Throughout my entire 20s, my focus was on my upwardly mobile and successful business career. But when I suffered a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, and was subsequently diagnosed with CRPS/RSD (and additional chronic medical issues), I was stopped in my tracks! Everything I had worked so hard for was gone in an instant and suddenly I needed my mommy – in a big way! Yes, my soon-to-be husband lived with me at the time, but I wanted and needed my mom the most!
Even though my mom had a demanding full-time job at the time, she jumped right in and sacrificed everything to be there for me. Along with my husband, she went to doctor’s appointments, came over and helped me, and just simply held me and told me it was going to be ok even though none of us had any idea if it would be. We were all scared and confused – we knew it was bad but certainly didn’t realize the extent of the far-reaching medical journey that was ahead at that naive point in time when CRPS/RSD was even less known than it is now. Not only were most doctors unfamiliar with this monster of a disease, but there were no Facebook or support groups, nor was there much viable information on the fledgling Internet as to what it all meant. So we were truly on our own – my mom and my then-husband as my primary caregivers – and me.
A few years into my medical journey, I ended up getting divorced – and no, ironically not because of my medical issues but that’s another story! After my divorce, my mom was my primary caregiver. Although I still lived alone, I was unable to drive – for almost 10 years total! I had to use a wheelchair and walker a lot of the time and similar to many CRPS patients with uncontrolled pain/symptoms, I rarely left the house or even the bed for many years. I needed help – and a lot of it.
It was a confusing and scary time for both my mom and me. I was in so much severe intractable pain, with changing and devastating symptoms and new diagnoses, along with the significant loss and grief that surrounded my “new normal;” because of all this, it was hard to focus on the fact that my caregiver was also going through the same life-changing loss and grief I was – she just didn’t have the physical piece. But she was watching her once vibrant and independent daughter being reduced to a shell who didn’t necessarily want to even exist anymore given the amount of physical suffering I was in. Those years were obviously very hard on both of us and I know many patients and caregivers out there can certainly relate.
Knowing what I know now, given that my pain and symptoms are much better controlled and managed, what would I have done differently to “honor my caregiver?”
1) Communicate and acknowledge her pain
I was so wrapped up in my own suffering, crisis and needs, that I rarely took time out to check on my mom or ask how she was handling all of this. I was also naive to think that it wasn’t affecting her greatly because she wasn’t experiencing the physical components, which was completely false. She was/is married and was working full-time (now retired), yet gave all her extra time and energy to me. Inevitably this put a strain on her responsibilities and other relationships as well as ours. Needless to say, we developed some friction and resentment towards each other, which was merely hurt, fear and frustration with the situation, manifesting as anger.
So it is important to communicate with your caregiver(s) – to check in and ask how they are doing. They need to express their feelings and pain too as they are suffering right along with us. So many lives are impacted from the effects of a chronic illness. Often times, household dynamics and responsibilities shift, which necessitates spouse caregivers take on a whole new set of tasks that may be foreign to them. Children may need to step up household chores as well and may act out as a result. They can also be frightened of what they don’t understand, especially when it comes to a parent dealing with medical issues.
2) Talk about things other than my medical situation
When we are consumed with a medical crisis, it can be hard to think, let alone talk about anything else. Don’t forget that you and your caregiver(s) can find other things to discuss – and you should. Ask him/her about his/her day, talk about current events or just watch a movie. It can bring much-needed relief for both of you to take a break from discussing your medical situation, and keep in mind it can also distract your pain/symptoms as well as your caregiver’s worries to laugh and talk about something – anything else! One of the things I remember when I was at my worst is my mom telling me she loved to see me smile and laugh again! No one wants to constantly talk about negative and depressing things and sometimes it just helps to feel normal through a little laughter! They don’t say “laughter is the best medicine” for nothing!
3) Thank and appreciate her more often
I don’t know what I would have done without my mom – both then and now. She would help me with errands, laundry, cooking, driving me to the ER and countless other appointments (in and out of town), finding other caregiving assistance and basically anything else I needed without ever asking for anything in return. In a sense, I took this for granted and put a lot of pressure on her because she was my mother. I could have thanked her and told her how much I appreciated her way more than I did.
4) Encourage her to take better care of herself
Ever heard the term “misery loves company?” Well I think at some points along the way this quote fits perfectly. It’s as though the fear and stress of our medical issues causes us to grasp ahold of those closest to us and not let go. We are scared if they go anywhere or spend time with others, or have fun they will leave and never come back and we will be all alone. After all, why would someone CHOOSE to be around the negativity and misery of chronic illness and pain when they can live a normal life? As patients, this is the tape that plays over and over in our heads and makes us cling to those we love in times of need. We don’t want to be burdens to anyone, to the point of sometimes pushing people away; but we also don’t want our caregivers to abandon us either. It’s a dichotomy.
In reality, getting away and taking breaks is what caregivers need the most! In order to be healthy and effective, caregivers need to take care of themselves FIRST before they can take care of us. So encouraging our caregiver(s) to live as normal a life as possible is exactly what we as patients should do. This means encouraging them to go out with friends, go on vacations, spend time in the spa, etc. – even forcing them if need be! When someone is acting as a primary, basically full-time caregiver (because I’ve been told even if they aren’t physically there with the patient, most likely they are thinking and worrying about the patient), it is exhausting – not only physically but mentally/emotionally, spiritually and for some, even financially. Caregivers need to ensure they do not end up as patients themselves! As they feel refreshed and healthier, caregivers will become better equipped to deal with the physical and emotional roller coaster of the patient’s needs which in turn will have a positive impact on the patient.
Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online Support/Empowerment Groups for CRPS/RSD and Chronic Illnesses/Pain in the Metro Atlanta area. Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She is a fur mom to two cats, who graciously “allow” her to live in their new house in Atlanta. She can be reached at firstname.lastname@example.org.