Nurturing where dementia has struck

Nurturing where dementia has struck

How do we, as ministers, help the families of members who struggle with conditions such as dementia?

F. Donald Yost, PhD, is a retired pastor living in Martinez, Georgia, United States.

Pastors are regularly called upon to comfort parishioners who have lost a loved one to death. But other catastrophes—the loss of a job, a son or daughter sent to prison, the loss of everything in a fire, the breakup of a home, or a terminal illness—also require the pastor’s nurturing skills.

In some situations, the person experiencing the catastrophe may not be the one in greatest need of comfort. Consider the anxiety of an unskilled wife whose husband has lost his job, of parents over a jailed son or daughter, or of the loved one of a person just diagnosed with a terminal illness. In some cases, the spouse of the afflicted one suffers the most.

Among the catastrophes our members face is dementia, whose emotional toll on a spouse can equal that of a terminal illness, divorce, or even death. How do we, as ministers, help the families of members who struggle with this unfortunate calamity?

Dementia

The onset of dementia can involve more work than one faces with other terminal illnesses, because, in this case, both body and mind are in an irreversible decline. The patient may not know what has struck, but the spouse certainly does. Little by little, the dementia steals from both the sufferer and the spouse. As the comfortable patterns of daily life change, the little pleasures and expectations disappear. The spouse’s personal time shrinks. Friendships wither. Time for recreation, study, prayer, household duties, and relaxation are usurped by the needs of the sick one.

Christian ministers may have developed some skill in comforting the family when death strikes. They may have read about how to conduct hospital visitations. But do they know how to minister to a spouse for whom dementia has become a new and very unwelcome resident in the home?

Death, as horrible as it is, comes and goes. After a death, a pastor makes himself or herself available for comfort and prayer and for handling the funeral service. He or she inquires about future family needs. Following the funeral, he or she returns to duties for the congregation and may not minister to the family further except for a hug or warm handshake in the church. The funeral service has become history. Life goes on. The pastor may feel that the need for nurturing has ended.

A major similarity exists between a spouse’s distress at the death of a companion and a spouse’s sense of dislocation at the transfer of a dementia sufferer to a care facility. For both, the grief did not begin on the day of parting. Except in the case of a sudden death, grief began weeks or months earlier. Nor does grief end with closing the casket or the transfer of a dementia sufferer to a care facility. It may linger, dangerously, for weeks or months. Depression threatens. Grief-recovery training provides excellent resources for ministering to a dementia-sufferer’s spouse who is suddenly “single,” just as it does for guiding in the emotional healing of a widow or widower.

A personal experience

I know whereof I speak. My wife developed dementia at 80 years of age. Though living near our daughter, we were independent in caring for ourselves. As the dementia increased, I assumed the household duties. There followed five years of increasingly heavy caregiving until our daughter insisted that my wife be moved to a care facility. I had not found it onerous to care for her, but the constancy of her growing needs had begun to dictate my entire daily schedule. Although it was a difficult decision, we agreed that this was the right time to make the change. Not many hours had passed after the move when I realized that I had now entered a bittersweet existence. It was certainly a relief to be able to come and go as I pleased, and I greatly enjoyed having time alone, yet I ached as I walked through our house and realized that she would never see things like her beautifully designed kitchen again.

There is a significant difference between a separation or divorce and the creeping intrusion of dementia. Following a marital breakup, each former partner begins to build a new life. Time heals. But when dementia has struck and the ill spouse is separated permanently from the companion of a lifetime, the spouse’s need for emotional support may be just beginning.

Crueler than death

A pastor is attentive to the physical needs of a congregant who has been in an automobile accident or house fire. He or she calls upon the church to supply a substitute car or to find furniture and clothing to replace what was lost in the fire. He or she also visits the family to provide a time for burden sharing and prayer. But the emotional impact of these events can pale before the uninterrupted stress that accompanies caring for a dementia-stricken spouse, and then the emotions that sweep in when he or she is moved to a care facility.

Dementia cannot be evaluated as a kind of death. Dementia does not just come and go, although dementia certainly remains a close cousin to death. Dementia can be described as a death of life past, the death of joys present, and the death of future hopes. With a fatal disease, the body wastes; with dementia, the final days begin long before they finally come. How can a pastor minister to the differing emotional needs of the spouse, son, daughter, sister, or brother? The task can be daunting because each of these family members brings to the experience of dementia huge differences in attitudes about the disease, in belief about the character of God, and in personal traits and skills in handling disaster.

Family matters

Our son and daughter are experiencing this loss of their mother in a different way than I have. If I am not careful, I project on to them what I feel. But they are her children, not her spouse, and so their grief suggests a difference from mine.

Now that my wife is settled in her new place, I love to go visit her and continue to care for her in small ways, like taking care of her fingernails. I love to sit beside her on the bed and hug her and plant little kisses on her ear and cheek. Sometimes when I say, “I love you,” she will respond, “I love you too,” even though she may be hazy about who I am. But our children, with their own grown children, should feel free to remember her as she was. I have made it clear that they do not need to visit her if she does not ask for or need them. Great variations exist from family to family in the responses of relatives to dementia and other such life catastrophes.

The need for comfort and reassurance by the spouse of someone afflicted with dementia can vary a great deal depending on his or her philosophy of life and death, connection with the will of God, and tools for handling personal storms. A need for comfort also depends upon the nature of the marriage relationship that is now being slowly dissolved. A Christian counselor could be of great value at this time.

Conclusion

I am a minister. I just wanted to talk, not only once but several times over the two or three months following the separation. Perhaps I did not grieve as such, but I wanted to share the confusion of emotions that I felt at my wife’s fading away from me into a dark tunnel. How I wanted to get my hands on Satan. How I fled to my Friend Jesus for comfort and embraced Him in gratitude for His victory over our enemy. I understood well that God does not remove the loss or emptiness that comes with dementia, but He stabilized me with the comfort of knowing that He is a very present help in time of trouble.

Of course, not every suffering dementia spouse understands. If a spouse does not understand the theology of suffering, a catastrophe such as dementia—with its aches, disappointment, grief, and, perhaps, guilt—might not sow seeds of growth in Christ but, rather, sow doubt and disbelief. Thus, the pastor’s skill in supporting and nurturing the spouse may make an eternal difference.

As the conflict between Christ and Satan intensifies, the occurrence of life-warping catastrophes and critical incidents will increase. Each one provides an opportunity for the pastor to develop nurturing ministries that will demonstrate the Comforter’s soothing strength for a tormented heart.

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F. Donald Yost, PhD, is a retired pastor living in Martinez, Georgia, United States.

January 2013

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