How to Help Your Loved One As Dementia Closes In

There's no other way to say it: This article comes from the heart. Alzheimer's and related dementias have afflicted hundreds of confused, frightened Alzheimer's residents and their anguished, caring families in facilities where this writer, formerly a nursing home administrator and recreation director, has worked over more than 30 years, providing all the specialized knowledge and loving care at my skilled staff's disposal.

Now, dementia closes in on a loved one in my own immediate family. I no longer represent any senior health care company; I speak personally. Although the medical establishment reports progress in understanding Alzheimer's, no drug can yet cure or (in my experience) significantly postpone the increasing confusion of this or the related dementias. After completing all the tests, our doctor, who knows my professional background, calls me to say: "You know we've got nothing at this time but our increasing understanding and our good care with which to fight this thing." Well, fight I will, with all my knowledge of how to decrease confusion and provide comfort. This "fog" can take the mind, but it cannot outflank my love.

Here are ways to help your loved one:

Things You'll Need

• Love
• Courage and Strength
• Faith, religious or otherwise, that there is some source of help and comfort greater than yourself alone -
• Knowledge, willingness and desire to learn
• Support from both family and professionals

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Instructions

• 1

  LEARN THE 3 STAGES OF DEMENTIA: First, learn everything you can about Alzheimer's and the related dementias. Alzheimer's Disease is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking, and behavior. It is the most common form of dementing illness. More than 100,000 die of Alzheimer's disease annually, which makes it the fourth leading cause of death in adults, after heart disease, cancer, and stroke.

  FIRST STAGE: In the first stage, which takes 2 to 4 years leading up to diagnosis, as the person begins to exhibit symptoms, it is hard to tell whether the cause could be Alzheimer's, something as explainable as an accidental drug interaction, or even a urinary tract infection, which can produce symptoms of confusion and agitation. This is the stage when thorough testing is performed, to rule out other causes. In this stage, people who have had sharp minds become anxious, fearful of their increasing confusion and loss of control of their memories and actions, and may exhibit personality changes, avoiding people. During this stage, recent memory loss begins to affect job performance and daily routines; a person can get lost on the way to work, forget what he was just told to do, make poor decisions, take longer with routine chores, constantly recheck the calendar yet arrive on the wrong day, or have trouble handling money or paying bills.

• 2

  SECOND or MID STAGE: In the second or mid stage, 2 to 10 years after diagnosis (the longest stage), activities of daily living such as bathing, dressing and teeth brushing become difficult, because the person develops difficulty remembering the complex series of steps. (Did you know there are 63 mini-steps involved in brushing your teeth?) Orientation to time, person and place deteriorates. "Did you enjoy your visit with Agnes?" "What visit? Agnes never came to see me!" Symptoms may include increasing memory loss, confusion, and a shorter attention span, with difficulty recognizing close friends and/or family. The person may make repetitive statements, become restless (especially in the late PM, called "sundowning"), have perceptual-motor problems such as difficulty getting into the car, and have trouble organizing thoughts, or thinking logically. Often, the person can't find the right words, and so makes up stories to fill in the blanks. By this stage, there are usually problems with reading, writing, and numbers, and the person may become suspicious or irritable. With loss of impulse control, hygiene may suffer: The person may be afraid to bathe, and have trouble toileting and dressing. As the person reaches this stage, he or she will need full-time supervision.

• 3

  THIRD or END STAGE: In the third or end stage, lasting perhaps a few years, the person may become unable to recognize family, communicate with words, or care for him or herself in any way. There may be incontinence, or difficulty swallowing. The person will need complete assistance with bathing, toileting and dressing. Despite this loss of cognition and independence, the person will still be acutely aware of your kindness, your ability to understand, help and comfort, and your love.

• 4

  HOW TO COMFORT: How can anyone give real comfort to a loved one who is enduring this tremendous, devastating, on-going loss? Here is a brief true story; I like to call it "The Woman With a Twinkle".

  Judy visited her 90 year old mother, Ruth, in the Alzheimer's Unit almost every day. Ruth, who could no longer speak, seemed withdrawn and listless; she cried even during her daughter's visits, not seemingly aware that she was there. One day, Judy could take it no more; she burst into loud sobs over her mother's obvious misery. Suddenly, Ruth raised her head, reached out and held her daughter close. Stunned by the transformation, Judy stopped crying and laughed for joy. From that day on, although Ruth may not have remembered the exact reason, she sat with a twinkle in her eye, patting the hand of any other resident near her. Even though she could no longer care for herself, she had been able to comfort her daughter! Although Ruth could no longer speak, she had expressed her need to be needed.

  Whether your loved one is in a nursing home or with you at home, let him or her help in whatever way he or she can. If at home, let mom sprinkle sugar on the apples for the pie, or "help" you brush your hair, as she did when you were little. If she is in a care facility, tell her when you are tired or need a hug; let your loved one know you need her to give YOU comfort! You will be amazed at the emotional transformation.

• 5

  Beyond meeting your loved one's deep need to matter to others, you can provide real comfort by understanding his or her need for routine. Although Dad may not remember his daily routine, you can bring back some of the familiar comforts by reminding him of his old, familiar ways: The morning stroll, (with the family dog) if Dad is able; old-time radio music; his favorite foods; reruns of a favorite tv show; his bedtime routine, step by step.

  There is a stage when many of those with dementia find special comfort in the simple routine of walking, if they are able. It is refreshing (in moderation) and feels purposeful and productive. If your loved one lives with you, establish a safe walking route, with a companion for guidance and safety. In a care facility, Alzheimer's Units often have safe walking paths within an enclosed garden area, for residents' use during clement weather. In poor weather, plan a walk through the facility with your loved one as part of your visit; make it a predictable routine that your loved one can count on whenever you come. Try to visit routinely, preferably at the same, expected time of day. Bring the family pet who needs to be patted and hugged. Give a long hug to Dad or Mom yourself when you arrive, and before you leave. Then have the staff distract your mom or dad with some other interest or care task while you leave. Predictable routines provide great comfort by reducing confusion.

• 6

  HOW TO HELP YOUR LOVED ONE as dementia closes in: Most of all, those with dementia need to feel that no matter what they do or cannot do, you will be there for them, always. However great their confusion, the most comforting words they can hear are "I will always love you." The darkness of end stage dementia may be inevitable, but I like thinking of this analogy: On foggy nights when I've driven home from work, although my "brights" have not pierced the darkness as well as usual, the "fog lights" on my car produce a warm, diffuse glow through which I can somehow see. Just so, though you may no longer be able to reach your loved ones with the bright focus of your love, yet they will know, with the warm glow of your love surrounding them, that you are there to see them safely home.