Lessons Learned from a Family Caregiver’s Journey
I have been a family caregiver for my wife, Jill, since 2002. During this time, I have learned a lot about myself…some good things and some, well let’s just say, areas where I could use some work.
Few of us ever think about being a family caregiver before the need actually arises. Acquiring the family caregiver title can happen suddenly, without a playbook or training.
My introduction into the world of caregiving came with no warning. Early one Saturday morning in February, 2002 I was talking with Jill, who the night before hadn’t been feeling well. Out of nowhere, Jill had a grand mal seizure. After being rushed to the hospital and going through a battery of tests, it was determined Jill had a meningioma, a benign mass between the skull and brain. Jill’s case was complicated because of its location, and a suspicious secondary highlight on the MRI. Between us, suspicious is one of those words you would rather not hear from a doctor.
In a period of one week, our lives went from everything being great, to a slew of frightening consultations with neurologists, neuro ophthalmologists and neuro surgeons. The consensus was to do a follow-up MRI in three months. If the suspicious area remained highlighted then we would need to deal with it. If not, the focus would be on the meningioma. Wait three months for this news? Are you freakin' kidding me?
As a take-charge person (Jill has a different description for this.) during the three month wait period, I made sure Jill was receiving the best treatment possible to quickly get back on her feet. Equally, I felt an overwhelming need to ensure our 11-year-old son, Samson, was ok, and believed all would be fine.
During the three months, Jill managed to get back to work at the art gallery and the three of us continued as normal behavior as possible, Candidly, while outwardly keeping a very even and positive front, I felt so much was totally out of my control and very alone.
In May 2002, Jill’s three-month follow up MRI remarkably showed the suspicious mark had disappeared. Now the focus was on addressing her meningioma.
Since May 2002, as a family, we have had many up and not-so-up times. It would have been so helpful to know before this journey began what I know now. Including…
Control Only What You Can and Move On.
Revise your concept of control because it’s fleeting at best. What we do have absolute control over are our thoughts and the meaning we give to situations. Managing our perception of a situation makes it a lot less stressful to work through.
You Are Not Alone So Don’t Be.
As a new family caregiver, I drifted toward my comfort zone, which is when things get overwhelming, to withdraw into myself. While cordial I stopped engaging at a deeper, more meaningful level with family and close friends.
I decided to see someone professionally to discuss this. I still remember her exact words, “You may not want to reach out but take the first step and let people reach in.” If they are interested enough to reach in to you, be appreciative and honest with the way you feel. This new mindset helped me re-engage and “connect.”
Practice Self-Compassion.
"I should have done this." "I am not spending enough time with Mom." "I should not have lost my patience when dad called me at my office for the 6th time today." Over the years, this negative self-talk became too prominent for me.
When this happens, ask yourself…If a friend was telling you this what advice would you give? Stop beating yourself up and focus on feeling good about what you’re doing and who you are.
Knowledge Delivers Confidence.
A critical family caregiver role is being your loved one’s strongest health advocate, and the best way to do this is to learn all you can about their health situation.
Today’s medical community respects and appreciate a family caregiver’s role. They understand that no one has better day-to-day insights into what your loved one is experiencing than you—and in fact, they may very well defer to your observations before developing treatment next steps.
Reduce Stress. Practice “Me Time.”
“I am the primary family caregiver and it’s solely my responsibility to get things done.” This mindset is a ticket to caregiver burnout. We all need quality “Me Time!”
Earlier I mentioned the importance of letting people reach in. It’s equally important to reach out and ask for help when you need it.
You will be amazed at the size of your potential support community…family members, close friends, support group members, members of your place of worship, and even for-pay non-medical caregiver respite resources.
When in the throes of family caregiving, I can say with complete certainty it is a must to carve out time each week to do those activities that bring joy into your life. This doesn’t make you selfish, it makes you a better family caregiver.
I have found family caregiving to be an interesting and rewarding journey, at times taking me to emotional places I had no idea existed, while other times challenging me to admit my vulnerabilities and helping me to experience an inner honesty and greater calm.
As a family caregiver, nothing is more gratifying than for me to know my family feels safe and confident just by knowing I'm there. This is important and wonderful, however, please don't forget as a caregiver it's also so important for you to be there for YOU!
Help yourself. Help others.
