When the Caregiver Has Blood Cancer

When I retired from teaching in 2017, I wasn't feeling well and was in the process of having several medical tests run. In the last month of school, I told my third graders that it would be my last year to teach when I gave away some stuffed animals I kept in our classroom. I explained that my 88-year-old mother was having some heart problems, so it was best that I looked after her. After all, that's what families do. My statement was true, but I omitted the part where I felt bad.

Retiring to care for my mother

People often ask me if I miss teaching. The answer is no, not as much as I thought I would. I started teaching special education classes when I was 22, right after I graduated from college. On that final day, I cleared out of my classroom and looked around the room with tears. Teaching was something I had done all my adult life. What would I do now?

One week after I checked out of school for the final time, I learned the results of my bone marrow biopsy. I had been sure we were going to rule out cancer. Unfortunately, it was myelodysplastic syndromes (MDS).

Now we both needed a caregiver

As it turned out, my new job was to cope with MDS and look after my mother. Sometimes, she has to look after me. A couple of years ago, I was very sick after a treatment. When I finally woke up, my mother said, "I called Steve to go to the grocery store for us. Want some ice cream?" Luckily, we have some good neighbors and friends from church who will help us.

I'm the chauffeur

My mother, now 95 years old, never refers to me as her caregiver. When they ask her at her doctor's office if she can bathe and dress herself, she says, "Yes, of course I can! I go somewhere almost every day." I take her to appointments, and we often stop at the library to drop off books we have read. She refers to me as her chauffeur.

People have told me, "Oh, I could never live with my mother!" You figure it out. And my mother has told me, "I don't want to go to a nursing home." Most people understand that. Years ago, I told my mother that she wouldn't have to go to a nursing home unless something tragic happened to me. Well, something bad happened when I was diagnosed with MDS, but it's not a tragedy because I'm still living.

What to do when the caregiver is sick, too

So, what do you do when the caregiver feels bad, too? Something that has helped us was to remove a lot of decor from our home. Fewer knickknacks in the house means less dusting. We kept items that were useful or that we loved. And for goodness sake, we do not have items on the floor that either of us could trip over!

Be realistic and delegate

I had trouble keeping up with weeding flower beds, so I paid a landscaper to turn them into rock beds. Be realistic, I tell myself. Yes, flowers are lovely, but they require a lot of attention. I pay my neighbor to mow my yard, so I have little yardwork.

Because I don't look sick, people still expect a lot from me. An acquaintance asked if she could bring her seven-year-old grandson to my house weekly so I could tutor him. She was surprised at how quickly I said no. I explained that with MDS, I needed to avoid getting sick, and being near children was not a good idea.

Planning ahead

My mother and I have many medical appointments. We keep up with them the old-fashioned way by writing them on a paper calendar. Even at 95, my mother wants to look her best, whether going to a luncheon or doctor's appointment. I ask her the day before if her clothes are clean or if she needs me to iron anything. I set an alarm for the morning, allowing plenty of time for breakfast and getting ready the following day. We don't believe in hurrying.

"I forget you have cancer," a friend recently said. "You still volunteer and look the same," she explained. I know she meant it as a compliment. I have learned if I plan well, I can manage well.

Theodore Roosevelt said, "Do what you can, with what you have, where you are." That's what I'm trying to do!