Time and Love

Gifts to the Caregiver

Anne Duggan

Reprinted from "Seniors' Mental Health" issue of Visions Journal, 2002, No. 15, pp. 24-25

There is a gradual nature to the onset of signs and symptoms of Alzheimer’s disease which can be interpreted and accepted as a gift of time.

Time is not often given when life-changing events occur. What is the best way to make use of this gift of time? What decisions and actions does time allow which will make the course of Alzheimer’s a calmer and steadier process, rather than an extended crisis?

Start with an acknowledgement of the problem. Talk about it, ask questions, read the literature, discuss all the fears. It is astonishing to find that when talked about, there is always someone close by who has experienced the same fear, guilt, frustration and anger. Knowing that one is not alone makes a huge difference in gathering the resources needed to go on.

The most fundamental and necessary activity, once the Alzheimer’s process is recognized, is to plan for change — and to put the plan in place. It is essential to prepare for the kinds of changes that are inevitable.

It is time to remove the frustrations and reduce the level of decision-making in everyday life, to simplify every aspect of living. It is both a courtesy and a commitment to the person with Alzheimer’s. It indicates that we understand that the complex decisions and processes of daily living can, and will, be made easier and less confusing. Now is the time to start gradually and consistently to put affairs in order. Downsize or simplify the house, cars and garden. Take a trip now that you were hoping to take later on.

This is a really good opportunity for spouses to learn how to do those long-avoided and unfamiliar tasks such as doing the laundry, cooking, banking, repairing a leaky faucet or changing the furnace filter, and many other things that can keep a home running smoothly when one partner is not functioning at capacity.

It is also time to develop a good working relationship with the family physician. There may be new drugs to try, or new research programs in which to participate. It is helpful if the doctor is kept up to date with the signs of physical and mental changes and the rate at which they occur.

It is important not to focus so much on memory loss that new or ongoing medical problems are overlooked or sidelined. If a person with Alzheimer’s suffered from angina or arthritis before the signs of dementia showed up, it stands to reason that he or she suffers the same pain now. They may not interpret and translate it in the same way, so friends and doctors must now become detectives. Pain is often the cause of restlessness and fear.

The health of the caregiving partner must be on the agenda at every doctor’s visit. It is all too common for a spouse to devote so much time and energy to the person with Alzheimer’s that his or her own health suffers. A balance is needed and the physician can be a knowledgeable and objective advisor to both.

A practical action in the early stages is to set up a program with friends and neighbours in which they visit or drop in to your home frequently and spontaneously. This not only creates a diversion, it is an easy way to familiarize the person with Alzheimer’s to people coming and going in the house: something which is difficult to introduce later on when it is essential but often strongly resisted.

The whole idea of building a network of willing and able people is foreign and awkward to many who have lived a private and independent life. Yet, it is one of the most effective and reliable support services available. When people say “let me know if I can do anything,” accept the offer. Give them each a job. Everyone will benefit.

By learning about the patterns of Alzheimer’s, one can anticipate which activities or thought processes may next become difficult. As the person with the disease diminishes in some aspects of life, it is reassuring to think that a loving caregiver grows and strengthens to meet the challenge.

A big part of the growth process is in changing expectations and re-ordering the priorities in life. A day now becomes 24 hours, not just nine to five; exercise and nutrition can be balanced over two or three days, rather than one; a full bath or shower can be reduced to two or three per week from an everyday routine. There are ways that fashionable clothing and accessories can be modified for comfort and simplicity, without the loss of dignity.

It is sometimes much more effective to sit quietly with the person with Alzheimer’s and let them know they are safe, than to attempt to keep them engaged. Our own fear of boredom or idleness often seems not to be shared, at all, by someone with Alzheimer’s. Of course, each person is an individual, and there are many different ways to find the most comfortable routines and pasttimes that support and maintain a sense of value, dignity and pleasure in life.

The fundamental principle underlying all of these coping strategies is that while a person is experiencing memory loss and other changes associated with Alzheimer’s disease, he or she remains a whole person, consumed with fear and anxiety at the prospect of losing mental acuity. Memory may be affected, but intellect and the desire for information, control of decision-making and individuality are sustained.

The need for love, reassurance, a sense of personal worth and safety is intense. The caregiver, in whatever relationship he or she may have with the person with Alzheimer’s, is the absolute and essential element in determining how this sense of security will be maintained.

Music, rhythm, spirituality, a sense of surprise and fun: all of these gifts are there for the sharing and they can all be incorporated into the activities of each day.

About the author
Anne is from Parksville, and writes from the perspective of a professional caregiver, a family caregiver and a long-time advocate of the idea that we have much to learn from people with dementia. This article is adapted from a speech she delivered at the CMHA in Duncan earlier this year