A Crisis Plan for Caregivers

Have you ever found yourself unable to get out of bed or going back to bed once your husband and kids have left for work and school, not getting up again until they return?  Are you crying all the time and finding the smallest tasks completely overwhelming?  Do you find little very little enjoyment and even more difficult to laugh?  Are you having thoughts that your family would be better off if you were just not here anymore?  These are the thoughts and symptoms of someone who is in crisis.  There are many more that could be added to this list, but you get the point.  At this moment the crisis is happening whether realized or not.  There were many warning signs that a crisis was coming though; signs that probably were going on for a long time and either ignored, pushed aside, or maybe just thought of as normal, but they weren’t. Those signs could have come in many forms.  It may have been sleeplessness, high anxiety, or irritability.  It may have been that you lost pleasure in things you used to look forward to doing.  Perhaps you started refusing opportunities to get together with friends or relatives.  Or maybe you noticed that your body ached all the time.  Frequent headaches and stomachaches may have left you unable to go to work and you have used a lot of sick time.  Maybe nothing looked the same to you anymore; colors didn’t seem as bright and nothing in your landscape seemed inviting or interesting any longer.  Does it feel like your situation simply has no end? This is by no means an exhaustive list, but they are all warning signs that you are becoming depleted or even depressed.  They are all red flags that a crisis may be coming.

As caregivers we think of ourselves as managing a crisis, not having one.  The truth is, though, that caregiving is very depleting and many caregivers find themselves in crisis at some point along the journey.  It is easy to forget that we are as human as those we are caring for.  Being a caregiver can trigger and dredge up many past memories for us, some possibly very traumatic.  This, coupled with the worry and concern for our loved one, can just be too much sometimes.  Many caregivers find themselves sitting in their doctor’s office getting treated for high blood pressure, migraines, stomach distress, aches and pains, etc., and neither the patient nor the doctor recognize, or maybe acknowledge, that this might be stress related and a mental health issue.  Not that the pain or the high blood pressure or the other complaints are not very real; they are.  It is the fact that they may be related to or even caused by the enormous stress that the patient is under as a caregiver that is often missed.  Because it is missed and the symptoms, not the cause, are addressed, little changes and things often escalate to the point of a crisis.  What that crisis looks like is individual and can vary from person to person, but it is serious and needs attention.

Caring for a child or loved one with an eating disorder is very hard and that is a huge understatement.  It is a 24 hour/day job.  You need eyes in the back of your head to keep up with the sneakiness of the disorder and even that will not be enough.  It is easy to see why caregivers do not seek help.  They are so caught up in managing the day to day crises of their loved ones that they often don’t even notice what is going on inside themselves.  They don’t feel that they can take the time away to deal with what, to them, seems small by comparison.  They worry about what would happen if they themselves were hospitalized and not available to care for their loved one.  Suddenly, without warning (although there were probably many warnings), they find themselves completely unable to cope, completely overwhelmed, too sick to get out of bed, or maybe feeling that they want to end their life or afraid that they will impulsively end their life even though they aren’t sure they want to die.

Sadly, many caregivers ride those feelings out by staying in bed, leaving the house for awhile, drinking, over the counter medications, or just gutting it out and continuing their normal routine.  Many times the crisis seems medical with the sufferer believing that they are having a heart attack or stroke (and sometimes they do!) and they end up in an emergency room.  Sometimes, a savvy emergency room physician recognizes the root of the problem and a good mental health referral is made, but often the physical symptoms are addressed and the patient is sent home with little more than reassurance that nothing life threatening caused the symptoms and a prescription to relieve them.

Based on my own experience as a caregiver I would say that two of the most important plans I could recommend is a plan to prevent a crisis and a plan to address a crisis if one occurs.  As parents and other relatives/friends caring for a loved one with an eating disorder we have a plan to address both with our loved ones.  We know what we will be doing to try to prevent a medical and mental health crisis and we know what we will do should one occur.  We have generally enlisted the help of mental health and medical professionals to assist us and we know who to call when necessary.  This is exactly what we should have in place for ourselves as well.  We are a team and unless all members of the team are equally important the team cannot function.  All members of this particular team need a “crisis plan”.

Below are some suggestions for both preventing a crisis and a “crisis plan” should one occur.

Talk with your Primary Care Physician:  Do this as soon as your child/loved one is diagnosed with the eating disorder.  Be completely honest with your doctor and talk about the symptoms you are having.  Make a plan with your doctor to see you more frequently. Talk about medication.  If your doctor doesn’t seem receptive, find a doctor who is.

