From Dr. Jane's Notebook

Going home: Living with a loved one's dementia

Memories and the ability to remember have been described as both a blessing and a curse. While it is nothing short of a miracle to look back and remember things that occurred decades ago, it is a miracle that we have come to expect. And while slight forgetfulness has long been the subject of jokes, memory loss or memory impairment may be an early symptom of dementia, which is no laughing matter. For several years now, my Mother has been waging the battle against the progressive cognitive decline associated with dementia, and those of us who love and care for her have become the foot soldiers in this battle. Here are a few things we have learned along the way.

Dementia happens. Lots of things happen to us as we age. We are fortunate whenever medical problems can be solved but sometimes they can’t be solved. As our bodies begin to age, we must adapt and take care of ourselves in every way possible. That’s good advice for folks who have their cognitive and mental faculties, but dementia steals our ability to remember, to learn new things, to think clearly and to take care of ourselves. Over time, friends and loved ones with dementia progressively lose their ability to express themselves and perform tasks that were easy in the past. Here is where life becomes complex!
Dementia causes time to move backwards. While the physical body continues to age in a forward direction, the emotional development of individuals with dementia grows younger or backwards over time. Healthy adults generally have a healthy memory and are only occasionally forgetful, but dementia creates more consistent forgetfulness. Eventually, the loss of memory begins to interfere with everyday activities, it is difficult to learn new things, and easiest to access memories from younger years. Understanding this change in direction helps family members keep their expectations low and their patience high. Expecting your loved one to function as before would be like asking a child to drive a car. It’s probably not going to end well.
Sensitivity increases as abilities decrease. Individuals with dementia are frustrated by their loss of ground and so, they become embarrassed easily. Mild dementia is especially painful when its sufferer sees disappointment or pity in the eyes of others. Well-intentioned caregivers often correct and criticize their loved ones in the effort to maintain a pretense of normality. But feelings of shame will more likely lead to withdrawal, increased silence and fear of rejection. Like small children, people with growing dementia are extremely sensitive to correction, raised voices, and mockery. Caregivers must guard against becoming emotionally abusive. Beyond bruises, it is wise to notice symptoms of depression, despair, flinching or avoidance if your loved one is being cared for by others.
In sickness and in health, marriage matters. The decision to care for your loved one at home is most easily accomplished when their spouse is healthy enough to step up to the plate and take care of their mate as they do themselves. When my Mother was no longer able to cook or even set the table, my Father learned to cook and now prepares three meals a day. Morning, noon and night, they convene at the kitchen table and enjoy a meal together. The table is always set, there is music in the background, and if they run out of things to talk about, there is usually a book nearby with short stories which my Dad reads aloud to my Mother. As suggested by the bumper-sticker from the 1960s, they have learned to save water by showering with a friend, and find that it is easier to keep up with personal care if they take showers, get dressed, brush their teeth and even go for haircuts at the same time.
Bring professional help on board. Just as we have studied and prepared for other changing phases of our lives, the final quarter of life offers its own unique challenges. Even the most loving of spouses cannot do it all. For sanity’s sake, it is essential to hire a professional caregiver who can help with all types of family and household care. Healthy spouses need time to take care of themselves, which includes work, exercise, and recreation. Your professional assistant should help maintain your regular schedule for meals, rest, and personal care so that the individual with dementia remains oriented to time and expected activities. The right helper will be respectful of your family routine, kind, courteous, calm and consistent. The right helper will also be devoted to the care of all family members, including the family pets.

During my monthly visits home, not only do I get to spend precious time with my parents, but I also learn a great deal about how they handle problems and how they maintain intimacy in their changing relationship. One night during a recent visit, I excused myself from the dinner table to retrieve something from the next room. Just out of their sight, I overheard my parents talking. Just as he has always done, my Father was telling my Mother how beautiful she looked this evening. Caring for loved ones at home is both a skill and an art.

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