Dadofa22yo
Registered: Nov 10, 2009
Posts: 3
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| | Nov 10, 2009 at 10:56 PM | Reply with quote | #1 |
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Hi,
I'm new on the forum today. SeminarLady is my ex-wife. Our daughter is 22. She just graduated college, and is battling AN and depression. She was in an inpatient program for 3 months at the start of the year, was moved prematurely to partial program and gradually slipped back over several months. Her mom has done a great job restoring her to a reasonable weight (113 lb, at 5'9'')but the task of refeeding has become more challenging. I will be doing a lot of reading on this site, and will end up wiht some questions, I'm sure. For now I'd be grateful if someone can direct me to specfic threads, etc. that address helping patients of similar age and circumstances. (She lived away at college. She has twice stopped taking meds, and refuses now, and she won't see a therapist-mainly out of fear.) |
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Mamame
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Registered: Oct 30, 2008
Posts: 3,168
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| | Nov 10, 2009 at 11:10 PM | Reply with quote | #2 |
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So glad you joined us and sorry you had a reason too.
One or the reasons IP works is the constant and supported refeeding. When a patient leaves that environment they often don't get the support they need to keep eating and moving forward.
That is what we do here, support each other to support our children.
There is much hope for FULL recovery when there is full support for the sufferer. Full adequate nutrition, support and compassionate understanding for a long time, especially by loved ones, offers the best hope.
Again welcome!
M
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girl14AusNSW
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Registered: Aug 23, 2009
Posts: 1,708
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| | Nov 11, 2009 at 12:26 AM | Reply with quote | #3 |
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Welcome Dadofa22yo
I am learning here myself my d is 14. There are others out there on this wonderful,supportive forum in the same situation (older child) I am sure they will guide you to appropriate threads etc. Re-feeding sucks!As do Ed's. All you can do is keep feeding them and keep feeding them, ignore the cries,pleading and horrible things they say to avoid food. My d turned from Taylor Swift to Linda Blair (exorcist) in a heart beat, but it does get better!
Be strong and ask away anytime day or night.
Good luck
sending strength and hope.
Lynda
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lydia
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Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 11, 2009 at 12:51 AM | Reply with quote | #4 |
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Quote: Originally Posted by Dadofa22yoHi, I'm new on the forum today.
Welcome aboard Dad/22. We have several dads who have been where you are, and I'm sure they'll be able to relate to what you're feeling now.
SeminarLady is my ex-wife. Our daughter is 22. She just graduated college, and is battling AN and depression. Her mom has done a great job restoring her to a reasonable weight (113 lb, at 5'9'')but the task of refeeding has become more challenging.
First I want to share that we've all come to admire the tough battle SL has waged. Ed is a formidable foe, and every parent here knows how hard it is to help our children recover from the desperate malnutrition that has threatened their lives. My take on your d's current weight, is that it is still extremely low for her height, if your #s are accurate. But I'd wager you already know that, every time you look at her. My husband and I began family based treatment [FBT] with our 21 year old d [daughter] after she had struggled with anorexia for over 5 years. Her illness began when she was a junior in high school, and it was a complete nightmare for our family. You can read our family story here. Please know that I can relate to your uncertainty about taking on this challenge with a young adult d. But also know the data shows that patients in this age group can be led to full recovery, and our d is proof of that. Today she is thriving, enjoying graduate school, and working toward her dreams. She has been free from ed [eating disorder] since the winter of 2007, and if you met her today, you'd never guess she nearly lost her life to this terrible disease.
For now I'd be grateful if someone can direct me to specfic threads, etc. that address helping patients of similar age and circumstances. (She lived away at college. She has twice stopped taking meds, and refuses now, and she won't see a therapist-mainly out of fear.)
This thread might be a good place for you to start. And posts from this dad, were inspirational for many parents here. You can use our search button above with any specific questions you have, and it's very likely there will be at least 1 thread where someone has asked that before. I'd really encourage you to read t his book. It made such a difference for my h and me. This video might also be helpful for you. Perhaps one of the most important concepts for a parent to understand, is that anorexia is an egosyntonic illness. This means it will be very hard for your d to collaborate in her own recovery for some time to come. Your d needs loving and determined caregivers who will help her do what she can't do on her own: recover to and sustain at optimum weight. She is suffering from a biologically based brain disease which makes it hard for her to understand the urgency of her treatment. You and SL and the rest of your d's family need and deserve professional support in the days to come. To get started, your d will need a comprehensive medical exam, and to have an initial target weight goal determined by experienced professionals in the treatment of eds. Other parents have shared their positive experiences of the UCSD program, [which I understand may not be too far from you] and this could be a good way to help you all get the ball rolling. FBT is hard work, but in our experience, it was well worth the effort. I hope this helps. |
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wenlow
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Registered: April 10, 2009
Posts: 839
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| | Nov 11, 2009 at 01:10 AM | Reply with quote | #5 |
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Hi Dad of a 22 y/o
I am so glad you posted on the site and am sorry for the suffering of your daughter, you and her Mom. Anorexia is a dreadful illness that can only be cured with feeding your child and for her to be at a weight necessary for her brain to be restored. She is under the influence of ED thoughts that control her and prevent her from getting better on her own.
