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daddownunda

 Should an adult anorexic be able to starve themselves to death? 11  votes

 Yes 1 vote
9%
 No 10 votes
90%
This poll has been closed.
After ten years with anorexia my 23 year old daughter has suffered extremely and I never thought I’d say it but death may now give her peace. She has been house bound for the last 4 years and had little human contact in that time. After many forced hospital admissions to save her life in recent years she has responded negatively after each one. The last one nearly 18 months ago was during a 12 month community treatment order. After discharge that order was removed. She now lives locked away with her grandma and has no other human contact of any sort. She refuses any form of support and contact. She says she has the means to quickly take her life if intervention is forced again.
When I say her case is extreme I mean she hasn’t followed the typical path of anoxia suffers. I know no two cases are the same.
Its difficult to get the professionals to listen when you tell them she hasn’t consciously swallowed food for years. She has never binged or purged. She exists by chew and spit. Somehow she has stayed alive.
Her body as she describes it has deteriorated in a way that the hospital crew couldn’t explain during the last admission where she almost doubled her body weight in the last four weeks of admission. They thought she was eating food as well as tube feed. She wasn’t. Her muscles and organs are so extremely wasted that the weight addition has just meant a body covered in stretch marks. Her BMI hovered around 11 for the last few years now it has weight it can hardly stand with. 
I can go on with more about her state but won’t.
I think the community treatment order that forced her to stay alive should remain in place until she recovered to an acceptable level to be able to stand and walk ( wheelchair started 4yr ago) and engage in treatment. Psychologist needs BMI 14 before they’ll take your money.
Cancer sufferers can choose to die but my daughter is not of sound mind. She’s had no medication for 18 months.
Anorexia has the highest mortality rate of any mental illness because we let it.
We is family, medical system and government. When the family is utterly exhausted after so many years and has tried all the best practices the country has, the medical system will only provide a safety net if government supports the cost.
I’ve contacted  state and federal health ministers.
I encourage all parents in all countries to do the same. 
Any death from anorexia should be avoided. 
My daughter wants to live and she wants to be able to help young girls avoid anorexia. I think she will save many more than the current support systems. Her online presence will tell a powerful story that suffers will listen to and trust.
I fear she won’t live to do this.
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kazi67
I feel for you and your precious d
im so sorry to hear of the terrible pain and suffering she and your family have been through 
how desperate you must feel to think you d would be better off not here 
i feel it is absolutely discraceful  that the evidence based treatments aren’t given to the patients who are desperate for help no matter where in the world we live 
Whilst our governments waste our hard earned taxes in many other areas
ED and mental health is sadly not on top of their priority list although I think more is being done in this area
at the start of our journey Butterfly (leading organisation here to go to for help) advises me to buy a book 😳
thanks for the help ☹️
And how much $$ do they get from govts
i did in fact read the very good book recommended by them but I look back and think if only they led me in the right direction 
and advised me to get my d assessed and taken our case seriously my d may be much better now 
rant over 
I do wish you and your family the strength to continue to support your d 
x
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Foodsupport_AUS
It is so hard to know how to respond to this question and there is no "right" answer to it. 

I am so sorry that your daughter is continuing to struggle so much. It is a terrible illness and there is great suffering with it. The concept of allowing someone to die from a treatable illness goes against the grain for me, yet at the same time for some there is so much suffering that it can seem the logical way out. That then raises the question of how much suffering, and what degree of suffering is expected before deciding that end of life care is preferable to continuing to fight. 

Having met people where end of life care was undertaken, who have survived and recovered I am not really sure how any of us who haven't been there can make the decision for someone else. 

