Have you ever watched a youngster learn to ride a bike on their own after using training wheels? Perhaps you have been the teacher in such a situation. Perhaps you recall what it was like to learn – at first you pedal, confident because your guide is helping you from behind, steadying you and giving you momentum. You gain confidence until your teacher lets you “take over” on your own. There may have been a moment of fear or misgiving as you recognized that you were under your own power. That passed, however, as you realized “I can do this!”
Caregiving is like that, I think. As I realized that I was taking over more and more of the tasks related to my husband’s illness, I often felt a twinge of fear. Would I make the best decisions about his care? How would I know when he needed to see the doctor or go to the ER? Could I efficiently manage the demands of a Heart Failure diet? Sort meds and administer them? And a thousand other questions!
Of course the first source I turned to was that big bushel of brochures and other materials given us by the cardiologist, physician assistant and nurse practitioner. It can be easy to throw these papers into a pile somewhere and say, “I will get to it later.” I hope you will see such things as a starting point. Personally, I found them helpful – although, at first they were kind of overwhelming! In my experience, information is power. The more you know, the mare you feel able to address challenges and situations that pop up. Learn all you can!
A second place to turn can be the social workers who are available to you through your doctor’s office, hospital or clinic. These trained professionals are highly aware of resources you might find useful – support groups, agencies providing home care, various specialty care opportunities (such as hospice). Ask. Ask. ASK! These folks are in place to assist you.
Another rich source of information and support is the online community, which you have found – or you would not be reading these words! It can be helpful to match up with others who deal with the same or similar challenges. One caveat: I would urge you to be careful accepting advice from non-professionals at face value. Your medical situation is unique, and while others may indeed be able to help you interpret the illness with which you deal, there may be some variables at play. Listen, learn – but be skeptical.
Remember to engage in self-care. A frequent analogy I have heard is that you cannot give another person water if your well runs dry. That is to say, you need to find ways to sustain yourself – socializing with friends, engaging in meditative or spiritual practices, engaging in physical activities, being sure to partake of good nutritious meals and yes, the occasional treat. All these practices keep you grounded and strengthened for your caregiving lifestyle.
A site that is very helpful to us caregivers is sponsored by the American Heart Association, and is at https://www.heart.org/en/health-topics/caregiver-support. This site is worth exploring as you gain your footing.
Even though “the training wheels are off,” you are never truly alone in this caregiving endeavor. Those of us in this community are running behind your bike as you learn to ride on your own, steadying and reassuring you. Ask questions on our message boards. We are here to help! You CAN do this!