When I finished writing my book, “Letters from Madelyn, Chronicles of a Caregiver” in 2006, I found a great agent, but she couldn’t find a publisher. Everyone she talked to said, “Caregiving is depressing. People won’t buy a book on that topic.”
I didn’t think they were right, so I self-published. When the books were delivered and we stacked the cartons from floor to ceiling in our basement storage room, I realized I had better find a lot of people who were interested in caregiving, otherwise I might end up having a really big bonfire. As it turns out, there are 65.7 million caregivers in the U.S., which means that nearly one-third of all adults in this country are caring for someone who is ill, disabled or aged.*
Over the course of the last seven years, I have had the honor of delivering dozens and dozens of keynote speeches and conducting workshops for family and professional caregivers across the country. Every time I present at a conference, I talk to as many caregivers as possible to find out how they are coping. I always ask what’s working for them and what kind of support they need to continue caring for those who can no longer care for themselves.
I have discovered that if you ask a caregiver what she needs, she is likely to say, “I can’t think of anything. We’re getting along okay.”
However, when you tell a caregiver that having negative feelings doesn’t make her a bad person, you see immediate relief in her eyes. If you offer a little physical support or respite care to caregivers who are providing around the clock care for a loved one, they often act like you have just delivered Christmas and the 4th of July to their front door.
How to Ask for and Offer Physical Support for Caregivers
My friend Mary recently stopped by to see her friends John and Catherine after hearing that John, who had just turned 80, had been diagnosed with esophageal cancer. Until he’d received the diagnosis four weeks earlier, John and Catherine had been enjoying an active and happy retirement together.
John’s aggressive chemotherapy treatments burned him from the inside out. He is now on a feeding tube and is undergoing skin grafts on his arm. Catherine feels like she can’t leave him alone for a minute.
When Mary asked if there was anything she could do to help, Catherine said, “Yes! Could you please take John’s hearing aids to Costco and get them fixed?”
A month ago, Catherine, a fiercely independent and capable 75 year-old woman, wouldn’t have dreamed of asking someone to run an errand for her. She would have slipped a trip to Costco in between other activities. But leaving home now, even for a short period of time, just isn’t possible. (Mary was thrilled to be able to do something useful.)
Practical Ways To Offer Support To Caregivers
If you are providing in-home care to a loved one, it’s important to have a supportive network of friends. Make a list of the errands, services, and projects that need to be done. Then when people ask if they can do something, offer the list and let them choose what they would be willing to do. The list could include items such as:
- Pick up a prescription
- Shop for groceries
- Mow the lawn
- Deliver a meal
- Stay with your care receiver so you can run errands, take a walk, or do something else for yourself
- Drive your care receiver to a doctor appointment
- Contribute financially to help pay for a housekeeper, adult day care, respite care, or other expenses
If you are a friend or a relative of a caregiver, review the list above, and perhaps instead of asking generically if there is something you can do, ask if you can offer help in any of these specific areas.
Emotional Support for In-Home Caregivers
Several years ago I bought a greeting card that featured a quote from Edna St. Vincent Millay. On the front it said, “It’s Not True That Life is One Damn Thing After Another.” On the inside it says, “It’s Actually One Damn Thing Over and Over Again.”
Any caregiver will tell you that the physical stress of caring for someone with a degenerative and progressive disease can be dreary, demanding and sometimes downright disgusting. But as challenging as that can be, it pales in comparison to the emotional stress of caregiving.
Most caregivers will agree that there are four emotions that they have to deal with over and over again. They are: Anger, Guilt, Depression and Grief.
Anger. It helps to know that anger is a normal and predictable response to situations over which we have little or no control; and the number of situations, people and events over which caregivers have little or no control is practically limitless.
Caregivers get angry with the medical community, with insurance companies, siblings, children and friends who don’t show up when they’re needed. They get angry with the disease, and they get mad at their care receivers. It really isn’t a question of whether a caregiver will get angry, it’s more a question of how often and to what degree.
