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peregrine_USA

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Reply with quote  #1 

I have not posted here in a very long time.  For those who do not recognize my "name", I'm the parent of a woman in her 40's who has been battling with AN/BN for a very, very long time and who has multiple diagnoses that make her life very difficult.  And for her family, so very sad, as well.  I cannot figure out why the bold came on ..... sorry.  not intentional.

There's really no change to report because this year has been all up and down as usual except for the fact that her only substance of choice now  is water.  To some of you who know her background, this may seem like a good thing.  But, in fact, it isn't because now the drill is a weekly stay first in the ER and then in the hospital for a few days so the docs can get her electrolytes back in order so she won't die either of a seizure or heart attack or both.
And, she won't stop.  And, she wants to die but then calls for help when she realizes she might.  Lately, however, when taken to the ER, she becomes furious.  So......

I came home today after driving in to pick her up again to take her where she lives only to be greeted by her nephrologist (who has been working with her) who told me they are keeping her for at least another day because her sodium is already on the downswing.  In a nutshell, she is refusing to follow their recommendations of low(er) fluid intake.

So, after bringing her in a change of clothes and toiletries for her hair (conditioner), etc. and saying hi, I left.  Her language and demeanor towards me has become increasingly rude - abusive is a better word and many of you know what I mean - as her weight also is dropping and I have been advised (rightly so) to visit briefly, reduce the amount of time I spend with her because I've  run out of abuse tolerance, and go home.  

I'm also in "give-up-ville" right now because I know at this point I have done everything, everything possible in all directions with all methods of approach - legal, medical and otherwise - and just need to detach, love her and hope for the best but prepare for the worst.

So, there you have it.  I absolutely detest this disease.  The only bright spot, if one can call it that, happened this week when I received a document about the latest research re Borderline Personality Disorder and it looks like - finally - that researchers are discovering, as they did re schizophrenia and autism and then ED, that this is primarily a genetic disease.  Yet here where I live, even one part of her team still lives in the past with all the myths and misinformation about not only BPD but also ED.

So, even though I am where I am and she is where she is, I am rooting for those of you who are just starting out, want to encourage you to seek all the help you can NOW to get your son or daughter into recovery, and am offering what little help I can by participating in Laura's Starfish package gifting - such a wonderful idea.

Love to you all,






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Peregrine_USA
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Reply with quote  #2 
Thank you for your up date. You have been at this for so long, I cannot imagine the emotional exhaustion you must feel. Your post reminds all of us that there is much to fight for and against.
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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.
Sotired

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Reply with quote  #3 
My heart breaks for you peregrine.
I do believe that for your own sanity, short visits and not every day is the best thing for you.your d is safe where she is for now and so it's a good chance to rest.i know you probably already know this, I just want to reiterate how important it is for you to get some peace and joy for yourself as well.
I am now at the age my mother was when she got sick-4 years later she died,so I'm brutally aware how our lives can be cut short.none of us know how long we get and I need to have things that are just for me to help keep me sane and reasonably happy.i wish that for you too.the hard part for carers of mentally unwell people is that they often don't remember or appreciate what we do for them so it's more important that we award ourselves gold stars,coffees or hot chocolates when we need comfort,massages or manicures when we need a temporary boost to our esteem or to help with our own stress levels.that we visit beaches or gardens to restore balance and bring us some peace.
In short to remember that we too matter, that our lives have meaning past service to others.
Hugs to you peregrine,you have been shining a light for your d for a long time.so please look after yourself too.

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Sotired42
momofboys

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Reply with quote  #4 
Hi Peregrine,

Thanks for the update. I can't imagine how exhausted you must be. As others have said, I hope you find some time to care for yourself while your daughter is safe and find some energy to keep loving and supporting her.


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Mom of 20 yr. old boy recovering from AN. Dx May 2013, started refeeding June 2013. He has come a long way and continues to heal.
peregrine_USA

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Reply with quote  #5 
The thing is, she is not safe. She is being permitted to wander around this medical hospital at will, she is drinking water rather than following doctor's orders, she is probably purging but is not being supervised, and is refusing treatment. Her team leader thinks that these are acute medical issues and therefore she should remain in the care of a medical team rather than a psychiatric team and this is a direct quote: "she is not presenting with psychiatric issues". Her nephrologist has told me twice to my face that she is in danger of seizure, coma and death and now next steps are up to the hospitalist who is not returning my calls even though I am her legal guardian. She is furious with me, wants to be left alone.

What a mess. I plan to go into the hospital tomorrow with the latest literature and try to speak with the hospitalist but the thing is Arizona is so damned backwards. We have IAEDP here and they have accomplished nothing by way of legislation that would require comprehensive treatment of ED. Thank God for the Cures Act but we here are a long way from seeing much happen. She is court ordered which means she could be placed against her will but it is unlikely that she will be admitted because she is so very entrenched and to use a phrase I hate, non-compliant...



