Why Caregivers Shouldn’t Expect Stability

Illusion of Stability

We crave stability and predictability. We expect celery always to be green, the car next to us at the intersection to stop when the light turns red, and, when purchasing something for sixty cents, to receive forty cents back from a dollar bill. This type of regularity is hard to find in caregiving.

Stability and Illness

Illnesses requiring caregiving turn stability on its head. Situations tend to be in flux: What was unthinkable yesterday becomes the new “normal” today.

What is considered predictable today may be lost tomorrow. Planning for the future becomes an “iffy” exercise when even our loved one’s physician is hesitant to predict the future.

Changes are not limited to the behaviors of the loved one for whom you are caring. As you react to the changing conditions your behaviors and personality may also change as it did for a wife and husband I counseled.

Expectations and Stability

Her diagnosis was progressive heart failure and her cardiologist was clear that the illness’s progression would be measured in years. The couple had been active throughout their forty years of marriage; skiing together in the winter, fishing in the summer, and traveling year-round to countries on treks. Everything changed with the diagnosis.

During the first year after the diagnosis, the husband’s caregiving requirements were minimal. She was ambulatory, and while they drastically cut back on physical activities, they still did those that didn’t exhaust the woman.

Instead of spending three weeks in Colorado skiing, they spent a leisurely afternoon skiing on the “bunny slopes” of their favorite Sierra ski resort. Walking a Montana stream was no longer possible, but they could fish from a drift boat. While it was the wife who experienced the medical problem, the lifestyles of both were affected.

Personality Changes When Stability Isn't Present

The husband thought he wouldn’t have any problems adjusting to the new lifestyle of being a caregiver. After all, they had spent a lifetime together, experienced more in one year than many couples do during their entire relationship, and they were still in love after living with each other for almost a half-century. He assumed he could accept and adjust to whatever changes occurred in his wife’s condition.

During the first few months of caregiving the problems were minimal, and they adjusted their activities to match the wife’s energy level. Although the lifestyle changes weren’t pleasant for either one, they believed there wouldn’t be many more changes, despite the cardiologist’s warning they should not expect stability in her condition. By the end of the first year, the cardiologist’s warning about stability came to fruition. None of their favorite activities were possible anymore—even watered-down versions.

By the third year, “stability” was no longer an expectation of either the husband or wife. Not only had their activities been radically curtailed, but their personalities were changing. The wife became despondent realizing that her life had been irrevocably altered by the illness. The husband became resentful; unable to adjust to his new lifestyle, despite still loving his wife.

Multi-Faceted Problems of Caregiving

The problems associated with caregiving are multi-faceted.

Not only do caregivers have to adapt to changes in their lifestyle and responsibilities, but also deal with the loss of stability. Little can be done about lifestyle changes, especially with progressive illnesses. However, as a caregiver, you can do something about stability—don’t expect it. If it occurs, you’ll be delighted. And if it doesn’t, you’ll be less disappointed.

While my clients were depressed about no longer having the lifestyle they enjoyed for many years, a lack of stability became a greater problem. The lesson I learned from my clients was: If you expect stability, you’ll be disappointed.

Assume throughout the course of caregiving, the needs of your loved one will continually change, and the changes will affect your responsibilities, and possibly your personality.

Continue Reading