I remember that first Memorial Day weekend when we were recognizing that our son had something seriously wrong. The weather was beautiful and I had bought flowers for the garden. My anxiety level was high that morning as it had been for quite some time. In my heart I had known for a very long time that a problem existed, but there was always an explanation and, for a long time, the symptoms waxed and waned. Food wasn’t really involved yet either, just exercise. I was still at that point where I thought logical arguments would win the day. That morning, though, I remember how edgy I felt. Despite the beautiful colors of the flowers, they just didn’t look very bright to me. The sun didn’t look the same to me and even the warmth of the sun felt different.
Then my son came outside preparing to go for his run. He had that pained expression on his face and I could clearly see that he had lost more weight. He took off down the street, but didn’t return at the usual time. This time he obviously ran longer.
When he returned I was angry and so was his father. Despite my best efforts to control my irritation, I just couldn’t and we started arguing. As you would expect, the argument went nowhere except to increase frustration and cause hurt feelings.
That summer was horrible because school was over and he didn’t have much work and had very little to occupy his time except exercise. That was the summer when the calorie restriction began. If I had to assign a number to or a ranking order of the of mistakes I made, it couldn’t be done. I made them all and the eating disorder was debating me under the table. My son was legally an adult and was refusing to go for treatment. My other children were very negatively impacted by their brother’s personality change, his behavior in general, the conflict that it caused with their brother as well as conflict between their parents, and the soaring, constant anxiety of their mother. The eating disorder couldn’t have written a better script or, should I say, we were the perfect actors and followed it to the letter. Our son became sicker and we all got sick with him. We became isolated as a family and there seemed to be nowhere to turn. I felt like a rat trapped in a cage.
Summer brought unique challenges that I just didn’t anticipate and was not at all prepared to accommodate. Looking back I can see that the warm weather meant an increase in available exercises (running more often, swimming, sports, etc.). It also meant much more free time. Free time that would be spent obsessing about exercise, muscle mass, weight, and food. It meant more free time to explore the internet looking for that one article which would refute mom and dad and justify what he was doing. That free time was bad for everyone. My other children didn’t want to have friends over; we didn’t accept cookout invitations and found ourselves making excuses not to have events or parties at our home. The vacation we took was disastrous because our son simply transferred his exercise routine to the beach and insisted that he would not eat what we were eating. Restaurants were out of the question because he either wouldn’t go and we had to be concerned with what he was doing if we left him behind or endure eating in a restaurant while he sat with us and ate nothing. Because it was not home and the living area much more confined, we all felt trapped and everyone secretly just wanted to go home. I remember looking around at the beach, the beach house, the sunset, the sunrise, the ocean. These were always things whose beauty I loved and appreciated. That year all of the colors seemed dull. The sunrise just seemed to be a harbinger of another day of anxiety and conflicts about food and exercise, the colors more a warning that another day was beginning instead of a peaceful promise of a new day.
I was never so glad to see Fall and the start of school and activities again. I vowed that our son would either voluntarily go to treatment or I would have it forced (he volunteered) and also that summers and “down time” in general would be managed very differently.
When you are a caregiver in the midst of an eating disorder (no matter where you are on the continuum of recovery) it isn’t easy managing when routines are normal, so downtime and summertime is much worse. I will share what we did to help, but I won’t tell my readers that this solves all of the problems or takes all of the anxiety away, because it doesn’t. We, as caregivers, do the best we can with what we have. It is possible to find relief though and to make things better.
For us, healing the entire family and factoring all involved was what worked best. When that next summer was drawing near the first thing we did was to meet with our treatment team and talk about what happened the previous year. We shared the impact that this had on everyone and our son was able to share how difficult it is for him to manage free time. Our wonderful outpatient therapist worked very hard with him to help him understand why this was difficult for him and to develop ways to constructively manage his free time. This also applied to the rest of the family. I personally learned that anxiety is paralyzing for me and that finding things to do with my time is very helpful. Below are some suggestions to help cope with summer. It won’t cure the fact that eating disorders are extremely disruptive to everyone, but I hope that it will help mitigate some of the tension and bring a bit of relief.
