Update on Hank's Heartbreaking Decline with Lewy Body Dementia
Life Recovery Services PLLC
8,628 views May 10, 2024
===
Madonna shares information regarding Hank's decline with Lewy Body Dementia and how caregiving for him has changed. She talks about the challenges faced by Hank due to Lewy Body Dementia.
===
Transcript
===
Chapter 1: Intro
0:011 secondhey how are you guys so my name is Madonna Brown and I'm a licensed clinical mental health counselor and uh
0:099 secondsmy husband's had Louis body dementia now for about 12 years he is 58 years old
0:1616 secondsand he got it when he was 46 so we've had quite a few years of this and uh some of you that follow us know you know
0:2424 secondsyou've heard a lot of stuff uh so but I just kind of wanted to give you an update on how Hank is doing and uh because we've not posted a video in
Chapter 2: How Hank is doing
0:3232 secondsmonths um so now Hank has gotten to the point to where I have to help him like
0:3939 secondsdress I mean I have to help him put on his pants uh get his shirt out help him put it on he wears Hein aads so I have
0:5050 secondsto take him put his Hein AES on him it's not like he's going to be able to do it even if I hand it to him he's not going to know which ear does he put his he
0:5858 secondsandate in things like that uh he has a watch that he wears he cannot put that on anymore uh so I think
1:061 minute, 6 secondsthe last time that you probably seen a video of us uh he could still do a lot of those things he might need a little
1:131 minute, 13 secondsextra Direction like maybe I'd get his clothes out for him or something like that but now I have to get his clothes out and I have to help him get them on U
1:231 minute, 23 secondsA lot of times he don't know which shoes he wants to wear he might put on one shoe of one kind and one shoe of another kind and not really understand or say
1:321 minute, 32 secondshe'd have a one shoe on one shoe off and he just didn't understand what was going on things like
1:391 minute, 39 secondsthat I know it's not been that long ago we talked about how you know I have to shave him now a lot of times I will send
1:471 minute, 47 secondshim to the barber shop for that so that's only gotten more sever not I won't say severe it's just he can't do
1:541 minute, 54 secondsany of the shaving now uh he's also gotten to where he was was able to take his showers byself which was good uh now
Chapter 3: Taking showers
2:032 minutes, 3 secondshe can get in the shower but he can't take the shower by himself so I usually just put like shampoo on his hair
2:102 minutes, 10 secondsoutside of the shower uh and get it wet with like a spray bottle and get it good and suds in then he gets in and I just
2:192 minutes, 19 secondsstand at the edge of the shower and give him like a soap to put on his body and I have to direct him on where to wash how
2:262 minutes, 26 secondsto do it things like that and then getting the water getting everything rinsed off it's a little more than than it needs to be
2:352 minutes, 35 secondsseems like but these are just things now that he's at the stage that he's at of the Louis body dementia um also I've
2:452 minutes, 45 secondsnoticed like uh when it comes to brushing his teeth now I have to get his toothbrush out I have to put the toothpaste on it uh he can do his
2:542 minutes, 54 secondsdeodorant some days some days I just put the deodorant on him but I felt like you guys probably would be interested to know you know how things are going he's
3:033 minutes, 3 secondsstill able to eat his food by himself as long as I cook his meals I mean he can eat it he can hold
3:103 minutes, 10 secondshis Fork his plate all those kind of things uh he no longer can take the dishes like out of the dishwasher I know
3:183 minutes, 18 secondswe had talked I had talked about in a video that he could do those kind of things and as long as you got dementia and you
Chapter 4: Caring for someone with dementia
3:263 minutes, 26 secondsgot a caregiver that's got the time I really believe that you need to be doing those things uh I think somebody that
3:343 minutes, 34 secondsyou know is caregiving needs allow the other person to do all they can as much as they can but sometimes when you got a
3:423 minutes, 42 secondsbusy life going and things get too much I mean I know as a caregiver I can't always allow him to help me make a cup
3:513 minutes, 51 secondsof coffee in the the coffee pot which just take pods but I can't always spend that time doing that uh I try to allow
4:004 minuteshim to do as much as he can but that's very time consuming uh if you tell him to wear a coat which coat is he going to
4:084 minutes, 8 secondswear where is my coat uh it used to be everything that was in order and he knew where everything was
