Nearly one-third of people caring for terminally ill loved ones suffer from depression according to research from Yale University. About one in four family caregivers meet the clinical criteria of anxiety. And a recent study found that 41 percent of former caregivers of a spouse with Alzheimer’s disease or another form of dementia experienced mild to severe depression up to three years after their spouse had died.
Caregivers are so vulnerable to depression because they often sacrifice their own needs while tending to their loved one and because of the constant stress involved. Here, then, are 12 tips to help protect you from anxiety and depression and to guide you toward good mental health as you care for a relative.
1. Acknowledge it.
If you haven’t already, say this out loud: “This sucks.” Call a spade a spade. Granted, you don’t want to ruminate on negative thoughts for too long. But suppressing your emotions–forcing that positive cap on each and every thought–can actually do more harm than good. For example, a recent study in the journal “Psychological Science” reported that people with low self-esteem who told themselves positive statements (“I’m good enough, I’m smart enough, Gosh darn it, people like me!”) actually ended up grumpier and with less self-esteem than before they started. What does this mean? Sometimes the best thing that we can do for our mental health is to be honest. And if you’re a caretaker, that means acknowledging that your situation, well, simply sucks.
2. Educate yourself.
Relieve some of your stress by reading up on your loved one’s condition. I say that because if you’re like me, you’re probably scared. You don’t know what’s coming down the pike. You detest surprises, and ever since your loved one fell ill, your life has been full of these shockers.
There’s no way of eliminating all the surprises, of course, but if you understand the illness(es) of the person you’re nursing, then you can better predict his behavior, and can prepare yourself for what may happen in a month or in a year. You might also consider attending a caregiver training program. A recent study showed significant improvement in the quality of life of caregivers who received training. Finally, two books I recommend are “The Caregiver Handbook: Powerful Tools for Caregiving” and “Caregiving: The Spiritual Journey of Love, Loss, and Renewal.”
3. Grab your own oxygen mask.
It always goes back to the ten-second spiel you get right before your plane takes off (or crashes). “In the event of an emergency, an oxygen mask will drop from the compartment above you. Please fasten your own mask before assisting others.” Or, on Southwest airlines, they say, “Now would be a good time to choose your favorite kid.”
Taking caring of your own needs is really as important as grabbing your oxygen mask first because you’ll be running out of breath early in the inning if you hold off on breathing until everyone is well. A study published in the “Journal of the American Medical Association” found that stressed-out older caretakers tending to a sick spouse had a 63 percent risk of death compared to the non-stressed-out caregivers or to lucky folks who don’t have to fetch anyone a glass of water all day long.
4. Schedule a break.
Give yourself a break every day. That DOES NOT mean that you go about your day and grab whatever free 15 minutes you can get –before the meatloaf is done or the jello is solid – at which time you sit down to read some depressing headlines in the paper, hoping for no interruptions. That DOES mean scheduling one half-hour every day at the same time of day that you can, guilt-free, put out your “Off Duty” sign, and during that break no one is allowed to bother you with requests. By taking the same half-hour every day, you have a better shot at convincing your ill loved one that you really are serious about needing some time to yourself.
5. Label your guilt.
I’m not going to tell you to get rid of your guilt. Get real, I’m Catholic! But I am going to advise you to label your guilt as helpful or unhelpful, because I bet you think you’re supposed to own all of it. The negative intrusive thoughts that tell you that you are a loser for not doing more for your loved one? Bye-bye. The voice that says you could be managing all of this mayhem a tad more effectively? Try to tease out some specific suggestions. They might help you come up with ways to better delegate responsibilities or to clean up messes without using so many cuss words.
6. Get organized.
If caregiving is anything like parenting–and I think it is, except for the fact that kids eventually grow up (a truth that I cling to in moments of desperation) –a small bit of organization can go a long way.
My June Cleaver role became a tad easier when I implemented some simple household rules like: no TV before 5 pm, one treat a day, no snacks after dinner, and so on. I initially resisted this kind of structure–it’s so not my style–but I have found that it really does facilitate managing kids (and I’ll add in sick ones) … because they both want things all the time, and that can become very wearisome. If my kids know they can’t watch SpongeBob SquarePants before 5 pm – and I follow up consistently on that rule (the hard part) – then they will eventually stop asking. The same goes with a sick mother or wife: if she knows dinner is at 6 every evening, and that Wednesday is pizza day, then you’ve just given her one less thing to whine about. Theoretically, of course.
