Caregiving advice: usually well-intentioned, seldom useful, but occasionally spot on.
When I was in the thick of a caregiving crisis – both of my parents were very sick and transitioning out of their home at the same time – I wished I could hand out cards to friends and family that said, “Hugs and support are welcome. Opinions are not.” But, I was too polite and so I heard a lot of advice.
Much of it made me want to scream, “This isn’t helpful!” That was the advice that countered an action I had already taken. Like when I finally chose a memory care unit for my father and moved him in, someone would say, “You should move him to (insert name of facility).” I just upended his life by moving him, paid a hefty deposit fee, and began the process of acclimating him to his new home. How could it possibly be helpful to tell me there was a better place than the one I chose?
Caregiving Tips That Really Helped
But a few people, usually other working daughters, gave me advice that really made a difference for me. Here it is. Use it or ignore it. Only you understand the situation you are in. Which leads me to the first piece of advice.
- Trust your instincts. When my parents got sick, our lives changed so quickly and I had to make big decisions in a very short period of time. The hospital gave me four days to find a place for me to move my father –permanently. Meanwhile, my mother had just been diagnosed with late stage cancer and could no longer live at home. I was worried I was making the right choices. I was stressed about how much money I was spending so quickly. I was second-guessing myself, losing sleep, and running in circles to make sure I examined every possible option until someone I trusted told me to trust myself. “You are smart and your heart is in the right place. That will serve you well.” I wasn’t sure she was right at the time, but really what else could I do? There is no one way to give care. There is no one right solution, and perhaps no best solution, to many of the challenges we face. All we can do is work from a place of compassion and know we did the best we could.
- You’re the proxy. It’s your decision. Along those same lines, when I was stressed because I was ready to make a healthcare-related decision and my sister needed more time to think about it, another person I trusted reminded me that as my parents’ healthcare proxy, I had permission to make decisions. “Your parents want you in that role,” she told me. “That’s why they appointed you.” After that, I continued to seek input from my sisters, but was more comfortable owning my decisions. My strategy now is one we use at work: high-input, low democracy.
- Don’t share moving facts. During this period of intense turmoil and transition, my parents were also looking for answers. But often, I didn’t have answers. I was waiting on more test results. I was waiting to see how a decision turned out. I was waiting to get a better sense of their financial situation and whether or not they qualified for different benefits. I was waiting for medicines to have an effect, or not. Every answer I tried to provide led to more questions. Or, I gave an answer and then had to explain when the plan changed. A wise friend told me never to share moving facts. “If a decision isn’t solid, don’t divulge,” she said. It was good advice. I started to share only what I knew to be absolutely true. When I had more details, I gave them out. My answers to my parents became less satisfying, but ultimately less confusing.
- Hire an eldercare attorney. As I mentioned, I was very stressed about money during this caregiver crisis. I felt like I was spending like crazy without knowing the big picture or what our long-term needs would be. When a friend suggested I meet with an eldercare attorney to help me sort out my parents’ future, I balked at the price tag, but knew I needed the help and so I did it. Some things are absolutely worth the money. An eldercare attorney is one of those things. Leave it to a professional to help you protect assets, sort out financial family issues, and help you access benefits. You may not see a return on investment, but you’ll potentially avoid costly mistakes.
- Ask for help. I never liked asking for help but when I shared with a friend that my to-do list had more than 200 items on it, she begged me to start reaching out for support. And she reminded me that letting people help us, actually helps them. Think about it: when someone you care about is in crisis, doesn’t it make you feel better when you can do something meaningful for them? And doesn’t it make you feel helpless when you cannot? From that point on I kept a running list of tasks that I could outsource and when I saw someone I thought could help, I asked them to take on one of those tasks.
- Hydrate. I believe, “You should take care of yourself,” are the six most annoying words a caregiver hears. We know that. What we don’t know is how. One of my friends made the mistake of telling me just that and I snapped at her. She calmly replied, “Are you drinking enough water?” It was such a simple suggestion. Not only is hydration a key component of a healthy life, symbolically it made me feel good to do even one small act of self-care every day. I wasn’t sleeping enough. My sugar and caffeine diet was horrible. I hadn’t figured out when to exercise, but I was at least doing one thing to take care of me.