4:154 minutes, 15 secondsat say it's because his coat always hangs at the door and we have a red door there so it was easy you know it's it's out by The Red Door well now a lot of
4:244 minutes, 24 secondstimes he'll say well where's the red door or which is the back door which is the front door if I tell him to go I think I told in
4:324 minutes, 32 secondsanother video because uh I said something about you know can you put water in the coffee pot and he didn't know what that was and somebody did
4:404 minutes, 40 secondswrite and tell me in the comments to call it a coffee maker and I tried that but it didn't really help because he's
4:484 minutes, 48 secondsat the stage now that uh a lot of words he just Mom
4:554 minutes, 55 secondswill say a lot but some words he just can't figure out and like with the coffee pot I wanted to know do you think it's a coffee maker do you think it's a
5:035 minutes, 3 secondscoffee pot it's just what we used to make coffee uh but he can't come up with the word to
5:115 minutes, 11 secondsknow what it is he can't come up with the language now to say hey let's call it this
5:195 minutes, 19 secondshey here's what it is and that's frustrating for me you know we've talked about I have on many videos about things
5:275 minutes, 27 secondsare really frustrating for me and it hadn't got any easier in that area if anything it's gotten a lot
Chapter 5: Getting ready
5:355 minutes, 35 secondsworse um you know and I like to drink coffee of the morning so I'm drinking coffee and he's drinking coffee and it's
5:435 minutes, 43 secondstime to get ready so we walk to the bedroom to get ready but I try to just tell myself here's what you got to do and I tell you something else I've
5:515 minutes, 51 secondslearned through this is I don't need to be on the phone when Hank is getting ready of the
5:585 minutes, 58 secondsmorning if the phone rings and Hank is in the shower I don't need to answer the phone because that's going to cause me
6:066 minutes, 6 secondsto be more frustrated because Hank is in the shower and I'm trying to do that now somebody's on the phone asking me
6:136 minutes, 13 secondsquestions so these are things that I've kind of learned Now to turn the phone off turn the ringer off put it in another room just until you know it's
6:226 minutes, 22 secondswe're not going to be in the bathroom 15 minutes from start to finish you know uh things like that uh I do think sometimes
6:306 minutes, 30 secondsnow will he have to go somewhere else to live one day and that my goal will be for him to never have to go somewhere else to live but that's been on my mind
6:396 minutes, 39 secondsjust a little bit more if he deteriorates you know how because you know our minds just just go Haywire you
6:476 minutes, 47 secondsknow how how far will he deteriorate will will he go a long ways or will he not go far or you know how will this end
6:556 minutes, 55 secondsor will it ever end or will I pass away first you know this just we're just human and a lot of things going in our
7:027 minutes, 2 secondsminds it's just just how it is and uh but he's you know he's not been sleeping the best um so we're trying to get all
7:127 minutes, 12 secondsthat worked out and get some medicine he acts out a little more in his sleep which that's known with people with Louis body dementia they'll act out more
7:207 minutes, 20 secondsin their sleep things like that uh it's not gotten towards a problem like he hits me or anything accidentally while he's sleeping he does talk a lot and
7:287 minutes, 28 secondsI've see pointing with his finger you know and and talking out loud and stuff which which is all fine that that's all
7:367 minutes, 36 secondsfine but know I just don't don't know where it's going and nobody knows the future so we don't know where it's going and that's just how it is uh he just
Chapter 6: Hanks daycare
7:457 minutes, 45 secondssets a lot he does go to daycare and we've got him in one that's about 20 minutes away and he loves it and I know
7:557 minutes, 55 secondshe's not loved them in the past but this place is really good good and the people really are nice to him the workers and they do all kinds of stuff with the
8:038 minutes, 3 secondspeople that are there they play so many games that I think there's no way they can play games but they spend the time and let them play games anyway and they
8:128 minutes, 12 secondscook the food for them there and he'll go in and he'll either have had breakfast at home or he won't have had
8:208 minutes, 20 secondsbreakfast at home when he gets there and they always save him like a ham and biscuit country ham and biscuit and you know that's a really big deal something
8:288 minutes, 28 secondselse that I did uh see somewh that uh when people have dementia they need snacks around that's very comforting for