Guilt: Guilt generally follows closely on the heels of anger. Caregivers think they should always be kind, loving and generous. When their actions or feelings fall shy of saintly, they feel like they have failed, and they feel guilty.
Depression: Depression is a common experience among caregivers, especially with individuals who to try to suppress their feelings of anger and guilt. Most caregivers go through multiple episodes of reactionary depression, which is a temporary condition generally brought on by an event or circumstance that causes them to feel despondent and hopeless. It is also common for caregivers to experience clinical depression, which is a medical condition that requires medical treatment.
Grief: The fourth, and possibly the least talked about emotion is caregiver grief. People can mistakenly assume that grief starts when a loved one dies. Preparatory grief is the process caregivers go through as they have to continually adjust to ongoing changes and losses. Caregivers grieve the losses they have already experienced. They grieve the loss of the life they thought they would currently be living, and they grieve the losses they anticipate they will still have to suffer in the future. Preparatory grief is complicated and difficult, and it can last for a very, very long time.
How to Find Emotional Support for Caregivers
Caregivers need to know that anger, guilt, depression and grief are an inevitable part of the experience. Having to deal with these feelings over and over again does not make them bad people. None of these emotions signal selfishness, weakness or character, or a lack of faith.
Being a caregiver is one of the most incredibly difficult jobs any of us will ever do. There isn’t anything glamorous about it, and until the last few years there has been limited acknowledgement or support for family caregivers. Even now caregivers can feel isolated and alone.
Taking care of yourself emotionally is as important as taking care of yourself physically. In order to maintain your equilibrium, consider some of the following action steps:
- Talk to friends and relatives who will let you rant. Make sure these individuals will listen with empathy and will not criticize or judge you
- Participate in a regularly scheduled support group where you will feel safe expressing your feelings. Being with other people who are in a similar situation can help you know you’re not alone
Check out the following resources on the Internet:
- CaregiverHelp.com. This is a video-based website my husband and I developed that takes people through a three-step process of developing an “Attitude of Creative indifference” toward the emotional stress of caregiving. Click the “Join Now 7-Day Free Trial” tab to check it out.
- Caregiver Help Word of the Day (https://www.facebook.com/CaregiverHelp?ref=tn_tnmn) is my Facebook page that offers a daily dose of encouragement and inspiration
- Caregiver Support Forum, (http://www.agingcare.com/Caregiver-Forum) is a daily question and answer forum moderated by Carol Bradley Bursack, who is an author, speaker and elder care expert
- Caregiver radio shows. There are a number of Internet radio programs. Some deal with specific diseases such as cancer and Alzheimer’s. Others have more general topics. The best way to find one that you like is to Google “Caregiver Radio Shows” and listen for a while. The shows are recorded, so you can listen on your own schedule.
Fortunately, the amount of support for caregivers is growing as the public’s awareness of the financial impact of caregiving increases. In 2009, the annual value of unpaid caregiving was estimated to be $450 Billion. As Baby Boomers age, that number will grow exponentially. The government and health care organizations have recognized that supporting family caregivers must become a priority in order to keep overall healthcare costs contained. More help is available now than ever before, but there is still a long way to go.
If you are a caregiver, acknowledge the difficulty and the importance of your role and don’t be reluctant to ask for physical help and/or emotional support.
If you have a friend or relative who is a caregiver, don’t assume he/she is doing fine. Do something. Run an errand. Fix a meal. Offer a few hours of respite. If you can’t do that, then offer a word of acknowledgment and recognition. Even the smallest act of support will be appreciated more than you will ever know.
Elaine K Sanchez is an author, speaker and co-founder of CaregiverHelp.com, a video based caregiver support program. She co-teaches “Gero 407- Caregiving” at Western Oregon University with her husband, Dr. Alex Sanchez. She also writes the daily blog, “Caregiver Help Word of the Day”.
* [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012