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HateEDwithApassion

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Reply with quote  #1 
Hi,
Since I'm in this new place, just wondered if it would be nice to start a thread that addresses best practices or tips or advice you would share when dealing with a legal adult child in relapse or still at home and struggling. So many of you have been so helpful - it's a tough road to have little control or leverage, and yet so many of you have made it through. 

It would be great to have a single place that has collected some of those "what I learned" or "I wish I had done x, y and z" thoughts. And I know I would love to read them. 

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #2 
I can't say enough good about having a contract with your YA.  I know I've spoken before about how helpful it has been with my daughter but it was really what helped pull us through from a very similar place you are in to where we are now.  It specified expectations, boundaries, a plan of action if things went wrong, etc.  For my daughter our initial contract included:
-Taking her meds on a regular basis and no choosing to just stop without the backing of her team
-Meal expectations and supports around food
-Weight gain expectations and then maintenance
-Regular attendance with all health providers (therapist, psychiatrist and physician)
-No purging at home and absolutely no drug use
-No self harm
-School attendance, work attendance or volunteering if the first two were not applicable
-What she needed from me in terms of support around meals, shopping, etc.
-When she needed to agree to a higher level of care.
-What support she could expect from me financially.
-Consequences for straying from the contract.

Having it all planned out in black and white made the path so much easier.  She knew what she had to do and she put in very specific expectations of me too that I had to follow.  There were no questions about when she had to seek a higher level of care or what would happen if she refused.  It took all of that our of relationship in a sense so that we could just enjoy one another rather than butting heads all the time.
HateEDwithApassion

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Reply with quote  #3 
Mjkz,

Would you be willing to share a copy of your contract? It sounds very good.




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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Kali

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Reply with quote  #4 
Hi HateEdWithAPassion,

We used a contract at certain points as well, once when she first turned 18 to spell out that we would need to be included in her treatment because we needed to make sure she was safe, especially since she had been suicidal. Some things we discussed were: All hippa forms had to be signed giving us permission to talk to her team. If she lost a certain amount of weight her team would need to inform us. The first time around I made the mistake of thinking that she would abide by the contract and let her providers know about these things. Guess what! She, or should I say ED, did not mention it to her team, so I got in touch with them and made it clear that she had been suicidal and spent months in the hospital, and we needed to make sure she would be safe and that involved the ability to be able to discuss issues which arose with her providers if necessary. To the credit of the nutritionist, psychiatrist, and therapist, they quickly gave her the forms and she signed them. As soon as you mention suicidality, no mental health provider wants to take sole responsibility for your 18-year-old.

We also had a contract for her to return to college. It stipulated that she needed to be weight restored, needed to stay in treatment for as long as deemed necessary, needed to take her medication until such time as her dr. and she might think she could try and go off, and again, all Hippa forms needed to be signed to give us permission to speak with her providers and we would need to have face to face visits first every two weeks, and later if things went well, once a month. I didn't make the same mistake twice: when she went back to school I went with her to the 2nd appointment with her new team, and told all the providers that I was her support person, that if she lost a significant amount of weight we would want to be informed, if she didn't show up for her appointments we would want to be informed, and then I sat with her while she filled out the hippa forms in the waiting room and watched her hand them in.

That being said, I have an agreement with d. that she and I will discuss anything first if there is a problem and try to work it out ourselves. I sometimes have gone to her appointments with her and met with her team and her but that has only been when there has been a problem or I was invited... But I am not intrusive and only intervene if there is a pressing issue. I am her trusty support person and as I have let her know, I am not going to let this illness take her, I will never back down or give up, I will intervene as needed to keep her safe, and she is stuck with me.

Anyway, hope that your d. will benefit from the php.

