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I'm new here, my dad wants to die
Prettybrowneyezz
Posted: Thursday, September 27, 2012 9:03 AM
Joined: 9/21/2012
Posts: 2


Good Morning.. 

 

I'm new here.  My dad is 72 years old and is in stage 6 of alzheimers.  He was put in a nursing home for short term rehab for a mini-stroke 3 months ago.  His rehab ended with no progression.  He was admitted at the nursing home for long term care.  When he was admitted for rehab he stated that if he's there permanently, we will see him decline rapidly.  He kept his word.  He quit eating/drinking and spitting out his medications.  He's now in hospice care and mildly sedated.   He has lost 12 lbs in 2 weeks and is severely dehydrated.   We did have my dad transferred to the ER for dehydration and a UTI.  The hospital treated his UTI and gave him 1 bag of fluid and shipped him back to the nursing home.  They wouldn't /couldn't do anything else for him since he was refusing treatment.

 

It's very hard to watch him go through this.  I am angry at him for doing this and giving up on life.  I am angry at him for putting our family through is heartache of wanting to die.  The nursing home won't put a feeding tube in since he refuses to eat, knowing he would rip the feeding tube out.   Unfortunately he doesn't have a living will.  He's now in hospice care at the nursing home making him comfortable to his next journey.  When I visit, it's like watching him die.  I'm not ready to let him go.

 

I am looking for emotional support, it's quite difficult to deal with this and to support my mom.  I also work full time and have a 4 year old daughter.  The stress is over whelming. 


Nora
Posted: Thursday, September 27, 2012 9:26 AM
Joined: 1/23/2012
Posts: 2270


There are books written for young children about preparing for a grandparent's death; there are books written for adults preparing for the death of a loved one. But when you are feeling so overwhelmed and dealing with all the emotions involved in watching a loved one die, it is hard to concentrate on a book.

You mention your father has hospice at the nursing home. Please do contact the hospice social worker and arrange for some appointment time. He/she should be able to visit with you in your home, since you have a young child, or somewhere else if necessary. They are specially trained to deal with the many issues you are facing and can help guide you through and support you.

Another resource, also available at no charge, is a care counselor here with the Alzheimer's Association. Call 1-800-272-3900 and ask for a care counselor, a social worker who can help you process all this information and all your feelings. The hot-line is available 24/7 and if someone is not available immediately, they will return your call.

The folks on these message boards are incredibly supportive and encouraging. We know what you are going through, even though each of us experiences it a little differently.  We are here to care for you and about you and to remind you that you are definitely not alone on this awful journey.

God bless and keep you and yours!

Nora
swirlygirl
Posted: Thursday, September 27, 2012 9:33 AM
Joined: 8/27/2012
Posts: 30


I just wanted to say welcome and to let you know you are not alone in feeling stressed.

 

My mom is 88 and about stage 6 as well.  She also had a mini-stroke which put her in rehab, but she did not progress because her dementia prevented her from seeing that it would help her get better.  Her normal self would have done all she could to get better.  She also is in now in a nursing home for long term care.  The only difference is that my mom doesn't realize that it's a nursing home, so she is eating and taking her meds.  She has lost weight, but is pretty stable now. 

 

I had a real fear that once she was in a NH that she wouldn't make it long.  It's been 2 months and I think if she keeps eating and taking her meds, she will be around for awhile longer.

 

It doesn't mean I feel at ease or that I worry less about her, it's been the opposite.  I cry every day and when I leave after a visit I feel so guilty because I can't take care of her.

 

I feel like I've been watching her die for years now.  And it is hard, very hard.  I've started therapy to try to help me cope and I always thought that was something I would never need because I was a 'strong' person (a trait that runs in my family). 

 

This board has been more therapy for me than my therapist because I know everyone here can relate to what I'm going through. 

 

Hang in there and keep posting and let us know how you are.  Your dad, mom and daughter are lucky to have you.


PatF
Posted: Thursday, September 27, 2012 9:46 AM
Joined: 12/15/2011
Posts: 701


(((Prettybrowneyezz)))  I am so sorry that your Father has this terrible disease!  It is so devastating--and your Father is so young....

 

My Dad died from cancer at 75 and he fought a painful journey.  When Mom put him on Hospice I was angry at her, him and the Hospice people.  I am sure, now, that it was all for the best. 

