Support for Spousal Caregivers

By Becky Otterness

People enter the well spouse experience in a variety of ways. Caregiving may last from weeks to decades. Both men and women are called to be the well spouse, to care for their partner. Every well spouse has asked at some time, How long must I do this? How long can I do this? 

 

Well spouses are at the forefront of the caregiving revolution, as more and more people need care. Depression, especially in the form of caregiver stress, or more accurately, caregiver distress, is high among caregivers. 

One view of depression addresses anger and grief. Well spouses can be angry that ordinary hopes and dreams for the future will be unfulfilled, that responsibilities are overwhelming, that society does not value either the person cared for or the efforts put forth in caring. Living with chronic anger depletes energy that could be used better for other things. Caregivers experience the on-going grief of watching their loved one deteriorate. Chronic sadness is a heavy weight to carry.

Another view of depression is a pile-up of demands or stressors. Instead of having the spouse as a partner, helping with tasks and decision making, caregivers find themselves running the whole household, serving as breadwinner, while being responsible for care 24 hours a day. The demands can be overwhelming. If life were as simple as a balance scale, the pile-up of demands or the chronic grief would be the weights on one side. Resiliency factors belong on the other side of the scale, restoring balance to life. Resiliency is a bounce-back concept. Padding under carpet bounces back after being walked on. But a dent develops when the weight is heavy and in place for a long time. By focusing on resiliency, one's thought pattern changes  from "I am sad or angry because..." to "I can cope because..."

Major themes include understanding what is happening, finding meaning and purpose within the situation, being able to manage the daily tasks required, and being part of a social and spiritual support network. 

Here are twelve resiliency factors for well spouses. Many more exist. After reading this list, I encourage you to identify your own. What in your own life makes it possible for you to be a resilient well spouse? 

1. SELF CARE
Everyone functions best when physically, mentally, emotionally, and spiritually healthy. These are so basic; it's easy to forget their necessity. However, their absence is symptomatic of increased stress and decreased coping.

Getting enough sleep makes a difference. Eating a well balanced diet provides energy.

Exercise. Regular exercise maintains strength and releases natural endorphins in the brain. Endorphins help maintain a positive mood. Exercise diminishes damage from stress chemicals.

Nurture your spirit.

2. DRAW ON SPIRITUAL RESOURCES
A relationship with One who is Greater than you, from whom you can draw strength, is one of the greatest resiliency builders of all. It angers many to hear, "God won't give you more than you can handle." A common response is a variation on the theme, "I wish God didn't think I could handle so much, because I can't and I don't want to." Each of the world religions has a perspective on suffering.

Easter: God™s answer to Jesus™ crucifixion is resurrection. Sometimes it is hard to trust, because we focus on crucifixion events in our lives. Easter is the promise that it really will all work out. Easter says we really can trust God.

Passover: There was eventual freedom from slavery. God acted. God listened to the laments of God"s people and called people to do the work, to be leaders.

Prayer: Prayer requires open, honest communication with God. Be aware that sometimes God answers prayer with a surprise. Look for surprises! Lament is one category of prayer. Although laments sometimes feel like whining, they give biblical validation for strong emotions. Psalms of lament end with hope for the present and future.

3. GRIEVE
Acknowledge losses. As you learn about grief, you will meet yourself in many places. Learn what behaviors and thought patterns are common among grieving people, and how people cope. Know that the goal of grieving is not to fix it, but to be able to live constructively with it. Grief that is denied comes out sideways as bitterness and anger. Grieve your spouse's losses, too, because you share them. Think about him (her): He(she) has lost family, friends, a career, as well as health. Remember that you are making a difference in the life of another. Focus on what you have control over. Without you, the losses would be even greater. While you are grieving, try also to be thankful for what you do have and are able to do. "I complained that I had no shoes until I met a man with no legs." Anon

 4. LAUGH

A sense of humor will protect you from taking yourself too seriously.

 

 5. GATHER INFORMATION
Learn as much as possible about the condition or disease you are dealing with. Learn time management and flexibility. Seek out health professionals who will not only be your allies, but will consider you a part of the caring team. Learn about services available, including overnight respite. Use them wisely. 

6. SEEK SOCIAL SUPPORT
More often than not, caregivers need to initiate the social contact. Place yourself among friends who honor you, support you, and uplift you. Many people are willing to help if they know what you need. Adequate social and spiritual support are factors on every list that describes how to do well. A faith community (congregation) can provide both social and spiritual support.

 7. SET REALISTIC GOALS
We can get discouraged and overwhelmed when we think about chronic caregiving. It doesn't work to take one day at a time. Most of us can do almost anything for just one day. Well spouses need energy for the next day. Plans need to be made for potential deterioration. Two years is an optional time to review long term goals. (You know how hard it is to "hold it" when you are traveling and looking for the next rest stop? The closer the rest stop, the harder it gets, so move the œrest stop out a ways.) 

8. HOPE
Hoping for relief from caregiving leaves two options if that hope is fulfilled: he dies, or he gets so much worse that I can't care for him. Either of those options essentially left me hoping for grief. There are other sources of hope, such as hoping to reach realistic goals. Hoping to continue to feel more positive, more resilient. What from your own spiritual tradition helps you deal with suffering, offers you hope?

 9. CELEBRATE
Continue to celebrate life. Acknowledge milestones along the way: wedding anniversaries, birthdays, etc. Participating in family gatherings is usually worth the effort. 

10. DIVERSIONS
Work, career, hobbies, and community and church activities can all provide a change of pace, validation, and additional social support.

 11. MENTAL HEALTH SUPPORT
Seek the services of a mental health counselor. If you don't know someone with similar values whom you can trust, ask your pastor, rabbi, priest, or doctor. Insurance might pay for some therapy.

12. KEEP A JOURNAL
There are no secret rules for your journal. The important thing is to express honest thoughts and feelings. When thoughts are put into words, they can be dealt with. They can even be symbolically burned or thrown away.

Resiliency literature does not deny adversity, but identifies assets that maintain or restore balance, even joy, to life. Spend a few minutes pondering your own resiliency factors. Write them down. What in your life makes it possible for you to continue caring faithfully for your spouse? Keep the list, so you can refer to it when you are feeling empty.

We can be proud of all we do!

Copyright, Well Spouse® Association.  More articles by this author and others are available to registered supporting members.

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