Warmly,

Kali




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Foodsupport_AUS

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Reply with quote  #5 
I think a behavioural contract is a great idea. The general principle of behavioural contracting is that there are clear guidelines and everyone knows what they are meant to be doing. At the same time we have had a huge struggle with contracting with my D. She has refused to engage in the process, and has refused to sign a number of contracts that we have attempted to make over the course of her illness. She was refused admission to a day program as she refused to sign a contract agreeing to certain behaviours, she has also refused to sign a number of contracts that have been negotiated with me, her psychiatrist and her. 

It is recommended that all parties have input into any contract, so everyone's concerns can be taken into account. 

That being said there has been a generally collaborative approach to her care since she has been over 18. She is aware of me being there to support her. She has a clear team and she does follow through with seeing them regularly. Keeping our children engaged in treatment and care is essential. I use a lot of techniques I have learned for motivational interviewing. Focusing on goals and aspirations is good to then help her look at how they can be achieved, when ED gets in the way it creates an issue for her, but also gives her another reason to move in the right direction. 

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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.
mjkz

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Reply with quote  #6 
Sure.  Let me dig this weekend and find our original contract.  I'm happy to say we have moved far beyond the first one.

One thing I will say about contracts.  My daughter has refused many times to sign one but that doesn't matter to me.  It lays out what her choices are and what she has to do if she wants to treated like an adult and live in my house.  I honestly don't care if she agrees to it.  It is what is going to happen or she is going to be looking elsewhere for a place to live.  It is great if she chooses to sign it but that changes nothing about how things are going to happen at home. 
HateEDwithApassion

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Reply with quote  #7 
Thank you. I look forward to seeing it.
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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Kali

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Reply with quote  #8 
Hi...I never asked d. to sign anything since I didn't want to give her the opportunity to refuse to sign it. I did give her our "contract" in writing though. 

Kali

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mjkz

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Reply with quote  #9 
Our treatment contract.  This was drawn up when she was inpatient and getting ready to come home.  She had been in supported living before and hated it.

Patient: C. K.
Parents: MJ
Clinical team leader: Therapist
Other team members: Psychiatrist, Physician

Treatment Goals:

  • §         Weight restoration to normal range.
  • §         Normalization of eating:  To be able to eat with or without a meal plan independently with variety and good physical health.
  • §         Normalization of mood:  Relieve depression and anxiety
  • §         Resumption of life:  To be free to pursue school, traveling, etc. and be able to enjoy things.

 Criteria for CK:

  • Weight gain of 0.5-2 pounds a week to be revised as weight range goal is met.  Weigh ins will be blind and at physician's office once a month and therapist's office in between.
  • Three meals and three snacks, all supervised by MJ. Meals will be made by MJ and plated. All meals and snacks must be eaten with MJ with at least two hours after each meal and snack spent out of bathroom. In emergency, door must be left ajar, no flushing. If any of these rules are broken, meal or snack must be made up with Boost or Ensure even if CK insists no purging happens.
  • No purging, no self-harm, no drugs or alcohol, no diet pills or laxatives.
  • Absolutely must take all meds prescribed as prescribed. Medication changes are only with full agreement of the team. Any refusal of meds means immediate assessment for a higher level of care.
  • Keep all treatment appointments (psychiatrist once a month, physician every other week, therapist twice per week). All treatment team members will have full access to MJ and all HIPAA releases signed.
  • Part-time job if able  no more than 15 hours a week.  If no job, then must volunteer at low physical activity position at least 12 hours a week.
  • Limited exercise to be increased as weight goal is reached.
  • CK will live at home and not move out, spend nights with friends except at home, etc.
  • All members of the team are to be treated with respect.  