 

Anger is one of the stages of grief that most people have to endure.  It is "normal" for us to feel this, and it does pass eventually.  As my Mom's primary care physician has explained to me, the choice of eating and drinking are the last controls that our Loved Ones have over their life.  My Grandmother told us that she would rather give up a couple years of her life than to end up in a nursing home.  It is possible that he is depressed and that he could possibly snap out of this stage but it is much more likely that he has made his choice.  Your choices are to accept his decision or to be angry with him for dying. 

 

As one who has been there, it would have been much better for me to help comfort Dad and the rest of my family than to try to make him continue to live.  Only you know what you can handle in your life.  You have the added responsibility of your little girl.  Please contact the 24 hour help-line here(1.800.272.3900) and talk to a counselor about how to get through this and help your daughter through it.  She will pick up on your feelings and it will affect the way that she will deal with death in the future. 

 

Other members of this board will chime in with wonderful advice, caring hugs and prayers. You and your family are in my prayers. 


GrandmaG
Posted: Thursday, September 27, 2012 1:12 PM
Joined: 4/29/2012
Posts: 775


I find it hard to believe someone in stage 6 can make a conscience decision to die. But if that's what your dad is doing, I admire and respect him for it.

 

 

 

 

Truth is, I've been watching mom die for over ten years, during which she's been near death numerous times.  I simply refuse to believe she would fight so hard if she knew what was happening.  I know if I had a choice, I wouldn't want to put my family though any more agony.

 

 

 

I think we all need to remember that AD is a terminal illness.  Our LOs will never get better and will definitely get worse.  With that in mind, I will find mom's death as a long-awaited blessing.


Still Waters
Posted: Thursday, September 27, 2012 1:17 PM
Joined: 2/6/2012
Posts: 1092


I think longevity has something (not everything) to with the human spirit.
Mimi S.
Posted: Thursday, September 27, 2012 2:03 PM
Joined: 11/29/2011
Posts: 7027


Hi all,


Prettybrowneyes has brought up a very touchy subject.

I'm writing from the perspective of someone with the disease. This is a subject that many of us with the disease have thought about and made our decision.

Dad has apparently made his decision. It's the same one I hope I will be allowed to make when the time comes. I have a Living Will that so states.

I have heard caregivers state they will never give up; they will fight until death. Stop and think. That's not what many of us with the disease want. Maybe Dad can't state his wishes in words, but his actions demonstrate it.

I can't say exactly when, but when most on-lookers would agree there's no quality of life left, I want my meds discontinued at an appropriate rate. Then just have Hospice make me comfortable. If the AD meds are designed to slow down the disease, why, at that point, would I want that outcome?


misscath007
Posted: Thursday, September 27, 2012 2:08 PM
Joined: 2/4/2012
Posts: 190


Sending hugs and prayers out to you. I have no real advice because my 85 yr. old dad is not yet at that stage of his illness. My mom passed away prematurely at age 71 of cancer and hospice was wonderful to her. It is VERY hard to go through the grief, I will not lie to you.  I still think of my mom  at least 3 times a day and she has been gone for 13 years!  Counseling and a support group can really help though.  I don't think I could be a caregiver to my dad if not for the support here and in my IRL group.

 

Also, calling the  Alzheimer care line can be  a huge help. They are wonderfully supportive and may be able to give you some valuable advice.


misscath007
Posted: Thursday, September 27, 2012 2:17 PM
Joined: 2/4/2012
Posts: 190


Mimi S. wrote:

Hi all,


Prettybrowneyes has brought up a very touchy subject.

I'm writing from the perspective of someone with the disease. This is a subject that many of us with the disease have thought about and made our decision.

Dad has apparently made his decision. It's the same one I hope I will be allowed to make when the time comes. I have a Living Will that so states.

I have heard caregivers state they will never give up; they will fight until death. Stop and think. That's not what many of us with the disease want. Maybe Dad can't state his wishes in words, but his actions demonstrate it.

I can't say exactly when, but when most on-lookers would agree there's no quality of life left, I want my meds discontinued at an appropriate rate. Then just have Hospice make me comfortable. If the AD meds are designed to slow down the disease, why, at that point, would I want that outcome?

