I’ve played both the role of the caregiver and the patient. Each is quite a unique experience, but one can’t exist without the other. I try so hard to manage everything myself, and not accept any help. I’m not sure if it is a matter of control or pride. As a patient, there were times I felt so vulnerable and overwhelmed, I wished I was a kid again so someone else could solve my problems. As a caregiver, it was overwhelming to lose all sense of control as you watch your most precious love suffer with no possible way to take the pain away. I felt that because not only was I the caregiver, I was a mother.
Caregivers Don’t Have To Be Strictly Medical – In Fact, Please Don’t Be
It is one thing to physically experience the pain or illness, but to uncontrollably watch from the sidelines is just as traumatic. Caregivers often put their needs aside to help those they are caring for. They are the only ones that can advocate for you when you physically can’t.
Caregivers can come in all forms. They are not necessarily just medical proxies. They are a listening ear, a home cooked meal, an outlet, a cup of coffee, transportation, and so much more. I am fortunate enough to have many caregivers taking on different roles in my life.
However, that doesn’t mean as a patient, I don’t put my pride first. I like to think I am stronger than I am. I’ve been let down so many times before, it takes a lot for me to recognize and accept when something is seriously wrong. Fortunately, my caregiver mother, was able to recognize something different from the outside and brought me to the ER at times when I most desperately needed it and didn’t recognize it.
Information Overload
I really hate talking about my health, explaining what everything means, and how I am feeling. I really just don’t like talking about myself in general. So what did I do? Start a blog about it all! I am learning to become more proud of how strong my body is, and to not make my invisible illness so invisible anymore.
I keep everything in my head. Just some advice – NOT a good idea! As Renee’s caregiver, I had everything organized to a T. A whole binder filled with every piece of medical information more than anyone could ever need. I knew it would take a village, and didn’t want any steps to be missed. That is why a caregiver is so important. Having a chronic illness is simply impossible to live with on your own.
With that being said, having a chronic illness also means carrying a great deal of guilt and feeling burdensome. My poor husband. He has dealt with so much stress, fear, and worry. He watched my health and who I am as a person deteriorate right in front of his eyes with no way to stop what was happening. He listens to all of my frustrations, feels the wrath of my anxiety, pays all of MY medical bills, and still manages to work full time through it all to keep us afloat. I would do the same for him in a heartbeat, but it is SO HARD to be on the helpless side of it all.
Sitting, Waiting, Wishing
Caregivers see me suffer so helplessly. I know they wish they could take it all away, or at least half of it at that. I know, because I was in that same boat. I had finally found out all of my debilitating symptoms were the result of pulmonary hypertension. I knew what it was like to be so frustrated when my body couldn’t do what I need it to. I knew what it was like to feel breathless, and to feel like I would go crazy if I had to stay admitted in the hospital for one more hour.
Then I had to watch my daughter live her whole life in the hospital, struggling to breathe and survive as just a tiny baby. I watched her suffer from pulmonary hypertension, and wished more than anything I could take it all for her.
Caregivers deserve more recognition than they receive. It is so difficult seeing both sides of the scenario. I don’t want anyone to help me, but I so desperately would have done anything to help Renee. I wish there was more I could have done. I know I would make many people in my life happy if I let them in just a little bit more, and asked for more help in my journey.
It is very difficult standing and watching helplessly from the outside looking in.
Caregivers Don’t Have To Be Close
Caregivers don’t have to be close friends or family. I often feel like a burden on those close to me when I need to rely on them. I feel like a financial burden, a physical burden, and a mental burden. Sometimes I just need to complain about how much this sucks, and I never asked to be in the situation I am in. However, I don’t want to drag other people down with me.
I’ve learned there are SO MANY resources out there I didn’t even know existed. Renee was so medically complex, I had case managers and social workers calling me left and right to help keep everything in order. Little did I know, those same people were available to me.
I recently switched insurances at the beginning of the year, and quickly learned my plan DID NOT cover specialty prescriptions. I was so overwhelmed and stressed. These specialty prescriptions were saving my life! I knew I couldn’t afford them (because no one can), and I didn’t even know where to start.
One day I got a random phone call from a wonderful case manager, who was taking care of everything for me. She was provided by my insurance to help me find coverage for my medications. It was a saving grace. She literally did everything for me, and I just had to sign on the dotted line.
I also found a social worker through one of my specialty pharmacies, Accredo, that helped me find coverage and work through the overwhelming stressors that come with managing chronic illness.
Help Is On The Way!
Again, you don’t have to do this alone and shouldn’t. If you don’t want to ask people close to you for help, then please reach out to your doctor’s office, insurance company, pharmacy or even the chronic illness community.
There are so many outlets available for helping I couldn’t list them all, and they can vary by region.
Now if only I can follow my own advice!
How Can You Be A Caregiver?
There are many things you can do to help be a caregiver in someone’s life. If your friend is like me, they probably won’t take you up on the offer, but most certainly appreciate the thoughtfulness and concern. Others may be desperately waiting for someone, anyone to reach out a lending hand.
If you can’t be there physically – offer a listening ear, send an Uber eats gift card, see if they have an Amazon wish list, or even a handwritten letter or card letting them know you are thinking of them. You can offer to pick up medication from the pharmacy, bring them to a doctor’s appointment, but also not overstep boundaries. Help refill pill containers, because honestly that is my least favorite thing to do and probably the most important! Just pick up the phone or text and let your loved one know you want to help.
You can use your skills and talents to help do just about anything. Living with a chronic illness is SO INVOLVED there are so many outlets. You can help teach a craft during some downtime to take break from reality, make a meal, use your excel skills to make a supplies checklist. I really mean it when I say the possibilities are endless.
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