Published on June 15, 2018
A regular feature for family caregivers
There are approximately 43.5 million caregivers in the U.S. They provided an estimated $470 billion worth of care in 2013, nearly the same amount that the world’s largest company, Wal-Mart, made in sales that same year. The value of this unpaid care exceeded paid home care and total Medicaid spending.*
Caring for her mother has taught Mable to be an advocate for both of them. She wants to use her hard-earned knowledge to empower others who are taking care of loved ones.
Nevertheless, this labor of love is truly priceless. It is also exhausting, sometimes overwhelming, and often isolating. Caregivers can become so busy taking care of others (a spouse, a child, a parent, a friend) that they neglect themselves.
“I had to learn to be an individual again after my husband died. You need to hold onto that as a caregiver,” says Mable, who has now been her mother’s primary caregiver for the past two years.
“Losing my husband when he was only 50 prepared me for this. After all the tears have stopped, and you look in the mirror and ask yourself what you’re going to do, the answer has to be: Keep going. But in order to go the distance, you have to take care of yourself,” she says. “If I go down, she goes down,” Mable says of her mother.
Mable radiates confidence, and her huge smile easily brightens an entire room on a gray day. To look at her, you would never know she has struggled with the duties she has taken on. One of the most difficult challenges she faced was the feeling of isolation that came with her new responsibilities.
“People will rally around when there’s a diagnosis. They mean well, but they move on, and you can’t. You are isolated, angry, hurt. It strengthened me when I accepted that they won’t always be there. You have to get past the hurt.”
Another challenge was cleaning out her mother’s house, so that her granddaughter could move into it with her own family. It took a year of weekends to prepare the house, but in the end Mabel wept with joy to see the children planting apple trees and raising chickens on her mother’s land.
We think Mable is a hero, and her Alive team commonly refers to her as a role model when it comes to using the support they make available to her.
*AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.
Steps for Taking Care of Yourself, According to Mable
- Don’t trust the naysayers who have never done this. Trust yourself. Know that you can do this, and know that you don’t have to do it alone. The Alive team will be there for you every step of the way.
- Let yourself be supported emotionally. Get help, get in a group. Get the shame out over whatever is going on in your family. You are not by yourself. Be honest with the people who are there for you. Not every day is a good day, and you don’t have to pretend it is. Use your hospice team, even if you just need someone to talk to.
Schedules are your friend
- Don’t let your medicine and supply inventory get low. I order medicine every two weeks. Diapers and chux are always kept in reserve.
- Set a schedule for the people coming into your home. You need time to be alone and relax. I don’t have anyone come in on Tuesdays or Thursdays.
- Create a personal schedule and stick to it. Even if you’re working at home all day, get up at the same time and get dressed as if you were going out.
Be true to yourself
- Don’t get so lost in caregiving that you lose yourself. Continue to do the things you love, and make time for yourself.
- Don’t let anyone walk over you. Be assertive, kind, respectful, and gracious, but don’t ever let anyone walk over you.
- If you don’t feel you have a good personality fit on your team, let them know your concerns.
Education is empowerment
- Read the blue book Gone from My Sight: The Dying Experience, it’s for you. Be sure to ask your team for a copy.
- Learn all that you can to make your work easier. It’s less stressful when you have knowledge. I learned to flush a catheter. It was less work than cleaning up after a clogged catheter.
Use all of your hospice tools
- Use the Comfort Kit when it’s needed. Store it safely, but don’t be afraid to use it when it’s needed. My mother was agitated for days. I finally called the hot line. By following the nurse’s instructions and using the pre-measured medication in the prescribed manner, we were able to get her calmed down and comfortable again.
- Take advantage of the hospice in-patient respite as much as you can; you are going to need a break.
- I love my Alive volunteer. Now, when she comes, I don’t go anywhere. I just love staying here and talking to her.
- Trust your hospice team. They know what they are doing, and they are here to help you. The call center is 24/7. Don’t be afraid to use them.