For the past week, I’ve been back in sweet home
Chicago Toronto getting settled back into my own life. I had all these good intentions for my time with Mom. I’d blog daily. I’d go to yoga. I’d focus on health – hers and mine – and use my work hours to dig into some big strategic projects.
You’re laughing right now, aren’t you?
Yeah, in retrospect, I was definitely far off the mark. I’d totally underestimated what it’d be like to be a full time caretaker, responsible for food, snacks, water, medication, exercise, line care, emotional support, cleaning, washing clothes, taking care of the house, the tenant, and the animals. And then, working full time, albeit in some mighty strange hours.
I did everything right to prepare. I read every book, website, pamphlet. I knew the risks, the side-effects, the responsibilities and the recovery time. And yes, everything with the procedure and Mom’s recovery has gone absolutely predictably. And yes, it was all much worse, much harder, than I’d prepared for.
If you ever have to support someone going through a stem cell transplant – and I hope to God that you do not – know these three things. Warning, it ain’t pretty.
- All vomit is not the same. There’s chemo side-effect vomit. There’s dark green vomit from the drugs. There’s the gag-reflex vomit when your stomach is trying to process simple foods again. There’s the acid-reflux vomit and the out-of-nowhere vomit. And they’re all terrible and violent, and you become very used to analyzing whether any actual food stayed in, and what the vomit might mean.
- Drinking is the number one goal. And I’m not talking about a glass of wine for the caretaker after hours. The single biggest problem for newly discharged patients is dehydration. Dehydration causes weakness, blood pressure problems, dizziness and… vomiting. You might think it would be easy to drink 8 glasses of fluid a day. It couldn’t be harder. Every sip for the patient is a struggle, especially since taste buds are all screwed up and everything – even water – has a metallic taste.
Now, imagine that for a minute. You know you need to hydrate – at all costs – but every sip makes you want to throw up. And then when you do, imagine how discouraged you are to have fought to get all that down, just to have to start all over again.
We found that Vitamin Water was the key. When water, juice, milk, gatorade, and pedialyte all failed, Vitamin Water had just enough taste – without carbonation – and those helpful electrolytes. It got us over that initial hump after a very frustrating week.
- The patient doesn’t remember…anything. Call it chemo-brain, or call it self-preservation. I discovered that there are huge periods of time from the hospital where Mom has no memory. And then when we came home, she’d ask the same questions over and over again, sometimes only minutes apart.
On the other hand, as the caretaker, you’re the one to answer those questions without losing patience. You’re the one to remember the sometimes terrible things you heard come out of the patient’s mouth.
The brain does come back. Mom was already much clearer, much more focused, a week or two after being released from the hospital.
I’ve never been as tired as I was for those seven weeks. I’ve never been as frustrated, as supportive, as encouraging, as disappointed, as proud. The recovery process is an incredible fight. Good days and bad days are defined by millimeters of difference. Goals are teeny tiny, but no less satisfying.
But as hard as it was, I couldn’t be more happy to have been able to be there for mom during this. I honestly don’t know how she would have gotten through without family there.
It was hard enough with just one of me.