As a someone who suffers from a chronic illness, it is common to need your own “support tribe” to help manage your day to day life. Often this falls on the spouse or partner (if you are in a relationship). But this could be anyone including a friend, or other family member.
Since my chronic illness diagnosis six years ago, my husband has been my main caretaker. At the time, we lived over 3,000 miles from any family…so we had to lean into each other and ride the waves of the “chronic life” together. After we became pregnant with our son, we made the decision to move closer to family—so while I was 6 months pregnant we made the move across country to North Carolina for my husbands job.
Being in a new town, with a new baby; we quickly discovered that; yes we were (somewhat) closer to our families–but we were faced with an even more daunting situation than before—we now had a newborn (that never slept more than 30 mins at a time for the first 6 months of his life), a new job (for my husband), and my chronic migraine attacks; which coincidental became MUCH more severe after giving birth. Family did come and help as much as they could, but my husband became the main emotional, physical and now financial support for our family. I was completely unable to work- which to be honest we had decided prior to moving, that it would be good for me to take a year to enjoy being a new mom and get acquainted with our new town. When we lived in Oregon, I worked full time most of the 5 years that we lived there and juggled surgeries, chronic migraine attacks and infertility treatments.
When we took our wedding vows 15 years ago, we never imagined the “in sickness and in health” part would happen so early on in our marriage. All in all, my husband has done a fantastic job of juggling the last two years. These past two years have been significantly more challenging than the other four years since being diagnosed with chronic migraine, because we now have another human to care for; our son. Being a “chronic parent” is hard, and being a caregiver to a “chronic parent” is an even more daunting task. There have been some REALLY hard days in our marriage–and there will be more–but we are both extremely committed to our relationship and making this marriage work. We love each other, and take our vows very seriously.
Since having our son; the emotional, physical and mental strain has become increasingly hard for my husband. He is our main source of financial income, since I am currently unable to work. He also helps me out often with trips to the doctors, and juggling his schedule to step in as primary caregiver for our son, when I am having a bad attack. Furthermore, he is my emotional support when I fall apart from having a major setback or a really bad flare day (week or month).
A few months ago, it became apparent that he was at his breaking point and was beginning to experience Caretaker Burnout. After six, long and hard years of surgeries, infertility, pregnancy, losing loved ones, moving cross country, starting a new job, inpatient hospitalization and relentless chronic migraine attacks; the weight of being the #1 caretaker began to take a toll on my husband mental and physical health.
Signs of Caregiver Burnout
There are some great articles out there on the internet that address this topic, but I found this comprehensive list here. The signs include:
- You no longer find pleasure in things you once found enjoyable, or you have no motivation to participate in previously enjoyed activities
- Friends and family have expressed concerns about your well-being
- You’re getting negative feedback at work
- You’re having problems with your spouse
- You experience intense and recurrent feelings of anger, sadness, worry or fear
- You have difficulty concentrating, trouble sleeping, notice drastic weight changes (significant gain or loss), or unexplained health problems
- You find yourself using a substance to cope with, manage or suppress uncomfortable or painful feelings.
The author notes that there are also signals caregivers should know that indicate they’re at risk for developing caregiver burnout in the near future. These include:
- Regular thoughts of anger or resentment toward the person you’re caring for
- Irritation toward others who aren’t helping with your loved one’s care
- Isolating yourself from people who aren’t involved in providing care to the person
- Consistently arriving late to appointments or to visiting the person receiving care, or often leaving early
Since November is National Family Caregivers Month; I felt the need to address this issue. Caretaker burnout is 100% REAL; do not be fooled, it happens and when it does the wheels can quickly start falling off the bus. I felt it was extremely necessary to highlight some key areas in assisting in caretaker burnout. So I have compiled five strategies/tips that could benefit others who are in a similar situation to our family.
TIPS to Navigate Caretaker Burnout:
Communication, Communication, Communication: In any relationship communication is a KEY to success, but in a chronic health/caretaker situation it is VITAL. Ensure that caretaker and patient are in constant communication with each other about their needs. It is 100% ok for the Caretaker to say, “I need a break”–or “I am feeling overwhelmed”.
As the chronic patient, it is important that you DO NOT take this personally ( I know I always do and am working on this :)). My husband and I have had many a disagreements over this-which usually ends with me spiraling into an attack. We are still navigating the best way to communicate this information to each other- there is no right or wrong way. But keep the lines open–however you decide to communicate with each other.
Caretakers SHOULD TAKE TIME FOR THEMSELVES: THIS is a must! The caretaker absolutely SHOULD take some time for themselves. This could be some time to read, go to a movie, relax watching TV–anything that they are not 100% in charge of anything. Caretakers should communicate their desires and BE flexible if something is to come up (as it often does with a chronic health condition). If it is something that they can not be flexible with, make sure the call in back up to help the patient. Caretakers 100% deserve time to themselves. My husband for example enjoys smoking a cigar and reading after the baby and I are asleep–this is HIS time to do whatever he likes–this gives him more time to recharge and to be even more present when I need him.
ASK for HELP: Often, asking for help is perceived as weak. But, what I have learned through this entire chronic process is that asking for help is actually STRONG. If the caretaker needs help, make sure they feel comfortable asking for help. This could be for extra hands to help with our son, or for mental help such as therapy or counseling.
If the caretaker is skeptical or nervous about making that call to a therapist there are now online therapy apps that can be used. For example, one of these apps is called Talk Space. This is a great way to be able to have that third party to talk with without ever having to leave the comfort of your home.
Gratitude/Meditate: Meditation and journaling on things I am grateful for has been a serious GAME CHANGER for me as the chronic pain sufferer. It is just as important for the caretaker to emulate these things if they feel as if they are burning out. It will look different for everyone–for some it could mean getting outside and walking/getting exercise, for others it could be downloading apps such as insight timer or calm; to help them meditate.
Finding the good things in your life can flip your entire perspective of your situation. Taking 5 minutes to write down 5 things you are grateful for, can completely change your attitude.
Acceptance and Education: One of the hardest things about taking care of someone with a chronic illness is accepting that this could be their AND YOUR forever. Acceptance takes time, so dont force it, work through the feeling either through journaling or talking with someone OTHER than the person suffering with the illness. The chronic illness suffer is going through their own levels of acceptance–which are different than yours–so its important to talk to someone else or journal about it. GET THOSE FEELINGS OUT. Again it is a process, so do not expect to be 100% on board over night.
The other piece to acceptance is education. Yes, you probably feel like you know EVERYTHING about the chronic condition; but I guarantee you that YOU DO NOT. Educate yourself on the condition, what it feels like (put yourself in their shoes), talk with others with the same illness, join a support group, READ, etc. The more you know, the more you will feel in control and the ability to help. Which at the end of the day is all most caregivers want to do is to HELP. But many aren’t sure HOW.
These are just a few tips on Caretaker Burnout prevention but there are MANY other articles out there…here are a few of my favorite:
Modern Migraine Mama 