A good friend, Serena,* called me in tears.
"Sam just doesn't understand," she said, "and it's so difficult on our marriage."
Serena, a stay-at-home mother, and Sam, an attorney, live in Milwaukee, a two-hour drive from her parents' farm. When it became evident that her mother's breast cancer was terminal, Serena began to spend several days a week at her parents' home.
She put 9000 miles on her van in 7 weeks in the middle of that icy Wisconsin winter. Sam demanded to know how long the arrangement would last.
"As long as she lives" had to be the answer.
If you think you're hearing more about caregiving than you used to, it isn't your imagination. Almost one in four American households, about 22.3 million, provides emotional or physical care for aging parents, spouses, or siblings. That's three times the number from ten years ago. Seventy-five percent of caregivers are women; many are employed full-time outside the home.
As the population ages and caregiving needs multiply, how can we fulfill the biblical mandate to "leave and cleave" while accomplishing the equally biblical command to honor and care for our parents?
"In sickness and unsupport"
One of her mom's hospice nurses had called Serena in the middle of dinner earlier that evening.
"Three doctors agree Mom is within three or four days of death," Serena told Sam and the girls as she hung up. "They say I should come tonight."
"Those doctors can't know that," he said.
"I don't want to risk it," Serena said. "I want to be there when she goes."
"Why?" Sam said. "You should be here with us, instead of neglecting us."
"Sam, she's my mother and she's dying! Don't you understand that?"
"I understand you're choosing between me and your mother," he said angrily. "Has it come to your attention that my mother has cancer also? I don't run home every time she sneezes." And with those words, he left the room.
"Did you and Sam ever discuss what you'd do when the end came for either of your mothers?" I asked when Serena called to tell me her story.
"No," Serena said. "Sam doesn't want to be there when his mom dies. He won't talk about it."
Even though Sam appears unsympathetic and hard, what happened to Serena and Sam is not uncommon. Caught in a caregiving circumstance beyond their control, communication broke down. Silence, hurt feelings, and to a certain extent, selfishness, reigned until it was too late to have a calm exchange of viewpoints.
Although your experience may not be as extreme as Sam and Serena's, many of the same issues can be avoided. While caregiving can be challenging, it can also be one of the most deeply rewarding experiences of your life—and marriage. Here are six ways you can ward off marital disaster and strengthen your bond when faced with caregiving.
1. If possible, avoid long-distance caregiving.
Eric and Pam had lived in Erie, Pennsylvania, their entire lives. Their only child, Janet, lives with her husband and two children in Charlotte, North Carolina. When retirement came, Eric and Pam decided to move to a retirement community in Charlotte, so that if they had problems, Janet would be close by.
Their wisdom became clear a dozen years later when Eric died. Janet and her family were close. The couple's new friends had become old friends, a marvelous support group for Pam. Janet says she's relieved that her mother is in a sheltered place with help as close as a call button. "What would I do," she says, "if she were still nine hours away, alone in that big old house?"
If your parents live far from you, ask if they'd consider moving closer to you or to one of your siblings. Keep in mind that changes of this magnitude should be made in your parents' best interest and never simply for your own convenience. But having them closer makes caregiving easier on your parents and your marriage.
2. Get and share answers.
In the middle of a hectic Monday morning, Ken Rogers took a phone call in his New York City office. It was his widowed mother's neighbor from Poughkeepsie, almost two hours away.
"You'd better come right away," the caller said. "It looks as if your mom has had a stroke. The hospital staff want to know who her primary care physician is, what medicines she takes regularly, and what insurance she has."
Long before the need arises, find out who your parents' primary care physician is. What other doctors do they see? What hospital do they prefer? What medications do they take regularly? Who is their pharmacist, banker, broker, accountant? Who does the taxes? What insurance policies are in force? Who do they want notified in an emergency?
Find out if they have wills. Are they in debt? Do they have a durable power of attorney? Living wills? Do they want a Do Not Resuscitate order?
Make it clear that you aren't attempting to get control of their money or property. You just need answers for an emergency situation. Share that information with your spouse so you both are on the same page.
3. Lay ground rules.
When a parent must move into your home, have a frank, realistic discussion with your spouse. Cover everything from who will pay the extra cost and shoulder the financial burden to ways to guard your couple time. Then make ground rules for the entire family.
