Eating Disorder – How Will We Manage Lent and Easter?

It is hard not to love that little Easter Bunny. He is cute, cuddly, and so full of goodies. He makes you think of Spring, and he makes you think chocolate. It really makes one feel a bit anti-social not to love him. When you are the parent of a child with an eating disorder the Easter Bunny seems a bit sinister though. His eyes seem just a little bit beady; thatbunny smile looks less innocent, those white, pudgy, open hands look more like they are drawing you in rather than inviting you to have a treat, and that basket of goodies might look delicious enough, but I am well aware of the suffering they may bring.  I kind of understand how Little Red Riding Hood must have felt.  I found myself annoyed at his constant presence on my TV, radio, and computer.  The unchanging reality is, though, that I will encounter that rabbit every year at approximately this time and so will my son.
I remember that first year when Easter became something that I feared rather than anticipated. Our son had just come out of the hospital several weeks before we were getting ready to go into Lent. It was then that I realized it wasn’t just Easter that frightened me.  It was suddenly a fear of an entire season that was traditionally very beautiful to me. The season of Lent, for us, is a time of preparation for the Easter season;  a time of rebirth and joy. Now, suddenly, I looked at both with anxiety and uncertainty. What would all that chocolate and candy talk do to my son? How would we handle the issue of Easter baskets and Easter egg hunts? We have several other children. Would they have to give up their Easter celebration because their brother had an eating disorder? Even before we get to the Easter celebration, what would we do about Lent?
Lent is a time of preparation and penance.  It is typically a time when you hear people “giving up” something that is either very pleasurable or a temptation to them. This usually involves sweets and food of some sort or some activity such as watching TV. For many religions it involves fasting. As Catholics, this was the case for us. lentFasting meant cutting back on the portion sizes at meals and not eating between meals.  It did not necessarily mean that dessert could not be included in the main meal, but it is common to cut desserts out altogether.  Obviously, most, if not all, of the Lenten practices involved food in some way. So now what were we going to do?
This post is not intended to spark a debate about religious customs as no one’s mind is very likely to be changed one way or the other. Having said that; how was our family going to incorporate our religious beliefs within the framework of our son’s eating disorder? Did this mean that we stopped the practice of Lent and Easter altogether? Did it mean that we ignored the needs of our son and risk a major decompensation? The answer to both was no.
The first thing that was necessary was to take my own fear and panic and instead of allowing it to paralyze me, turn it into something more productive like a plan of action. This wasn’t easy! Panic very quickly paralyzes me and it takes a lot of my energy to turn it around.
The next step was honesty. We had a family meeting and we all talked openly about our feelings related to Lent and Easter. Our son had a chance to tell us what would be a trigger to him. He was able to discuss his feelings of guilt surrounding the impact of his eating disorder on the rest of the family and his brothers and sisters were able to express their feelings about its impact on this holiday. Everyone had a chance to speak and then we started brainstorming about what to do. This holiday would be different because of the eating disorder, but it didn’t mean it had to be unpleasant or adversarial.lent1
The first big hurdle for us was Lent. Obviously, the idea of fasting was a huge problem. Our faith does not teach us that we cause harm to our bodies. It does not teach us that we make ourselves sick or that the only form of penance is food. Making food the focus of our Lent would not have been in the best interest of our son. The idea is that we prepare ourselves spiritually for the coming Easter season. We could find things that were not food related that would be meaningful for Lent.  Our son wanted to participate in Lent and during this family meeting came up with a rather creative strategy. Giving up food would be a bit like giving up homework. Our son was to be eating three meals per day (including desserts) and three snacks which was very difficult for him at times. He was also restricted from exercise, something even more difficult for him to observe. He would, at times, exercise even though he was not supposed to and his weight was not moving very much during this period. He proposed that since giving up food was not only easy, but life threatening, he would choose to add a supplement to his diet and refrain from all forms of exercise during this Lenten period. This, of course, was in addition to following the meal plan. He felt that he would be participating in a meaningful way which was very important to him. This was done with the caveat of no guilt if there was a setback or hiccup along the way. An inability to carry out the plan at any given time was not a failure.
The discussion of Easter baskets also was creative. Our children decided that there would be candy in the baskets, but reduced some from previous years. Other items like small toys for younger children, gloves, hair ribbons and such could be substituted for the additional chocolate and candy. Since our son was older, his basket could easily be filled with non-food items which is what he requested. The Easter eggs for the Easter egg hunt would not be filled with only jelly beans and M & M’s that year. Instead they were also filled with pieces of paper containing “prizes” that included things such as a trip toeaster basket the store alone with mom or dad. Some eggs could be redeemed for such things as a coloring book, a pack of colored pencils or crayons, etc.  Everyone got to suggest something they would like to see as a prize.
Our family continued observing the changes that we made that first Easter season after recovery began. We have modified them over the years to reflect the ages and different needs of the family. We still begin every year with a family meeting just before Ash Wednesday to discuss what our plan will be for that year.  In subsequent years when our son was not living at home during Lent, we still checked in and assisted him with his plan.
I would not have a complete post if I didn’t include the importance of including your child’s treatment team in the plan. All of our ideas were run by our treatment team so that any problems or concerns could be addressed and our plan modified. My son’s desire to do something healthy for himself was encouraged with the hope that in seeing some measure of success, even if not perfect, he could carry this forward.
I will always remember that first year because I was proud of my son and of our family. We worked together. It wasn’t idyllic; it wasn’t a fairytale, and it certainly wasn’t without some bumps in the road. All of those things were expected and it was OK because we continued to move forward. We will never escape the commercialism of Easter. The bunny, the chocolate, and the emphasis on food will always be there. Before our son got sick we loved those things too, but it didn’t define the meaning of Easter for us. It was a happy easterpart of the Easter celebration, but Easter was so much more. Now, we put less emphasis on the food and candy. We don’t eliminate them, but we don’t run them up the flagpole either. There have been changes with time and I am sure that over the coming years we will continue to adjust and change with the needs of our son and the needs of the rest of the family. What I hope never changes, though, is the collaboration. Those family meetings are important. They contain their share of griping, complaining, and even finger pointing at times. In the end though, they have brought forth a great deal of creativity and have helped us all to work hard at not being defined by this wretched illness.

