passing away are also just.brutal on the family members right you.know you're grieving someone has just.passed away and you've got a.phone calls to make yeah right that's.actually that was my coping my own ISM.that day I decided I needed to step out.I couldn't be in the room anymore.I didn't even necessarily want to be in.the house hmm.but I we have like a lanai in our.backyard and went to the lanai.I was calling my friends I was calling.my mom's friends my dad's friends.everyone and my family still to this day.is like how were you doing that like how.are you so composed and like able to.call these people without even really.shutting it's here I was like a stone.wall kind of but that was like the best.way I could think of to kind of remove.myself from the situation for the time.being yeah and I think that's the other.thing that's what most folks don't is.don't realize is that those processes.are so individual right what worked for.you is unfathomable for your sibling.right and also that that it will be.different for everybody and it's even.different with each passing right it's.not going to be the same what happened.for a parent versus what might happen.for a grandparent or an uncle or an aunt.it's all going to be different and to.allow yourself and allowing the other.people in your life to have those.individual experiences and to process.those in their own way it was.interesting that you also were like I'm.gonna be useful here yeah I'm gonna make.this I know yeah it was very useful.because it was extremely stressful.knowing that almost every single person.that my mom touched their lives lived in.New York so we had to be making those.phone calls as soon as we could.along with planning for the wake and we.did have a cremation so it was just like.how how do we plan for the time that's.good for us to go through this wait in.everything but also make sure that.people who want to be there can and be.there so that was a lot and.I'm super grateful for everybody who did.come because those tickets were very.expensive yeah I mean that's the other.thing that can be really hard on.families is that it's not you know.especially if you're fractured and.fragmented around the country you kind.of have to you know imagine a ticket.from New York to Florida right day of.right that's that stuff yeah that can be.tough I'd actually I wanted to also sort.of touch on spirituality and religiosity.are very different do you feel did you.have or do you have a sense of.spirituality that has helped you through.this process 100% yeah I've always kind.of been spiritual but I think now I am.more because I just feel like okay she.is going to miss out on those big.milestones of my life my sister's life.my dad's life but I could still talk to.her I could let her know what's going on.I um I really do feel as if she does see.what's happening so I that that's.another coping mechanism for me for sure.hmm I definitely do a lot of traditions.that I would say I tried to keep up with.or made my own so once my mom passed and.like I said we did cremate her I took.some ashes to Jones Beach and that was.just like such an amazing moment for me.and I now I did it on her birthday.actually.so whenever her birthday comes around I.go to the beach and her favorite drinks.were always coffee coladas or like any.version of that so I bring a coffee.colada to the beach and I put two straws.in it because one's for me and ones for.her and it just gets me through that day.and March 20th I try to not be so.traditional and I kind of just like to.relax and take my mind off of it instead.of doing something necessarily normally.my thing for March.20th is to go to any open friendlies and.get pistachio ice cream because that's.what she would have liked but I try to.keep it like minimal on the 20th because.that is more of a hard-hitting day for.me her birthday is also hard-hitting but.since I spread her ashes that day it's.just more of like a peaceful release.that day hmm.and it's and sounds in a way also like a.reconnection day definitely right you.know you mentioned having a sense of.spirituality yeah can create a lasting.connection with a loved one even if.they're not there physically with you.which can be a wonderful really good way.to cope and to still feel that person's.presence in your life even if they're.not physically here anymore.mm-hmm something I also wanted to kind.of touch on is how relief can play a.part of this process oh yeah when you.were in at that point you had gotten the.call from your dad how if at all did you.experience relief when your mom passed.so flying to Florida again I was in my.state of mind she's gonna be just like.the last time everyone's lying she's.fine so I was fine up until I walked.through that door and there was no sense.of relief during those three days until.she passed hmm the three days after she.passed completely different mindset cook.like I never knew or thought that.someone could feel relief from a death.mm-hmm I also kind of beat myself up for.it a little bit because I was like why.am I thinking that this is a good thing.yeah why do I have any positive feelings.embrace yeah and that was honestly one.of my first stages of grief was you know.I'm accepting this already how how am i.accepting this already but it was just.the relief of knowing like I don't have.to keep my phone behind me at all times.I don't have to worry.about a phone call coming in I don't.have to worry about that phone call from.my dad I can put my all into school and.other things that I want to do obviously.I still make it a huge point to go home.and visit my dad and my sister but back.then it was you need to go you need to.see your mom because you're already.distant so you have to go and it kind of.relieved that because I could kind of be.my own adult I could say I I have so.much schoolwork I don't have time to.come to Florida this is for spring break.so that was that was big relief was.definitely like the first for me and.oddly enough my dad and my sister.started there