Mimi, I very much agree with you! Your post really had me in tears. My dad signed a living will 4 years ago when he was still able to make a rational decision about his end of life care. He does not want his life to be prolonged through artificial means. When that time comes, we will call in Hospice and he will have a death with dignity. I would never think of keeping someone alive against their own wishes! Having said that, it is still a painful process for the family to go through... make no mistake.

 

I  was not ready to let my mom go when she passed away(not from AD). Her death came as a suprise and brought up  grief that I am still battling to this day.  I had little time to prepare for her passing. It will be very different with my dad.

 

 



EFT
Posted: Thursday, September 27, 2012 3:58 PM
Joined: 12/16/2011
Posts: 393


Prettybrowneyezz, I am so sorry you are faced with such pain. I watched my father die of cancer years ago, helplessly stood by as my brother drank himself to death, and now am watching my mother slip away from me with Alzheimer's and vascular dementia. It is a devastating path that I did not ask to travel. 

 

 

Angry? You bet I am. My anger is not, however, aimed at my mom. She didn't ask for this either, just as your dear dad did not ask for this disease. I have often wondered what I would do if faced with such. None of us can say for sure, but I like to think I could make peace with it all and decide for myself how my life ends. For me, quality of life trumps quantity of life every time. And I would hope those close to me could respect that. 

 

 

With that said, it is so vitally important that you release the anger you have with your dad. Be mad that this disease is cruel and heartless. But don't be mad at your dad because of his choice. As hard as it is to watch, and as helpless as you feel, it may be that your dad feels he is saving you from much more heartache as this disease progresses and robs him of all his memories and all of his ability to do anything. 

 

Your dad needs you to simply love him and be with him, to be assured that you and his beautiful granddaughter will be ok, that his wife will be ok. Don't let the last moments you share with him be filled with anything but love and respect.

 

(((Hugs)))

Ellen


dayn2nite
Posted: Thursday, September 27, 2012 4:19 PM
Joined: 12/18/2011
Posts: 3097


I understand you being angry about the situation, but please don't be angry with your father.  He has no ability to reason anymore and did not "decide to die."  He's just declining and that's the disease.

 

What you can do is put aside any anger or blame toward him and know that you have a limited time left with him.  Show him how much you love him, tell him over and over that you love him, hold his hand, and do all these things from this moment on because one day you won't be able to.

 

You can feel anger and hurt later.  Now is about him and supporting him.


bela
Posted: Thursday, September 27, 2012 5:37 PM
Joined: 12/15/2011
Posts: 4122


In a grasping for straws sort of sense, is there an anti depression patch?  lots of medications now come in patch form so check it out with a pharmacy!! if the exact medication is not available in patch there is generally an alternative patch med.

 


silentlove
Posted: Friday, September 28, 2012 12:02 AM
Joined: 9/6/2012
Posts: 106


Hi Prettybrowneyezz,

First of all, I am so truly sorry for the pain and suffering of your dad and you.  So not fair any of us have to go through this.  It's not fun for sure and definitely SUCKS!!! This is my experience with a LO not eating:

Sounds a little familiar to me.  My daddy died when I was only 10 years old from lung cancer so I didn't really get to know him like I wish I could have.  Taught me how to play softball, basketball, and just love to be outdoors.  He was a great daddy from what I remember.  So now move ahead 35 years in time to my Uncle, daddy's brother, wanting to move in with me.  I jumped all over that.  For me it was like having a part of my daddy with me.  Only this time I get to learn about his life, childhood, and really grow to love my Uncle who reminded me so much of my dad.  Sadly, a year and half after he had moved in with me he started going downhill. He had been on 4,000 mg hydro for pain a day and this still was not working.  The Drs wanted to keep running test on him to try to find out what was wrong.  Not sure why cause he couldn't have any surgery done with only part of one lung from lung cancer 40 years previous.  Yes he was cancer free for 40 years. Tough ol' fart!  After a dr visit one day he said he was done!! No more Dr.s!!!  'I just want to be comfortable.'  It hit me like a ton of lead as I had taken care of MIL the year before he moved in with me only to watch her die from mastatized breast cancer.  So I kinda knew what was comin'.  That next week we called hospice and they came right in. He was feeling good cause no more pain, then about 5 months in with hospice he says, 'I'm not sure if I'm doing the right thing or not.'  He asked for me, my husband, and my mom(his sister-in-law) to come sit on his bed cause he wanted to talk to us. My heart sank hard.  First he sat there and cried, weeping with the silent whimper.  Since mom had lost her speech from AD all she did was sit next to him with her arm on his shoulder with tears running down her face.  Finally he mustered up the words, ' I love you all so much, I am sorry, but I am so tired and I'm done'. Well, that was it!!! He quit eating, and wouldn't drink anymore either. I offered every meal and drinks all day.  Even making his favorite meals, ensures, anything.  But he would take nothing.  After the 4th day he was oddly happy and laughing.  He said it was hard to explain but he felt the best he had ever felt and had this strange kinda of calm about him.  He explained as 'Euphoria'.  Then came the silence. For the next 3 days came the hardest days of  my life.  Finally on the 7 day came his final rest.  He died at a little past midnight in my arms. 