I do think that there needs to be better support, and more co-ordinated support for those with eating disorders and their families. Things are changing in Australia and have changed in the last 10 years since my daughter got sick. Changing health systems, education of medical staff/therapists, co-ordinating continuing support all takes time and money. Eating disorder organisations such as Butterfly foundation and EDV and others are slowly coming more and more to see families and caregivers as part of a treatment team, even that is slow and evolving. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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IdgieThreadgood7USA
I feel agonized by your story. What is clear to me is that being hospitalized, sectioned, force fed and treated for the last ten years does not equate to effective care. Of course it’s complex because effective treatment is in its infancy and in the name of trying to keep her alive, they have not yet found the needed treatment plan which of course can evolve and change over time. Our daughters are not the same although mine is now 29 and has struggled since 19. 
She has also been hospitalized for most of those years with brief time in out patient or home. She is also isolated by her anorexia. We HAVE finally in the last 2 years able to ACTUALLY weight restore and maintain. She has been home for the last two years without admission. Now it appears you are not in the US. We are. We have really good health insurance that we fought for her care and she has had meal coaching daily, individual therapy 2-3 times a week, nutritionist initially weekly who managed her weights and meals, a psychiatrist and a medical doctor.
this took a great deal of fine tuning AND she’s still living at home and struggling through the isolation that ed brings. It’s the next phase of treatment. For my D it is definitely OCD unrecognized,undiagnosed or treated that probably precipitated her anorexia. 
This i know. With every fiber of my being, i will not stop fighting for her. During her course of illness she begged for palliative care. She made good arguments as she felt her suffering was too long and too much. I empathize with her pain and REFUSE to accept that she Cannot find relief. 
It does take a tremendous personal and professional commitment to get her where she is now. 
I say fight for someone professional who will commit to her trust and fight the illness with you. 
I am sending you tremendous hugs and strength. 
"Sometimes you just have to be your own hero"
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debra18
There was a speaker at the FEAST conference that spoke about a new treatment in Australia for severe cases where they send brain waves specifically to the brain. Does anyone have information about this? It might be worth looking into. 
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LauraCollins_US
I've known families who were told to give up, even one told to make funeral arrangements, who now have recovered children. Recovery is not possible for some, but I'm not sure we know who that is true for until the end. Most ED patients do recover, sometimes after many years of dire illness. It is a symptom of their disorder to be driven to starve and to die, not a choice. The question is what we as families and health systems and legal norms do in response. 
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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tina72
Here in Germany an adult or a child is not allowed to starve themselves to death. There is a law that if you cannot care for yourself you get admitted by court and our new GP told my d in the first appointment that he will not struggle to get her to court if needed and that he will not watch a patient die because of AN and that was a really good thing for her that he said that that clear and direct.
Keep feeding. There is light at the end of the tunnel.
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Juno
This is such a difficult and heart-breaking question. I have no magic answers but I do know of two strong Australian women who have come through to the other side after a very long and difficult battle. One is Shannon Calvert who traveled to NYC to speak at this year's conference for the Academy for Eating Disorders. Shannon serves on a committee with me and, though she was ill for a very long time, now considers herself fully recovered and is using her second chance at life to help others. (On twitter she is @calvert_shannon). The others is June Alexander. She was ill for decades and, as a grandmother, completed a PhD. She's written some great books on eating disordes and other topics (thediaryhealer.com). Wishing that some of their story of hope is helpful to you and gives you or your daughter some strength and hope to keep going for another day.
Mom of a younger outpatient
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mjkz
I've been faced with this for the last 3-4 months myself as my daughter who is mid 20s relapsed hard and fast after years of doing well.  All she wants is to die but I can't accept that for her. I've seen her do well and I know she is capable of it.  I too am exhausted and when she comes home I'll be hiring people to help keep her safe so I can have some sort of life too.  Your daughter is still alive for a reason.  If she has the means to end her life and really wanted to die, she would do it.  Our kids give us mixed messages (so we can see what is going through their minds all the time) but we have to keep pushing to find the resources and energy to keep them going when they can't keep themselves going.  My daughter is under a conservatorship so you might look into that.  See if you can get the CTO back in place.  Get her out of the house even if she doesn't want to leave.  My daughter is going back to mandatory volunteering as soon as she is out of the hospital with her tube.  It has been the best thing I've found to get her out of her head and paying attention to other people and life in general.  It makes her feel a part of something.
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deenl
I am wary of posting on this thread as I do not want to inadvertently say something painful. All loved ones and people with severe and/or long term eating disorders have my admiration and respect. I do believe (only from reading though) that recovery is possible even after long periods of ill health so there is hope. However, it is also true that we do lose some people due to the strength of their illness, multiple c0-morbid  conditions and poor treatment. This is heartbreaking to me and I could not answer the question above. I would not deign to come to any firm decision while I have no personal experience of a loved one experiencing such a difficult time. I imagine the answer would be different depending on many different components of the situation.

