The love of my life has been battling end stage renal disease (ESRD) for six years now. During this time, I’ve sat by his side in the ICU while he was on life support. I’ve seen him so weak that he can barely catch his breath. I’ve watched him wince in pain as large gauge needles are plunged into his arm for dialysis access. I’ve watched him almost collapse from plummeting blood pressure. I’ve watched him puke endless times. I’ve listened to his sighs as he dreads Mondays, Wednesdays, and Fridays. I’ve seen the anguish in his eyes as he wishes he could do the things that healthy people do: go to work, go to school, go on vacation, drink as much as he wants; the list goes on. I’ve jumped with him at every ring of the phone, wondering if this is the moment a kidney donor has become available.
As his partner and support person, it’s been heartbreaking at times. I wish I could take away all of his pain. Most of the time there is nothing I can do. I feel helpless. I feel scared. I feel anxious. I feel selfish. I feel sad. But, I try not to show it or talk about it, and it bottles up inside.
As a caregiver to someone who is ill, time can often stand still. You feel like everyone around you is moving forward with life. While I know our situation is not nearly as bad as it could be, it’s still really tough at times, and I feel like I don’t know how to deal with the emotions that I’m feeling. There are times when I need support, too.
The one thing that you should never say to a caregiver? Nothing at all. I can count only a handful of times when someone has asked me how I’m doing. Most of the time, they ask how he is doing, which is perfectly normal. I would (and should) absolutely expect that. But, hardly anyone has asked me how I’m holding up.
Saying this sounds a bit selfish, and I feel guilty putting it out there. Hell, I’m not the one who is sick. I can work. I can come and go as I please. I can eat and drink whatever I want. I don’t have to sit in a chair for four hours three times a week hooked up to a machine that is pulling and cleaning my blood. I have it easy.
But, sometimes I feel like I don’t have it easy. Many times, it’s simply because I feel alone. I never know what the next day will bring, and it scares me. It scares me a lot. There have been days I’ve felt so anxious that all I can do is cry into my pillow. Many people don’t know what it’s like to be in my situation, and I don’t expect them to. I think that scares a lot of people. They don’t know what to say or how to react. So, often times they say nothing. With the exception of a few close family members and friends, many people have kept their distance.
While you may not know what to say or how to say it, don’t walk away. That hurts more than anything you could say. If you don’t know what to say in person, send a card. Write an email. Send a Facebook message. Send a quick text message saying hi. Even the smallest gesture showing that you care will bring a smile to the person’s face. Trust me. As long as I know you care, I won’t feel so alone. That goes a long way in keeping me healthy so that I can be the best caregiver I can be.