As I started down the long road of my son’s health crisis, I couldn’t believe the number of times I tripped and fell into something that I had no idea I needed to watch out for. I was, as many would be, fully immersed in the experience; focusing on what my son needed to keep him safe and alive. I thought that the medical community was the expert, that I was somehow to blame for the situation; I felt that everything should come secondary, including my health and well being, in order to ensure that my son was supported. And that’s not all, I found myself
giving my power away over and over again, even when I knew that there was a better way to support my son; ways that worked with him and his specific needs.
Then one day I stopped. I remembered that I knew my son better than any of his treatment team members and I knew myself better than the victim game I was playing. I took a huge step back and realized that in order to support my son and myself through the crisis, things were going to need to change.
The change was a process; I didn’t realize it all at once. Slowly over time, I became more and more aware of cases where I was falling into old, unhealthy patterns while dealing with challenges that were landing on my path. To say I handled everything perfectly would be an overestimation; I mean, really, what is perfect anyway? But what I found was that being aware of these pitfalls and finding ways to manage through them or avoid them all together became my best course of action.
Here are some of the big pitfalls that I encountered and what I did to change course:
Giving away power: Whether you are the parent or primary caregiver for a person in crisis, remember that you know the patient better than any doctor or treatment team can. There are normal assumptions and processes followed by facilities and attending physicians but they are broad and not applicable to every patient. If a recommendation or course of action doesn’t feel “right” to you, speak up and discuss your concerns. Even if your initial concerns are not taken seriously, do not give up your power or concede to treatment or programs that you know don’t meet the need. In my situation, I really forced myself to speak up when something didn’t feel right to me. Most times, my input was welcome and other times it took a few firm discussions before my input was taken into account. Either way, I realized that I was a partner in my son’s treatment and that meant that my input was valid and necessary to his care.
Turning on yourself: Many caregivers find that there is enough blame and shame to go around, especially in a mental health situation. One surprising realization for me was finding that stigma existed within the medical facility setting. I always assumed that in that environment, the care providers somehow “got it” more than the average person. This worked to only reinforce the belief that I had done something very wrong to cause the situation with my son. And I turned on myself. Turning on yourself, punishing yourself through negative thoughts, blaming words, and withdrawing from life will not make your loved one any better, however over time it will degrade your health and you may find yourself in need of support as well. It took me quite a while to stop blaming myself and to start learning to love and accept the way things were playing out.
Ignoring Self Care: During times of crisis, it is critical to take care of yourself mentally, physically and emotionally. Believe me, I spent several months on the couch with the covers pulled up over my head, wanting nothing more than the situation to resolve and life to go back to normal. I stopped making time for sleep, for healthy meals, and for exercise. By chance I came across an article sharing grim statics regarding caregivers who do not take care of themselves. The bottom line was that in addition to truly not being able to be present for their loved ones, many would likely find themselves faced with a severe illness or disease 18 months post-crisis. Reading these statistics was a huge eye opener for me and shortly after I joined a 40-day yoga program and eventually added running into my weekly routine. I firmly believe these steps helped me be more engaged with my son’s treatment and has kept me relatively healthy through the months that have followed.
Staying Silent: Not sharing the fact that you are going through a health crisis does not help anyone. Isolation and shame only create more isolation and shame, which can lead to depression and physical health issues. Even if you are uncertain about sharing your story with friends or family members, there are people who can listen in a non-judgmental way. Lean on someone who you know can listen, call a helpline, find a support group or contact an advocate in your area or on-line. I initially thought that it was best to keep my son’s situation to myself, but once the reality of the illness became apparent, I found that the support I could get from family and friends was very helpful. I was also looking, desperately at times, to find others who were going through the same situation as me; hoping that I could talk to someone who truly understood what I was feeling. I didn’t find many who were willing to talk, but instead I found that there was much benefit in telling my story to others.