I am in the process of refeeding my 23 y/o daughter with my ex-husband working with a Family Based therapist who has guided us in refeeding her.
Our D had remained at a sub-normal weight for most of her adolescent years and throughout college.
We realized that the ED had full control of her and that the only way to extinguish the ED was to take over feeding to get her to a restored weight. That weight would be determined by an ED physician.
It is hard work and takes a lot of commitment from both parents to hold firm with your D and to battle the ED for her.
Our d was about 10 pounds under a restored weight and those 10 pounds were very difficult to get back on.
What it will take is both parents being united and in agreement that you will both battle the ED. Much of the feeding to get her there takes a very firm, confident, and consistent approach by both parent/s. It is hard to do alone and you need to support one another through this.
What it also takes is using some leverage like not helping with finances, etc unless she agrees to have you take over to get her healthy.
Our D did a lot of negotiating, refusal, etc, but we found a family based therapist who was strong and firm and helped coach us through this.
We continue to all go to her because otherwise, our D would pit one parent against the other. This is especially true when the parent/s are divorced.
My D lives with me and has made so many gains, getting to a restored weight. She is happier, not depressed, talking of suicide, etc.
She was very anxious and we had many battles along the way, but she saw that we would hold firm, feed her, and help her get through this.
I kept telling her that I would not allow the ED to make her suffer any longer. I kept sitting with her until she finished the food. I didn't allow her to only eat part of the meal. Or to choose the meal, make the meal etc.
I didn't listen to her ED.
The others will send you links with information and the best thing you can do is read all you can and learn about anorexia and that it is not your d's choice or voice right now.
You need to separate her from the ED and when the ED voice comes out with verbal or physical attacks, refusal to eat, etc, you just calmly don't listen.
What matters most is to keep feeding her and it will take thousands of calories each day to get that weight on her.
You can expect a battle when the ED comes out, but as long you and your ex-wife hold firm and are united, she will feel safe.
You are giving your daughter a gift of love to get her through this. Most IP programs and even many partial programs are temporary and need the parents involvement from the beginning to see her through this.
What we realize is that even though our d is 23, emotionally she was much younger and was never able to be independent as long as she was under the control of ED.
My best wishes for your d's recovery and I hope you read all the books that are recommendend on this site.
it helped me tremendously.
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Waterhous
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Registered: Nov 28, 2007
Posts: 1,105
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| | Nov 11, 2009 at 01:49 AM | Reply with quote | #6 |
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Hello and welcome dad,
Many of us have kids that are legally adult and we still have to wage the war against the ED. We will all be willing and able to answer your questions as they come so keep 'um coming!
You are doing great work already for your daughter, in continuing to learn about EDs, as they the most confusing and odd illnesses. Even when our kids are adults there are ways we can support their return to health by having meals and food intake monitored, by knowing that we still play very strong roles in the lives of our kids, both emotionally and financially, and by being willing to do whatever it takes to help our kids get better. Getting better is possible. Not easy but possible.
Good to meet you.
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Colleen
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Registered: May 15, 2008
Posts: 1,611
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| | Nov 11, 2009 at 03:37 AM | Reply with quote | #7 |
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Hi Dadofa22yo,
I just want to welcome you and give you a big shout out for joining the forum. I'm so impressed that you are willing to join us! Let us do whatever you need to support you in helping your daughter.
YAY FOR DADS!!
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | Nov 11, 2009 at 09:28 AM | Reply with quote | #8 |
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Welcome to you, Dad!
I really believe the greatest tools for full recovery are: a clear and well-designed plan, a team of parents and clinicians in lock step on the plan, the assurance of full nutrition to restore and then maintain normal body composition, and time. The gift your family is giving your dear daughter is priceless.