What I gleaned from this life changing experience?:  I loved him as my father, still do, and I have no regrets.  I did all I could do and supported his decisions, not mine.  It was his choice, not mine.  Although, maybe your dad doesn't know what he's doing, but maybe he does.  Some things we have no control over and just letting go is so hard!!!!! Not sure if you read the Bible but it calls death our Enemy. That is a FACT!!! Totally against us and we hate it.  Just one thing, have no regrets.  Be there for you and for him.  I know enjoyment is hard to do at this time, but something, anything, just sit and hold his hand, something to find some joy in these last days with him.  

I truly believe the trials and obstacles we face only make us stronger to handle the next trial and obstacle.  For me, I am now facing my biggest one of all, my momma slowly being taken from me with AD.

Know we are all here for you and for support.  My thoughts are with you and your dad!!!  *; ;*


NotReleased
Posted: Friday, September 28, 2012 4:09 AM
Joined: 9/23/2012
Posts: 1


My Aunt guessed in 2008 that my Dad was in the beginning stages of Alzhiemers. It wasn't until early 2010 that he was diagnosed after going off the deep end October 09 and created a huge family war, to which I was the bad guy and all my worthless relatives came out of the woodwork to stand behind Dad. After a few weeks they decided the "outburst" was caused by some new medication but the tests clearly showed shrinking of his brain. Doctors were amazed he could even walk given some of the areas of the brain that were most affected. It got very ugly but eventually the leeches took what they could from Dad and crawled back into their holes. I was asked to move back to the family farm because I have been the only child my entire life who has gone out of the way to help my parents and Dad knew no one but me would be willing to help my mother without getting paid!

 

Dad is 79 now, stage 4 or 5. Mom is his primary care giver and it is taking a huge toll on her. When he got the diagnosis they talked to the doctor about ending his life when he got too bad. They discussed how and when to do it and that my mother needed not to be there. He then said, more then likely Dad would never realize how bad he was. I believe that to be true, because he has no clue.

 

Dad has always been an angry, abusive. Physically abusive to his 4 kids and verbally abusive to my mother who is 11 years younger, they have been married 49 years. I was his favorite target, because we are very much alike and head strong. I have hated him my entire life. My skin crawls if he even touches me. Don't get me wrong, I respected the hell out of him because he knew everything and could repair or build just about anything and I do feel sorry for him. I feel more sorry for my Mom and as the days go by I regret agreeing to be here because I get blamed for all his imaginary problems (things he looses, if he trips over a stick in the yard or just about anything that goes wrong is my fault and he yells and screams, sometimes he threatens physical violence. My 18 year old son lives here too and Dad gets pissed at him for nothing and 2 months ago he was pounding on his bedroom door threatening to go get his gun and shoot him. My son was smart enough to jump out a window and take off for a few hours.

 

I wish my father would take his own life before my poor mother is dead broke and just too depressed to go on. Dad is "the boss" so he buys things, things he doesn't need, things he already has 2 or 4 or 8 of. He bought a new welder last week but 6 months ago we found 2 brand new unopened welders, so he gave the extras to my nephew. He bought a new chop saw but he already owns 3 so he gave one to my nephew. It is ridiculous but Mom is such a "mouse" that she won't argue with him or stop him from spending money, she says it just isn't worth it. He still drives!!! He has had half a dozen accidents this year but cant report them to insurance because his score is already a 10 soon to be an 11 for a hit and run where a cop came to the door to get him! Some days mom is just so glad he is out of her hair she doesn't care if he is driving just so long as he is away from the house! I worry he will kill someone but since they do not tell his doctor how bad he drives no one is going to take his license away.

