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Often described as a prototypical text for caregivers of the chronically ill, ‘’The 36-Hour Day’’ is written for those dedicated to taking care of their loved ones with dementia. It is packed with a wide range of practical advice on the newest information about a diagnostic evaluation and professionals who can help your loved one, how to manage common behavioral symptoms such as wandering, how to take care of yourself and handle feelings of sadness and anger, stories and confessions of individuals who were caregivers and many more. Ultimately, this valuable guide will help you find ways to affirm the dignity of life in every human being - be they young, old, sick, or well. So, get ready to find out how to make caregiving less challenging and more fulfilling.
Mary had known for two or three years that her memory was slipping - she started forgetting details like the names of her friends’ children or strawberry preserves she had put up. Luckily, she could compensate for her slips by writing things down. She did worry she was getting senile but comforted herself that forgetting is an inevitable part of getting old. However, over time things started getting worse. When talking with a group of friends, Mary did not just lose track of some information now and then, but the thread of the conversation altogether. Deep inside, she felt scared and confused. She did not want anyone to notice her memory was impaired, and, more than anything, she did not want to be treated as demented.
One winter, Mary got hospitalized for pneumonia. She had a high fever and was semi-conscious, having an intermittent, foggy notion of what was happening. Various people poked and pushed her, shoved things in and out and over her. They told her where she was, but she kept forgetting. The acute illness caused delirium, which further increased her confusion. One day she even saw her husband, who had been dead for twenty years.
Mary stopped imagining things as soon as the fever and infection had passed. Nevertheless, the confusion and forgetfulness were present much more than before, so Mary’s family realized she could no longer manage alone. One day her son took her to his house and told her that was her new home. But, how could this be her home when she had no independence and her things were gone? She felt an enormous sense of loss and anger because her life seemed to be gone. Her son explained over and over why she had to live with them, but Mary could not always remember his words.
After some time, Mary’s family put her in a nursing home since they could not take care of her by themselves anymore. Although scared at first, she eventually got used to her new room. After all, the toilet was nearby, so she did not have to remember where it was. The small space made her feel secure. Even if she could not always remember their names, Mary was happy when her family visited. Of course, she did not like to be corrected or reminded of her forgetfulness - she only wanted to feel their love. Therefore, she enjoyed the best when they would hold her hand, hug her and sing old songs with her.
Before we deal with the usual symptoms of dementia and the challenges caregivers face, let’s first clarify what dementia is. You have probably heard or used various terms to name the symptoms of forgetfulness and the loss of ability to think clearly - dementia, Alzheimer’s, chronic brain syndrome, organic brain syndrome, and so on. Medical professionals use the term dementia to describe a group of illnesses - so, dementia ‘’is not the name of a disease or diseases that cause the symptoms,’’ the authors note.
Many diseases cause symptoms of dementia. Thyroid disease, for instance, may cause dementia that is treatable with a correction of thyroid abnormality. Other diseases, like Alzeheimer, cause irreversible dementia in adults. Next to it, the most common cause of dementia is a disease called vascular dementia. Sometimes these two occur together. The brain of people with Alzeheimer experiences structural and chemical changes and, at the moment, this condition is incurable. Vascular dementia results from a series of usually tiny strokes in the brain that all together destroy the brain tissue. In some cases, treatment can prevent further damage.
As we have seen in Mary’s case, symptoms of dementia appear gradually, and the person who suffers from it is often the first to notice changes. Even when they are good at hiding that their memory is failing, you can realize something is wrong if a person is ‘’not himself or herself’’, that is, if their ability to understand, reason and use good judgment is impaired.
With the progression of dementia, other brain functions, apart from memory, become affected. Therefore, the person with dementia may have difficulty with motor functions such as coordination, walking or writing. Some people change drastically, from cheerful and energetic to becoming passive and apathetic. Hallucinations, increased suspiciousness of others, extreme irritability and depression can also be symptoms of dementia. However, the person you care for may never experience some of these symptoms or may experience others not mentioned here. The development of the disease is not the same in each individual. What you should also remember is that these changes are beyond their control - they are simply the result of the damage this condition causes to the brain.
We have seen how Mary comforted herself that memory slips are an inevitable result of aging. The important thing to note is that slight forgetfulness becomes common as we age. However, as the authors emphasize, ‘’severe memory loss is never a normal part of growing older.’’ According to relevant studies, only 7% to 8% of older people have a severe intellectual impairment, while a similar percentage have milder impairments. So, if you notice a person close to you is showing signs of memory loss, whether occasional or frequent, the first thing you need to do is get an accurate diagnosis of their condition.
The person with suspected dementia has to go through a thorough evaluation that will determine the exact nature of the illness, the areas in which they can function without difficulty, the changes they may expect in the future, and many more. The evaluation begins with taking a detailed history of the changes, symptoms, and other medical conditions taken from a caregiver or the impaired people themselves. Then, there are physical and neurological examinations that may reveal other health problems or changes in the functioning of the nerve cells of the brain or spine.
