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HateEDwithApassion

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Reply with quote  #1 
Hi,
I am a writer, and I submitted a blog idea about the challenges of remaining compassionate with a loved one who has mental health challenges and either can't or won't do what they need to do to start/maintain recovery. The audience is families looking for wisdom, guidance, ideas on different mental health topics they face due to their loved ones.

All comments will be kept anonymous, but was wondering if you would be willing to share:
1) Is it challenging to be compassionate?
2) Have you found practices you use that help you find compassion even when you've had a long-suffering illness or one that has relapsed multiple times or one in which your loved one won't admit a problem or one in which your loved one won't remain compliant with treatment? So many different reasons our compassion can be tested.
3) Any insights to share about compassion and how it's helped a relationship with your loved one? Relationships within a marriage? Extended family? How did you find the practice you use? What led you to try new practices to find compassion? Results? 

Even though I'm using it as information to write a blog post, I hope it can help all of us find something in our hearts on those days when we are so angry and frustrated and want to throw in the towel.

__________________
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
tina72

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Reply with quote  #2 
Hi,
I really like to help you and here are my thoughts.

1) Yes, it is. It depends on mood and power and there are days when I am really good in that (and surprised by myself) and then there are situations when I absolutely are no help for her and make things worser with every word I say. I try to get my h to take over then. Mostly it is sadness and disappointment which leads to that I think.

2) My practices: Re-read the books of Eva Musby and Laura Collins. Try to seperate d and AN. Go outside and take a deep breath. Do a nap after lunch. Try to have one "date" with a friend outside the house every week. Try to have one date with hubby every week [wink]. What I found really helpful for us both (d and me) was a punching bag. We had times when we both didn´t know where to get all this agression in us and it was helpful to have "someone" to hit.

3) It is easier if you try to be a team and pull on one side of the rope. It helps a lot to come here and vent. It helps to talk to other parents who know what is going around in your house. It helps to have a friend who understands and so let go all the people who blame you or do not even try to understand.
Marriage: It is hard to stay a couple with family anyway and it is harder with ED because you nearly have no time left to be alone. If your kid is with you 24/7, you need to arrange some couple time to get that.
Family: I have not much family left, I think it is important to ask them for help and to give some informations, but if that doesn´t work you must see what is best for the small family in your house. So big family parties might not be a good idea for some time and not everybody will understand that.

Hope that helped you.
Tina72
Ping_Pong

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Reply with quote  #3 
The 2 most important things that have helped us act compassionately were told to us by the doctor on the day our d was diagnosed:

1.  The illness is not our fault -  being released of blame like this allowed us to get on with the task of healing our d;

2.  Separate our d from the illness - it is the AN making her act like this, and not her.

There are other things that also helped maintain compassion through the re-feeding process:

- Eva's book - couldn't read it quick enough, and sometimes snook out of the kitchen for a quick peek at a useful bit!

- My h and I being on the same page, and tag-teaming with meal support if one of us needed to step away if the compassion wasn't flowing at that particular moment, and allowing ourselves plenty of time to 'debrief/decompress' afterwards.

- ATDT - chance to vent, to be supported and to know that things DO and WILL get better, and now I'm the one able to say that to other carers!

- When d relapsed, we knew we'd supported her through re-feeding once before, and we now knew what we were doing - her treatment team would remind us of this, which I found supportive.

- Sorting out and scaling back on other areas of life so I could concentrate on re-feeding.  For example, I was given sick leave from work for 3 or 4 weeks.  Without this, I would have been far more stressed and less compassionate.

- For me, it was the practical things that helped best - being organised (re buying and preparing food, for eg), reading Eva's book so I knew what words to use in a crisis moment, tag teaming with h, etc etc.

- And remembering to make time for our other (non-ED) daughter through all this.

I didn't get all this right and on many occasions it all went a bit Tango Uniform.  But these are the things that really, really helped our family.

Hope that helps a bit!
eternalhope

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Reply with quote  #4 
I found Laura’s book and Eva’s book very helpful, as well as Harriet Brown’s, “Brave Girl Earting.” I’m also reading a book suggested by Deenl, “A Parent’s Guide to Gifted Children” by James T Webb, which I’ve found helpful. I try to get enough sleep. One thing that I always need to work on in my body language. I may be saying the right things, validating, but I still seem tense. My d says I always seem anxious and it make her anxious and upset. I also get a lot of peace from this forum seeing that I’m not alone and that others have the same complicated struggle. I definitely think you have to work with your husband/partner. I can’t imagine if the additional stress if you weren’t on the same page. I too have dropped my social life to a few close friends, and they are enormously supportive. In hindsight I wish we had chosen a path where we were completely open about the illness. My d did not want that. It does complicate things when you run into people who aren’t in the close circle and they don’t know and you avoid them. Although as time has gone on, I’m sure more people know than I think.
Kali

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Reply with quote  #5 
Mine were really very simple.

I focused on the unconditional love I have for my daughter and my strong desire to see her live the life she deserves, rich in friendships and pursuing interests she is passionate about while living in a healthy and well-nourished body.

When I had thoughts which were unkind/tired/aggravated/angry/exhausted go through my head, like we all do, I asked myself the question: would I be thinking/wanting to say this/feeling so angry/annoyed at her if she had cancer instead of an eating disorder? If the answer was no, I tried to banish the feeling and thought and tried to remember that like cancer, this illness was not something she had chosen.

I remembered that each day was a new chance to try again to do better if we had not had a great day regarding food intake.

I tried to enjoy making food and got excited pouring over recipes and arranging things on the plate to look pretty. 

Kali

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mjkz

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Reply with quote  #6 
Quote:
1) Is it challenging to be compassionate?


