By Fr. John Shimchick
“Do not cast me off in time of old age; Do not forsake me when my strength fails.”
Probably all of as have known or at least read about people who suffer from Alzheimer’s Disease or other forms of dementia. Perhaps we have watched loved ones gradually lose their abilities to talk and reason coherently and to function in normal ways. We may have known or seen families struggle to care for those who, while being physically present, appear to become more and more strangers to themselves and to others.
In this article, the symptoms and complications due to a diagnosis of Alzheimer’s Disease will be offered with a discussion on the practical concerns for family and caregivers. In the last section, the possibilities of support which the church community can provide will be presented in the context of remembrance, the hope inherent within the Christian faith.
What Is It?
Alzheimer’s Disease (pronounced Alz-hi-merz) is progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. It affects an estimated 4 million American adults.
When it was first described by German physician Alois Alzheimer in 1907, Alzheimer’s Disease was considered a rare disorder. Today it is recognized as the most common cause of dementia.
Dementia is not a disease but a group of symptoms that characterize certain diseases and conditions. In the case of Alzheimer’s disease, the dementia includes a decline in intellectual functioning that is severe enough to interfere with the ability to perform routine activities.
The second most common form of dementia is multi-infarct dementia, which is caused by vascular disease and strokes. Other causes of dementia are Huntington’s disease, Parkinson’s disease, Pick’s disease and Creuzfeldt-Jakob disease.
There are also a number of conditions that cause dementia-like symptoms: depression, drug reactions, thyroid disorders, nutritional deficiencies, brain tumors, head injuries, alcoholism, infections (meningitis, syphilis, AIDS), and hydrocephalus.
Alzheimer’s Disease is distinguished from other forms of dementia by characteristic changes in the brain that are visible only upon microscopic examination. It is more likely to occur as a person gets older. Approximately 10% of people over age 65 are affected by Alzheimer’s Disease. This percentage rises to 47.2% of those age 85 or older. It can occur in middle age as well. The youngest documented case is that of a 28-year old individual.
Alzheimer’s Disease also affects the family of an Alzheimer patient. The emotional, social, and financial costs of caring for an Alzheimer patient are high. Family members also often risk their own health in order to care for the patient at home.
Alzheimer’s Disease has a gradual onset. Symptoms include difficulty with memory and loss of intellectual abilities severe enough to interfere with routine work or social activities. How quickly these changes occur in an Alzheimer patient will vary from person to person. Eventually, the disease leaves its victims totally unable to care for themselves. The course of the disease averages eight years from the time symptoms first appear, although it has been known to last as long as 25 years.
At this time, there is no single diagnostic test for Alzheimer’s Disease. A complete physical, psychiatric, and neurological evaluation by a physician or an interdisciplinary team often found within gerontology departments of hospitals should be obtained when symptoms are noticed.
The examination should include a detailed medical history, mental status test, neuropsychological testing, blood work, urinalysis, computerized tomography (CT scan); a chest x-ray, electroencephalogram (EEG) and electrocardiogram (EKG) may also be taken. Such an evaluation is essential to determine whether the dementia is a result of a treatable disease.
When this kind of detailed examination is done, the accuracy of diagnosis is about 90 percent. However, the only way to confirm a diagnosis of Alzheimer’s Disease is to examine brain tissue under a microscope.
What Will Change?
A diagnosis of Alzheimer’s Disease will bring about many changes—changes that a person might find hard to think about. But knowing what to expect will provide opportunities to plan.
A person can expect to find increasing problems thinking and remembering, reading and writing, learning new information and making decisions. Eventually there will be trouble doing familiar tasks like driving, managing money, or discussing current events. Later on, one may have difficulty in dressing or bathing. These changes in one’s ability will also mean changes in lifestyle and in relationships with others.
Most likely, there will be a need to rely more and more on family, friends, and professionals for help. In time, one will need to entrust responsibilities to them, such as managing a checkbook, preparing meals, keeping house. An independent person or one who is accustomed to taking care of others may find it hard to accept this new, more dependent role. Understandably, one may feel frustrated, angry, or depressed at times.
Although a person may feel perfectly capable, it is important to recognize one’s limitations. Here are several practical matters that should be addressed. Taking care of these things now will help ensure that they are carried out according to one’s wishes in the future.
If a person is still working it will be necessary to prepare oneself, both mentally and financially, for retirement. If a business is owned, decisions should be made as to what will become of it when it can no longer be handled personally. One should not hesitate in getting whatever help is needed, whether through a lawyer, a financial advisor, or members of the family.
Money And Legal Matters
Make sure that all important documents—will, insurance policies, mortgae and other financial papers—are in order. Put them in one place, and be sure that someone (a family member, a lawyer, or a trusted friend) knows what and where they are.