 Criteria for MJ if CK following contract:

  • I agree to treat her as an adult. I will make and plate food and snacks with reasonable suggestions/choices of food.  Last snack is to be eaten by 9:00 at night so supervision for bathroom is over by 11:00.  I will let CK know when the food is ready for all meals and snacks but will not chase or nag her about food. 
  • I agree to pay for all food, treatment expenses, housing expenses, car, phone, internet, reasonable allowance.
  • I agree to pay for any classes recommended or any that CK wants to pursue.
  • I will provide any support needed including driving to appointments, meal support, etc.
  • The finished lower level of the house is CK. It is her space to have friends over, relax in, take care of, etc.  CK is responsible for cleaning and taking care of lower level. Friends can stay over; however, boyfriend will not sleep over. CK is responsible for setting her own curfew and being ready to go to all appointments on time.  I will give one reminder.
  • I agree to pay for clothing as CK needs for weight gain, work, etc.
  • Although I do have access to CK treatment team, I will attempt to work any issues out with CK first before going to her team. I will let CK know if I need to talk to her team.
  • I agree to honor food choices that are reasonable and customary. No vegan or vegetarian options. I agree to honor food choices that CK hated prior to ED. Limited switching of like for like (i.e. apple for orange, peas for beans) is allowed.
  • I agree to allow friends to join any meal and snack. Friends and CK are welcome to cook with help plating food and/or delivery.
  • I agree to pay for any bills related to pets as an essential recovery support for CK.
  • I will give CK one warning about any over exercising that I notice. She is aware of weight gain goals and is responsible to meet those. I will help support her not over exercising in any way possible.
  • I will periodically check CK’s room and lower level for anything that violates this contract.
  • If CK needs a higher level of care, I and the team will make all attempts to involve her in the decision making process and allow her choice in where she gets treatment.
  • I agree to provide more support when asked.  If CK has an idea of what can help, I am open to hearing it. I am willing to do whatever I can to help CK move into recovery and have the life she deserves.
  • I agree to renegotiate parts of the contract as appropriate to allow more freedom as goals are achieved.

 Criteria for moving to a higher level of care:

  • Weight loss.  Any weight loss is given one week to regain lost weight and continue gaining.
  • Suicidal ideation/impulses/actions
  • Purging or self harm behaviors of any kind
  • Refusal of meds/stopping meds
  • Emotional dysregulation that cannot be brought under control.
  • 48 hours of food refusal or 24 hours of food and fluid refusal.
  • Drug or alcohol use.
  • Impulsivity that cannot be brought under control.
  • Failing lower level of care in any way.
  • Medical instability.

 Consequences for refusing to move to a higher level of care:

  • One week to regain control with agreement of team.
  • If meal or fluid refusals, no driving. Safety first at all times.
  • If after meeting with full team refusal continues, all financial support from MJ to CK will end.
  • CK will need to move into supported housing if able.
  • If supported housing is not available, legal proceedings for guardianship/conservatorship will start.
  • CK will move into supportive housing as soon as it is available.
  • If CK changes her mind and moves to a higher level of care, the contract will stand and CK can remain at home.

 

 

 

HateEDwithApassion

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Reply with quote  #10 
Wow, thank you. This is very detailed and super helpful. My D remains inpatient but may be coming home in the next day or so. She has admitted she is very afraid because while inpatient, she can't exercise and has to eat all - she has no choice. She lost a few pounds from her admission to yesterday. They are wondering if it's because she was weighed in street clothes first and a gown the next day because she is inpatient and eating all meals and snacks with bathrooms locked. She is surprised too. But the saddest thing she told us is that even though she knows she shouldn't, she was relieved when she heard that. 

It made me so sad. It was the first time she actually talked about the thoughts in her head and how she knows she's not healthy, but feels like two people: one who wants to recover and travel and have a normal life and the other that does not want to eat and "get big." She knows losing her hair and missing her last period means her body is shutting down certain operations due to starvation - she logically understands this, but still finds it hard to think of gaining weight. This disease is so evil. These poor kids and the chaos and evil thoughts that are in their heads. 

Thanks for the contract. I've saved it and will show it to my husband and her team. 