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neverloseheart
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Registered: May 01, 2009
Posts: 1,129
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| | Nov 11, 2009 at 09:40 AM | Reply with quote | #9 |
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Hi Dad,
Welcome to the forum! My d is only 15 but we are also a divorced family. I wanted to chime in on the power of unity. At first when my d started in treatment, my ex husband and I each did our part but separately, we didn't talk too much, I went to all the appointments and filled him in. I wound up with way more education about the eating disorder and her specific issues.
He was so good about feeding her, but as her anxiety over refeeding increased, ED was desperately seeking a safe haven and she would often lash out against one of us or the other (whoever seemed the easiest on ED at the time) and she did tend to draw us into these arguments and things were very tense for awhile. One day we had a long talk. We realized that we needed to work together to be a wall 100% of the time against ED. We switched to Maudsley style therapy and made all the appointments when we both could go with my D. We all three now had the exact same information and set of marching instructions. No blame was ever assigned to anyone, we were just moving forward together. There was no place for ED to hide. I cannot tell you how quickly things improved after that. I'm not saying it was easy! At one point we were both feeding her a snack in a public place and she was throwing the food on the ground and spitting at us, but we got through it and after that she knew that there was nothing she could do but eat. No where to hide. The power of unity against this disease is just incredible.
The thing to always keep in mind is that she really does want to get better. A few days ago, a young 17 year old was on this site masquerading as a parent and she said she was really wishing her parents would make her eat because she can't eat herself. My d has said to me a few times that she couldn't choose to get better. She had to be made to get better.
Welcome again to the forum and I hope it will help you as much as it has helped our family!
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midwestmom
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Registered: Sept 22, 2009
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Waterhous
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Registered: Nov 28, 2007
Posts: 1,105
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| | Nov 11, 2009 at 12:56 PM | Reply with quote | #11 |
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MidWest...thank you so much for those links. I was trying to find the first article last night about more body fat and better prognosis in AN. I knew I had seen it but I lost the ref. It is very important and a good tool when parents need to argue with their healthcare providers about increasing the weight. |
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graceamazes
Registered: July 03, 2009
Posts: 27
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| | Nov 11, 2009 at 01:54 PM | Reply with quote | #12 |
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MWM -- thanks from me, too, for the links. I printed out the Reuter's article and the 10 mistakes in multiple copies: for D's father, for her therapist, for her nutritionist, and for her (new, unfortunately) doc. Her previous doc, who saw us through over 2 years of "traditional" treatment and a few months of FB treatment, is going back to teaching in a med school/children's hospital setting. We will miss her a lot! Fingers crossed the new one (a nurse-practitioner) will be a good fit, but I'm going to start her out (today) with these articles.
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Kathleen
Registered: Oct 23, 2009
Posts: 214
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| | Nov 11, 2009 at 02:43 PM | Reply with quote | #13 |
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I wanted to say welcome to you. I am the mom of a 22 yr. old. Not sure how much I can help but this place is great and full of support and advice. Best of luck
-Kathleen
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Dadofa22yo
Registered: Nov 10, 2009
Posts: 3
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| | Nov 11, 2009 at 04:12 PM | Reply with quote | #14 |
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Thank you so much everyone for your encouraging words and your suggestions for further reading.
My big question right now is dealing with an occasional absolute refusal to eat - it happened last night. For the first time in a week. (She is back eating again this morning.)
What are options, approaches given:
1. She has already called our bluff. (Mom, dad and stepdad in unison and completely resolved to see her go into inpatient, took her down to ER who basically said she's fine physically and free to go).
2. She has lived on her own and has drifted further in to ED and major depression. Since we believe that ED is a brain dosorder that manifestss with faulty decisions regarding food intake and not an addiction requjirng will power to overcome, is setting her loose to fend for herself something that would backfire?
3. The psychiatrist she trusts has done his best to get her to start medication again, and/or a program, and has told her very vividly what happended to Karen Carpenter. She gets the message, but when in the throes of the ED obviously does not hear that part.
To what extent is an acceptance of ocasional brief episodes when she says "I just can't do anymore" today better that expending 2 hours fighting a battle over one meal which increases stress levels and probably metabol;ic rate.
Any specific carrots or sticks people have used?
What discussions have they had with daughter the next day to get back on track? My feeling based on my interaction is that the less stress, the less hypervigilance in the days following and the easier to get her trusting and back on track. I understand the "no negotiation" in principle, but that implies that there is a big stick to back up speaking softly.
any advice would be appreciated. |
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mygirl
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Registered: March 06, 2009
Posts: 599
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| | Nov 11, 2009 at 04:14 PM | Reply with quote | #15 |
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WELCOME! I am sorry you had to find this site but glad for you and your wonderful daughter that you did.
