What to Expect at the End of Your Loved One's Life-Limiting Illness

Our modern era provides many tools to help us fight against aging, illness and death. Thanks to advances in health care, many of us no longer die suddenly from infections or injury. Now, we often live longer and die after a period of chronic illness.

While it's a natural, human instinct to hold tightly to life (both our own and the lives of our loved ones), dying is also a natural part of living.

But most of us are uncomfortable talking about death. The end of a life, no matter how well the life was lived and how long it lasted, can be a sad event. Many people do not have experience caring for someone during the dying process and find themselves navigating unfamiliar territory. But family members and caregivers can play an important role in providing comfort and support to someone entering the final phase of life.

In honor of November's Hospice and Palliative Care Month, recently I On Your Health focused on two related topics: how to become a caregiver for your loved one, and the differences between palliative care and hospice care.

Today we want to write about an especially sensitive topic. If your loved one is coming to the end of his or her life, you may not know what to expect. Even though each person's dying experience is unique, there are some landmarks along the way to help guide you as you care for someone in the final weeks and hours of life (with thanks to Hospice of Santa Cruz County for the information in this article).

Withdrawal

It is common for people to withdraw from friends, family and the world around them as a normal part of the dying process, which can begin as early as weeks before death. The dying person may spend more time asleep than awake. With the withdrawal comes less of a need to communicate with others. The detaching from surroundings and relationships may be preparation for release and letting go.

What you can do:

• Plan activities and visits for times of day when your loved one seems most alert.
• Speak to the person in your normal tone of voice since hearing remains intact until the end.
• Identify yourself by name when you speak.
• Remember not to say anything in front of the person that you wouldn't say if he or she were awake.

Changes in Appetite

Near the end of life, it is natural for a person to no longer be interested in food. Often nothing tastes good, and cravings come and go. This is sometimes a hard concept for caregivers to accept because food is the way we nourish our bodies and share family time. But as the body begins to slow down, it is no longer able to digest food in the same way. Weight loss is expected and does not mean your loved one is hungry or being "starved" by the absence of food.

What you can do:

• Let the person be the guide. He or she will let you know if food or fluids are needed.
• Respect the person's wishes by not forcing food or drink. People who can't speak will sometimes cough, bite the spoon, turn their heads, or spit food out to let you know they don't want to eat.
• Liquids are preferable to solids. Some people find thickened liquids easier to swallow.
• Often a person near death may appear thirsty but won't be able to drink water. Small ice chips or frozen juice may be refreshing to the mouth. Frequent mouth care may provide comfort. Use swabs to keep the lips moist.

Changes in Elimination

Incontinence is the loss of control of the bladder and bowels that can sometimes occur as the muscles in the lower body relax. Unfortunately, incontinence can be a source of embarrassment for many people. Your goal should be to preserve your loved one's dignity by keeping him or her clean, dry and comfortable.

What you can do:

• Adult disposable briefs and underpads on the bed may help. Provide privacy when changing pads or providing personal care.
• In some situations it may be appropriate for the hospice nurse to place a catheter into the bladder to keep the person's skin from being constantly wet. There may be a few seconds of discomfort as the catheter is inserted, but then there is generally no awareness of it.
• The nurse may suggest the periodic application of certain creams or lotions.

Changes in Breathing

Breathing patterns often change for those nearing the end of life. Breathing may slow down, or there may be rapid, shallow breaths followed by periods of no breathing. These periods can last five to 30 seconds, or even up to a full minute. This kind of breathing is not uncomfortable for the person but is a response to the body's weakening condition.

Sometimes when individuals are so weak that they can't swallow, saliva gathers in the back of the throat and makes a rattling sound. This sound may be distressing to hear, but it does not indicate the person is suffering.

What you can do:

• At this point the person is usually breathing with his or her mouth open. This will make the mouth very dry, so frequent mouth care is important.
• If breathing seems labored, tell the physician, who may then prescribe morphine to ease breathing and provide comfort.