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Peregrine_USA
peregrine_USA

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Reply with quote  #6 
As a PS, and as I just wrote to the team leader, we all need to speak the same language and say these are psychiatric issues that result in medical situations that are threatening my daughter's life. I also remarked that in some ways I am speaking up for others who are not so entrenched who need help, too. Anorexia/bulimia is a life-threatening psychiatric iolness and we need a hospital here that will handle both at the same time. Would that some billionaire would come along and establish such a hospital so people with this dx could receive treatment early without charge. Sorry for the rant.
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Peregrine_USA
Sotired

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Reply with quote  #7 
I am so sorry peregrine,I had no idea it was that bad.i too don't understand why if it's court ordered that your d cannot have more treatment done.what a mess.
What does your d do during periods of wellness?is there any way to motivate her through those things.or is she just exhausted from the fight.i understand that you are too but maybe -and this is just a gentle suggestion-it is time to let her make some of the choices around her life.what is her quality of life at this point?what does she have left?
My h and I are trying to come to terms with the fact we may well outlive our own daughter and so have focused on giving her as much quality of life as we can.maybe a miracle will occur but although mentally our d is much better,physically she is not so great.
Sometimes the only way we truly understand what a gift life is is by being forced to choose it for ourselves,rather than the choice being made for us over and over.
If you disagree I completely understand.my point of view comes from watching my mother die a long.painful death during which I helped nurse her.the last six months I wished she could have been allowed to pass on her own terms rather than the way it was.
I am dithering whether to post this.i will,but am happy to delete it if it causes you pain.

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Sotired42
peregrine_USA

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Reply with quote  #8 
Sotired42, I understand what you are saying as both my parents have died and both, in their own way, did not go quickly. She does not want to live anynlonger and is tired. She shares frequently that she hopes each night she will not wake up the next morning. She does not live with us because her BPD rules her life so it is best if she is in a place where she is supervised but has as much freedom as safety will allow. The people there are kind and are trying to give her as few restrictions as possible. It is not the greatest but she has alienated people at facilities open to her. she twice OD'd late last year but then called for help because she was afraid she would die. She again was hospitalized (more than a total of 180 days last year) and now is living at this place.

I have tried to stay the course of fighting for her to get the treatment she needs, the food she needs, the assistance re therapy she needs just to have people to talk to as she is struggling. She has a wondefful special auxiliary team assigned to her but she often rejects the assistance they offer. I am being told even more frequently that I am working harder than she is and she needs to step up and fight. And, I too have prayed that God take over and give her the freedom that she craves while she is safe, sleeping at night.

So, one day at a time. Like many of you ai am reminded to take care of myself and I do that in a variety of ways. My husband offers patience and support and has been amazing.

I return here once in awhile to read what's going on in thenlives of others and to encourage others to seek help for their loved one early in this process. To wait gives the demon ED time to get its hooks in.

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Peregrine_USA
meadow

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Reply with quote  #9 
Hi Peregrine, I am devastated for you reading this. I really don't have any words of wisdom. All I can say is that I'm thinking of you, I'm inspired by your fighting spirit, and I hope and pray that both you and your D find peace and comfort xxx
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Reply with quote  #10 
Thank you for the update Peregrine. I am so sorry. You have been and continue to be amazing. I wonder where you find the courage and strength. We dont choose the hand we are dealt.
I hope you can find space for some sort of a life for you.
I wish I could say something amazing but I am struggling to find the words.
I wish you all hope. Xxx

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
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Reply with quote  #11 
Thank you for the update Peregrine. I am so sorry. You have been and continue to be amazing. I wonder where you find the courage and strength. We dont choose the hand we are dealt.
I hope you can find space for some sort of a life for you.
I wish I could say something amazing but I am struggling to find the words.
I wish you all hope. Xxx

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Izzo

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Reply with quote  #12 
Your post brought tears to my eyes - you sound so strong in the face of such a hard situation. My thoughts are with you xx
Torie

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Reply with quote  #13 
Thank you for posting, Peregrine.  I've been wondering how you were doing.  So sorry to hear that the difficulty continues - the Whack-A-Mole thing is the pits.  I feel so bad for you and your d.  Such a terrible terrible illness.

I hope you can take a bit of comfort knowing that your words may indeed help families new to this vile illness find encouragement to act now, as you say.

Glad to hear you are taking steps to take care of yourself.

Hang in there.  