 

I have no idea what is going to happen in the future but I know I will continue to be a target and I am going to wish every day that he would just die already. This is just so hard on my mom. She watched her Mother die of cancer. She took care of her fathers second wife while she died of cancer, then she took care of her Dad while he died from a blood disease. 3 1/2 years ago before they move here to the farm she was taking care of Dads sister for 6 years until she died days before they were all moving into the bigger house. She has spent so many heartbreaking years watching people die, long and painful deaths that I fear she won't make it through this one.

 

 


mish
Posted: Friday, September 28, 2012 7:01 AM
Joined: 6/21/2012
Posts: 439


hi, I am 43 with eoad and I have a living will and i  feel similiar to mimi, I dont want to be on this earth when the time comes that I am unaware and unable to function as a "whole person". This is out of respect not only for myself but for my loved ones as well. This is only my opinion. I will pray for you and your family. I am sorry you are going through this.

Mish


Mimi S.
Posted: Friday, September 28, 2012 9:12 AM
Joined: 11/29/2011
Posts: 7027


Hi Not released,

Would you please call the help line: 1-800 272-3900 and talk over your situation. First, ask for the number of your local chapter so you may also contact them.

Call as soon as you read this.


Geegee
Posted: Sunday, September 30, 2012 12:49 PM
Joined: 11/29/2011
Posts: 514


prettybrowneyezz, I can hear how hard it is for you to accept your dad's rapid decline.  I'm sorry!  I,too, have AD and I'm several years younger than your dad.  He is still young and I know you don't to want to let him go yet.  I doubt if he would be "giving up on living" if he had any choice or the ability to change the course of this disease.

They are aware of at least 1 mini-stroke, but his brain is going through drastic changes beyond his control.  Please, Strive to work through your anger about this disease, and realize that your dad, in his opinion, he has no quality of life left to live.  

He may have given up on his life, but he has not given up on you.  


Please call our 24/7 Helpline and ask for a Care Consultant who can help you with this hard time.  They are well qualified and knowledgeable about lives that are coping with AD issues.  1-800-272-3900.  


Please talk to a Hospice counselor that in your area for added support.  I hope you will also keep Coming back to our Boards often and let us be a shoulder or ear to give help you.  We can try to understand.  


Geegee
Posted: Sunday, September 30, 2012 1:17 PM
Joined: 11/29/2011
Posts: 514


Hello, NotReleased.  I can understand why you are at your wits ends and I'm so sorry  you and your mom have to face your dad's abusive behavior. Calling the Helpline 1-800-272-3900 should help get you some much needed guidance and help.  You need all you can get because you are in an unsafe environment.  Obviously, someone has to intervene with his driving and behavior!  We're so glad you reached out here for help.  

You are facing issues that everyone on the boards has to deal with in some way.  However, you are going through much anger because of the abuse that sounds as if it has always existed. 

Is he on medication to control Any of his symptoms?  I would like to ask you more questions, but I think it is IMPERATIVE that you call our 24/7 Helpline immediately!  Ask for a Care Consultant.  They are trained to offer help and reliable advice.


If you could go to the top of the page, and go back to Message Boards, you can "start a new discussion".  All responses will be just for YOU on the subject.

Let's us hear how you are.

Geegee

I have AD but I look for the Sunshine in each day.

Look for the Sunshine in your day!


jereo
Posted: Thursday, November 7, 2013 8:59 PM
Joined: 11/7/2013
Posts: 29


I'm in my 18th month with ALZ and have been giving a lot of thought to "The End". When you have a terminal disease, all the tears and prayers in the world are not going to lengthen your life. Caregivers and loved ones need to realize this point. There comes a time when you just have to give your loved one up to God. Make them as comfortable as possible, feed them as best you can and make sure they know you love them. Keep tending to them and do not let them know that you see the end in sight. Let them keep fighting as best they can (or want to).

Look back and see that you have done your very best for them. Then, let them go. Keeping them here is just prolonging their pain and misery. You must forget about your pain - it just doesn't count now. 

They will know that you loved them for your entire life and still, here at the very end.

