F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Foodsupport_AUS
FEAST is starting a new series of Facebook Live events on Thursdays on difficult topics in the eating disorder world. 

As part of this the first topic is going to be on Euthanasia and Assisted Death. 

FEAST now has a position statement on this truly heartbreaking issue which arises from time to time. 

https://www.feast-ed.org/euthanasia-and-eating-disorders-context-and-media-coverage/

This is the link to the FB event flyer. https://www.feast-ed.org/event/euthanasia-and-eating-disorders-media-coverage-context-and-anguish/
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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sk8r31
Thanks for providing links to the FEAST Position paper and to the FB Live event.  It is a  very tough topic indeed, and one that has been discussed a bit on the forum.  I'm glad that our community is not shying away from discussing these very difficult issues.  I plan to join the FB Live event.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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debra18
This is such a sad topic. I think part of the problem is carer burnout and it is so difficult to see your kids suffering. 
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kazi67
Before my d became ill she was full of life, a bundle of energy, fun, and laughter a joy to be around 
she had the world at her feet and opportunities to travel the world,  was a hard worker and loved by all

then AN came to visit 

when she first became ill she withdrew became anxious and depressed and started to self harm (we didn’t realise this was the beginning of a very long road of pain and suffering) once in the thick of the AN she wished and expressed all she wanted to do was to die and the SH became worse 

On her second IP admission I must admit I nearly gave up on her, I felt defeated by the illness that had consumed her mind and body 

thank god the treatment team did not!!

still I did not want her to die I just felt I had no control, no hope, and I myself was not able to “fix her” and I was burnt out physically and mentally 

2 1/2 years later my d is back to her normal happy loving energetic self 

she brings me and everyone who is lucky enough to come in contact with her joy laughter and love, she warms my heart everyday and I and our family and friends are blessed to have her in our lives and we are SO proud of her 
she is working 2 1/2 days a week, volunteers 1 day a week, socialises and is enjoying life again 

her struggle can still be daily though
she still needs support, encouragement, and  lots of love and of course FOOD!

Is it/has it been easy?? NOT AT ALL
Has it been worth it ? HELL YES!!!!

i would oppose any bill for euthanasia or assisted death/suicide in the treatment for ED!!!!

arent doctors meant to preserve life?

thank you FEAST on your statement!

parents/carers and patients need to know they are not being given up on!!

my d would  not be here if they granted her her wish back in the dark days in treatment when she felt herself a burden to us and a complete failure in all areas of her life

this is my opinion and I just felt the need to express

i do not have face book and wanted to give hope to anyone reading the heading and possibly feel this is what their future could look like

i hate to think euthanasia as a treatment option or assisted death/suicide 

again I wish to thank FEAST on their statement and I do hope those with the power on the board do in fact make some noise and appose strongly this line of thinking as we do know with the right treatment/support this illness is in fact treatable and patients CAN recover!


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debra18
Kazi what you wrote bought tears to my eyes. Yes the kids need their parents to pull them through and parents need outside support to pull them through.
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kazi67
Thanks debra18
im finding this idea very disturbing actually 
unless I’m just misunderstanding the whole thing

i recently did a suicide intervention course and I was pretty much told there a person has a right to suicide..........wtaf? ok? NO not MY kid........sorry absolutely NOT!!!

i absolutely could not agree and as mother, if it involves my kid sorry but I’m going to do everything I possibly can to prevent that outcome 

yes support IS needed for both patient and carers

thank you to FEAST as really I found it hard to get support anywhere and then after going to that course to be told that I was just thinking what the hell

i expressed if someone had a mental health issue be it AN, depression or whatever they are not in a mentally sound place to make that decision and as it is treatable (if caught early enough and of course even later it still can be treated) and isn’t terminal how could any one possibly think it’s a good outcome 

can you imagine if we were given that option when when my d was gravely ill?

maybe this is all going to be discussed on the live face book live event? Idk?I hope so

just imagine your d being over 18 so treatment have given her the option to not include you, she can then make this sort of decision?? Is that what they are thinking? seriously surely not?
what is the world coming to?

if this is the case then these people do not understand ED’s and the effect on the brain and thinking, as the people at the course I attended did not either and let’s face it most people don’t understand and even some GP’s, Dieticians either