Thinking of you. xx

-Torie

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mjkz

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Reply with quote  #14 
I'm glad you keep posting Peregrine from another long-time "we do the best we can with our adult children" parent.  Why doesn't the hospital staff try to curb her water drinking?  Yes, this is a medical issue and the simple solution is to restrict her water access.  If that means a 1:1 then so be it.  This is not rocket science nor do they have to defer to psych for something like this.


peregrine_USA

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Reply with quote  #15 
Thank you, everyone - new and so familiar. Your support helped me get through today. The internet and ATDT are a Godsend.
I felt like Shirley MacLaine in Terms of Endearment last night. This morning her doctor called to gell me her sodium had deopped to 118 and asked me to initiate a psych consult because he did not know what else to do. I connected him with my daufhter's psychiatrist and things started to move again.
She now has a sitter who is watching her like a hawk. The docs continue to restrict her fluid which is a challenge for her to figure out how to get around it. she threw her doc out of her room and will not listen to reason and said she really does not care anymore. Yet she isn't curled up in a ball in bed but rather dragging her sitter around the hospital and finding energy from where I do not know.
I cMe in to visit for a bit and with permission got her several snacks and a frozen yoghurt. Then she sent me home but this time with a big hug. I have notified her biodad of the situation. I do not know if he will go into see her.
One day at a time. We'll see if she will stabilize or self-sabotage some more tonight. Thank you again for your notes of support.

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Reply with quote  #16 
Hi,
I just wanted to chime in and thank you also for returning here to post. I hope you find encouragement and love here. I didn't know your story from awhile back but my heart breaks for you and the very long journey you have been on. You are a wonderful, amazing mom and I just pray that your daughter can find something in her to break this cycle. You must be very strong to still be hanging in there.


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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.
EDAction

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Reply with quote  #17 
Dear peregrine_USA,

I will pray for you and your D.  And I am sending loving thoughts your way.  


mjkz

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Reply with quote  #18 
Quote:
things started to move again.


Three cheers for that doctor!!!  I love a doctor who knows his limitations.  Glad to hear you got a hug.


peregrine_USA

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Reply with quote  #19 
Thank you for your support here. Last Thursday I met with my therapist and pretty much crien the whole hour. She remains in the hospital, where she would prefer not to be. Beds are scarce at the psychiatric hospital of choice. When her electrolytes are ok, no beds....and when she sneaks water and purges, a bed appears. She must hold her electrolyte counts in the normal range for 48 hours She has been working at reducing her purging and I received permission to bring in V-8 juice, which she had at least once. She supposedly was weighed yesterday but the number I was given does not jive with how she looks, so something is off. Her mood seems much better and she has been very receptive to chatting and hugs. She has had no sodas for awhile, which is wonderful. I wrote a piece about aspartame on my blog some time back that clearly illustrates how poisonous that stuff can be when consumed at the amount many of our family members do. Off of it, she is much better and her "self" rather than the ED is present a lot more. For the first time in a very long time she is watching movies and even asked to read a book I just ordered. For more than a year and a half, books have been of no interest.

So, who knows? One day at a time.

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Peregrine_USA
melstevUK

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Reply with quote  #20 
I am so sorry Peregrine.   I am not surprised you cried for the whole of the time you were with the therapist.

I am glad that your d is present as her real self, if only just a little bit.

There is no doubt, in my mind, that your d's longstanding illness is due to poor treatment at the onset, poor understanding of eating disorders and an assumption that the patient needed to be 'persuaded' to give up their restricting.  While it is no consolation to you - I have real hope that there will be less severe cases in the future because understanding and treatment has improved.

BUT, and it is a big but - could you present to your d that this is what has happened?  That it is not her fault or of her choosing that she is ill and has been ill for so long.  I would worry less about all the other psychiatric diagnoses such as BPD and focus on the ed itself.

Could she be persuaded - as much as she says she doesn't care about life - to give getting a recovery going one huge effort with your support and cooperation?  Would she accept whatever anti anxiety meds it takes so that she can get an eating and weight gain regime going and face down this ed monster once and for all?  So that she would know what it feels like to feel well again?  Could you manage to sell her that - what seems an impossible - dream so that she can come home and you can all at least live in harmony and then start building some small pleasures into the days again.

There are a lot of patients in their late 30s and 40s, I believe, in the UK who are classed as SEED patients (Severe and Enduring Eating Disorders) and we have a special unit in our city for this group of patients.  Your d was unfortunate to start her illness in a period when there was much ignorance and less than compassionate clinicians who had no understanding of what they were dealing with.  Ultimately our improved understanding of brain neurochemistry and brain imaging means there is so much more knowledge out there now.  Will your d buy into this assessment of what has happened and can you use it to your advantage to start trying to get her to a place of comparative wellness?  Even at her age she can still start to find out what her talents and interests are and her life could still have meaning.  

It makes me incredibly sad that so many young people were badly served.  She deserved better and you all deserve the best support and treatment you can find now.

Hugs. x

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Believe you can and you're halfway there.
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Torie

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Reply with quote  #21 
Quote:
Originally Posted by peregrine_USA
So, who knows? One day at a time.


That's exactly right.  We just never know what life has in store for us next - and once in a while, the surprises are good ones.  

So glad you have a t for yourself.  This journey is too hard to travel alone.

Hang in there.  You're an amazing mom. xx

-Torie 

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
mjkz

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Reply with quote  #22 
Peregrine, all I can say is thank God for therapists we can cry with.
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