When I was a teenager, my exhausted parents who had jumped headfirst into caregiving- having learned to administer shots and mix meds- left me in charge of making sure my older brother got to bed safely. His body was ravaged with cancer and they generally stayed up with him to ensure he had all that he needed before they went off to bed. On this particular night, I had volunteered for the job. They asked several times, “Now you’ll make sure that he has everything that he needs before you go to bed, right?” “Yes, Yes.” I had said, wanting them to have a much need break. But as the night wore on and my brother, Matt, watched show after show I begin to grow tired and think about my impending shift at the clothing shop I managed the next day. Eventually, I asked if he had all he needed and went off to bed. I awoke later to the sound of him calling from the hallway. As long as I live I will never be able to erase the image from my mind that I opened my bedroom door to find: Matt on hands on knees, attempting to crawl his way from the living room to his bedroom and calling for help, unable to make it on his own. I died a thousand deaths in that moment. He had suffered this indignity on my watch. My parents’ door opened seconds after mine. Unlike me, frozen in shame in my doorway, they leapt into action. I tried to explain to them that I wasn’t a nurse, wasn’t trained to do this. I had believed him when he said he could get to his room on his own. Maybe he had believed himself. So what made them such superior caregivers? They had taken the time to learn. I’ve lived on both sides of caregiving. Having given care, and having been the receiver of much care over these last several years. There is no formula, but there are some things I have learned from trial and error that I seek to share with you today
1) Let caretaking become a part of your relationship without consuming it: This is vital to the dignity and identity of the individual that you are caring for. Whether it’s your spouse, your son, your Mother or your Uncle they need to know that you still see them in there beneath all the symptoms and pain. It’s also vital to the health of your relationship, especially in a marriage. Let this be a component of marriage, without taking over the marriage. If caretaking flows naturally out of a loving relationship, you’re much less likely to become bitter over time.
2) Take time to process and be you: This is vital to your health and identity. Let caretaking be a part of your identity without consuming it. This may feel selfish at times but we both know that you will be a much happier, saner, better you and caretaker because of it. It’s the only way to avoid burnout and resentment. It’s also the only way to bring a true sense of identity to the relationship.
3) Train up other caregivers: This is going to feel like a pain in the butt that you don’t have time for at first. Struggling just to keep your head above water, you’re wondering what in the world I’m talking about. But caregiving is very specific and when you are pulling your hair out, desperate for a break is not the time to start looking for a backup. I have a friend who spent years as the head nurse in an ER. She’s always reminding me, you can’t make a plan in the middle of a crisis. So plan ahead of time. Start having a family friend or neighbor come over and watch you mix the meds, see how your Mom likes the pillows and find out what shows she likes to watch in the afternoons. That way, when you need a break, everyone feels safe and comfortable with the help that’s already been put in place.
4) Give it time : Learning and adjusting to one another in this way takes time. I was out of state for care for eight weeks last year. During that time I had a picc line placed and was unable to bathe myself or cook for myself. Caregivers rotated out. Each time, each person, each relationship was different. Each caregiver had their own strengths and ways of showing love and each relationship had it’s own adjustment period to this new dynamic. Even with my closest friends, hair washing was taking it to a new level. Give it time.
5) Laugh : As freely and as deeply as possible. Laugh together. It doesn’t matter if it’s disproportionate. The tension and sadness of caregiving can quickly weigh a relationship down. Laughing melts all that away like wax. My husband and I often laugh about things that others probably wouldn’t find that funny. And I’m so glad, because it does my heart good like no medicine can.
Caregivers– thank you for the gift of your care. You’re not doing it all wrong. Don’t be so hard on yourself. I know we’re cranky sometimes but you’re pretty awesome.