Take the time now to designate someone to help manage affairs and make important decisions when this can no longer be done. The advice of an experienced lawyer may be needed to make sure that everything is done according to one’s wishes. A lawyer can also give advice about steps to make sure that one can get the needed health care services and that financial plans are provided.
One should keep in mind that not all lawyers have experience with these kinds of situations and requests. The local Alzheimer’s Association Chapter, the American Bar Association or National Academy of Elder Law Attorneys may be able to provide information on selecting a legal specialist.
Make plans with family or friends for adjustments that will eventually take place. This may include discussing where or with whom one would want to live when additional care is necessary. A counselor, social worker, or lawyer may be helpful.
It’s important that one not only choose someone to make important decisions about medical care, but that these wishes be made known in writing. Is there a desire or willingness to participate in medical research? Should the doctor provide extraordinary life-saving measures if a personal decision cannot be made at the time? Have Advance Directives been prepared and responsible people been designated to make the end of life decisions that one would prefer?
The decision to provide home care for a dementia patient often may not seem like a choice. For instance, the cost of community based long-term care may be too expensive to consider. On the other hand, home care is only possible if the caregiver has the practical and emotional assistance of others as well as sufficient financial resources.
Before deciding on a care plan, you might consider the following:
1. Will you have to give up a job or reduce your work hours to care for the patient at home?
2. How much will it cost to use a day care program, paid companion, visiting nurse, or other outside help?
3. Will insurance cover medical expenses, nurses aides, or paid companions?
4. How do home care costs compare with nursing home costs?
5. Are you eligible for financial assistance if you choose nursing care placement?
Most families need professional advice regarding the care needs of the patient. This assistance can be provided by Geriatric Assessment Programs, or qualified Case Mangers.
Some Other Considers Are Outlined Below:
1. Dementia patients may develop the habit of wandering. Can you prepare your home so the patient can wander safely?
2. Caregivers should consider enrolling their loved one or friend in the Alzheimer’s Association Safe Return Program. This service provides an identity bracelet or necklace, clothing labels and wallet cards to identify the memory-impaired person. The individual is registered in a national database and a 24-hour toll-free 800 number is available when someone is lost or found. For more information call (800) 272-3900.
3. If the services of a paid companion or a visiting nurse are needed, do you have enough space for an additional person?
4. Eventually, the patient will require assistance with bathing and toileting. Are you physically capable of helping the patient?
Everybody has limitations. At some time, the patient’s needs may be more than you can handle, or a behavior problem such as wandering may cause you to risk your health. If the time comes to consider placing the patient in a long-term facility, such as a nursing home, look at the situation realistically, practically, and honestly. By acting responsibly in making decisions about care, you are not abandoning your loved one. Your time and devotion will continue to make the patient’s life better wherever he or she lives.
What Can A Church Community Do?
The church community can, first of all, be a source of strength and support for the caregiver(s) and family. Meals can be provided, errands can be run, a listening ear can be offered, and intercessory prayer can be rendered (something which should not be minimized).
For the patient, the church’s liturgical life, either during the complete liturgy or in the form of isolated hymns or prayers presented in the context of receiving Holy Communion outside of the liturgy, can provide a connection to familiar times and places. Many priests have observed how parishioners who may seem unresponsive to conversation will cross themselves at the appropriate times during prayer, will join in during the recitation of the Lord’s Prayer (particularly if they learned it as a child in another language and hear it again in that language), or sing liturgical hymns on their own. One director of an adult day care founded on Christian principles related how in leading a bible study on a passage in which St. Paul stated he was in captivity, she asked the group if anyone else had ever felt in prison. A man with Alzheimer’s disease, who had never actively participated before, slowly raised his hand, tears coming from his eyes.
The Christian community, as the fellowship of those who suffer when one member suffers and rejoice together when one member is honored (1 Cor. 12:26), can be a witness to the transforming power of the Gospel, the reaffirmation that God’s love will triumph over “all sickness, sorrow, and sighing.” The sense of abandonment and loss of memory and function that accompany Alzheimer’s Disease and the other forms of dementia, as tragic as they are both to the patient and family, can only find their redemption in the God who pledges to remember. It is when this God remembers, as is sung at the end of the Orthodox funeral service during the hymn, “Memory Eternal,” that death is renewed by life. It is this God who proclaims that, “even to your old age, I am He, and even to gray hairs I will carry you! I have made, and I will bear; I will carry and will deliver you.” (Is 46:4)
This article was adapted from the following materials, published by the Alzheimer’s Association:
“Alzheimer’s Disease: An Overview.”
“If You Have Alzheimer’s Disease: What You Should Know, What You Can Do.”
“Caregiving at Home.”
For more information, contact your local Alzheimer’s Association Chapter or call the Association’s toll-free number.
70 E. Lake St.
Chicago, IL 60601-5997
(800) 572-6037 (in Illinois)
Fr. John Shimchick is the pastor of Church of the Holy Cross in Medford, New Jersey.