"I propose to make a different world where caregivers are the most respected people." This is how Wendy Lustbader started out her talk at a recent workshop with a group of caregivers.
Caregivers probably work more hours in a week than almost anyone else — between their "real" jobs, their immediate family responsibilities and their caregiving responsibilities — but are largely underappreciated, says Lustbader.
Between telling humorous stories about her own experience as a caregiver for her mother-in-law and other caregivers she’s met, Lustbader draws attention to some of the key reasons why caregiving is so difficult, first by explaining why it is so hard to receive care, then by talking about why it is so hard to be a caregiver.
Why is it so hard to receive care?
Being aware of the following eight points will help give caregivers a clearer perspective on what their loved one may be feeling.
- I don’t feel comfortable asking for help.
- No one wants to be a burden on others.
- It is hard to admit to needing care.
- I’m afraid that I’ll ask and no one will be there, or I will be abandoned.
- I don’t want to lose my privacy.
- I don’t want to feel vulnerable.
- I don’t want to lose my dignity.
- I am the giver — not the other way around.
Why is it so hard to be a caregiver?
Being aware of the following four points will help caregivers open the discussion about their own real and valid feelings.
- It is exhausting. Whether you spend one hour or 24 hours taking physical care of your loved one each day, it is the "constant vigilance" and pressure of knowing that you may be needed at any moment that wears you out as the primary caregiver.
- The guilt is overwhelming. No matter how much time and energy you spend caregiving, you may feel guilty that you’re not doing more. Also, the sick and frail tend to take their own frustrations out on those who care for them the best, says Lustbader. "Do you bite the hand that feeds you? Yes!," she says. To combat the guilt, know that everyone’s ability to care is individual, based on their own relationships and experiences. "Don’t compare yourself to anyone else," Lustbader says.
- I never seem to have enough time. As a caregiver your time is limited, but you might not realize that your loved one may have a lot of time on her hands. "That’s why Grandma may need to walk every aisle in the supermarket even though she only needs bread and juice," remarks Lustbader.
- I feel isolated. Often when a task takes up most of our time and energy it is all we can think or talk about. "While I was caregiving for my mother-in-law, I had nothing to say to my friends," notes Lustbader. In addition, often people shy away from being around illness or talking about sad or depressing topics. Vice versa, your loved one may feel ashamed of her condition and shy away from outside contact. In any case it is a good idea to seek out people in a similar situation to your own, in a formal or casual support group. "No one understands what you’re going through like a fellow caregiver," Lustbader says.
The dance between guilt and resentment
When you’re not feeling guilty about the amount and quality of your caregiving, you may be feeling resentment toward your loved one. How do you come to terms with these feelings? "The answer is in your own bellies," says Lustbader. "When you start to feel resentment, you’re probably giving too much. Plus, nobody wants to be resented — they can see it in your face."
So take time to tend to your own needs, so you can take better care of your loved one. "Lift your eyes from your labors and see something different — it’s amazing how healing that can be," Lustbader says.
Lustbader shared with the group that she was having so much difficulty coming to terms with caregiving for her mother-in-law that she finally decided to read her own book for help. "In my book, a much younger self said: ‘No matter how hard you try you can’t take away someone else’s loneliness.’ That’s when I realized that my husband and I needed to live while my mother-in-law was dying." So she and her husband resumed their weekly dinner-and-a-movie dates, and after the second week her mother-in-law finally said "Go and have a good time."
She concludes with her "caregiver benediction":
A rested caregiver
has more patience
has more tolerance for frustration
has more of a sense of humor
has more to say and more to give.
To take care of yourself is to take care of the person who depends on you.