Is the thinking that’s it’s more cost effective to assist in someone’s death than long complicated treatments???? 

i am hopeful and sure all the board and members of FEAST will stand up against this ridiculous idea


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Foodsupport_AUS
Thank you Kazi for your thoughts. I agree this is something that we never want to think about, and definitely not what I would put out there as a treatment option. Unfortunately there are both parents on here and in the wider community whose children have either requested this as a "treatment option" or alternately even worse someone has suggested this. Some parents have even supported their child in this. It was for this reason that FEAST thought a statement was appropriate. 
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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debra18
I am finding this very traumatic also. Noa was not even 18. I am sorry for her parents that the providers gave up. We can in her memory support parents and encourage them not to give up.
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yellowcaty
I don’t think I could keep going without that tiny hope that things can get better. This illness is brutal. I spent last night in A&E where they were stitching the arm of my beautiful baby for the forth week on the run. It was heartbreaking to see the scars that cover her arms. There are times when it feels so tempting to give in but posts like Kazi67 keep me going.
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sandie
@yellowcaty i am so sorry to hear about how tough things are for you and your D right now. Sending you a hug.
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debra18
That's what we are here for. To keep everyone moving forward so they can keep their kids moving forward.
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kazi67
Yellowcaty
I’m so sorry to hear your update
i can’t imagine the pain both you and your precious d are going through right now
you are in my thoughts and please please don’t give up on your d 
she needs you!!
i know when my d was IP and I felt so low as I actually didn’t think she was ever going to get better (I couldn’t post on the forum on ether of my d IP stays)
when I would read the posts here it made me feel like a failure and make me even sadder as everyone’s  kids seemed to be doing so well 
please look after yourself Yellowcaty 
I know it’s really really hard, and it sucks, it’s not fair and it’s such a horrible complicated complex illness and our d were very unfortunate to win the lottery to get this disease 
but there is ALWAYS hope
you are a warrior mumma doing your best 
we are all thinking of you and your d and sending you strength, support  and the courage to continue 
i hope you can do something nice for yourself today 
big hugs xx

Foodsupport_AUS

thats really upsetting to know 🙁

just want to say again to FEAST thank you for the statement 

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Foodsupport_AUS
Yellowcaty, I am so sorry that things don't seem to be improving now. It is so hard to watch our children in such pain, but also so important to keep the hope alive for them when they don't have any. My D is testament to that. 

We have featured in Kartini clinic's blog - they also support FEAST's position. https://www.kartiniclinic.com/blog/post/guest-blog-f.e.a.s.t.-on-euthanasia-and-anorexia-nervosa/

Please join in on the FEAST facebook page - link above later on today. 
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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Foodsupport_AUS
June Alexander has also written a heartfelt blog on the topic of euthanasia and assisted dying, along with supporting the FEAST position statement. https://www.thediaryhealer.com/2019/07/09/euthanasia-and-eating-disorders/?fbclid=IwAR0huAivjUKXYLbYeE5skTpSA4OgnjRco_u_NV4BwcLDbHauGRTG2zCEgLc
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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LauraCollins_US
Looking forward to seeing many of you later today. Our voices matter. It's a truly tough topic but if not us, then who? Let's speak up for those who cannot.
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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Ellesmum
Thank you to everyone involved, fascinating and important topic. If only our teams  would catch up and know what we parents know...
Ellesmum
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sk8r31
Powerful and moving.  Thanks to all who shared their lived experiences, and to clinician and F.E.A.S.T. Advisor Jacinta Tan, along with those who participated with their comments during the FaceBook Live event.  It is archived and available to watch when you have time.  The link is here.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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debra18
Thank you so much! 
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Foodsupport_AUS
This was very powerful. It raises many issues of care in general as well as the issue of palliative care and what that may look like (not what I had thought), along with issues of capacity and care. 
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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peregrine_USA
Thank you for the link to watch the discussion.  I needed to leave.  Somewhere along the line I missed, apparently, the news that a bill has been proposed to allow euthanasia specifically for ED.  This astonished me that there would be a bill that is so specific.  I hope there is further discussion, particularly for the individuals who are dx’d as SEED, to identify other means of care.  I needed to leave shortly after Dr. Tan (?) brought up the subject of palliaive care - a topic that needs more discussion, I think.  Thank you for this discussion.
Peregrine_USA
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peregrine_USA
And a PS.  In a nutshell, here is our family’s situation:  
1) there is only one place in Arizona where my daughter can be forced to go and that is the State Hospital.  She is court ordered which means she can be placed there.  We actually went to Court and the State Hospital refused to take her because they said they do not treat earing disorders.  Every other place, which means a private facility, will NOT accept her unless she is willing.  This frustrates me no end.  Those facilities are failing people like her.
2) She is NOT willing to go anywhere and believe me we have tried and are continung to try to persuade her to go into treatment.  She definitely needs a higher multi-modal (meaning co-morbidities and substances) level of care because medical management is necessary to address the physical issues involved.   She firmly refuses.
3) She is willing to go to a local psychiatric hospital - and has twice for 3 weeks at a time since May 8 of this year (and many, many times previously)  and her insurance covers this but the hospital is set up for acute cases only and will not keep her beyond the point where she refuses to stay any longer.  And, as well, the doctors do not seem to be willing to either fight the bureaucracy to keep her longer and instead/because of (?) they are not an eating disorder treatment facility she cannot stay longer nor do they really seem to “get” that the ED is in charge and somehow they must work with her to wrest her from the ED desire to kill her.  
We do hold on to hope.  We do keep trying.  But, @&$#, such a huge barrier!!!!!
Peregrine_USA
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kazi67
Peregrine_USA
im so sorry for the situation you are in
its really heartbreaking to read your story and so frustrating to know it’s because of your d illness she is refusing treatment 
i do suggest you watch the video again Peregrine as they did say something about in palative care treatment doesn’t stop that they work alongside the patient 