Feel free to come to vent, get connected with evidence, advice in caring for a loved one who suffers from an ED and support for yourself.
This process can work and your D can get better.
It's hard and sometimes seems counterintuitive but it really works!
She needs you!
Good going so far Dad.
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BridgetAUS
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Registered: July 31, 2007
Posts: 1,067
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| | Nov 11, 2009 at 04:26 PM | Reply with quote | #16 |
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Welcome - you have been given some great links and references. You and seminarlady are wonderful parents - lending your daughter your strength until she is well enough to understand her illness and fight for wellness herself. Please come back with any questions.
take care
Bridget
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neverloseheart
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Registered: May 01, 2009
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| | Nov 11, 2009 at 06:09 PM | Reply with quote | #17 |
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Hi Dad,
It's generally most effective if there are some meaningful protections for her if she doesn't eat. Since she's 22 you may not have as many of these as a person with a younger child would have. But you might want to give that a thought. Basically, life stops if you don't eat. So what in her life can you stop right away if she doesn't eat???
For me it works to tell her I am going to call for her father if she doesn't eat. I also told her I could get an NG tube as each meal was very important.
I know these probably arent' the best ideas for you so I'm hoping others with adult children can help with more specific ideas.
BUT what I wanted to tell you was that you should never EVER agree to less than full nutrition by any words or actions of yours. If she thinks that you are okay with her not eating, ED will tell her that YOU think she is too fat and that's why you aren't making her eat. She expects (or needs to expect) for you to make her eat. Your expectation has to be 100% of the food, 100% of the time. Sitting at the table for 2 hours lets her know that you mean it, even if she doesn't eat everything that time. She will eventually get sick of sitting at the table if she knows you aren't going to back down ever. If you can find a way to get to 100% enough times that she knows she can't refuse, it will make the subsequent days MUCH easier.
GOOD LUCK!
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lydia
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Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 11, 2009 at 06:57 PM | Reply with quote | #18 |
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Quote: Originally Posted by Dadofa22yo
Thank you so much everyone for your encouraging words and your suggestions for further reading.
My big question right now is dealing with an occasional absolute refusal to eat - it happened last night. For the first time in a week. (She is back eating again this morning.)
...Any specific carrots or sticks people have used?
What discussions have they had with daughter the next day to get back on track? My feeling based on my interaction is that the less stress, the less hypervigilance in the days following and the easier to get her trusting and back on track. I understand the "no negotiation" in principle, but that implies that there is a big stick to back up speaking softly.
any advice would be appreciated.
Dad/22,
The post that I think best describes this dynamic was written by another dad.
This is the link to the thread, where another dad had asked the same question you have now.
It's obvious to me that you want to be both strong and sensitive to your d's needs. Seeing a child struggling this way is incredibly painful, the last thing any of us want to do, is to add to that suffering. But understanding that your d's malnutrition is the driving force, is key to the choices that have to be made for her sake now and in the days ahead.
In many ways your situation mirrors our experience. I think my h was afraid that taking a firm stance would damage his relationship with our adult d. He saw my insistence that we needed to help her eat, as intrusive and innapropriate. And we had several therapists who reinforced this view. They emphasized that our d had to choose recovery before she could work through her issues with food and weight. She paid a terrible price for this, and nearly lost her life more than once.
The first few days of FBT were very hard for our d. Then it was like a dam bursting. In part I think it was because we had made it clear that the only options were food at home or in the hospital. But I also think it was physiological. As her blood glucose levels stabilized, and long depleted nutrient levels were being restored,
we saw a real improvement in her mood and responsiveness. As our d gained weight, we had periods where her resistance increased and then it would abate again. Many parents have reported that this seems to coincide with oncoming surges in the physical and psychological healing process.
It might also help to understand that right now your d is suffering from a cognitive impairment. This means she is unable to process ideas or even recognize her own needs in an age appropriate way when it comes to her illness. So while you may be struggling because she is chronologically an adult, this can undermine your ability to guide her through this temporary impairment. We were startled by this, with our own d. She was still making straight A's in her college courses, could carry on very adult conversations on a range of topics, but was completely irrational when it came to the subject of food or weight.
Confidence is key. You have to believe in the rightness and urgency of what you are doing. Continuity and staying power matter. Communication between caregivers has to be strong and mutually supportive. Ed will latch onto opportunities to triangulate loved ones, if there's a sense this can delay or hinder weight recovery and maintenance. So buckle up for a long ride. I strongly recommend a helmet too!