too I think we all just.kind of felt like there aren't going to.be a whole bunch of people under in the.house anymore.my dad redid our whole bathroom and we.did a lot of parts of the house because.they were reminders yeah but he was like.I don't need to handicap the shower yeah.like it was just completely different.way of living well I and for so many.folks that the tasks of caregiving it's.about you have to count it's constantly.externally focusing your attention right.the you're never thinking about yourself.you're never thinking about what you.need what you want what's good for you.you're worrying about the person you're.caring for so in those moment after that.job is done right when a person passes.and your caregiving job is done it's.sort of you can have that feeling of.yeah like that that was exhausting and.I'm kind of glad to have a little break.now which can be definitely which I.imagine if you are saying that in your.mind as someone who's just lost their.mom you also then have this other little.thought that comes in as like you're a.terrible person yes.how dare you super confusing yes you're.just like I shouldn't be feeling this.right now yeah but as fast as relief.comes it goes because then like you said.you have this new job your job is no.longer to.make sure that your mom's eating that.she is invade that she changed her.clothes that news12 is on the television.like so it's just you have to change.everything about your day yeah and I.spent I'd like to say a week and a half.in Florida after my mom passed and it's.it's such a weird feeling to know I.don't have to wake up at like 7:00 a.m..to get her out of bed I don't have to.like bring her into her room at 8:00.p.m. to get her ready for bed I don't.have to brush her teeth I don't have to.do any of this so it was a really weird.feeling for the week and a half that I.stayed after but once I got back to New.York it was again like that sense of.relief like I don't have many.responsibilities related to my mom now.that I'm back in New York and she's not.here yeah so it was it was definitely.odd but and it takes a while to get used.to that new normal.yeah even though I was distant yeah cuz.it's also an identity shift right.they're not now someone whose mother is.dying right you're not caregiving for.someone who is dying yeah that's changed.mm-hmm.so something sort of one of the one last.thing I wanted to ask about knowing that.we're almost you're almost four years.out mm-hmm of the passing of your mom is.there anything that you have had to deal.with in the last four years post passing.mm-hmm that you just you didn't see.coming like it any part of that.experience in a way I didn't see myself.being as okay as I am hmm.sometimes that gets to me even still how.come you're not like really grieving.hard how come you're not you know like.it was your mom why don't you feel sad.all the time because I think like you.know people think someone a parent.passes away you have to.down in the dumps for like years and.that's why I say I think that distance.created like prep for me hmm.getting used to not having your mom yeah.yeah because also like you said like I.kind of had to be independent on my own.in New York and you know then without.her there it was kind of just like when.I'm in New York things could go as.normal this is what I'm used to when I.go to Florida sometimes it's a little.different it depends but it's just been.a struggle to with myself like should.you be more upset should you like are.you are you to accepting of this you.know you're you're yourself.yeah which is can be really really.detrimental yeah to your own mental.health because you can't you put.yourself in this place where you're.rethinking and re rethinking all of your.choices all of your feelings and.invalidating them in the process right.right yeah and I think the other thing.to recognize is that grief isn't you.know as it's too you know a Sicilian.mourner screaming and crying oh yeah for.years on end it's just it's lengthy.process and that's not necessarily one.that has a defined end point you know.four years out are you still are you.still grieving for your mom yes what I.was going to say is that I have just.entered and already exited but from.being angry I never felt angry during.these four years but I was at my.apartment.and I was just like watching videos and.I was just mad I was just like why you.why our family like couldn't this like.just not happen yeah you know like um.because I found that the shift that.happened once my mom passed was I cared.about myself more in terms of HD I was.like I don't have to care give anymore.so now more can.learned about me being at risk yeah but.there were those moments where I bring.it back to my mom a hundred percent you.know I had to realize the whole reason.that you're a part of this community the.reason why you have a voice and you use.it is because it started with your.impact with your mom um yeah so I just.got so angry and this is like last month.yeah and I never experienced anger while.grooving I knew it was okay but I was.just like what like don't be angry at.her but then I allowed myself to feel it.and it passed and I entered back into my.like normal state of grieving and that's.that that's such an excellent example.you know things will come and things.will go right right whatever you're.experiencing it's not gonna last forever.good or bad it will pass allowing.yourself the space to feel allowing.yourself to have these experiences have.these feelings will also give them the.chance to pass definitely I think if.you're also then if you were telling.yourself I can't be mad I can't be mad I.can't be mad there were you would.probably still be pretty mad and I felt.that anger for like two days when I was.texting my boyfriend I'm like I don't.know why I'm so mad at her right now.like I'm I'm mad that she won't be there.for these milestones that's what it.really was because May I'll be.graduating and to me that's just like I.I can't believe she won't be there