Eating Disorders – Mealtime and the Other Children

You stare blankly at the stove as you prepare dinner. Do I have enough protein? Is there enough variety? Are there enough calories? Did I remember to buy something for dessert? You look to see if you set the table and pause as you remember those once happy voices that sat there sharing their day as they ate. The conversation wasn’t aboutmom cooking dinner.jpg the food, and if it was, it was casual and involved a compliment or a request for an additional serving. What would tonight’s dinner conversation be……negotiating how much we’ll eat or if we will eat, how full or sick we feel if we eat this, whether or not dessert should be part of the meal, etc., etc.? And what about your other kids: will they become angry and yell at your son/daughter for their mealtime behavior? Will they sit quietly with wide and frightened eyes rushing through their meal and quickly asking to be excused? Will they try to be the peacemaker telling jokes and stories in an effort to distract and help mom and dad? You secretly wish you could go out and eat by yourself somewhere and then immediately feel guilty about the thought. Does this scenario sound familiar to anyone? Continue reading Eating Disorders – Mealtime and the Other Children

Caregivers and the Necessity of Sleep

You hear the alarm and despite your best efforts you keep falling asleep. Finally, you sit up and you feel that nervous feeling. Your heart is racing, your ears are ringing, your eyes burn, your head and your body ache. Am I coming down with something, you wonder? You look out the window and the colors look dull, the landscape just doesn’t looksleep deprivation.jpg the slightest bit cheerful or inviting. You feel irritable and even angry. Decisions seem overwhelming, especially the decision of whether or not to just get out of bed. On the other hand you feel too restless and agitated to stay in bed. Getting to work or just starting your day seems insurmountable. Are you depressed? Maybe, but these are also the symptoms of sleep deprivation.
One of the first questions psychiatrists and therapists ask during an interview with their patient is about sleep. This is because so many mental illnesses involve sleep difficulties as a symptom. I remember when my son was sick his sleep pattern was completely reversed. He was up all night and then slept most of the day, but he was never rested and neither were we.  Even such disorders as ADD, where hyperactivity is not present, sleep problems are now being recognized as a symptom.  Looking back I wish I had intervened and insisted on more regular sleep schedules much sooner than I did.