Asking the person about the current time, date, and place is part of the mental status examination. Questions that test the ability to remember, concentrate, do abstract thinking and simple calculations are also included in it. Laboratory tests may reveal vitamin B12 deficiency, thyroid, and other problems that sometimes cause dementia. The doctor will also order CT scans, MRI scans, PET scans, and SPECT scans to identify changes in the brain that may indicate strokes, Alzheimer's disease, and many other conditions that lead to dementia. One of the main goals of psychiatric evaluation is to determine whether the patient suffers from depression since it can cause symptoms similar to dementia and may as well deter it. Psychosocial evaluation helps family members evaluate their own emotional, physical, and financial resources, the home where the person lives, the available community resources, and so on.
The results of occupational therapy evaluation show how much the person can function independently and how they can compensate for their limitations. Finally, neuropsychological testing reveals the areas of mental function in which the person is impaired and in which they are still independent.
‘‘I asked my sister to make us both a cup of tea, but she ignored me,’’ reports a woman who cared for her demented sister. ‘’Then half an hour later, she went to the kitchen and made herself a cup of tea.’’ People with dementia often say or do things you may find odd or inexplicable, and in most cases, this is because some part of their brain failed to do its job.
In dementia, structural and chemical changes in the brain affect many aspects of mental function and gradually do more and more damage to it. For this reason, there is uneven impairment to cognitive capacities, and the person will be able to do some things but not others. For instance, they may be able to remember things from long ago but not from today or yesterday. Or perhaps they may get mad at you, but without knowing why. The latter is most likely because the part of the brain that stores and processes memories of emotions is not as damaged as the one that processes and stores memories of fact.
When you perform a simple operation, such as hearing what the person said and acting on it, your brain carries out many tasks. If dementia disrupts the brain from performing even one step, it will fail somewhere in the process. Let’s remind ourselves of the woman who made tea only for herself. She obviously heard her sister, however, her brain scrambled the message, so she acted on what her mind processed and could not do exactly what she was asked to do.
Being informed about the nature of dementing illness will make you more prepared for tackling the challenges, such as the odd or annoying behavior of the person you care for. The authors advise you to regard these problems as ‘’the brain damage at work, not as something you did or something the confused person intended.’’ And remember, the person you care for is often miserable, and they are doing their best. Therefore, be affectionate, calm, and supportive even when things make no sense.
How does taking care of a person with a dementing illness affect you? Do you feel depressed, discouraged, and alone? Perhaps you are often overwhelmed with anger, guilt, or hopelessness. It is common for people who take care of a person with dementia to experience various feelings. Some of them are intense - others are not. You might also occasionally have mixed feelings - of love and dislike for the person, for instance. Or, you might be torn between the wish to put them in a nursing home or to keep them with you.
Apart from caring for the demented family member, being a caregiver also means finding ways to look out for yourself so that your emotional and physical resources don’t dry out. When emotions appear, the authors advise to examine how and why you feel a certain way because ‘’unrecognized or unacknowledged feelings can influence the decisions a person makes in ways that he does not understand or recognize,’’ they note.
If one of the feelings you often cope with is anger, be aware that it is understandable you feel that way. Caregivers are often angry for various reasons - that their loved ones need to suffer from the illness or they need to be caregivers. They are mad that they have most of the responsibility for the care or that a person with dementia behaves in some way. Naturally, expressing anger at them won’t help. What may help is knowing about the relationship between brain damage and their irritating behavior and what you can expect of them.
Caregivers often dedicate, as the title of this book metaphorically suggests, 36 hours a day to their responsibility. Therefore, you need time to rest and make yourself feel better. This means spending time with your friends, giving yourself a present, taking up counseling, joining support groups, and even taking some time away from the person with dementia. As the authors say, ‘’When you are rested and feel better, the person may manage better and feel better too.’’
We recommend ‘’The 36-Hour Day’’ as a valuable resource for families living with dementia. The book offers almost everything a caregiver needs - practical advice from experienced experts, stories of other caregivers they can relate to, as well as encouragement, compassion, and comfort. Although these cannot reverse the illness, they unquestionably help caregivers endure the challenges on the road and make their lives, and the lives of those they care for, more convenient and less stressful.
If you haven’t already, watch the award-winning movie ‘’The Father’’ starring Anthony Hopkins and Olivia Colman. It portrays the struggles of a demented Anthony, who tries to make sense of his distorted reality and the challenges his loved ones and caregivers face.
Nancy L. Mace, now retired, was a consultant to and a member of the board of directors of the Alzheimer Association and an assistant in psychiatry as coordinator of the T. Rowe... (Read more)
Peter V. Rabins, is the Richman Family Professor of Alzheimer Disease and Related Disorders in the Department of Psychiatry and Behavioral Science of the Johns Hopkins University School of Medicine. He has joint appointments at the Bloomberg School of Public Health in the Departments of Mental... (Read more)
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