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #11 
I hope it helps.  That contract was the first we had when everything had to be spelled out.  It was also after lots of ineffective treatment and after she got down to a BMI in the single digits.  I knew at that point it was now or never.  She was getting out of an inpatient program having gained 30 pounds but still only at a BMI of 13.  She was 21 and fully legally an adult so could have walked away but after having been forced into treatment and having had to live in supportive housing which she hated-she finally realized she had exhausted everyone who had been fighting for her.  She did not want to live and to this day says she did it because she had no other choice or she did it for me.  I did have to get the legal guardianship and conservatorship at one point.  She didn't fight it because I think she knew it was the last straw and there was nothing left for her without it.  It was the worst day of my life when I met her at the door with her bags packed and social services drove her off to supported living.  It was also the first day of her hitting rock bottom and getting into recovery.  It was the first day of our mutual future.  I hope things work out as well for you and your family.  I don't regret anything I've done. I just wish I had done it sooner.
tina72

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Reply with quote  #12 
Hi mjkz,
thank you so much for posting your contract, that is really helpful for all of us struggeling with an adult or nearly adult loved one. I will translate it and use it, too.
"I don't regret anything I've done. I just wish I had done it sooner." Yes, I would subscribe that, too. Just heard too much and too long to the wrong people. IP in Germany still thinks that the patients need to want to recover and parents should be out and wait and patients should decide what to eat all on their own. That doesn´t work and they know that because 3/4 of the patients there relapse and come IP again but it seems to be a great market to gain some money for hospitals, therapists and so on. Unbelievable what they are doing with our kids there...
Tina72

melstevUK

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Reply with quote  #13 
HateED,

" but feels like two people: one who wants to recover and travel and have a normal life and the other that does not want to eat and "get big."  "

In your position I would tell your d that this is absolutely normal in terms of the ed recovery path - and that ultimately one day as she matures she will choose the recovery path and it will be worthwhile.  If you treat her thoughts as 'normal' in terms of what happens for all patients in recovery, and keep optimistic and reassuring her that she is doing well because she can openly speak about the ambivalence and is aware of how difficult it feels - you will be able to explain that the choice will be easier as she gets more confident about who she is as a person, what she values, what she wants to do and how she needs to be well to do these things.  You will find that she will start to leave the ed thoughts and values behind over the next few years because being thin is valued primarily and of particular importance during adolescence - but it becomes less important for young adults who move into their twenties and start to realise they have skills and qualities outside how they present visually to their peers.

It's a learning curve as much as anything - and you can really steer her through this process with confidence.  It can't be hurried but if the recovery signs and progress is there - your confidence and expectations of her recovery will also play more of a role in her development than any treatment programme or enforcing her to eat and gain weight because you are demanding of that and want to be 'in charge'.

As long as you and she realise that if she can't keep making progress - and more significantly starts to go back downhill - that you will step in and ensure she gets the support she needs,  you really will steer a path through this.  If she is focused on the future she wants and the life that she wants to lead - this will pull her through.  
If a contract makes things easier for everyone concerned - then that is even better.  
While your d is struggling - she sounds to be in a good place in terms of self-awareness and maturity - and that has its place and value in all this.

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toothfairy

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Reply with quote  #14 
mjkz thanks for posting that, it is sure to help people,
wow its brilliant x TF 

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
mjkz

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Reply with quote  #15 
Thanks TF.  I liked it because it gave us enough structure to work with while building in some flexibilities that played to her strong points.  She was pretty good about setting her own curfew and needed no help with that.  There were some things that I left out that medically specific to her and we did have a part in there about going to the ER and what would happen there but I know we were lucky to get that and not many are able to so I left that out.  The best part was that the contract stayed the same no matter what level of treatment she was at.  She did not do well in ED programs and often got kicked out for being a bad influence so we have a general psych unit that we use that has a program specifically designed around her needs and the contract expectations are what they use when she was there.  There were times when she needed extra help with things but we would follow the contract of one reminder and that helped me not continually chase her.  It took a lot of the responsibility off me and put it on her which was appropriate for her age.
toothfairy

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Reply with quote  #16 
You have done amazing work - you are very wise...
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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
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