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I survived Mom’sStem Cell Transplant
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.
Right.
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.
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April 9th, 2012 at 2:20 pm
You’re an inspiration. I really admire you, and appreciate that you have shared your experience with us readers. There’s not enough preparation in the world for things like this, but reading about it here will help us all. Regards to your Mom for further recovery.
Thank you.
April 9th, 2012 at 3:57 pm
Being a nurse myself, I know how exhausting it is at the end of the day – but your days didn’t end!! So glad to hear your mother is on the mend – now take care of yourself!
April 10th, 2012 at 1:15 am
I’m glad to hear your mom is getting better. You should be very proud of yourself for all you have done for her. Your mom is very lucky. No one should have to go through that alone.
I worked in bone marrow transplant for years (of kids) and there have been plenty of times I have been more worried about the caregivers than the patients.
I hope you are treating yourself to that glass of wine (and maybe a walk outside and a good night’s sleep). You deserve it.
April 10th, 2012 at 8:02 am
I second Lesley, take care of yourself now. It can be terribly frightening to see a loved one sick, and wearying. Kuddos for getting through a tough few weeks, and be sure to give yourself some time to rest (and process) everything that happened.
April 10th, 2012 at 9:12 am
So glad to hear your mom is doing well! I was concerned because you hadn’t blogged for awhile. I know what you mean about teeny tiny goals. It’s very frustrating, but now as I look back, I can see how far I’ve come and that helps lessen the frustration. I know exactly how grateful your mom was to have you around because my daughter spent a week with me when my husband had to go back to work. She was wonderful too, just like you were for your mom.
April 10th, 2012 at 11:04 am
I’m so glad your mom is doing well, and I’m so glad she had you there with her. You are amazing – I’m so glad you survived. I know this blog post will help someone else who is going through this!
April 10th, 2012 at 2:29 pm
Glad to hear things are moving in the right direction for you both, go gently and be kind to yourself x
April 10th, 2012 at 4:48 pm
Lesley, I’m so glad to hear that your mom is getting better. I can definitely empahize with you. My mother decided to have elective surgery without making arrangements for herself. Color me surpised when asked me to pick her up from the hospital. She had this idea that she would be up and about, and that was so not the case. I spent about a week assisting her and by the end of it and I was burnt out. I couldn’t even begining to imagine seven weeks with all the other added stressors. So whatever you do, please take care of yourself as well as you took care of your mother. You definitely deserve it.