Oh, and on your "plan B" question. A lot of parents have prearranged the hospital trip with their child's doctor. In many instances it's the doctor who informs the patient how this response will be implemented, including reassurance that if eating becomes too difficult, a feeding tube will be available on an interim basis. The idea here is to offer support and reassurance that full nutrition is a necessary medical protocol and a certainty...but not to communicate that as a threat. Of course ed will try to turn this around [a symptom of this cruel disease], but don't let that rattle any of you.
I've often shared with parents that it helps to put yourself in the mindset of an inpatient caregiver. Children get the medicine they need in hospitals, whether they're happy about it or not. For your d, food is her lifesaving medicine, and can't be negotiable...ever.
I hope this helps.
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wenlow
Mentor
Registered: April 10, 2009
Posts: 839
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| | Nov 11, 2009 at 07:20 PM | Reply with quote | #19 |
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Hi Dad of 22 y/o-
I am so glad that you are looking at how to deal with d's refusal when ED takes over. I had the same challenge with my ex who had a harder time sitting with 23 y/o D till she ate all her food.
She often wound up coming to me to intervene since she knew I would have her eat all the food.
I don't know if your D is living on her own or with you and her mother on an alternating basis.
If she is living on her own, is she able to work and take care of herself financially, being so underweight and depressed?
If she is living with you or her mother, you do have leverage.
I would make sure she is living at home during the refeeding.
I found myself repeating (Often) that I had seen how much my D suffered being strangled by the ED. I told her that I would not allow that to happen anymore. I told her that I loved her and would help her by feeding her and that food is what will help her overcome her depression, misery, etc.
In other words, I let her know that I did not see this as something she was choosing, but rather she was being tortured by the ED.
I truly believe by my repeating those words many times over the first months of feeding, is what helped her feel safe knowing that I would not allow her to restrict her food at all. She quickly came out of the mindset of "needing to be independent and make her own choices".
When she became enraged, screaming about how fat she would become, and was so anxious, I just kept a calm and consistent presence.
I did not argue or negotiate with ED.
Her father had a more difficult time because he always felt it would make her more comfortable by giving in. He had a harder time seeing that her behavior was the ED, and not her.
He saw that it was not helping eventually, and he practiced the same techniques that I used.
When our D saw that we were united and the ED would not take over, when she was being fed by her Dad she began eating all the meals/snacks with him as well.
I know that it is tempting to "give in" or feel "powerless" that you can't be stronger than the ED, but you will see after awhile of being united with your ex and both of you doing/saying similar things (like expecting that she will eat all of the food) it will get easier.
My motto is:
be consistent, confident, calm and caring
while giving her the food that she needs to overcome this.
She is not a rationale person who can make decisions for herself until she is much farther along in recovery.
I would make sure that you can work with a FBT together with your ex. Your d does not need individual therapy right now. She needs to be fed and get to her restored weight in a timely way.
Our d went to many IT who did the other kind of therapy - delving into past and what was causing her ED, choosing to overcome it, etc.
It destroyed her because she did not have the cognitive ability to benefit from any talking therapy.
So, I applaud you and your ex for stepping and and taking charge while your d really needs your help. She needs a lot of calories/fat each day for many months to see a difference.
It is well worth it.
We are beginning to see our old D come back.
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 11, 2009 at 08:48 PM | Reply with quote | #20 |
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Dad,
Please know that every one of us here have asked the same questions and I have yet to meet the parent who comes into this believing the same things they do in a week, a month, a year. I learn more about this illness every day, seven years after I first met ED in my daughter's angry and terrified eyes.
Here's why I believe we should not make decisions about food or mealtimes that are based on the patient's reaction: because the illness knows you are doing it. The illness is looking for soft spots, like compassion, that can trump mealtime imperatives. When we offer ANYTHING that is more important than This Meal Right Now we are saying "use this against me later."
Here's another thing you might want to know. I've talked with lots of former patients - and many current ones, too - who describe wanting their parents to stop listening to them. Despite anger and screaming and throwing food and talk of fat and hate - at the very same time they wanted to be saved, wanted not to be given a choice, and sometimes felt let down by parents who "didn't care enough" to stop listening to all the "reasons" they couldn't eat or couldn't eat THAT. When we compromise we can easily become allies of the illness and not our children.
If what we were talking about was chemotherapy, or excruciating burn treatment, or physical therapy after an injury we don't negotiate. This is every bit as important. The big difference is our confidence that we are doing the right thing, that it IS awful, but that it is temporary and necessary.