yeah.and that's I think why watching those.videos stirred up all those emotions and.I was like I'm just so pissed off but.you can't be there for that yeah so.after two days and I just like relaxed.and allowed myself to be angry at her.and you know it it in the world and all.these other yeah sure it kind of did.make me feel what I thought I had to.feel I did feel that sense of sadness.like okay turn your anger and just allow.yourself to you know go with the flow.you're upset that she won't be here.you're upset that she's been gone for so.long and so I'm glad that I let myself.feel that.shout-out to Social Work school teaching.me skills that I could use for myself so.yeah yeah and it's one of those things.where like you realize that that might.come back right right it's not like.great I've had my anger or yeah yeah you.know I've gone through my bargaining.phase these come these go my experience.again you I experience it more intensely.for longer.the last thing I'll touch on is you know.have you do have you had outside sources.of support going through this like have.you did you engage in like therapy.anything like that or just having.particular people in your life who you.felt like I can talk to you about.anything has that did that factor into.your process 100% I think I'm actually.going to be in the process of going to.therapy so I'm like I'm so happy but I.mean you you know like the nya literally.and I could talk to anybody even if they.have an experience of passing yet it's.just like that I don't have to explain.to you why I'm feeling sad during a.certain time of year mm-hmm and also.even though me and my sister have.grieved differently she will always be.the number one person who I could lean.on and that's a big help especially with.the distance that's there it heightens.our relationship mm-hmm so I would say.once my mom passed we were like tighter.than we could have ever been yeah of.course over time when people are.grieving differently the relationship.and the dynamic in your family changes.sure I've seen it change quite a few.times in the four years but what's.always remained is like how close me and.my sister are so like I could just be.like yeah you know I did text her when I.was angry at my mom mm-hmm and she's.like been there that's still there.sometimes.that's like been my number one allowing.yourself that open communication with.your family members because imagine you.know who else is gonna understand.exactly in so many ways what you're.experiencing yeah and those people in.your family giving them the chance to be.there for you and allowing and letting.them know that you're going to be there.for them right right in the same way and.creating this you know making sure that.none of those things that you think or.taboos that you're shooting yourself.over that should that you that you take.away the taboo of that where you know.you don't have to feel guilty because.you both recognize you're experiencing.the same things and you're not the only.person on the planet and you're not a.bad person and yet okay and I also found.that like letting professors know was.very helpful because obviously when.you're impacted by HD some people want.to talk about it some people don't but.if you do chances are you really really.want to talk about it so I would write.papers on it and that was like a way of.releasing and then getting feedback from.professors on those papers where they're.like I had one professor comment on a.paper and just be like this is all.thanks to mom it was just like so so.sweet that someone's recognizing why I'm.in this program is because of what I've.experienced so I think like the school.has helped people that I've met through.the school also who have lost parents to.various diseases or events like 9/11.it's just forming connections with other.people who might not have had HD in.their life but know what it's like to.grieve and how that process is different.it's that's what's helped also.especially as a young person where you.might not there might not necessarily be.a lot of other 18 19 20 year olds who've.lost a parent right so finding those.connections creating that community is.so important yeah well yeah thank you so.much for talking with me today I really.appreciate it it's obviously not always.the easiest thing to talk about but it's.so important to have these discussions.about what it's like to go through.end-of-life with someone with HD yes and.that's the deal on end-of-life care.giving.Thanks.[Music].you.[Music].

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A web page I need to fill out states (in their privacy policy) they will track the site I came from and go to afterwards, as well as my location, browser and OS identity, and much more information. How can I safely fill it out but block all this?

You could go for a cheap online privacy policy and terms generator online, but that can hurt your business. Here’s a new reason why: A new law coming into the EU called the GDPR. The GDPR will affect how people and businesses who collect data will be able to store, use and distribute this data. The fine Continue Reading

How fair is cleartax.in for e tax filing in India? Does it guarantee safe guarding your privacy, as regards to your investments and assets? Any other commercial online website for filling income tax for NRI?

There are lots of other website available for e-filing like Taxspanner, Clear Tax, HRBlock etc. You can choose Clear Tax for e-filing. However, the safeguarding of your private data can be a major issue as they have larger client base and thus might result into being targeted by people seeking that kind of data. This days, whatever their never ending colossal privacy policy depicts, you can never be sure about your data privacy. On the other hand, you have to prepare majority of the data & workings on your own as against the personalized services provided by a tax consultant. You can only discuss Continue Reading

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