Linda thought she was prepared to care for her husband, an active pastor in his 40s, who had been paralyzed by an accident decades earlier. After all, she had known Chuck most of her life and had married him realizing his health would be a concern for the rest of his life. But can anyone really be prepared to give his or her whole life as a gift to another? At various times during their 27-year marriage, the strain took a toll on Linda, physically, emotionally and spiritually. And, like many caregivers, she sometimes felt guilty or anxious about taking time for herself.
If that sounds anything like you, rest assured God can help you find ways of loving your disabled spouse, not just for today, but for the years ahead. No one can do that when frazzled, exhausted and frustrated. Loving for the long haul requires taking care of yourself even as you care for your spouse.
Empower your spouse
As a caregiver, you probably are hyperalert to the things your spouse needs, and sometimes that can be overwhelming. At first Linda helped her husband with everything from brushing his teeth to opening the front door. But she realized that wouldn’t work over time. So instead of trying to do it all for him, she worked with Chuck to give him greater independence. In the end, they both benefitted from this approach.
You may think your spouse’s greatest need is to be served, but sometimes, what your husband or wife needs most is to be empowered. You can make choices together to enable your spouse. A good question to start with is “What activities are most important to you?” For Chuck, it was his ability to get out of the house and talk with people, so they moved within scooter distance of his favorite coffee shop. Chuck and Linda were also quick to integrate a trained assistance dog into their family. Another disabled friend wanted to maintain his employment as long as possible and to attend his kids’ school events. His wife was able to help him do that by taking on new tasks like paying the bills, but that meant she needed to curtail her own outside responsibilities, which is a wise choice for caregivers in general.
Linda always affirmed Chuck as her provider, counselor and spiritual companion. This, too, is a way of empowering your spouse, and it reminds both of you that marriage continues to be a partnership, even as your roles change. Encouraging your spouse in his or her successes and asking good questions about his or her struggles may bring more areas of empowerment to light.
Embrace your community
People around you generally have no idea what you actually need as a caregiver, but they do want to help. Perhaps you and your spouse could put together a list of tasks (from one-hour errands to all-day blessings) you can keep on hand for those awkward moments when someone says, “Let me know if there’s anything I can do.” Be sure your phone number is on the list, and you might ask for their number, too. Examples of helpful tasks include cleaning a bathroom, mowing the lawn, bringing dinner, shopping for groceries or taking your spouse or your kids to an appointment or a movie. One woman asked a few close friends to spend an entire day with her while she was convalescing from surgery so her husband could go back to work, and she was surprised to find people were eager to volunteer. And while your community helpers are helping, you’ll have pockets of time to refresh yourself with a stroll through the neighborhood, a quick nap or two chapters of a good book.
Your community can also help with emotional needs. Chuck took it upon himself to connect with a prayer partner and study buddy, but if your spouse has no one like that in his or her life, the two of you might pray about adding that to the list or specifically targeting a couple of mature friends. It’s important for both of you to stay connected to God, and one of the best ways to do that is to find mutual encouragement in a spiritual friendship. If you don’t know where to start, find out if there is a Stephen Ministry active in your area.
Your community also includes professional resources such as visiting nurses, mental health therapists, financial counselors, palliative care providers, support groups and paid caregivers. In regard to your professional helpers, Linda cautions, “Micromanaging is a newbie mistake. If you are blessed enough to have help, let the help do it. Some things you just have to release.”
Express your heart
It’s not always possible for you or your spouse to tackle life with a cheerful attitude, so talking about the strains both of you are experiencing is important. Linda notes, “Part of being at home and feeling safe there is letting emotions go that you hold back in public. So many times, Chuck just needed to release his pent-up emotions. I didn’t need to solve his problem; he just needed to be heard.” And sometimes Linda needed to be heard, as well. They tried not to let more than a day go by before addressing problems between them.
Sometimes caregivers need a place to honestly express the hard emotions they do not want to hand over to their disabled spouse. With the consent of your spouse, you’ll benefit from just a few good friends who support your marriage and your caregiving role with prayer, tears and laughter. Linda was instrumental in forming a support group for caregivers at her church. Being provided with information about relevant topics at the meetings was nice, but she soon realized her greatest need was fellowship with others who understood her situation.
Expressing your heart to God through journaling and prayer is even more crucial than talking with friends and family. It’s easy for anyone with a busy life to put their relationship with God on the back burner, but without His bigger perspective and loving attention, you won’t have the resources to keep pouring out.
This new journey
Conventional wisdom would say that caregivers suffer physically and emotionally from the stress of their responsibilities, but according to a surprising study by Johns Hopkins Medicine, the emotional and physical health of family caregivers can actually exceed that of noncaregivers. Empowering your spouse, embracing your community and expressing your heart can make the difference between burnout and abundance as you take on the ministry of caring for your loved one.
Caregiving is a journey, and, no matter where you find yourself right now, there will be new joys and new frustrations just around the next bend. But you won’t be tackling them alone. God has many ways to provide you with the support you need: through your spouse, your community and the constant, guiding presence of the Holy Spirit. As you seek to love your disabled spouse for the long haul, remember that God has committed himself to loving you both for the long haul, too.
Louise Holzhauer is a licensed mental health counselor and a licensed marriage and family therapist. She lives in the Orlando, Florida, area.
A variety of marital issues can lead to challenges or even hopelessness for one or both spouses in a marriage. Gaining a sense of hope and direction often requires understanding the underlying issues and relationship patterns that may have led to the crisis. Reach out to well-trained helpers even if you are the only person in the marriage willing to take action at this time. We can guide you as you seek a referral and take your first steps toward recovery. You can contact us Monday through Friday from 6 a.m. to 8 p.m. (Mountain time) at: 855-771-HELP (4357) or