There are many theories out there as to why this is true and there is even new evidence that chronic sleep deprivation may cause anxiety and depression where the reverse was always thought to be the case. Whatever the reasons though, everyone can agree that sleep is vital for our physical and mental health. Without it we are not able to properly function and whatever our physical or mental health problems, lack of sleep makes them worse. Even those very healthy souls will not remain healthy without proper rest.
Sleep difficulties not only plague those with mental illness, but they are common among caregivers too. There is not one support group that I have been involved with where this was not a very common complaint. While the concern surrounding sleep was most often for the child with the eating disorder, the reality is that just as much concern and attention kids not sleepingneeds to be paid to the caregiver. Very often parents and caregivers, who are in what seems to be constant fight or flight mode, become dangerously sleep deprived and depleted without anyone noticing until a physical or mental health problem arises. Let’s face it, as a parent, even when our kids are not babies we still wake up easily. I call it that “mother’s ear” (maybe “parent’s ear”) that recognizes the slightest irregularity in the nighttime quiet and can wake us out of the soundest sleep. When we are the parent of a child that is suffering from a mental illness such as an eating disorder we often don’t experience that deep sleep at all. We may feel very depressed and anxious, but attribute those feelings to the worry and stress related to caring for our child. That would be a very reasonable, and accurate, place to lay the blame. Even so, sleep deprivation could also be causing those symptoms, or at a minimum making them much worse.
There is nothing that is going to completely erase the worry and anxiety we feel short of the disappearance of the eating disorder. Even then we will probably worry about whether or not it will return. The good news is that there are things we can do to relieve some of the symptoms and sleeping is one of them.  I have listed some ideas below:
Identify the problem: If your child is not sleeping at night, is the problem behavioral, physical, or both. If the problem seems to be that your child just cannot fall asleep or stay asleep, talk with your doctor and your treatment team to see if there are some strategies or medications that would help. (I will address behavioral below). If you are not able to fall asleep or stay asleep for reasons other than physically being up with your child, talk with your doctor.
Sleep is a family affair: Just like meal times are scheduled and a family event, so also should sleep. The family needs to be on a sleep schedule. Set a bedtime for your children ILLUSTRATION: Person sleepingand stick to it. Set a bedtime for yourself as well. Getting up at the same time each morning and going to bed at the same time each evening sets the sleep “clock” and helps regulate your body to a schedule. Ensure that at least 8 hours are being set aside to dedicate to sleep.
Set aside time for you and your spouse: Set the children’s bedtime an hour or so before yours. This allows you to unwind and/or to spend some time with your spouse. You might take a hot bath, read a book, or talk during this time, but it sets your mind to unwinding. Try to focus on activities and conversation that is calming and not likely to give you a “second wind” or stir you up.

Take away phones, tablets, and computers: Take away phones, tablets, and computers at least 2 hours before bedtime. This allows your child to unwind and be free from social media and other distractions that activate the mind. Put phones, tablets, and laptops out of reach so that they are not a temptation and you do not have to get up to check if they are being used “under the radar”. Encourage reading or a quiet activity before bed.  Putting these items away a couple of hours before bedtime isn’t a bad idea for adults either.
Establish consequences for bedtime violations: If you have to get out of bed several times to tell your child to get into bed then you are not sleeping and it activates your mind and winds you up. If your child is not staying in bed (without a good reason) and this is becoming a routine, establish consequences and enforce them. Making the phone, tablet, or computer something that is earned with proper bedtime behavior always seemed to work well in my house. Phones, tablets, and computers were only available the next day if bedtime rules were followed the previous evening.
Establish a curfew for older kids: For those of us with kids in college in addition to younger kids at home, enforce a curfew. Parents cannot sleep well when they have no idea what time their child is coming home (and is out driving!). Perhaps have them come and tell you when they are home so that you can sleep well before and after. No one sleeps well when their child comes home in the middle of the night and throws on the lights, gets a snack, showers, etc. In addition to establishing a curfew, insist on quiet, considerate behavior if they come home after everyone else is in bed. Enforce consequences for violation of curfew or considerate behavior.
Take turns: If you have a situation where you must check on your child during the night (ex: child might exercise in their room), take turns. This should not require you to get up multiple times (if it does then it should be addressed with your treatment team). If you must get up and check on your child during the night, rotate the nights with your spouse. If you are the only parent, set an alarm so that you are not losing sleep worrying whether or not you will wake up.
Consider alternative sleep aids: In addition to any medication your doctor may give you, consider other methods to help you relax and improve your sleep. Some examples are walking, acupuncture, white noise machines, guided imagery, relaxation tapes, relaxing music, and diffusing essential oils. This is not an exhaustive list; there are many sleeping inother methods as well. I tried acupuncture and found it not only a great way to aid sleep and anxiety, but also relieved a painful hip and tennis elbow which were also interrupting my sleep. See My First Experience with Acupuncture.
Take turns sleeping in: Take turns with your spouse sleeping in on the weekend. Having a day to just relax in bed later than usual can be very helpful. Take turns with your spouse, if possible, and provide one weekend day for each of you. I do caution not to sleep so late that you cannot fall asleep that evening. Try to stay within an hour or two of your normal wake-up time.
Cut down activities: Evening activities can often make bedtime very difficult to adhere to. If you are falling into that category or your children are, consider cutting back on those activities or rearranging your schedule so that bedtime can be consistent. Examples include getting homework done before leaving to activities, planning dinners so that they are not eaten after 8PM, having one spouse prepare lunches, etc. for the next day while the other spouse drives to the activity, etc.
Sleep should not be something that you “catch up”. It should be something that is a routine and something that includes the entire family. The malnourished brain needs that sleep to help heal.  Parents and caregivers who are sleep deprived are not functioning well either. There is no such thing as “Supermom or Superdad” when it comes to sleep deprivation. We all need to sleep and there are few places where that rings more true than as it relates to parents and caregivers. You are not depriving your child by considering your need for sleep as well as theirs. You are, in fact, setting the example for self-care, boundaries, and self-respect. You are teaching your child a valuable lesson when you take care of yourself and that includes your need to sleep. As I have said many times before, those suffering with eating disorders have not internalized the concept of caring for their bodies and feeling ok with that. When you do something as simple as ensuring that you are sleeping well, you are setting a great example and you are also making sure that you are available to your child/loved one. Sleep isn’t going to cure the eating disorder and it isn’t going to resolve all of your worries and difficulties caring for your child.  It will help though.  It will help you feel less behind the 8 ball, it will help you think more clearly, it will help your energy level, and it will help manage some of the anxiety and depression.  It will help your child too.  Eating disorders feed on our vulnerabilities and lack of sleep makes us very vulnerable both as patient and as caregiver.