Get your own therapist:  Don’t wait until you have a crisis to find a therapist for yourself.  Many support groups are now recommending that caregivers find a therapist of their own to help them cope with the stress of caregiving.  That person can be a lifeline when you are feeling overwhelmed and will recognize symptoms of depression and warning signs of a crisis and will help you to recognize them as well.  They can work with your primary care physician or make a referral to a psychiatrist if necessary.

Join a support group:  Joining a support group can be very helpful (See Support Groups:  On-Line, In-Person, or Both?).  This is also something that is very worthwhile to do at the very beginning of your journey.  Support groups are very valuable because you are talking to people who are going through the same experience and often friendships are formed.  Many support groups have a plan for members in crisis.

Communicate with your spouse or other caregiver:  Make sure that you are communicating with your spouse or other caregiver and they are communicating with you.  Do this from the very beginning.  Look for warning signs in each other as well as yourself.  Work together as a team and, if this is not happening, consider marriage counseling or family therapy to address these problems early on.

Consider Acupuncture or Massage to help alleviate stress symptoms:  This is often a very helpful break and therapy to relieve some of the physical symptoms of stress. Both have been used very effectively in conjunction with modern medicine and therapy with a mental health clinician. It adds another professional to your support list and another set of eyes to help recognize signs that more intensive help or treatment is needed.

Keep a journal:  Keeping a journal of your feelings is a very helpful way to monitor how you are doing. For some drawing or other artwork can serve this purpose as well.  This is often a good outlet for identifying and elaborating on your feelings and also can assist in alerting you that more help is needed.  Make notes about increased irritability, loss of energy, more frequent outbursts of anger or tearfulness.  Also make note of a decrease in emotion.  Are you feeling numb or unable to express emotion even when you want or need to? Rate your anxiety and depression levels in this journal every day (a scale from 1-10 is customary).  Make separate entries for depression and anxiety scale ratings. Is the number steadily rising or staying consistently higher? Decide what number would indicate a need to seek additional help (generally something 5 or above is customary, but lower is good too.) This journal can be a valuable aid in therapy as well.

Enlist the aid and assistance of others:  Right from the beginning enlist the help of grandparents, other relatives, and friends to help with transportation, babysitting, housework, shopping, cooking meals for the week, or anything else that would fit your individual circumstances.  From the first moment of your journey make asking for help part of your plan.  Most people hate to feel helpless and love to be needed.  Those that love you will likely appreciate being asked for help and will welcome concrete suggestions as to what would be helpful.

Find a good listener:  Often that person is a trusted friend, relative, mentor, or even support group member that can listen to you when you are frustrated, sad, or just need to vent.

Write a list of symptoms/feelings that signal a crisis:  Make a list of the things that you feel would indicate a need to seek help immediately.  That list will be individual and vary from person to person, but certainly death wishes, a desire to give up, or thoughts of harming yourself or others would be on every list.  Keep that list handy and resolve to abide by what is on that list for seeking help.  Often we can talk ourselves out of believing it is really “that bad” or it is very inconvenient right now, etc.  Use that list as a benchmark.  If you experience what is on the list, you call for help.

Have a crisis number available:  Know what numbers are available should you reach a crisis.  Have the number for nationaleatingorders.org helpline available (800-931-2237 to call.  You can go online as well. Text them “NEDA” to 741741 to be connected with a Crisis Text Line trained volunteer).  Suicidal caregivers call 911.

Know who you can call in a crisis:  In addition to the number above, know which family member or friend you can call to come and sit with you.

Keep the number of your therapist or support group contact handy:  Talk in advance with your therapist, primary care doctor, or support group leader about how to contact them in a crisis.

Know the emergency resources in your area:  Many psychiatric hospitals and clinics have walk-in hours for emergency evaluations.  Know which ones in your area offer this and keep the hours and phone number in an accessible place.  Many emergency rooms have a separate area staffed with mental health professionals on call at all times.  Know which hospitals in your area offer this.

Caregivers don’t normally have their own crisis plan, but they should.  Know who you will call to come and sit with you so you are not alone while waiting for help or who might go with you to a facility for help.  Know who you will call to guide you to the next step (therapist, doctor, support group member) and keep their number handy.  Know where to go should you need emergency mental health services and your therapist, doctor, support group member is unavailable.  Have a plan in place from the first day you become a caregiver.  You may never need it but, if you do, it could be a life saver in so many ways.  Don’t wait and don’t be afraid to say you need help.  If you won’t do it for yourself, remember that your child/loved one need you to be physically and mentally healthy in order to be an effective caregiver.

This is by no means an exhaustive list, so please feel free to join in!




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