When I was asked if I had anything to contribute to an article on Caring for Caregivers, my eyes welled up with tears in just hearing those words.
As a newly minted caregiver, I was raw with sadness, exhaustion, and being overwhelmed with the last four months of my life. But I marched ahead with every task, trying to greet each with an equal level of enthusiasm, focus and determination. This simple question triggered an emotional response I had been burying. It was if my friend had looked deep into my soul and said, “No, how are you REALLY doing?” I had not shed a tear up until that point.
As their worlds shrink, their freedoms wane and their priorities reshuffle, caregivers don’t often recognize when they themselves need help. This balance shift is in concert with their parents’ needs growing to outsize proportions to their own needs or wants.
While I have only a few months of experience in my new role, there are already some important lessons learned:
- People say say they want to help, but they don’t know how. Don’t be shy – ask for what you need – they REALLY do want to help and will appreciate being given a specific task or role.
- Many people are uncomfortable – aging, death, conflict, these are topics most people avoid. Try not to feel slighted if you feel friends or family shying away.
- Enlist helpers that have unique areas of specialty—a friend that can cook, a colleague that knows their way around Medicare, a housekeeper who can help out more in your home, a friend willing to pick up kids for you. Create a support network around you. You can’t learn the intricacies of Medicare and home health coverage overnight. (Roseman’s Medicare Call Lab has helped thousands understand and access their benefits. The Center for Medicare Advocacy is also a wonderful organization that helps people navigate the complexities of Medicare.)
- Get back to your own basics. Take a step back and be sure you are hydrating, sleeping 6-8 hours a night, eating nutritious foods, and taking your vitamins. Keep up on your own doctor’s appointments.
- Find a great geriatrician. Geriatricians are wonderful advocates for their elderly patients, and they do incredible work in coordinating various opinions of the many specialists you’ll likely be seeing. One geriatrician once said to me, “Some physicians are trained to focus on one organ or disease. We have to advocate for the patient and what is reasonable, tolerable and best for their overall quality of life.” Geriatricians (and pharmacists) will also be best suited to look at the complete picture as it relates to prescribed medications. Make a list of the medications your loved one is taking and observe how their mood, energy, vitals, and appetite shift throughout the day. You might be seeing something others don’t see. Keep a log of these observations and metrics.
- Center yourself in focusing on something to which you are looking forward or something that brings you joy. Pick something positive and worship at its altar daily. Are you dreaming of recovering an old sofa, putting in an herb garden, or planning a trip? Let that bit of light into every day and allow it to anchor you.
- Resist removing yourself from comforts. Sometimes in hard times, we subconsciously deprive ourselves of things that make us feel good. Is it guilt? Is it resentment towards others living happier moments in their life? Hug your children, celebrate your friends, listen to someone else’s story, go out to dinner and turn off your phone, take a long walk. You’ll be the better prepared for tomorrow.
- If you are lucky enough to share the load with other family members, do. You may have a family member who is especially skilled at managing the mountains of paperwork you’ll encounter, while you are better suited to handling the doctor’s appointments and healthcare issues. Again, try to create a team where everyone’s skills are utilized.
- Check on the caregivers who help the caregivers. Ask the caregivers that are helping you and your loved one how they are doing. Adult children are somewhat handicapped in taking care of their parents as they are so emotionally involved. Nurses and Home Health Aides are not, they have no existing family dynamic to deal with and this is their life’s work. Let them do their jobs, support them, and relish the time with your loved one spent not talking about 02 levels and blood pressure readings.
To all the caregivers out there, you aren’t alone. If only we could come together and share our lessons learned, we would be in a much better place. The National Alliance for Caregiving has lots of helpful tips and resources. I wish you all the best for beautiful moments with your parents, and for strength in your journey ahead.