The list above is by no means exhaustive.  I would love to hear  your successes and struggles with sleep and just parenting/caregiving in general.

Eating Disorders-A Letter to My Son

I remember the day that we made the decision we could no longer adequately care for our son at home. That decision should have been made long before it was, but as I have said in many other posts, we deluded ourselves as much as he did. I remember feeling that we had failed. He felt very abandoned when he was admitted and his thinking was quite distorted. I have heard the same things over and over discussed in support groups by grieving parents who are devastated at the anger and distortions that their loved one expressed at being admitted inpatient. I wish I had put something in writing for my son; something he could continue to have referred to when he was feeling so alone and angry in the hospital. letter to son
Caregivers go through their own grief, anger, and feelings of abandonment when they have to make this decision. They often feel guilty, worthless, failures, and it isn’t easy to know how to respond to the understandable outpouring of anger and desperation of their loved one. I know I didn’t know what to say. If I had put something in writing to my son, it would have looked like what follows.  I hope that parts of this resonate and can be of value to those caregivers just beginning their eating disorder journey. Continue reading Eating Disorders-A Letter to My Son

Eating Disorders – Should Abusive Behavior Be Blamed on ED?

One of the things I have always found curious about eating disorders is that they seem to be the only mental illness which is given a distinct name and even a separate identity. Only is probably too strong a characterization, there are likely those who give names to other illnesses as well, but eating disorders would win the prize for the highest percentage in that category. We are all certainly familiar with the term ED, which often doesn’t just abbreviate Eating Disorder, but is often referred to as “Ed” (as in short for Edward). I have also seen “Anorexia” used not just to define a particular aspect of an eating disorder, but as a dangerous bitch that whispers bad messages to our child and attempts to take their life. argument.jpg
I personally didn’t choose to give the eating disorder a particular name for a variety of reasons (see “To Name It or Not to Name It”), but I see the logic in those who do choose to do so. Where I disagree with giving a specific name and identity to an eating disorder is when that eating disorder persona becomes the scapegoat and the excuse for behavior that otherwise would not be tolerated. It is when “Ed” or “Anorexia” is permitted to behave in ways that Max or Susie would not. So, what exactly are you referring to Christina, you ask? I am referring to the times that I have heard of kids and even adults screaming at their care providers, sometimes in the most colorful language, berating them and calling them the most hurtful names. I am referring to the throwing of food and objects, sometimes at the parent or careprovider. I am even referring to pushing or striking a parent or care provider. I have seen this behavior excused both at in-person and on-line support groups as “just the eating disorder talking”. I have heard statements such as “let this go, you know it isn’t them talking”, “the eating disorder is loud and proud today”, and “just walk away and ignore it because if you don’t Ed or Anorexia will think that they have won”. I am sure that this will sound controversial, but if nothing more than walking away occurs each time this behavior is displayed, I would argue that “Ed” and “Anorexia” did win. They won the right to be abusive toward their caregiver and cast the blame outside of themselves and that is really what this post is about; the rights and needs of caregivers. Caregivers of children and loved ones with eating disorders have a lot to manage. Being the team lead, managing the rest of the family’s needs, and the stress and worry over the health of your starving child/loved one is enough to contend with; abuse should not be on that list. I am assuming that we can all agree that physical abuse is something that should never be tolerated, but what about verbal abuse? Continue reading Eating Disorders – Should Abusive Behavior Be Blamed on ED?