Sending all who are living in this dark place my love and respect,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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daddownunda
Thank you all for your heart felt responses
ive about had it with this website, it’s shocking 
if someone can through this up from Daddownunda as a new post it would be great !

This may be my last post.
Does anyone have experience with skin treatment that will enable stretch mark removal
 If we can find a positive answer
that stretch marks can be removed 
my daughter may commence recovery. 
If not, she remains stuck and nearly out of time.
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deenl
I'm not sure that I follow your post. If there are any issues with your account then please contact one of the moderators 

Warm wishes 
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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melstevUK
daddownunda,

I hear your frustration and distress - I didn't reply personally to this question.  The contributors to the discussions on ATDT want the very best outcomes for the loved ones of everyone who comes onto this forum, and aim to support parents and carers and help them in each and every individual case.

I am hugely sorry that you clearly feel let down by us.

What is it that you feel that we did not provide for you?  
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
I would add that I would be reasoning with your d that in the bigger scheme of things, stretch marks are unimportant, and in any case if she were to put weight back on they would probably disappear.  

We can never ever make our children well or happy by trying to meet every (unreasonable) demand that their illness places on us and them.  If someone puts up your questions on a separate post I will answer more fully. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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daddownunda
I think I put up a new post after adding this comment yesterday but can find the post. It was about stretch mark removal. Can anyone find the post?
I am looking for reputable advice on this subject urgently to be able to give my daughter evidence that she will be able to work with professionals somewhere in the world to clear the stretch marks. 
She is near death and will start to attempt eating if I can give her this reassurance. After nearly 10 years of anorexia she is for the first time saying she wants to get well. She is bed ridden and extremely ill. 
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tina72
I do not know if that helps you but I asked a friend who is an aestetical doctor here and he said that stretch marks can be removed with laser quite well.
https://www.aesthetipedia.com/treatments/photofractional-for-stretch-marks/
https://www.medicalnewstoday.com/articles/312975.php
I had a lot of white stretch marks because of pregnancy at my tummy but they all disapered after birth with some time x (I would say about a year) without doing anything about it.

If that is what might get her to eat I would tell her that there are different aestetical options to get rid of that when she is recovered (because in her bad state no clinic would take her) and that you will pay for it when she is there.
Keep feeding. There is light at the end of the tunnel.
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daddownunda
Hi Tina,
Thanks so much, your response has been the best I’ve ever had of any on this forum to date.
I’m hoping for a few more.
I have a separate post put up just a couple of days ago asking about stretch marks but I’m not sure if 
anyone is seeing it. I’m finding the new website layout difficult to navigate and hope newcomers persist with it to get the guidance they need.
Thankyou again you’ve been a great help.
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Foodsupport_AUS
Daddownunda I don't think your other post went up. We now have a new user guide to the forum which has the new layout on it.  https://www.aroundthedinnertable.org/post/forum-welcome-and-user-guide-9806898?pid=1304966611&random=919
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom
Daddownunda,
I would strongly suggest you and your d get proper medical advice from her own doctors and if she is not seeing someone then that needs to be rectified. We cannot give any medical advice and are not trained to do so.
your d should be monitored very closely by a medical team. Unfortunately only someone ie a trained professional who has actually seen and assessed her properly can give you the answers you seek.

I wish you the best
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
I am not sure what is available in your country, but maybe getting a home visit with a doctor or nurse would be helpful. They could assess her medical stability and other needs. 
Some doctors/teams in my country do home visits/house calls.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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v1215
debra18 wrote:
There was a speaker at the FEAST conference that spoke about a new treatment in Australia for severe cases where they send brain waves specifically to the brain. Does anyone have information about this? It might be worth looking into. 
  
I've read that those with eating disorders have low alpha brain waves, possibly that is what you are referring to?  I've also read about boosting those alpha brainwaves via bianural beats.  It is an interesting idea. 
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Mamaroo
daddownunda wrote:

I have a separate post put up just a couple of days ago asking about stretch marks but I’m not sure if 
anyone is seeing it.


Here is your stretch mark post:

https://www.aroundthedinnertable.org/post/stretch-mark-removal-10123935?pid=1308464396
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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