“A list of 800 phone numbers and three booklets didn’t help me in the least. I needed someone to actually talk to me—to stay with me—to help me figure out what to do as everything was closing in around me.”
As any family caregiver knows, your commitment to your loved one is beyond question. Whether you’ve been providing care for a month, a year, or a decade, you’ve clearly dedicated yourself to ensuring that your loved one has the best care and quality of life possible for as long as possible.
There is a hidden cost to caregiving. It's not a financial expense, although you may be paying a pretty steep price. It's measured in emotional currency and there are no insurance policies to guarantee you protection. What is it? It's the price you pay when illness or disability deprives you of the intimacy you once enjoyed.
" Life feels so heavy. It's as if there is a gray cloud that hovers over everything I do."
" Decision making has become so frightening for me. I think I'm losing my mind."
"I wish I could sleep forever."
Have you ever wished you could just pick up the phone and call someone who would take stock of your situation, help you access services, coordinate your loved one’s care and more? You’re definitely not alone. There are people who provide these services and they are called case or care managers. Care managers are usually nurses or social workers, and although it is likely that you are neither, you can still learn to think like a care manager and make things somewhat easier for yourself and your care recipient.
On the simplest level speaking up is about raising the sound of our voice so others can better hear us. Speaking up helps solve our problems. It’s how we learn and bring about change. During the course of a typical day, we probably speak up quite a bit. When it comes to family caregiving, however, many of us tend to be very quiet. We don’t tell our children that we need help caring for their dad. We don’t tell our boss we would like to have a more flexible schedule. We don’t listen to our instincts when speaking to medical professionals and, as a result, don’t ask the right questions.
The slogan she saw on a man's t-shirt at the mall stopped Brenda in her tracks. "It said 'Normal Is Dull,'" recalls the 55-year-old caregiver whose mother has Alzheimer's disease. "I just stood there thinking, 'You should spend a few days with us, mister. You sure wouldn’t have to worry about normal being dull anymore!"'
Our neighbor Allen, who lives directly across the street, is tall, well over six feet. He carries his height on a solid frame. I see him out jogging from time to time and working in the yard.
In caregiving circles we hear a lot about the word "support". Family caregivers regularly seek supportive relationships with other caregivers, knowing they can provide the emotional sustenance needed during difficult times.
What support doesn't do however, is change the circumstances under which you are living. It doesn't relieve you of some of your responsibilities. It doesn't minimize the job at hand. That's the work of a different word - and that word is HELP.