Considering Your Needs as Caregiver is not a Selfish Indulgence

One of the biggest difficulties for me while raising my own children has been the lack of family time. There were so many demands with work, school, and evening activities that finding time to be together as a family or to relax at all was difficult. We were running constantly. If I were to begin raising my kids again I think that is what I would change first.

There is no parent that doesn’t want to see their kids happy. During thesports.png time in which I have been raising my children, the definition of happy and well-rounded seemed to be having the kids involved in every activity possible. They were involved in baseball, softball, football, soccer, horseback riding, and 4-H to name a few. Every evening of the week we were running somewhere. Sometimes it was far enough away that I had to stay and sometimes it was just a drop off and pick up in 2 hours. Regardless, it was quite hectic. We rarely ate dinner together (and what we did eat was often without supervision and not what I would have considered “dinner” food, or it was fast food grabbed and eaten at the evening activity which got expensive); we rarely had time to talk about the events of the day and my husband and I had almost no time to talk privately with each other. Dishes were cleaned up after 8PM; homework was started at 9 or later and showers and bedtime were generally after 10PM. Although the kids were happy and excited about the evening’s activities, they were wound up and settling down for bed was difficult. Younger kids who were dragged along to an activity were in complete melt-down by the time we got home. By the time my husband and I got to bed we were ready to collapse. The weekends were spent catching up on shopping and errands in addition to kid’s activities. Even Sunday had become just another day of the week with sports and activities being scheduled that day too. Where were the Blue Laws when I needed them? Continue reading Considering Your Needs as Caregiver is not a Selfish Indulgence

Eating Disorders and New Year’s Resolutions for the Caregivers

The holidays are over now and I talked about supporting your child through the maze of New Year’s Resolutions in my last post.  This time I would like to talk about New Year’s Resolutions for moms and caregivers in general.  Chances are that if you have a child or close family member with an eating disorder your personal resolution isn’t going to be busy mom.gif.jpgrelated to dieting and exercise.  That doesn’t mean that because you have a child with an eating disorder you are forbidden to attend to your own needs regarding nutrition and exercise.  That is addressed in other post though.  Today, I am going to talk about some resolutions that relate to reducing stress. Continue reading Eating Disorders and New Year’s Resolutions for the Caregivers

Eating Disorders and New Year’s Resolutions

It is, unfortunately, that time of the year to trot out all of the New Year’s resolutions.  Do resolutions.jpgyou dread them also?  I don’t have a problem with resolutions, just what they seem to stress and represent at this time of the year.  This is a post from last year, but I think sadly, it is true every year.   Continue reading Eating Disorders and New Year’s Resolutions

Holiday Stress Revisited and a Bit Revised

The TV, radio, and social media are all talking about the anticipation in the air.  The holiday season is here.  For many of us, what is in the air feels more like anxiety and panic.  The anticipation isn’t always something we welcome.  Do you ever feel like the holiday season and dealing with your child who is suffering with an eating disorder is stress leveljust too much?  Juggling shopping, parties, work schedules, decorating, cookie baking, visiting relatives, travelling, etc. can be exhausting under the best and happiest of circumstances.  When you have a child or loved one with an eating disorder, whether in recovery or still struggling to get there, it can feel like it is just too much.  Continue reading Holiday Stress Revisited and a Bit Revised

Were Previous Generations Practicing FBT?

During the course of my son’s illness we utilized a variety of approaches to help him recover. As I have written in other posts we didn’t really employ any one specific method, but instead utilized many different modalities of treatment and sometimes wefamily dinner.jpg “played it by ear” and did what just seemed to make the most common sense. We worked in conjunction with a wonderful therapist who also was very flexible and if it was working didn’t change it and if it wasn’t working explored the reasons why and helped us make changes to the treatment plan.

At the present time The Maudsley Method or Family Based Treatment (FBT) is quite popular and enjoys a great deal of success. There were many aspects of FBT that we incorporated into our own treatment plan. Continue reading Were Previous Generations Practicing FBT?