The Stress of Caregiving

Three families came this past week to discuss the problems and stress of giving care to a spouse with some degree of dementia. In each case the caregiving spouse, all of whom happened to be wives, talked about and exhibited signs of the toll it was taking on them. They were not getting sleep, were anxious for their spouse and themselves, and felt overwhelmed by the unrelenting demands. They were incredibly devoted to their husband’s care, but reluctantly came to the realization that their own health was suffering, and that if they themselves became sick, that was bad for both spouses. What could they do?

The first thing is understanding that help is needed. If a person has dementia, he or she may become insecure and fearful, and follow the healthy spouse around the house. The healthy spouse is like a security blanket, so the one with dementia is afraid to lose sight of the spouse, much like a very young toddler wants mommy in sight. With failing memory, the needy spouse may ask the same question over and over, and sooner or later, this unrelenting following and questioning can drive the healthy spouse to distraction. Sometimes the dementia may lead to anger and frustration which is taken out on the healthy spouse. All of these women were devoted to their husbands, and reluctantly came to
the conclusion that something had to change.

The change may be a combination of getting care for the one with dementia and getting time away for the healthy spouse. For example, a companion for a half day or at least several hours a week may allow the healthy spouse to meet with friends or just go for a walk or change of scenery. Getting socialization with family and friends is critical to keeping one’s sanity. There are also support groups run by the Alzheimer’s Association and nursing homes and other care facilities. Sharing experiences may give ideas on how to cope, and let someone know that they are not alone in figuring out different options.

Day care can be a big help for both the healthy spouse and the one in decline. In Connecticut, if one qualifies, the Connecticut Home Care Program for Elders could pay for the day care, and the transportation back and forth. We had one spouse whose family convinced her to go to day care by telling her it was a job. She helped fold napkins and set the tables in an assisted living facility. After two weeks she asked where her paycheck was, which gave the family a needed laugh, and it successfully gave her husband the daily break he needed.

Government programs that can help pay for outside help include Veterans Administration Aid and Attendance, and the Connecticut Home Care for Elders Level II, and Medicaid. At the high end for those who qualify, Medicaid could pay up to $5,945 per month for care at home. VA Aid and Attendance, for a married veteran that qualifies could pay up to $2,230 per month. Some sources for information are www.aarp.org, www.alz.org, www.CT.gov/agingservices.org.

Ask friends who have gone through the same difficult decline of a loved one. Or consult with an elder care attorney who knows the programs available and possible sources of payment. The key is not to go it alone to the point where you are so stressed that your own health suffers. Without you, your spouse with dementia may be forced to a nursing home. And don’t let feelings of guilt prevent you from seeking the assistance that is directly needed for the sick spouse, and indirectly benefits both. It can be the difference that keeps you both at home.