Meet with your Treatment Team – Start talking with your treatment providers before summer is upon you and develop a plan with your team to address your concerns. Your providers know your loved one the best and can help you develop activities that are in line with where he/she is in the recovery process.
Have a Family Meeting – Family meetings were fantastic for us. A lot was resolved during these meetings and we were able to come up with some very creative strategies to deal with problems and concerns. All of the children felt included and felt like they were part of the process. It helped us to continue to function as a team with a common goal.
Keep a regular routine – Keeping a routine, especially for your eating disorder child is important. During the summer, sleep patterns change and kids often want to stay up late and sleep in late. This might not be a good idea for your child. Sometimes late nights can lead to unconstructive activities such as internet searches related to food/exercise, undesirable TV watching, etc. Sleeping until afternoon can sometimes leave you feeling sluggish and increase depression.
Prepare a list of activities – These activities might involve summer camps for your non-eating disorder children (even your eating disorder child depending on where he/she is in recovery), community centers, Youth groups, YMCA/YWCA groups, etc.
Schedule Day Trips – If vacations would be too stressful this summer, consider some day trips to places within a reasonable drive from home. Have everyone pick a place they would like to go during a family meeting and mom and dad decide on which ones are feasible. Perhaps a trip that involves a weekend or just one overnight stay would be possible.
Consider a part-time job – A part-time job is often a good thing to keep a routine going and offers something to look forward to. Often friendships are formed at these jobs and it helps decrease social isolation.
Consider volunteering – There are often lots of opportunities to volunteer. Day cares, camps, libraries, food banks, hospitals, senior centers, nursing homes are all examples where volunteers are welcome. This will also decrease social isolation, may promote friendships, and can boost self-esteem through seeing the gratitude of those you are helping.
Take a summer course – There are often many summer courses involving art, painting, sculpting, crafts, writing, or pretty much any hobby you might enjoy. Take something fun that can be enjoyed at home as well and used to fill free time when needed.
Spend time with grandparents or other relatives – This one would depend where you are in the recovery process and how well your relatives would be able to deal with eating disorder behaviors, but I am adding it to the list because sometimes another set of hands has a positive effect on everyone.
Make a list of projects to do at home – During your family meeting make a list of things that you would like to get done around your house. Would you like a garden this year (flowers)? Does the garage or basement need to be cleaned? Would you like to finally redecorate that family room or bedroom? Think of some things that are not too strenuous that you all could do and make it part of a schedule.
Consider a separate vacation – If you are in that very acute stage of the eating disorder where things are very tense and recovery not very far along and vacation not recommended, consider mom and dad/caregivers taking a separate vacation. That way you each get away for a few days and perhaps some of the other children can come along. It isn’t as ideal as a family vacation, but for this year maybe it is where you are. Remember, you won’t be in this place in your life forever.
As caregivers, it is important to work yourself into the family summer plan as well as everyone else. You obviously want to help your child/loved one manage the free time that summer brings. You also have to consider what you need. While you are making the schedule for your child with the eating disorder and your other children, consider that you might not need a schedule like theirs for yourself. You might find that you need more socialization and support or you might feel exhausted welcome some quiet and less stimulation. It is OK for your needs to be different and it is OK to try to meet those needs. Ask for help! Don’t feel ashamed to ask grandparents, aunts, uncles, and friends to help you with driving and picking up from activities. Don’t feel ashamed to ask a friend to listen to you vent your frustration. Rely on your treatment providers. They are there to help you and want to hear from you when you are having a hard time. Communicate with your spouse or other caregiver. Let them know when you are overwhelmed or feel that something needs to be changed. Don’t wait until your anxiety and frustration boils over; address it as soon as you feel it.
I wish I had done some of these things that first summer. It wouldn’t have made things seem as if nothing changed because things did change; our son had an eating disorder. It would have mitigated against some of the difficulties described above and it would have provided some relief until things changed again (and they would). I can say that I have done some of them since and it has provided relief for all of us. As I always remind my readers (and myself), it isn’t perfect and it isn’t idyllic, but it doesn’t have to be. I wish everyone some relief and healing this summer.