If they seem to have given up, that's okay. It was a conscious decision and what they have decided is the best thing. While you love them, remember that they love you too and may have decided to take care of you just one more time. Give them that one last favor, as a token of your love.


KBG
Posted: Thursday, November 7, 2013 10:46 PM
Joined: 7/30/2013
Posts: 161


Jereo,  I cannot tell you how much I appreciate your post.  It hit me on two levels.  First, my husband has VD and is stage 6.  I still remember the proud man is was before this disease and will honor that, regardless of my feelings - because I do love him.


My father died a few years ago.  He had a pacemaker that needed replacing.  Simple surgery really.  He must of had a premonition.  A couple of days before his surgery we were having lunch and your words were his words.  I knew he had a living will and advanced Directive.  Long story short, upon admission, there is a form that needs to be filled out by the patient regarding life support (DNR).  He put it in his suitcase and forgot to turn it in.  We didn't know.  During his surgery his heart stopped.  It took them many tries and too many minutes to revive him.  The pacemaker was not completed.  The doctors told my mom and I that his kidney's had shut down and would need dialysis.  He also said he was sure there was brain damage due to loss of oxygen for too long. 

 

He had been this way for two days, he was being given medication so he was out of it most of the time.  I kept remembering what he had told me but i really thought he would pull through.  I was staying with him 24 hrs per day.  Day two was his birthday and he would wake up and ask me what time it was constantly.  He couldn't have known it was my birthday but he kept asking.  At 2:00am he asked me for the last time.  At 7am the next morning, I told him I was going to run home and take a shower and be right back.  He looked at me, smiled and told me he loved me so much.  20 minutes later he died.  I got the call got back to the hospital and they were still trying to recesitate him.  I screamed for them to stop.  That stupid DNR was in his suitcase.  This was the hardest thing I have ever done in my life but it was what my Dad wanted.  He waited until after my birthday and when I had left to take a shower before passing.  We can and do choose our time, no one can convince me otherwise.


I pray I have the strength again to do this for my dear husband.


SueK
Posted: Friday, November 8, 2013 6:36 AM
Joined: 8/28/2012
Posts: 318


jereo - thank you so much for your post!  My mother had a living will for years - DNR, no feeding tube, IV hydration, etc.  She went on hospice in May and stopped eating on June 10, 2013.  I followed mom's wishes, but it was hard to watch her waste away, and harder still when family members pushed me to do something to stop it.  When she died on August 1, I felt so guilty, like I just let her die.  Your post, more than anything anyone else has said, let me see it from her side.  Thank you.
jereo
Posted: Friday, November 8, 2013 9:57 PM
Joined: 11/7/2013
Posts: 29


Dear KBG, I'm so sorry to hear of your loss! You must have loved him deeply! I pray that you are now at peace with the loss of such a close relative and that you, too, are on the road to recovery.
jereo
Posted: Friday, November 8, 2013 10:04 PM
Joined: 11/7/2013
Posts: 29


SueK, I'm so sorry for the loss of your dear mother! It's really hard to lose someone you loved so much. Thank you so much for letting me know that I helped, even a little bit.
jereo
Posted: Friday, November 8, 2013 10:09 PM
Joined: 11/7/2013
Posts: 29


KBG, I have an afterthought about your situation and wanted to advise you that anyone in the hospital who is terminal or could die there should file their DNR with the hospital. I don't know that there is any guarantee that the DNR will be observed, but at least you'll have grounds to raise cain if the don't!

Love, Jere


KBG
Posted: Friday, November 8, 2013 11:34 PM
Joined: 7/30/2013
Posts: 161


Hi Jereo,


You are correct with the DNR.  The issue with my father was that a replacement pacemaker is usually a relatively simple procedure.  Minimally invasive.  No one expected him to die on the table. The fact that Admitting gave him the DNR to fill out and return, is my issue.  Why wouldn't they keep him in admitting until he signed the paperwork, keep it with all of the other paperwork?  

It did really break my heart to see them beating him on the chest for such a long time, knowing it wouldn't work and my Dad wouldn't want to survive with the issues he would have faced with brain damage and kidney failure.  All this because they let him walk away with the DNR instead of turning it in.


Oh well, we all learn from these things and I know I did honor his wishes at the end of the day.

Take care!


 
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