That's what Teresa and Ron did two years ago when it became apparent that, because of financial problems and early signs of Alzheimer's disease, her widowed mother, Judy, was going to have to move in with them.
"Ron and I had a long discussion," says Teresa. "Then we had one with Mom before she moved in, to set ground rules." They decided sleeping arrangements and who would pay which bills. They let Teresa's mom know she wasn't responsible for disciplining their kids. If there was a problem, she was to tell Ron and Teresa about it. On the first of each month, when Judy's social security check comes, Judy and Ron go over the bills together and he writes the checks for them. If there's money left over, it is Judy's to spend as she wishes. Teresa and Ron pay all the household expenses—mortgage, utilities, food.
Their biggest adjustment? "Privacy!" Teresa says. "Mom is from a big family, and everybody knows everything. Ron came home from work one day and said the boss had given him a raise. When Mom asked how much it was, Ron smiled and said pleasantly, 'Judy, that's none of your business.' She's quit asking things like that. But all this openness was difficult on Ron for a while."
The other bump they had to get over was that Judy would enter their bedroom without knocking. Teresa and Ron handled that by putting a lock on their bedroom door.
Make sure you and your spouse agree on the rules and keep them impersonal. Don't allow emotions to get involved. Remember that you and your spouse need to be working on the same side with the same goals.
4. Take respite time.
Caregiving is isolating as well as emotionally and physically draining. Both Karen and David are upwardly mobile professionals. Karen quit her job to care for two young children and her father, who was diagnosed with Alzheimer's.
David worked hard. When he got home, Karen regaled him nonstop about her woes with the kids and her dad. She never asked about his day. She had no time for clothes, makeup, or hair. She aged rapidly, worn down and struggling. David came home less and less often.
When caregiving becomes a 24/7 job, especially if the care receiver has dementia, spouses need to agree on how to get respite time and who will pay for it. Otherwise, one spouse may turn into a workaholic, while the other becomes an aggrieved, resentful caregiver. It's better to find the money to pay a sitter than to have your spouse say, "It used to be our date night. Now you work late and I'm stuck at home with your mother."
A walk outside, a trip to the mall, or enjoying a cup of coffee and a good novel can do wonders for you and everyone involved.
5. Sometimes it's better just to listen.
Sometimes it's good to call a family meeting to divide up the caregiving. Who can take over the care receivers' financial affairs? Whose schedule is flexible? Who won't help?
Carol lives in central Kentucky, four hours from her parents' home in Ohio. Her two brothers and their spouses live in the same town as the parents. "Sometimes they'll call me and ask, 'What are Mom and Dad doing today? They don't answer their phone,'" Carol says. "I want so badly to tell them to get in the car, drive the ten minutes, and find out. But I don't."
Instead she makes the four-hour drive about once a month, staying for a long weekend to be sure bills are paid, prescription drugs are up to date, the checkbook is balanced, and the freezer is stocked with food her folks can easily heat and eat.
"When I realized my brothers weren't going to help, I was so angry," Carol admits. Realizing that her anger was too deep to manage alone, she got professional Christian counseling. "I know I'm being imposed on," Carol says. "But it will end."
Carol's husband, Alex, supports Carol, providing a listening ear and advice if Carol asks. But he's careful not to overstep. "Other family members see what's going on," says Alex. "I keep out of it and let their blood kin do the fussing."
Sometimes it's better to offer your spouse support, prayer, and a listening ear, than to contribute to the stress, tension, and pain with complaints.
6. Remind your spouse often of your love.
Serena's mother died four days after Serena's angry parting with Sam. Sam's mother lived another six months.
"Those six months were awful," Serena says. "I cried a lot in my grief, while Sam held in all his anxiety. As a lawyer he deals with harsh reality every day, but he copped out on his mom's death. He was determined not to be there when she died." Serena realized a lot of Sam's reactions to her were more about his struggle with his parent's aging and death than with Serena or his marriage.
She realized that Sam needed her compassion, love, and understanding. "That can be difficult to give when you're so focused on your parent," she says. "But it's a necessity. Mom will be gone; my marriage is forever. There are times in marriage when you have to say to yourself, I made a vow to have and hold till death do us part. It becomes nothing but that raw, hard, hurting duty, that commitment holding you together."
Try to remember that your spouse may feel neglected in the midst of caregiving. Small gestures go a long way to help feed the flames of marriage—an arm squeeze or pat, holding hands, a kiss, a walk together.
