Three weeks ago, I had one of the most challenging weeks of my life, and that includes my medical residency. Working 80 hours a week was easy compared to suddenly becoming the around-the-clock caregiver for my mom, who has multiple system atrophy (MSA), a rare, degenerative neurologic disease. I abruptly became exhausted, constantly angry, and was crying every three days or so. Not my usual level of function.
On Tuesday, November 3, Pop had a long-awaited knee replacement. We all hoped this would give him much-needed pain relief, and more energy and function. Prior to this, I had been spending about twelve hours a day, five days a week with Mom, so I thought I knew what to expect in taking over his role of being mom's primary caregiver.
the week:
Unfortunately, the week held several unpleasant surprises. First, the same day of Pop's surgery, Mom and I both woke up sick with heavy chest congestion, persistent cough and runny nose. This was scary because people with MSA have increased risk of pneumonia, which can land them in the hospital, or worse. I was exhausted by the end of the first day. Thursday morning, one of our stallions jumped over his fence and was out, loose. He subsequently jumped back into his pasture, but Jarred and I spent an unexpected hour fixing his fence. Thursday was also Jarred's birthday, but I was tired from caring for Mom and staying up late preparing the night before. Friday, one of our mares got so sick, my mom's friend (who was helping us with the horses) was worried she would need to be put down. Pop also returned home from the hospital that day, walking, but needing significant assistance for the first few days. Saturday, Jarred went to buy a new car. As soon as he left, we had several frightening episodes with Mom and Pop, each requiring urgent attention, each resolving without incident, but stressful nonetheless.
Monday morning, the first of Pop's home services came to visit: the admitting physical therapist. She asked if visiting nurse was scheduled to come out, and I told her no. The surgeon had figured Pop had two physicians to care for him (Jarred and I are both doctors), so he didn't need nurses. I asked the therapist how long until Pop would be able to return to his level of caregiving for Mom. "I'd say another six to eight weeks after he is discharged from home care." She must have seen the desperation on my face. She suggested maybe visiting nurse would be helpful after all, in addition to some other support, and I quickly agreed. I went back inside and told Jarred I didn't know how to handle this. Two months was too long for me to comprehend. One week had knocked us both for a loop. I felt defeated and lost.
“I went back inside and told Jarred I didn’t know how to handle this. ”
the turning point:
The following morning, I was lying in bed thinking. I was overwhelmed and scared. My body hurt from the exertion of helping Mom transfer in and out of her wheelchair. She is thin, but she is six feet tall, while I'm only 5'6". The mechanics are tricky and my body was feeling it. Then, in the midst of my pity-party, I remembered something that made me smile in spite of myself.
Every day at 5:30 AM, Mom takes her first set of pills. Then we try to go back to sleep, and at 8 she takes more pills before getting up. Monday morning, I turned the light on at 5:30 and asked Mom if she wanted the first of her pills while I prepared the others. "Not really," then she said something about "three." She usually takes three pills of one medication, and has slurred speech as part of her illness, so I didn't quite understand her. I grumbled, "I know, I know you take three." I was frustrated, but went to prepare the rest of her meds. I returned and asked if she was ready now for her pills. "No." She was firm. "It's three." "What? It's not three. It's almost six." She didn't budge. Finally, I looked at her clock. Sure enough, it said three A.M. I checked my phone and confirmed the time. My brain was baffled, and I couldn't help but to burst out laughing. She started laughing too. This felt like the first time in ages that we had really laughed together, and it was good.
So I lay there Tuesday morning remembering this, and found myself smiling. And I remembered a technique that helped me through difficult times before. It's one of the most fundamental practices around, which demonstrates how easily we can forget basic coping skills in desperate times. It's called gratefulness. There are many ways to practice this, but for me, it's therapeutic just thinking through the things I have to be grateful for after a difficult day. I made a list in my head.
“It’s one of the most fundamental practices around, which demonstrates how easily we can forget basic coping skills in desperate times. It’s called gratefulness. ”
the list:
That 3 am moment. Mom and I laughed together for the first time all week. That was precious.
My husband, Jarred. I've said it before: he's an amazing guy, and without him and his support, I couldn't take time off to help my parents and myself. He has supported me emotionally and financially, and has pitched in above and beyond what many spouses would do to help their in-laws.
Our dog. Zena. She's a nine-year-old Rottweiler, but has the personality of an overgrown Golden Retriever puppy. Loyally my mom's sidekick, she is always available for kisses, snuggles and laughs. She makes us smile on a daily basis, and is the manifestation of unconditional love.
The cats. Mom and Pop live on a farm. Cats just sort of happen. And they are a good source of entertainment. Currently, we have ten barn cats, including three adolescents, who we named Larry, Moe and Curly for their tendency to move as a group, and well, see for yourself:
My mom's friend. The horses are a lot of work, but they are Mom's passion. Jarred and I would not be able to care for them by ourselves. She made it possible. She also understands Mom's passion in a way that few others do, and she has an exceptional sense of humor.
Other people in Mom and Pop's support network: our neighbors, and a different friend who comes by once a week to help out, friends of Pop's who help him with various projects around the farm.
We have enough money to care for ourselves and our family.
We have enough food, and good food.
We have a warm home, a wonderful wood stove, and plenty of wood.
My parents. Though this was a difficult stretch, I was and am grateful to have them all. They know me better than anyone, other than Jarred, and they make me who I am. And they are all in my life.
My particular pain of being a full-time caregiver for two parents, was temporary. Pop would heal. And Mom improved too. Her cold had made the week more difficult, but as it resolved, she regained strength and energy.
At the time, thinking through this list gave me just a little relief. It did not fix the problem, and didn't change the situation. But it helped me recognize some goodness in the midst of the bad. Even writing it down now helps, and I could add more good things from that week: Jarred's birthday and his wonderful family, my friends, being able to afford a badly needed new car, the fact that the stallion jumped back in the pasture, that Mom's cold resolved without incident, that the mare is now healthy and fine, and that there were several days in that week that were neutral or even net positive.
Gratefulness may be connected to religious prayer, but not necessarily. I was introduced to the concept through this beautiful website (shared with me by Carole, Jarred's wonderful mother, and another good thing in our lives): www.gratefulness.org. She also introduced me to this five-minute video, A Good Day, created by that site. It is like a prayer and a meditation on gratitude. I listen to it every so often as a reminder of all I have to be thankful for.
the update:
The last two weeks have still been challenging, but slowly, things are improving. We are not back where we were before Pop's surgery, but I actually think that by the time he is fully recovered, as a family, we will all be in a stronger, healthier, better place than when we started.