im still very upset and disturbed by this topic and I oppose the bill but I have no idea wether it is possible to stop it or if so how to
i believe they are thinking of patients with incurable illnesses ie stage 4 cancer/dementia etc to end life peacefully/pain free 
and the thing that upsets me and im sure everyone else on the forum knows is ED ARE treatable

i think recovered ED patients need to advocate/ speak up on behalf of fellow ED sufferers who are not yet recovered,  and oppose the bill for ED sufferers 
I applaud June Alexander’s blog!!

i believe my d is not stable enough for me to bring up this subject with her (I do not wish for her to think her treatment team have given up on her) as then on a bad day who knows what she may do
only 2 months ago she expressed she wished to die 🙁

i think parents/carers of patients of younger age (whatever the age is in your country that they decide kids can make medical decisions themselves) need to really take note and think about the repercussions of this bill especially when these patients are known to relapse 
my advise, learnt by what we’ve done wrong is 
i would suggest parents be sure to get their authority (signature) to allow them to be involved in treatment, somehow we missed this in the blur of my d being extremely ill and being admitted to and adult centre (she was on the cusp of supposedly adulthood 17/18) when first diagnosed then relapsed once 18

now that my d is  over 18 it is very scarey to know I technically couldn’t stop decisions she may make 

my only hope is to encourage her to keep seeing her team and unfortunately this is going to be very expensive for me in the long run (because she can’t afford the appointments) but I believe her life is worth every cent and to continue to have a good/positive/encouraging relationship with her (which we do) but as we all know if/when the ED voice/demon lurks this can be hard 

its so very difficultfor all I believe!
im glad for the support of FEAST board and their statement 

we continue to have hope and to 
Focus on positive behaviours and health, rather than illness and negative behaviours

its a long long road, longer for some 
rant over 
stay strong warrior mammas 
x

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nerd
I guess I have an unpopular opinion, but the person I'm supporting is a friend, not a daughter, and she does want and deserve a dignified death, rather than yet another suicide attempt that only makes things worse. She is an older adult and knows what she is doing. She cannot maintain recovery, even when it looks like she is. Gaining weight makes things worse for her emotionally and has been for 7 years since she was IP, so she loses it again and doesn't have the insurance to go back. (She would go back and check out AMA after hypermetabolism helps her lose more weight.) She is pro-choice and her family mostly agree that she needs to take this step, which says a lot. She has other MIs (editing to be clear. MI is mental illness) as well.
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monalisa
I suppose my opinion is much like the majority on here. God gave us life and He is the only one who can take it away.

Where there is life, there is hope.

God Bless EVERYONE on here that is fighting this HORRIFIC battle.
Monalisa
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