"I knew we'd come out on the other side," Serena says. "And we did. Our love for each other began to percolate again. But if Sam and I had not known the Lord and been committed to each other, we might not have made it."
Martha Evans Sparks, a freelance author, was married 42 years until her husband's death. She is the author of two books on caregiving. www.martha-evans-sparks.com
*Names and places have been changed.
Is Caregiving in Your Future?
Talking about aging issues isn't easy. But it's ultimately more difficult to leave concerns unaddressed until a crisis erupts. Caregiving can involve an emotionally charged and complex decision-making process. You cannot do it alone.
Here are some discussion-starter questions for you and your spouse if you may join caregiver ranks one day.
- What would you think of asking your parents to move closer to us? If they should need help as they age, it would be difficult to help from several hours away.
- Should the sick person move in with us? Does she/he need to be in an assisted- living facility or nursing home? How do you feel about these options?
- Who will make the decisions? How will they be made?
- What support role are you willing to play?
- Here are some ways I could use respite. (Help with meals, shopping, cleaning, laundry, medical appointments.)
- In case of a medical emergency, would you know what medicines your parents take routinely? Do you know who your parents' primary care physician is?
- Do you know anything about your parents' finances? If the time comes when they can no longer live independently, can they afford an assisted-living community?
- If one of our parents should have to move in with us, what rules should we set? What do you think the important issues are?
- What family members could we count on for help?
- What things can we do to ensure we stay strong as a couple?
—Martha Evans Sparks & Leah Dobkin
Yours? Mine? Or Our Parents?
A month ago my parents moved into the house across the street from us. Directly across the street. A wave-"hello"-in-the-morning-as-you-pick-up-the-newspaper-from-the-driveway kind of proximity. My dad is suffering from Alzheimer's and my mom is suffering from … caring for my dad. They both need help. When the house across the street became available as a rental, it seemed like one of those just-in-time answers to a prayer.
It still does, even though I anticipate difficult moments. But I anticipate blessings, too. I've learned a great deal in the last few years, since my dad was first diagnosed, about keeping a balance amid this on-going challenge.
Most of the problems with aging parents are precipitated by crises. It's easy to fall out of balance, neglecting ourselves and our families—especially our spouse. Too often it's easier for me to rally to meet the needs of my children than to meet the needs of my mate.
My friend Karin experienced conflicting emotions when her mother fell ill. "I felt consumed with taking care of her and then rushing home to take care of the kids. My kids were dependent on me; my mother was very dependent on me," she admits. "There was little left over to give to my husband." That can be dangerous to a marriage, especially one already under stress. Karin and her husband have since separated.
We love our parents and feel a rightful obligation to them, yet we need to protect our other significant relationships, too. It's not easy to find that balance between honoring Mom and Dad and leaving and cleaving to our spouse. Soon after Karin's marriage hit the rocks, my normally savvy dad was diagnosed with Alzheimer's. This came after some serious financial difficulties, in which he had, unwittingly, become the victim of a Canadian sweepstakes scam. More than one, actually. The loss was so substantial that my parents were forced to sell their home, requiring an "all hands on deck" effort by my siblings and me. It didn't take long to realize that I was stuck in sprint mode—dropping everything, trying to be available to help.
There's an emotional toll with aging parent problems that's difficult to quantify. Often, I feel distracted, worried, preoccupied, and grieving when my husband needs my undivided attention. There have been moments when I've felt I'm being called on to be everything to everybody. And I get consumed with the failures that inevitably result.
Stuck in sprint means living with a steady dose of stress, which can lead to depression or illness. I had to make some changes, for me and for my marriage.
Asking for help
The writer of Ecclesiastes says, "Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up" (4:9-10).
For months, I tried to keep my parents' problems "mine" and not dump them into my husband's lap. Big mistake. It only put a distance between us, instead of allowing it to draw us together. When I finally broke down and told my husband how I was feeling, he responded with compassion, telling me I didn't have to carry the burden alone. Several years prior, Steve's father had experienced an illness-related personality change before he died. Looking back, it was as if God had smoothed the path for us. Steve wanted to share the burden. I just had to let him. So little by little, I asked for help.
With his accounting background, Steve was able to unravel my parents' finances and set up safeguards against con-artists infiltrating their accounts. He created spreadsheets of financial scenarios based on life expectancy so we could make wise decisions for their future. And he listened to me.