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neverloseheart
Mentor
Registered: May 01, 2009
Posts: 1,129
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| | Nov 11, 2009 at 09:53 PM | Reply with quote | #21 |
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Here are the things that she doesn't say now but she will tell you later:
**She's really really really hungry even when she says she isn't. She can't make the hunger go away and stay away as much as she thinks she wants to. (law of nature) That's why anorexics eat so slowly, they want to savor the food so it seems like more food. All this I have learned from my d since she has been recovering.
**She wants to get better but it makes her too anxious to eat. There are some interesting studies on neurotransmitters in anorexia that suggest there is an overload of neurotransmitters during refeeding that may be somewhat responsible for the anxiety of feeding. This seems to be directly due to the food itself. So, she really can't help it. But you still have to push her through it, as Laura says, just like it's another disease with a painful treatment. And there are some things you can do to help. Staying with her while she eats is best. Make sure she doesn't try to hide the food or throw it away. Being very calm and loving and firm does help. Sometimes it's best to say nothing during the feeding. Except to calmly state that she must eat all the food if she is balking. Ask her to just get started if she doesn't start right away. Certainly no negotiating with terrorists (ED) and nothing upsetting or threatening should be said during a meal or snack. If you are prone to be angry or frustrated, it's best to not say anything at all...A warm blanket after eating can help (we put one in the dryer during breakfast and popped it on her after she ate-she liked this because it felt good but also it showed that we cared about her feeling bad even though she had to eat). She might be agitated after she eats. If so, stay with her and help get her distracted.
**If she misses even one meal, the eating disorder thoughts will strengthen.
If you set up a situation in which she has no option but to eat, this will actually make it easier for her--she can tell ED and herself that she has no choice, you are making her eat. But, you have to do it over and over agin so that she knows that you are going to make her eat no matter what. Then, after awhile, the resistance starts to get better. I think that if you leave any loopholes, it just takes that much longer for the resistance to go away. Intermittent consistency with rules is basically the same as having no rules to ED.
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 12, 2009 at 01:47 AM | Reply with quote | #22 |
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Quote: Originally Posted by SeminarLady
As long as she shows us that she DOES want to get well, we can take just about anything ED throws at us (and boy, he throws a lot.)
Okay, now it's time for one of those "aha" moments SL. Requiring your d to show you that she wants to get well, cannot be the basis for giving her the lifesaving care she so desperately needs. She just won't be able to live up to that expectation. She isn't be choosing to be obstinate, or angry, or scared, or hurtful towards those who are trying to help her.
When we saw this resistance...we kept reminding ourselves that this was only a hint of the inner horror our d was experiencing while in the grip of this lethal disease.
Just keep serving it up, staying close at hand and quietly nurturing those moments when she is able to be her "real" self. Don't let yourselves become disappointed if your d doesn't seem grateful...it goes with the territory.
Every parent here can tell you that this requires nothing less than "boots on the ground" unconditional love. But with full nutrition, full time...it does get better.
Keep us in your prayers or 'good vibes' well wishes!
Prayer and hugs coming at you SL & Dad/22.
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wenlow
Mentor
Registered: April 10, 2009
Posts: 839
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| | Nov 12, 2009 at 11:26 AM | Reply with quote | #23 |
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For Dad of 22 y/o,
Please remember that when your d acts like she is possessed by a demon, she really is - it's the ED. Just know that the suffering you see is far worse inside of her 24/7 and that this will slowly reduce as she is fed more.
My D's father had a hard time separating her from the ED. He took her behavior personally.
I always felt that when we saw this demon come out in full force, that was good for our D, because it was getting released instead of torturing her in silence.
And, I had to keep reminding myself to stay calm, confident and consistent that my feeding her the full meal was her best medicine.
Our D had maintained a 10 pound under what we now know is approximate target weight. It is amazing how those 10 pounds kept the ED alive and torturing her.
She was so depressed, suicidial, and unable to have a social life.
Now that those 10 pounds are on her, her personality is changing and she is not talking about suicide.
Her psychiatrist was going to experiment on yet another SSRI or SSNRI or increase dose of current med. But, having those 10 pounds made that unnecessary.
It is more validation that FOOD is their medicine.
Keep being strong and support her Mom through this. You are the ones who can help her Recover.
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Zeri
Mentor
Registered: Feb 19, 2008
Posts: 1,480
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| | Nov 12, 2009 at 01:32 PM | Reply with quote | #24 |
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Do22,
I'm so glad you joined this 'table'; you will be well supported which will benefit your d tremendously.
