January 28, 2017
We who are strong ought to put up with the failings of the weak, and not to please ourselves. Each of us must please our neighbor for the good purpose of building up the neighbor. For Christ did not please himself; but, as it is written, “The insults of those who insult you have fallen on me.” For whatever was written in former days was written for our instruction, so that by steadfastness and by the encouragement of the scriptures we might have hope.
May the God of steadfastness and encouragement grant you to live in harmony with one another, in accordance with Christ Jesus, so that together you may with one voice glorify the God and Father of our Lord Jesus Christ.
In 2006 while I was in Richmond Virginia working on my Doctorate of Ministry my cell phone rang very early in the morning, around 6:00 AM. I could see by looking at the caller ID that is was my husband Tim. I was surprised, because this meant that in Reedsport, Oregon, he was up in the middle of the night. Tim’s mom had come to Reedsport to take care of him while I was in Virginia. To be fair, Tim needed no such care taking, but who is going to turn away their mother who wants to come and cook for them and do their laundry?
Tim was awakened from sleep by some strange noises. When he got up to investigate, he realized that the noises were coming from the spare room where his mother was staying. He stepped into the room and could immediately see that she had fallen out of bed. When attempting to help her up, he realized that something had happened, something was very wrong, so he called the paramedics. They came to our home in the middle of the night and extracted Helen from the upper floor of our house, down a narrow staircase. Helen had a stroke.
When I returned from Virginia, I joined the doctor in looking at Helen’s MRI and could see that a significant bleed had impaired more than half her brain. It was very bad. After weeks of stay at our little hospital in Oregon, we begged and bullied Kaiser Permanente to take her into their top-notch recovery facility in California near her home. Then we travelled to California and joined her, because they train the family members as well.
Her days were filled with extensive therapies that she could barely muster the energy in which to participate. She was constantly exhausted and discouraged. Tim and I worked hard to pay attention to everything that we were supposed to learn, while at the same time attempting to be her two-person cheerleading squad. We learned to transfer her from the wheel chair to a bed, to a commode and a chair. We learned to transfer her to a car. Let me tell you, those extra wide handicapped spots are a must! We helped with personal care. One evening they offered a support group for families. I remember arriving exhausted after Helen’s big day (though I know this was nothing compared to her own exhaustion) and the therapist wanted us to check in and tell how each other how we were feeling. I quickly said “pass” because I knew if I opened my mouth, I would start sobbing and it would be big and ugly.
Helen sort of flunked rehab by not continuing to make progress. It’s a funny system. When you have had a stroke, your body is most exhausted as there is a mammoth amount of rebuilding going on. I wonder if just sleeping a whole bunch would be a better course of action, but instead you have to get right to work and make progress. After she flunked out, she was transferred to a nursing home. We would bring her home on a weekend day and we would devote that whole day to caring for her. I remember after the first few times of changing her adult briefs, I would just go sit outside on the curb and cry. Really, in time, I became quite good at her diaper (that is what she called them) changes.
In this time, we also moved to her home town, started new jobs, cleaned out her house, settled her in a different nursing home and sorted out her financial affairs. It was immensely overwhelming, and we only had Helen home a day a week. We did however go to her nursing home every day. We would work, go to the nursing home, go home and make dinner, Tim would grade papers and I would go to a church meeting.
When a family is hit by this kind of Tsunami it is life changing. Certainly, this is true for the person who suffers from the event. They go from being independent, healthy, living a life filled with things they choose to do, to being sick, dependent and a life filled with choices made by others. It is hard for us who are healthy and well and able, to imagine what it must be like to instantly or progressively have these things taken from us. The lives of family members and spouses are impacted secondarily. They too must make different choices about their own time to honor and care for their loved one.
I know that many of you here are caregivers. You have cared for your spouse, parents or children though cancer treatment, though multiple sclerosis, through strokes, through chronic kidney disease, through seizures, mental illness, hospitalizations and even through the dying process. You wanted to provide care, you did provide care, and like me, probably found it to be a rich but challenging experience. Like me, you probably had more than one time when you were crying on the proverbial curb.
I had a chance to sit down with Rick and Brenda Lehman and ask them about giving and receiving care. Rick and Brenda married in 1986 and in 1990 Rick was diagnosed with Multiple Sclerosis. At first there were no medications for this disease and then eventually Rick had to be brave and participate in some drug trials. As his physical body declined, he had to adapt and then adapt again. He was an OR nurse for many years, and when it became necessary to sit at work, his job changed to building a computer system for the OR. (Thank goodness he prepared his skills for this change!) He went from cane, to walker, to wheelchair, to electric wheelchair. Their home is filled with adaptive equipment. When I asked him how he copes with this continuous decline, he said that when he was first diagnosed he decided that it would all be just one big adventure, and that it was going to be amazing. He realized that he had already led a rich and full life with a very able body. He had done many exciting things. When he needs to, he just closes his eyes and replays his adventures in his mind. He celebrates having a rich and blessed life.
Brenda has a few tips for the care givers in the family. She started with this one: Be open to change. That just seems obvious, right? Don’t dig in. Adjust and adapt. If your loved one has a medical condition wherein they experience constant physical decline, you have to be prepared for change and adaptation.
Brenda also participated in a support group for caregivers. This was a great place to process feelings, share grief and exchange ideas. Support groups meet in person and they meet on line.
Take care of yourself, she advised. You have to take time for yourself and plan things for yourself. She goes to yoga twice a week and walks with friends. She was able to hire a caregiver to come in and help a couple mornings a week. She also suggested that you take respite weeks for yourself, if finances allow. Tim and I would take a vacation week and his sister would fly out from Virginia to take that week with their mom. The week off from one another is helpful for the care giver and the one receiving care. And keep nurturing your supportive friendships.
Our passage from Romans insists that we who are strong are to help those that are weak. We are to please our neighbor, not ourselves. To be fair, this instruction in the book of Romans falls after a whole bunch of instructions (in chapter 14) about not judging those who appear to be eating what is unclean. There is a lot to say about the concept of clean and unclean in scripture and about doing things that cause others to stumble in their faith. I think the upshot of all of these instructions is to not judge others. When we judge others then we separate ourselves from them.
You are probably wondering how I could bring up the concept of judging when talking about caring for the caregiver. We give into judgement just by thinking that we might know better about how they should care for their person who needs care, or how they should care for themselves. We might even be judging the care receiver by thinking things like: “that person probably wouldn’t have had a stroke if they had taken better care of themselves…or not smoked…or not eaten fatty foods.” Or “you should not be living alone in your home at your age.” We might recognize our own judgement by things that might flash through our minds when trying to distance ourselves from the suffering of another. For our caregiving friends we might think: “You should get help…you should take a break…you shouldn’t lift that person…you should go to a support group.” All of these are a form of judgement. They function to separate ourselves from the person who is suffering. Chapter 14 of Romans reminds us that the realm of God is righteousness and peace and joy. That is what we get when we leave judgement behind. That is what we get when we who are strong help those who are not.
So, to care for our caregivers, visit, take time just to listen, ask them what they would find the most helpful. For caregivers, get in touch with what you need and have your list ready so that when you are asked, you can say what it is that you need. It is our calling as believers to care for one another, to use our hands and our feet to lift one another up, to use our strength and our prayers and our encouragement in service of others. It is a joy and a privilege to do this. In caring for the caregiver, or caring for the one in need, we join in the great adventure and we experience richer and more full lives.