Caring for Seniors with End-Stage Illness

Advice for families and caregivers

The end stage may arrive after years of successful management of a chronic illness. Or it may arrive suddenly, after an acute attack. Whatever the cause, caregivers have a significant role to play, giving emotional support and doing small things that let the senior know that he or she is loved.

Q&A for Seniors and The End Stage
The doctor said that my parent is at the end stage. What exactly does that mean?

When a patient reaches the end stage, treatment can no longer offer a cure and the focus turns to making the patient as comfortable as possible. This involves treating pain as aggressively as possible and may require balancing the degree of lucidity the patient wants to maintain with the degree of pain relief sought. Treatment for anxiety, depression and nausea are also often needed. At this point, many people turn to hospice care.

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What can I do to make my parent feel better at the end stage?

Here are some things you can do that can help:

  • Spend time with your parent, not necessarily talking but gently touching or holding his or her hand, and giving comfort and reassurance in a calm manner. Your presence and touch may do wonders.
  • Another option is to rub your parent's hands and feet gently. Or give your parent a gentle massage, which will make him or her feel good and also help with blood circulation. If you use lotion, make sure there is no alcohol in it, as that will cause the skin to dry.
  • Soaking your parent's feet and hands in warm water can be soothing.
  • If your parent is at home, use an eggshell mattress to make the bed more comfortable.
  • To make chairs more comfortable, consider foam cushions.
  • Keep your parent warm with as many blankets as necessary.
  • If your parent is disoriented, frequently let your parent know where he or she is, who is present and what time of day it is.
  • To keep your parent's mouth moist, keep offering sips of water through a straw. If your parent can't swallow, try glycerin swabs.
  • Offer several small meals a day rather than three large ones.
  • Invite a clergy person to meet with your parent, if that is something your parent would like.
  • Some people at this stage benefit from talking with a therapist or hospice worker to help put their life in a meaningful perspective.
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Is there any typical response when people learn they are at the end stage?

Family and friends should be prepared for conversations about the meaning of the patient's life and for reflections on different painful or wonderful moments. They may be apologized to, thanked, or accused. Some patients maintain the same emotional style they always evinced, while others may become much more expressive of their feelings. This can be either difficult or a relief, or both, for family and friends who had become used to one way of interacting with the patient and who aren't prepared for a very different style.

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Is it appropriate to bring up end-of-life treatment decisions and burial issues at the end stage?

It may seem awkward to discuss burial preferences, but your parent may be grateful to discuss them now, since the doctor has presumably informed him or her that the end stage has been reached. If your parent hasn't already written a living will clarifying advance directives as to what kind of care he does and does not want near the end -- including such things as resuscitation and intubation preferences -- this is the time to do it. Your parent's wishes in these matters should be shared with both the physician and the family. Ideally your parent will empower someone to make health care decisions if he or she is no longer able to do so, and will give someone trustworthy durable power of attorney over financial affairs.

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Now that my parent is at the end stage, should I expect a sudden period of energy and alertness?

Not everyone has this period and it is impossible to anticipate who will. Some people, however, do experience sudden energy and alertness shortly before dying. During this time they are able to connect with loved ones, which often feels like a miracle and enables both the patient and the loved ones to express their feelings. But this resurgence doesn't last long, and the patient usually dies soon after.

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My parent is anxious about dying. Would relaxation techniques help at the end stage?

They might. It is worth a try. Discuss the different techniques with your parent and see which one, if any, he or she feels most comfortable with. Then encourage your parent to practice the most appealing one for a few days to see if he or she gets any relief. If not, your parent could try another one. Your parent could also speak to a doctor about anti-anxiety meditation and/or try counseling -- either with a therapist, clergy person or hospice worker -- to put his or her life in perspective and come to terms with it.

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My parent has reached the end stage. Is there any one right way to say goodbye?

While some die quickly and suddenly, with no chance to say good bye, others know that they are dying and are able to take advantage of that time to make amends for whatever they regret, and to let those closest to them know how much they have meant to the patient. This also allows loved ones to let the patient know how important he or she has been in their lives, and can enable the passing to be as loving as possible. Of course, families have all sorts of complications, and it is therefore impossible to offer one right way to say good bye.

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How do I go about finding a caregiver for my parent who is at the end stage?

Care.com is a website that lists hospices and people throughout the United States who provide care to seniors, includes photos and descriptions of their experience, and does free background checks for members. You can search by zip code. For specific listings, go to: Care.com.

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Other resources for Seniors and The End Stage

cnn.com

getpalliativecare.org

nhpco.org

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