You have received such excellent advice, I only want to offer my encouragement. My d was 17 when diagnosed, and she recently turned 19. I was completely blessed to find this forum very early in her dx, so my h and I were able to take necessary but temporary control after about 3 months of failed 'traditional' treatment. Our d recovered very quickly and has been fully recovered for over a year and a half. She's living an age appropriate independent life away from home at university....approaching the end of a successful in every way first semester.
You all can get to the end of 'this' and never go back. Requiring full nutrition at every meal and snack is key....the way out....the cure. Identify your leverage and use it. No exceptions.
Redouble your effort, buckle down, and "KEEP GOING!"
Again, I'm so glad you are here.
:-)
Zeri
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 12, 2009 at 02:59 PM | Reply with quote | #25 |
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Lydia said exactly what I was thinking: we can't be dependent on or even concern ourselves with the patient's motivation. It is OUR job to be motivated and keep the plan in motion. |
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Dadofa22yo
Registered: Nov 10, 2009
Posts: 3
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| | Nov 13, 2009 at 01:08 PM | Reply with quote | #26 |
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Thank you everyone for the continuing advice.
Yes, it is not when she is eager to beat this that she needs help, but when she doesn't.
I particularly like the rather matter-of-fact discussion of what will happen if she doesn't eat, and how medical professionals, because they too care, would obviously intervene to provide a higher level of care if we are unable to do enough ourselves. No drama, no recrimination. This is a disorder -you need treatment. |
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AnnieK
Mentor
Registered: Feb 28, 2009
Posts: 848
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| | Nov 13, 2009 at 02:57 PM | Reply with quote | #27 |
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| You got it, Dadof22yo! And it is the truth! The more people around an ED sufferer who speak that truth and act on it, the better. You and SL are doing a wonderful thing for your D - working to give her a good future.
My D is 22 also, and she struggled with AN from age 11 to 18, with us taking her to professionals and making sure that she ate her meals and snacks. Unfortunately, we didn't know about bringing her up to a truly healthy weight and keeping her there while her brain and body healed so that therapy had a chance. She was never fully weight restored, and her ED changed to binge eating in college. We had no leverage with her while she was there because she had a full scholarship and money in her name to pay for room/board. She had to leave school due to bipolar disorder, which she didn't get treatment for until a year or so later. She works full-time, supports herself and is back at school part-time.
But now we DO have some leverage. She makes sure that she gets treatment and meds for bipolar, but was unwilling to consult professionals about her ED. We have given her some extras that she really wanted (i.e. good laptop) that she couldn't afford, in exchange for her getting therapy for binge eating. She knows she must complete the therapy or give the laptop, etc. back. She has tested us on this and we stood firm, thanks to support from members of this forum. I am glad she is healthy enough and feels good enough for this incentive to work. When she first manifested ED she needed hospitalization to realize that she was going to get nutrition one way or another and no incentive would have worked.
One of the most important lessons that I have internalized from this forum is not to be swayed by my D's upset over-ED generated fears. When I observe intense reactions over expectations for normal behavior (i.e., obtaining full nutrition, attaining and maintaining a healthy weight), I realize that this is another symptom that she is not yet healed, and I help her get the treatment she needs. My D knows that we will support her in treatment, but that we would offer zero support for continued ED behaviors.
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neverloseheart
Mentor
Registered: May 01, 2009
Posts: 1,129
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| | Nov 13, 2009 at 11:26 PM | Reply with quote | #28 |
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Recipe to kill ED (it's a difficult but I think a pretty fool proof recipe)
Get weight up to healthy target range.
Keep weight in that range. Do not lose weight again.
Do not allow purging or bingeing.
Keep sufferer safe.
Get treatment for other psychiatric conditions.
Teach new coping skills. Don't just tell her to use other coping skills! She may not have any-if not, she needs to learn them. (My d only had gum chewing when we started-now we have lots!)
Be supportive and encouraging! Let your d know you are optimistic she is GOING TO have a normal life, and it won't be in 20 years from now! |
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 14, 2009 at 08:49 AM | Reply with quote | #29 |
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Wow. NLH!
Let's put this on a prescription pad and hand it out!!
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midwestmom
Mentor
Registered: Sept 22, 2009
Posts: 292
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| | Nov 14, 2009 at 09:32 AM | Reply with quote | #30 |
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neverloseheart,
I love your "Recipe".
Could you write up a "Menu" of Coping Skills to go with it? I do need some help coming up with ideas in that area.
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TerrifiedFather
Registered: Sept 16, 2008
Posts: 587
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| | Nov 14, 2009 at 02:10 PM | Reply with quote | #31 |
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Welcome to the forum from another father (LV is my wife).
