By Marianne Delorey, Ph.D.
“You care so much you feel as though you will bleed to death with the pain of it.”
― J.K. Rowling, Harry Potter and the Order of the Phoenix
I have recently become a caregiver for a family member with serious, chronic conditions. In a short amount of time, I have gained a newfound respect for those who provide care. Here is what I have learned about managing that care.
- The commute stinks – Doctors, especially specialists, tend to have offices near or in major medical centers. This may mean you are heading to Worcester, Cambridge, or Boston instead of getting care in your hometown. For many Massachusetts residents, this may mean a two-hour commute in addition to the time at the doctor’s office.
- Your paid time off disappears – If you are lucky enough to have paid time off, most of your sick and vacation days go to medical appointments. Please be smart enough not to get sick yourself. And forget about taking a vacation or even just a day off. Good thing you won’t need time to recuperate from all the stress.
- You are pulled in too many directions – Work suffers because you are taking care of your loved one. Your loved one suffers because you must take a work phone call while you are caring for them. You are constantly juggling, and it seems you cannot catch up.
- You can’t keep your schedule straight – Was today the appointment or did that one get cancelled? What about that appointment card that went through the laundry, was that important? Was your family member going to be able to make that appointment on their own? Do they need someone to drive them? Can they really handle that without help?
- There is always another appointment – Even if the pain is in one part of your loved one’s body, the chances are good that their condition needs regular appointments with other specialists, too. Pain in your knee? Great, go see an ophthalmologist. No, seriously, there are conditions that could affect your knees and your eyes, best make sure your loved one’s condition is not having an adverse effect on other systems.
- Fast food becomes your friend – With so many appointments so far away from home, you end up relying on quick meals instead of home-cooked nutrition. Fast food is especially appealing on days when, because of medical tests or procedures, you can’t eat for hours.
- You need to document everything – We have two people keeping notes at each appointment and still we wonder when we are supposed to call or check in. Did she say 6 weeks or if the pain is still there in 6 weeks?
- Make friends at the lab – Bloodwork and scans, bloodwork and scans, rinse, and repeat. I get it; they need to see how quickly things are changing, but it is exhausting to keep going to the lab and have more and more tests done.
- Remember your loved one is uncomfortable – When they snap at you, and they will, remember that they are in pain. They are also tired of needing so much. They don’t want to be an inconvenience. They are sick of being sick.
- Everything is connected – Not only is your knee bone connected to your leg bone, but your health is connected to your nutrition, your organization, your time off. Your loved one depends on you so take care of yourself too.
Being a caregiver is hard. I thought I knew how hard it was, but I had a lot to learn. I wish I knew a magic way to make it better. All I can promise is that you are not alone.