8:368 minutes, 36 secondsthem to have snacks uh so I bought him a box of just little bags of chips and cookies which
8:448 minutes, 44 secondswe're not really I'm not all for him eating all that not that we eat healthy all the time for sure but I just know that was really
8:528 minutes, 52 secondscomforting for him to know he can go in there and just get a snack there's apples and bananas but he'll go in there and get a snack sometime so but yeah I
Chapter 7: Final thoughts
9:019 minutes, 1 secondjust wonder how much sicker he'll get how much more work there'll be for me and can I keep up with the work and
9:099 minutes, 9 secondsstill do my job because I have to make a living so the caregiver still comes in and he
9:179 minutes, 17 secondstakes Hank out like to the barber shop to get in shaved and get a haircut we'll take him out to eat sometimes uh or they'll just go to Dairy Queen and get
9:259 minutes, 25 secondsice cream and he he enjoys that uh he still wants to to be right by my side all the time do everything with me and
9:359 minutes, 35 secondsthat's hard for me A lot of times uh I do try to think about I really appreciate that you know he loves me
9:419 minutes, 41 secondsthat much or thinks that much of me that he knows I'll take care of stuff and I'll be resourceful and make sure it gets done and I think that's comforting
9:509 minutes, 50 secondsto him and I'm I'm glad of that so but that's kind of the update on Han so I would like to say that's the reason I've
9:589 minutes, 58 secondsnot put out a video but it's not I'm just a slacker in the area of just doing it it's just a lot to get
10:0610 minutes, 6 secondsit all done and you know I have to work I have to take care of him so I don't know I just don't always get it done and
10:1410 minutes, 14 secondsI really appreciate all the comments from you guys and all the I see where a lot of people are praying for us and I
10:2210 minutes, 22 secondsjust appreciate all that all your kind thoughts your niceness your sweetness you guys are just wonderful F and you've
10:2910 minutes, 29 secondsalways been great to us and I really appreciate it so but uh if you need anything you let us know and uh we're
10:3810 minutes, 38 secondstrying to get Hank into a research study at uh I think it's Sanders Brown
10:4510 minutes, 45 secondsCenter on Aging it's up in Lexington Kentucky and Dr jaica is the one that is
10:5210 minutes, 52 secondsthe head of the the research Department he's Hanks neurologist already so we're trying to get him into a a research
10:5910 minutes, 59 secondsstudy and it'll be like a six Monon long and let's go two every two weeks and I think he has
11:0711 minutes, 7 secondsto have like a spinal tap and I forget what else um MRI blood work of course
11:1611 minutes, 16 secondsthings like that so no they did call me they don't they don't do the spinal tap anymore it'll be uh skin biopsies that's what it would be
11:2511 minutes, 25 secondsthey've learned some new things about skin biopsies so yeah so that's how things are going here at the brown housee uh if you need anything you let
11:3311 minutes, 33 secondsus know uh subscribe to our Channel hit the like button and you know maybe one day we'll get on a roll and we'll start
11:4011 minutes, 40 secondsputting out videos on a regular basis but I'm not gonna sit here and tell you it's going to happen I try to be as open and honest as I can be with you so
11:4811 minutes, 48 secondsanyway it was good to talk to all of you if you need anything just let me know I know I think I've said that about three times now so I'll talk to you guys later
11:5711 minutes, 57 secondsbye
===
<루이소체 치매를 앓는 행크의 안타까운 악화에 대한 최신 소식> 요약 및 평론
1. 요약
본 영상은 46세에 루이소체 치매(Lewy Body Dementia) 진단을 받고 12년째 투병 중인 행크(Hank, 58세)의 상태 변화와, 그의 아내이자 주 돌봄 제공자인 마돈나(Madonna)가 겪는 간병의 현실을 담고 있다
일상생활 수행 능력(ADL)의 현저한 저하 행크는 옷 입기(바지 및 상의 착용), 보청기 및 시계 착용 등 기본적인 일상 동작을 혼자서 수행하지 못하는 상태에 이르렀다
. 샤워 시에도 외부에서 샴푸를 묻혀주고 몸을 씻는 과정을 일일이 지시해야 하며, 칫솔질 및 면도 역시 전적으로 마돈나나 전문 돌봄 인력의 도움이 필요하다 . 식사는 스스로 도구를 사용하여 할 수 있으나, 설거지나 식기 세척기 정리 등 이전에 도왔던 가사 활동은 더 이상 불가능하다 . 언어 및 인지 기능의 악화와 수면 장애 일상적인 단어(예: 커피머신, 현관문 등)를 떠올리지 못해 대화에 어려움을 겪고 있으며, 인지 저하로 인한 답답함이 증대되고 있다
. 수면 중 언어적·행동적 이상 행동(말하기, 손짓하기 등)이 증가하였으며, 수면의 질을 개선하기 위한 약물 조율을 시도 중이다 . 돌봄 환경 및 주간 보호 센터(Daycare) 이용 행크는 최근 새로 다니기 시작한 주간 보호 센터에 잘 적응하여 게임과 식사를 즐기고 있다
. 마돈나는 생계를 위해 상담사 업무를 병행하면서, 간병인이 행크를 이발소나 식당에 데리고 나가도록 돕는 방식을 활용하고 있다 . 또한 켄터키 대학교 샌더스-브라운 노화 센터(Sanders-Brown Center on Aging)에서 진행하는 6개월 과정의 치매 임상 연구(피부 생검, MRI, 혈액 검사 포함) 참여를 추진하고 있다 .
2. 평론
이 영상은 장기간에 걸친 퇴행성 뇌 질환 간병이 돌봄 제공자의 삶과 정서에 미치는 영향을 지극히 솔직하게 보여준다
첫째, <자기 결정권 존중>과 <간병 효율성> 사이의 현실적 갈등을 명확히 조명한다
둘째, 장기 간병이 가져오는 정서적 피로와 미래에 대한 불확실성을 담담하게 전달한다
셋째, 지역사회 돌봄 자원(주간 보호 센터, 전문 간병인)과 의학 연구 참여의 중요성을 부각한다
===
===
댓글 없음:
댓글 쓰기