The days go by slow, but the years go by fast…my “frousin” Margo says and it is so true. Every day feels long, but somehow the weeks slip by so quickly. I wake up, and it’s Monday, and I blink and somehow it’s Friday. Day after day, I wake up, and I get out of bed, and shower and get dressed and go on with my life, because that is what I have to do. My mother and sister didn’t fight so hard to live, so that I just lay down and die. That’s what I tell myself every single day. People say, oh you can move on with your life now – but it was never a burden before. I went from caregiver to estate gatekeeper. I went from a daughter and sister to being an orphan. People expect life to go on, and I think that is really their hope. What you are as a mourner is a window to future grief for others. And it’s scary – I know. It is part of life. I know. Sometimes, in the most profound way, moving on with your life is much harder than the high alert situation of being a caregiver.
If you ever have been a caregiver, you know what I mean by this statement. You look at your loved one’s colour. You ask, expectantly, and with a tiny bit of dread and fear, how they are feeling. You take temperatures, listen to breathing, hope that they’ll eat. You listen for coughing. You tiptoe into a room at night to make sure that they are breathing and sleeping peacefully. Sleeping becomes fitful (yours of course). You live in fear daily of what that day may bring or breathe a sigh of relief if the day was a good one.
You learn things that stay with you. Many don’t know this, but here is a sample of what I can do:
-I can give injections, both subcutaneous (yes, under the skin) or through a port
-I can hook up a portable oxygen tank
-I can inject morphine into someone’s mouth through a syringe without wasting a drop
-I can take a pulse
-I can tell you, in detail, what the difference is between HER2+ and HER2- breast cancer
-I can deal with vomit – lots and lots of vomit, get a bag to the person before they throw up and deal with cleanup after
-I can dress weeping wounds gently and carefully, keeping them clean and look out for infection
-I can turn an IV on and off
-I can lift a patient from their bed without hurting them
-I can move them in their bed by myself if I have to, but it is so much easier with help. It is a struggle though
-I can pay attention to details and advocate for a patient with a doctor or nurse if I have to
-I can tell you what a number of different chemo/immunotherapy drugs are, and what side effects my sister and mother had from them
-I can make a person’s final wishes happen and speak to doctors and nurses about what was in their living will
-The hardest thing that I can and have done is tell someone that it’s ok to go – that I’ll be ok and they will too. I’ve had to do this twice, and each time, it cost me so much more than I can explain
I’m not telling you this so that you’ll admire me or pity me. I’m telling you this so that if you are a caregiver too, that you know that there are people that understand. You will never be the person that you were before, and that’s ok. Take your time. You will still have plenty to deal with after – mentally and physically. Think about what you have had to learn to do. It’s a lot isn’t it? It’s even harder during a pandemic with less help available. But you will find a way. All I know is that taking care of the two women in the photo was the greatest thing that I will ever do in my life.