We started going for coffee on Saturday mornings before our teenagers woke up. It provided time to talk when we were both fresh and rested. Those Saturday morning coffees are the secret to our strong marriage. We resolve issues and problem-solve. Keeping short accounts keeps us healthy.
When the opportunity arose to rent the house across the street, Steve gave it a wholehearted "thumbs up." The other day he even said, "If your dad is up early, he's welcome to have breakfast with me." How many men would offer to have breakfast on a workday with their father-in-law, much less one suffering from dementia? Amazingly, even after stressful years with my parents (and we have a long haul ahead of us), I feel more in love with my husband. His attitude of viewing my parents' problems as "our parents' problems" has made this situation not only bearable, but blessed.
We realize this burden is only for a season, but carrying it together has made us stronger and made me more aware of what a blessing parents—and my spouse—are.
—Suzanne Woods Fisher
Getting Your Spouse on the Same Page
Feeling frustrated from trying to balance parental caregiving responsibilities with the demands of an unsupportive spouse? You don't have to be, according to Norman Wright, counselor and author of numerous books, including Helping Those Who Hurt. Here are some suggestions he lists to help you through this season.
On an unsupportive spouse.
Write your spouse a letter. Your mate may respond better to what he reads than what he hears. Think it through and make it supportive and caring. Express what you feel your parents' needs are, what you can do, and then spell out how you will still meet your spouse's needs and be available. But don't give that first draft. Wait, pray about it, rewrite it, think it through, and then compose the final draft.
Never use the computer—make sure you write the first draft in longhand. One, it takes more energy. Two, it drains the different feelings from the different parts of the brain and brings them together. It's slower, and you calm down better. Part of the purpose of writing is drainage. Longhand does it; a computer, not so much.
What's your partner's language style? If he's an expander, give a lot of detail. But if he's a condenser, get to the bottom line quickly or he won't get it. Provide enough information to express fully your thoughts, but make sure it's conveyed in your spouse's context of communication.
If that doesn't work.
There may be times when you have to say, "Okay, I'm not going to get any support. I'm going to have to do this by myself. I'll continue to meet my spouse's needs, but I still have to fulfill this other responsibility." It will mean a change of schedule, and maybe making extra meals to freeze and eat for several nights. Communicating what's going on and what you're doing is really the most important thing.
It could be that in a marriage one person has a close relationship with their parents and the other has no relationship. So the one with no relationship might not understand the need to care for parents.
Sometimes you have to allow people not to get it or to be the way they are. You're not going to change them. You wish you could, but it's just not going to happen. Love them, then do what you're called to do.
On dealing with a pouty spouse.
Some spouses will say they're supportive, but all their actions prove they're not. They either withdraw or pout. This could be a form of manipulation. They're not capable of dealing with the fact that you're giving to others. When you notice it happening, say, "I see you're upset. There could be some feelings you're not sharing with me. I'd rather you tell me what you're feeling or what you're thinking than have you withdraw." Confront the behavior.
On neglecting your marriage.
Don't do it—even if you feel frustrated because you aren't receiving the kind of support you want or need. Caregiving is for a season. Marriage is for a lifetime. When Mom or Dad finally passes on, you want to make sure your spouse is still there.
The Senior Organizer by Debby S. Bitticks, Lynn Benson, and Dorothy K. Breininger (Health Communications). All-in-one workbook for a senior's vital information: personal, medical, legal, and financial.
AARP.org. Supplies information about caregiving, long-term care, and aging. Check out their free online seminar, Planning for the Care of Aging Parents at http://www.aarp.org/home-family/caregiving/.
& Thou Shalt Honor. www.andthoushalthonor.org • Developed for the PBS television program of the same name. Contains numerous links to other caregiving sites including disease specific sites.
Caregiver.com. http://www.caregiver.com/ • Online magazine offering a comprehensive list of links as well as articles of general interest for caregivers.
Caregivers-USA. http://caregivers-usa.org • Free, nationwide database of more than 40,000 caregiving and caregiver support services.
Caregiver Online. www.caregiving.com • Information on maintaining caregiver health.
National Alliance for Caregiving. www.caregiving.org
National Assocation for Home Care. www.nahc.org
Caregiver Action Network. www.nfcacares.org
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