To respond to some of your specific questions:
My big question right now is dealing with an occasional absolute refusal to eat - it happened last night. For the first time in a week. (She is back eating again this morning.)
Quote: What are options, approaches given:
1. She has already called our bluff. (Mom, dad and stepdad in unison and completely resolved to see her go into inpatient, took her down to ER who basically said she's fine physically and free to go).
2. She has lived on her own and has drifted further in to ED and major depression. Since we believe that ED is a brain dosorder that manifestss with faulty decisions regarding food intake and not an addiction requjirng will power to overcome, is setting her loose to fend for herself something that would backfire?
3. The psychiatrist she trusts has done his best to get her to start medication again, and/or a program, and has told her very vividly what happended to Karen Carpenter. She gets the message, but when in the throes of the ED obviously does not hear that part.
-I think where you lost ground with the incident in the ER is that somehow your physician was either uninvolved or not in agreement with what Plan B should be. With our daughter her pediatrician had told her that if she couldn't eat at home then they would figure it out in the hospital. It was always understood that absolute meal refusal meant hospitalization while we figured out how to make it work at home again. We never had to do that but it was there.
-Our daughter was twelve (almost thirteen) when I started refeeding so letting her fend for herself would have never been an age appropriate consideration. However, her big brother is almost nine years older and if he had been where she was physically I could not imagine doing that either. I do think that allowing her to attempt to live independently at this point would have likely significant negative consequences. From what I've read it sounds like you and her mom can figure out how to make this work at home but if that doesn't work or safety issues become more significant as you go forward I would look at inpatient or even residential programs before considering that option.
Quote: To what extent is an acceptance of ocasional brief episodes when she says "I just can't do anymore" today better that expending 2 hours fighting a battle over one meal which increases stress levels and probably metabol;ic rate.
I did use a slightly different approach than many on this forum with regard to this. I did it with full support from the involved physicians we worked with and I think for our daughter it was absolutely the right approach. However, her situation was a little different than most children in that all of her weight loss was due to a myriad of medical problems that arose as complications from injuries she sustained previously. I think when she said she was full she truly was and it would have been a mistake to try to coerce her to eat more. I think with someone who's hunger and satiety limits are confused due to starvation the issue is more complicated. I think in that case the best approach is to ensure adequate nutrition but to try to do it with as much consideration to volume issues as possible. We used a lot of smoothies with good success.
I do know that many parents on this forum have reported that giving in at one meal just made the next meal harder. Personally I did not see this with our daughter but I think that was because she never viewed it as me giving in but rather me understanding where her physiological limits were. So perhaps the best approach is to respect physiological limits and support and work through psychological limits.
Quote: Any specific carrots or sticks people have used?
Neither her mom or I tend to be very comfortable with carrot/stick approaches to parenting in general so we really didn't tend in this direction naturally. The one consistent theme I used was that we all loved her, I wanted her to get well, and that I would do whatever I needed to for that to happen. Being very calm also helped because I think she did draw from that.
Quote: What discussions have they had with daughter the next day to get back on track? My feeling based on my interaction is that the less stress, the less hypervigilance in the days following and the easier to get her trusting and back on track. I understand the "no negotiation" in principle, but that implies that there is a big stick to back up speaking softly.
For us the common theme was moving towards overall health and wellness. I/we really never negotiated over non negotiables (like health or safety issues). We did have some discussions about how other things happened (like could we work things out for her to safely attend a semiformal at school or something else similar she wanted to do).
Good Luck! Come back with more questions.
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LV
Mentor
Registered: Oct 19, 2008
Posts: 954
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| | Nov 14, 2009 at 03:46 PM | Reply with quote | #32 |
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Quote: Originally Posted by SeminarLady
Dad is trying hard to help our daughter re-feed at his apartment.
Can someone help me make the case that you cannot allow the sufferer to go in the kitchen and decide what she is going to have for her meal?
And that, yes, you do need to supervise each and every meal.
It is not okay to go off for 2 hours at a time and leave the sufferer to eat unsupervised.
That wouldn't happen in Partial, Residential or at home - when the sufferer is at a stage where they need to be supervised.
Dad needs some encouragement right now.
Thank you.
I think that there are a lot of different variations here and the key is to find what works without compromising adequate nutrition. Obviously nutritional needs vary as well but it seems like a breakfast of juice and a cereal bar is probably a bit low on calories, protein, and fat for most so there is probably still some room for tweaking of the plan.
I think both of these threads touch on the issues you are mentioning.
Do I back down or stand my ground?
Baking/Cooking
Welcome to the forum Dadofa22yo  !
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