Oh yeah especially when you see the person make the same mistake over and over again with both of you know where that is going to lead.  Sometimes too you can't be compassionate about the whole situation.  Compassion can actually help make them sick in the same way trying to validate and reinforce how bad they feel when they eat.  I tried my hardest to be compassionate but also let the person see they are repeating a pattern.

Quote:
2) Have you found practices you use that help you find compassion even when you've had a long-suffering illness or one that has relapsed multiple times or one in which your loved one won't admit a problem or one in which your loved one won't remain compliant with treatment? So many different reasons our compassion can be tested.


I find during times like you describe above, I end up having to be compassionate with myself and realize where my boundaries are.  I try to help as much as I can but limit the impact the other person's actions can have on my life and my well being.  As a parent, it can be hard to be compassionate with yourself when you want to help and fix things for the other person.  Sometimes it feels selfish to start drawing limits and boundaries around how far into the chaos you are willing to let your loved one drag you down into.

Quote:
3) Any insights to share about compassion and how it's helped a relationship with your loved one? Relationships within a marriage? Extended family? How did you find the practice you use? What led you to try new practices to find compassion? Results?


I think the definition of compassion changes as the person ages and what you do has to change with it.  As a child, you can be compassionate and still stop an action or head your kid off from something dangerous.  As a young adult and adult, sometimes you have to withdraw and you find the compassionate thing is for them to make mistakes and learn from them.  If you protect them all the time (compassionate and necessary when they were younger), then you actually stifle their growth.  There are ways to let them make the mistakes and still be compassionate in how far you let them fall before you step in.  Sometimes compassion can be a heart to heart of "this is what I see and here is the pattern you are repeating.  Do you want help to stop it yet??"
martican

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Reply with quote  #7 
Hi HateED:

1. I do struggle with compassion sometimes. The reason - I struggle comprehending the lack of self-preservation. Even in my lowest low, I would have accepted someone's help if I couldn't helped myself. When I started antidepressants, I had bounds of paralyzing anxiety and absolutely no appetite for 2 weeks. Still, I forced myself to drink Boost, eat food that tasted like cardboard, and I was so scared for my own well being. I know it is her illness (AN plus depression) so I am trying to be gentle yet firm. My compassion comes easier when I see that she is actually trying to do what is good for her, even if she might be struggling. 
2. Constant education, re-reading mental health material helps me with my attitude to my D. Being present at ED therapy. Taking mental health workshops. Reading this forum. Also I remind myself that I am actually grateful that was born into our family and not into some other, perhaps insensitive, ignorant family, or even country where she would be punished for the way she is (she is also ASD). That thought itself helps me to be patient with her. Another strategy - setting boundaries. She cannot use her mental challenges as an excuse to be aggressive or rude towards us, or refuse the treatment (she is 15 so I still have some power there). In order to be supportive and compassionate, I need to feel safe in my home. Yes, it is different parenting, and I let some things go but I will not let her ride my back. 
3. First, I had to learn to be compassionate with myself so  I could find connection with my D. Being ASD, she is actually just starting to discover empathy towards other people, including me. I am her biggest support and she considers me as such. I express my feelings towards her, even when they might not be pleasant to hear sometimes, I show her I am a human, too. My H has a HARD time with compassion towards mental illness. He is just not getting it. However he is compassionate to me when he sees how drained I am sometimes. He steps in, like tag team, and actually listens to my suggestions. Many times he saved some bad T-storms brewing in my D's head. I make sure I comment on how helpful he is, or what he did saved the day.   What led me to practices to find compassion? I would want someone to do the same for me. 
wheresmywand

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Reply with quote  #8 
For me, when I'm at my most angry/sad/frustrated and struggling to separate D and ED (Voldemort!) i remember the last time she broke down/dropped the sass and the pretence that she is fine - and let her own struggle and sadness show. Not long ago she had been away with friends and I could see she had lost more weight. I was so invested in that that my greeting was all about had she been eating enough etc etc and she just broke down and sobbed "I was so looking forward to seeing you, I thought you'd be happy to see me too!' Needless to say I felt terrible but the result was that things softened between us and her vulnerability allowed me to feel that compassion again. Now when it seems I'm going to burst with anxiety and she's rolling her eyes at everything I say and do, I remember that underneath she's just a vulnerable, struggling child who needs my help. And I love her.
x

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
Foodsupport_AUS

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Reply with quote  #9 
Things I found most helpful were:  1) Separating my daughter from her illness. Recognising how much the illness had hijacked her behaviour and thoughts was essential to me being able to then offer her compassion. She had no more control over the illness than I did. 
2) Learning as much as possible about how AN affects the brain. Knowing that fear and anxiety were the driving forces allowed me to look at things very differently and without blame. This of course links back to 1)
3) Loving her despite all c*** that came our way. 




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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.
kazi67

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Reply with quote  #10 
Hi
I think what made me continue to be compassionate to my d was firstly my unconditional love for her and knowing it wasn’t a choice, and it wasn’t ours or her fault
Also watching her loose her hopes and dreams was heartbreaking and seeing her friends thrive and continue on with life whilst she was “stuck” helped me to be compassionate to what she was going through
The frustration I felt was ten fold for her, and she also would become very depressed knowing friends were spreading their wings and off to uni/jobs etc
The frustration I felt myself of why she just couldn’t hurry up and eat and get better I struggled with, but I had to learn to be more patient and understanding
Just because she isn’t doing the “same” as her friends I know she is doing her best and I always have to try to remember this and NOT compare her to her peers
I often say if she is feeling down when she noticed some success a friend may be having with something is “your kicking anorexias butt!! That’s a VERY big achievement in my eyes” and to remind her how much we love her
I really find this is something my d NEEDS to hear more than once daily
I also found keeping in mind that my d considered herself a complete failure most of the time helped me continue to be compassionate to her
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