Going into denial: As someone who has experienced deep dark days of caregiving, I can say first hand that when you’re in the middle of it, you want nothing more than to have it resolved. A light at the end of the tunnel is all you hope for and then one day, everything feels back to “normal” and you breathe deep. However, denial can creep in slowly. You begin to start looking at things and rationalizing how they are not really red flags. Staying on this road can lead to a situation where the rug is pulled completely out from under you and you’re left rubbing your scraped elbows and trying to figure out what the heck happened. I learned early on in my son’s crisis to identify the signs of denial and begin immediately to call it by name. This didn’t necessarily change the situations I faced as we rode the roller coaster of mental health uncertainty, but it allowed me to be eyes wide open when the next upside down loop-de-loop came along.
Accepting “No” as the answer: Caregivers in most cases not only deal with the physical needs of their loved one but also the logistics of care such as insurance claims, discharge planning and managing levels of service required for patient care. The systems that “pay out” money for care are set up as profit centers. That means that their goal, just as any corporation, is to ultimately make money for their top executives and shareholders. Given this, I found that in most cases, “no” will be the first answer that is given when any additional coverage expense is required. Whether the request is for extending inpatient stay, treatment programs, medication changes and long term care accommodations, even if when it was recommended by the attending physicians, the answer we got most often was “no”. I wrote a blog post called “No is Not the Right Answer” that shares more of the story and how it took quite a fight to get the insurance company and managed care providers to agree to continue to support my son.
I’d love to hear from you – what other pitfalls have you encountered as a caregiver or even just navigating this journey called life? Please feel free to share personal stories and lessons learned in the comments below or if you’d rather share privately you can send an email to email@example.com.
oh Amy…I can so relate to this post and everything you highlighted is spot on for those of us who are or have been caregivers! We always forget about ourselves until we end up sick or running into an invisible brick wall not being able to do anything because we have reached the point of exhaustion. I gave every bit of myself away not even knowing that was what I was doing…never put myself first…always did everything that everyone asked…believed everything the medical professionals told me. Thankfully I came to my senses…divine intervention perhaps…before it was too and I was too far gone. We need to take care of ourselves first. Great article
Amy White says
Jen, Thank you for your feedback. It is so easy to get caught up on the Caregiver hamster wheel – so much needs to be done and many times it’s a very serious situation. Taking the time for self care and being aware of giving away power are two things I learned the hard way! Grateful to be able to share with others!
interesting, thanks for sharing
Amy White says
Thank you for stopping by and reading!
John Scardina says
Living this event right now in my life, you have nailed all of the important things that caregivers need to know. It is OK and a must to make sure your needs are met before helping others, no matter how difficult.
Carmen Parker says
Dear Amy: Today is “Bell let’s talk day” and I listened to your radio interview on London 980 show with Craig Thank you so much for sharing. I was the next speaker on the show just after you. Another Parent going through this hell with my son since 2010. He is currently in Hospital again as we speak This will be his third time in Hospital however this time has been the longest stay for him. My concerns are the problem with Safe, Clean, Motivating, Qualified Med Staff and family orientated Supportive Housing for Our Kids. I say kids because our journey started when my son was 17 years old. The places here in London Ont are very limited and the few places we have are in desperate need of funding. Iam talking about the good homes. We have had many many slum landlords taking advantage of our kids that have been thrown out of hospital and left living in horrendous living conditions and the landlords taking every cent they have. It breaks my Heart… when my son was admitted to hospital this past December we found 5 kids his own age that had crawled into his window and were living in his apt with no were to go. All had mental illness because we found empty blister packs with there names on them and what kind of meds they were taking. It was the saddest thing I have ever seen. There was my son so sick trying to help others he crashed. THIS IS CANADA what in the hell is going on were is the support? Today I just wanted to Thank You for talking on our radio station and for making me feel not so alone. If there is any thing you can do to help this need of supportive housing could you please find it in your Heart to Help. Mom-to Mom
Amy White says
Carmen, from my mother’s heart to yours I am sending a big big hug! I heard your call this morning and my heart breaks for you and your son! While I do not have direct information to assist with the need of supportive housing, I would be happy to share my experiences and some of my advocacy actions with you. I find that bringing attention to the broken processes and keeping these issues in front of those who are involved in direct care, can help change the system. Please feel free to contact me at firstname.lastname@example.org if you would like to chat further! You and your family are in my thoughts and prayers.