My sister doesn’t have the energy to do anything any more. Why is this happening and what can we do for her?

Each of us has reserves of energy that we use every day. Healthy people can replenish their energy stores. People with progressive illnesses use their energy stores to get through each day, but their illness prevents them from being able to top up their reserves. So they’re constantly spending their "energy savings." A big challenge is that there’s no way of knowing what the "account balance" of reserve energy is; there’s no way to measure it directly.

As illness progresses, a sign of diminishing energy reserves is seen in decreased physical abilities, particularly in the person's range of activities. Physical tasks become increasingly challenging, and gradually daily activities become limited. When the illness is far advanced, it’s common that someone is in bed all day. This is a normal part of what happens to someone who has a terminal illness.

The "energy savings account" not only helps people get through the day, it has another very important role. These reserves are what we draw from when an unexpected complication occurs, such as the flu or pneumonia. When someone doesn’t have enough energy reserves she can deteriorate suddenly, sometimes to the point of struggling to survive. Such times are uncertain and frightening, and must be taken day by day or even hour by hour.

It’s hard to estimate how long someone may have to live. It may help to use a guideline called the momentum of change. Significant changes in someone’s condition from month to month may indicate that a person may have a few months to live. The same changes over weeks may be a sign that there are only weeks left. Similarly, changes from day to day or hour to hour may mean days or hours of life left.

When a person's burden of illness reaches the point that physical activity is restricted, it indicates that the level of reserve energy is very limited. Your sister’s condition may stay the same for long periods, but it’s possible that a sudden complication leads to a rapid decline. It helps to recognize this and prepare for the unexpected.

You can help your sister by talking with her about how she wants to spend her limited amount of energy. This may mean taking a nap in the afternoon so she can enjoy the evening with family. It also may help to modify her living space so that she can limit the actions that tire her, such as climbing stairs. If visitors are tiring your sister quickly, it may help to limit the number of visitors or ask them to limit the length of their visits.

It may mean a lot to your sister if you ask her whether she has any goal or task she may want to accomplish, and then to help her do it before she’s too weak, or in case something unexpected happens. This also is the time to accomplish any of your own goals that involve your sister.