Changes in Body Temperature

What you can do:

• If a fever develops, let the hospice nurse know. Often placing a cool wash cloth on the forehead and removing blankets is all that is needed, although an over-the-counter pain reliever may be administered.
• As the fever lowers, the person may perspire, requiring a change of gown and sheets to provide more comfort.

As your loved one becomes weaker, his or her circulation decreases. You may notice that extremities feel cool to the touch and skin color may change. The person may appear pale and have a bluish cast around the lips and under the fingernails. This state doesn't cause any discomfort for the person and is a natural part of the dying process.

What you can do:

• Use a warm blanket, but not an electric blanket.
• Continue to gently reposition the person, or provide gentle massage.

Confusion and Disorientation

At times, people nearing the end of life may feel confused about the time, the surroundings, and the identity of those around them.

People near the end of life will sometimes talk about travel, as though they are planning a journey. They may say things like, "I want to go home," "I want to get my keys," or "Where is the train?" This is referred to as symbolic language, and may be one of the ways your loved ones let you know they are preparing for death or are trying to say goodbye.

When the symptoms are present, you may wonder if your loved one is taking too much medicine. Most often though, these symptoms are a normal part of the dying process. The hospice nurse will assess the prescribed medication at each visit to make sure the correct medicine is given at the correct dosage.

What you can do:

• If appropriate, gently try and reorient the person. Remind them of who you are, and point out familiar landmarks in their surroundings.
• Allow and acknowledge whatever experience the person may be having. This experience is real to your loved one even though it may not seem real to you.
• Provide reassurance by reminding them of your presence. Tell them you are there to take care of them and keep them safe.
• Sometimes limiting visitors can decrease the level of confusion or disorientation.
• You may want to keep a journal to record some of the meaningful things that are shared. This may be a source of comfort for other family members after your loved one dies.

Restlessness and Agitation

At times, your loved one may appear restless or unable to sit still. It may be caused in part by a slowing down of circulation, causing less oxygen to flow to the brain. Sometimes agitation can be a symptom of physical discomfort. Emotional or spiritual concerns, such as unresolved issues or tasks, can also cause feelings of uneasiness or restlessness.

What you can do:

• Holding hands or a light touch can be reassuring.
• Provide a reassuring presence by speaking slowly, calmly and in a soothing way.
• Ask the hospice nurse to assess if your loved one is agitated because of underlying pain.
• Utilize the hospice social worker or chaplain to address underlying concerns and provide spiritual support.
• Restraints may cause further agitation and are not encouraged.
• It may be useful to limit visitors and minimize outside distractions such as ringing phones.
• If appropriate, help your loved one resolve issues and complete tasks. Sometimes offering to take over a task can provide relief.
• Some people find comfort in sharing memories about special occasions, family experiences, or the memory of a favorite place.

Surge of Energy

Dying loved ones may exhibit unexplained surges of energy, which are usually short-lived. They may become unexpectedly alert, stay awake for longer periods of time, ask to eat after they haven't eaten for days, or want to get out of bed. Although this surge of energy can give false hope that loved ones are getting better, it may be that they are gathering all their physical strength for their last full-body experience.

What you can do:

• Enjoy this time for what it is.
• Use the time to reminisce and say goodbye.
• Be together holding hands.

Caring for someone who is in the final stage of life can be physically and emotionally demanding. It is not uncommon to experience a wide array of emotions and uncertainty, but knowing what to expect can help you feel more confident in your role as as a caregiver, to better help you provide reassurance, comfort and dignity to your loved one at the end of life.

Whether your loved one needs in-home care or prefers to be in a hospice facility, INTEGRIS Hospice Services can meet your hospice and palliative care needs. We also offer support to the family of our patients through respite care, as well as bereavement and grief recovery support groups.

To learn more, visit INTEGRIS Hospice Services or call 405-848-8884