7. Get out of the house.
I know what it’s like to be captive inside your home, to be a prisoner locked in a dark and frightening cell. It will drive you straight to the community room of a psych ward. At least that’s where my isolation period ended up. When my kids were babies, I didn’t do anything but nurse, change diapers, watch Baby Einstein videos, and clean up squash stains on every piece of clothing I owned.
Today I make myself sign up for swim clubs and community programs even if I don’t want to, because I know that the time spent outside of the home with other human beings is as crucial to my mental health as eating the right foods and exercising and getting support.
Taking time to enjoy a pastime isn’t a selfish act. It will help you be a better caregiver because it will elevate your mood – not to mention assisting you with concentration and patience — which will in turn help your loved one.
If you take away just one piece of instruction from my article, let it be this: get good sleep.
Why? Sleep disruption leads to insanity.
Seriously. In his book, “The Depression Cure,” Stephen Ilardi, Ph.D. writes:
When laboratory rats are experimentally deprived of slow-wave sleep [a deep, restful form of slumber] for several days at a time, their brains start to malfunction and they become seriously ill. Humans react in much the same way. After just a few nights of slow-wave deprivation, most people report intense, aching fatigue. After a few more days, they begin to feel physically ill. They also start moving and speaking more slowly. Many people even complain of a sensation of physical pain (even though they can’t quite tell where it’s coming from). In this sleep-altered state, mood turns despondent, social interest disappears, thoughts turn negative, appetite becomes erratic, and concentration wanes. In other words, with the disappearance of slow-wave sleep, the core symptoms of depression quickly emerge.
9. Reduce your expectations.
In her book “Ready to Heal,” author Kelly McDaniel describes the process of grieving relationships and how much energy it uses up. If you think about it, caretakers are constantly grieving. With every errand or task, they are reminded of their loss: of how an illness robbed them of good times with their loved one. And they yearn for that old life back.
Factor in all of this grieving, and it’s no wonder why caregivers feel so exhausted and overwhelmed and tired. McDaniel writes:
The energy it takes to endure withdrawal [from a relationship] is equivalent to working a fulltime job. Truthfully, this may be the hardest work you’ve ever done. In addition to support from people who understand your undertaking, you must keep the rest of your life simple. You need rest and solitude.
10. Solicit help.
Here’s where you have to get creative. Especially if you’re a stage-four people pleaser like me. You have to imagine that you are desperate (because you are) and that your good health depends on getting some outside help: preferably free, from the family members who are too busy living their lives (guilt-ridden, you hope).
Don’t wait until you come down with shingles or pneumonia or chronic fatigue. By then you have missed your window of opportunity. Start when you have a little energy, so that you can brainstorm about some inventive ways you can barter for a little assistance. If no one from your family volunteers, inquire with the National Center on Caregiving, or the National Family Caregiver Support Program for some different home heathcare assistance programs, Meals on Wheels, visiting nurses, or adult daycare programs.
11. Postpone important decisions.
Psychologists advise persons who have just lost a loved one to not make any important decisions for a year. The National Institute of Mental Health suggests that depressed caregivers live by the same guideline: hold off of running away with your cable guy is somehow going to make this caregiving situation disappear, or leaving your wife because she’s not at all empathetic to your circumstances, or deciding that going into real estate is what will make you happy until you’re feeling a tad more stable and peachy.
12. Talk about it.
It doesn’t matter how you get support, but you’re going to need some. You could join a support group for caregivers. Ask your doctor for referrals or contact organizations such as the National Center on Caregiving (www.caregiver.org), the National Family Caregiver Support Program, or the Alzheimer’s Association (www.alz.org).
Or you could build a small network of people you know who are going through the same thing you are. The mere act of spilling your guts to a friend is going to do your mood some good. New research from the University of Michigan has established the link between spikes in progesterone and social bonding. Says lead author Stephanie Brown: “Many of the hormones involved in bonding and helping behavior lead to reductions in stress and anxiety in both humans and other animals. Now we see that higher levels of progesterone may be part of the underlying physiological basis for these effects.” Yeah! More evidence that gabbing pays high dividends for one’s health, so talk all your want and cry too.