End of Life

The experience of dying is different for each person. It comes in its own time and its own way. However, the process of dying often follows a somewhat predictable path. Several physiological (physical) changes signal that death is near. Knowing what to expect during this difficult time can lessen some of the fears and worries. When a person with Alzheimer's disease is in the very late stages of the disease, the focus should be on quality of life and comfort, rather than on lengthening life and giving treatment. Palliative or hospice (also called comfort) care focuses on the whole person's needs—physical, emotional and spiritual.

At the end of their lives, most people with Alzheimer's disease are being cared for in a care facility. The care required is extensive and is very difficult for family members to manage on their own. It is certainly more than one family member can manage alone. If the decision is made to have the person die at home, it is important that the doctor refer the person to home support services. This means a community nurse can help the family in figuring out what care is needed. The nurse can then teach the family how to give the care and provide support and direction as needed. Under the best circumstances, the family will be assisted by a palliative care team.

Download PDF Read our brochure for more information.

The following are some common changes and possible strategies for this stage of the disease. These strategies are not meant to be substituted for medical advice and should be discussed with the health-care team before being undertaken.

Common changes Possible strategies
Physical changes:  
Blood circulation 
- feet and hands may feel cold or cool to touch
- blood pressure goes down
- lips and nails become bluish
Gently massage hands and feet with lotion.
Skin breakdown and pressure sores - Learn how to position the person and prop with pillows.
- Change the person's position every two hours, or more frequently if the person is thin or has constant reddening over bony areas.
- Keep the skin clean and dry. Do not massage over bony areas. 
- Relieve pressure on the person’s heels, elbows and other bony areas by placing a pillow or foam wedges under them. 
- Speak with a physiotherapist about range of motion exercises to help keep the joints moving.
Person no longer accepts food and drink due to shutting down of systems - Realize that the person is not starving to death, as the body no longer needs the same amount of energy. This is part of the disease process.
- Use a cotton swab moistened with water or glycerine to dampen the lips. 
- Get direction for how to provide mouth care, including cleaning the teeth, tongue and inside of the mouth.
Possible build-up of secretions (liquid or phlegm) in the lungs or back of throat; dry mouth - Speak to your health-care professional for help in these matters
Sleepiness increases. The person may feel pain or discomfort but awareness of pain decreases. - Watch for signs of pain, such as grimaces, crying out, moaning, changes in behaviour, increased agitation, anxiety, and sleep problems. Speak to your health-care provider about what you can do to help relieve the pain, such as changing the person's position and using medication.
Fever may appear - Speak with your health-care provider on ways to keep the person cool, without having the person get chilled.
Breathing may sound congested; may change in rate, depth and rhythm; may be periods of not breathing for 5-30 seconds - No intervention is usually necessary
Senses start to change: 
- vision may become blurred or appear to be distant
- sensitivity to noise, lights, etc. May react positively to familiar voices, such as singing or someone reading aloud.
- Keep connected through touch. 
- Continue to talk quietly, tell stories, reminisce about past events, play music that the person likes, read.
- Do not talk about the person, as if he is not there. Leave the room if you need to discuss something.
- Observe the person for signs of stress. Keep lights low and noise to a minimum. Consider visiting in smaller numbers.
Irregular pulse, agitation and restlessness - Reassure the person.
- If this keeps up, look for causes of the behaviour such as pain or thirst.
Emotional issues:  
The person still experiences and senses emotions - Speak soothingly, reassuringly. Remind the person that she is safe and cared for.
Spiritual issues:  
Spiritual connections may remain important. The person may seem to choose his time of death. - Play/sing/recite favourite songs, scripture, prayers, readings.
- Arrange for a faith leader to visit, if appropriate.
- Some individuals need permission to die. As well, some family members need permission to let go.

Taking care of yourself as caregiver

This stage of the disease can be particularly challenging. It is important to take the time you need to care for yourself, too. Try to:

  • Take time to acknowledge that you may be grieving even before the person dies.
  • Take breaks from caring for the person. Consider if there is someone else who you trust to spend time with your family member while you get some rest.
  • Take care of your own health.
  • Confide in friends and family or consider visiting or joining a support group.
  • Look for professional help if your feelings become overwhelming.

What's next?

When the person with the disease dies, you may feel a range of emotions—from relief and guilt to sadness and peace. These are all normal feelings. It is common to feel some guilt at feeling a sense of relief at the person's death. Grief is a normal, natural, expected response to the loss of a significant person in your life and will be a different experience for everyone. Even if the relationship was a difficult one, the loss of the person can still be felt very deeply.

You now need to take care of yourself. Give yourself time to grieve. You have likely been grieving since the start of the disease and have experienced losses throughout. Be kind and patient with yourself. You may not be able to return to your previous routines quickly or feel as energized as before. Grief can affect all areas of your life—physical, social, emotional, psychological and spiritual.

Here are some suggestions for working through your grief:

  • Do what naturally makes you feel comforted—there is no right or wrong way to grieve.
  • Give yourself permission to feel whatever you feel.
  • Feel free to express yourself—write, cry, dance, tell your story over and over again.
  • Express yourself in your own way. Don't compare yourself to others—everyone grieves differently at different times.
  • Share your feelings with someone you trust.
  • Allow yourself to learn—grief is a process that can teach you many things about yourself and about the relationship you had with the person.
  • Caring for someone for months or years can become a primary focus in one's life. It is not uncommon to neglect other relationships and activities during this time. Take some time to rebuild the connections that are important to you and discover old or new passions.
  • Anniversaries (including the anniversary of the person's death), birthdays and holidays are all special occasions that may create fresh feelings of grief—even years later.
  • Plan ahead for how you will manage these anniversaries. Only you will know if it is more helpful to be with others on these days or spend quiet time alone. Sometimes it is hard to know how you will feel until the time comes. Consider having a back-up plan—such as a friend who might be available to meet on the spur of the moment if being alone is difficult.

Help and support from the Alzheimer Society

You have been on a difficult journey and it is normal to feel grief and loss as well as a variety of other emotions. It is important to acknowledge your feelings, care for yourself and seek the practical help and emotional support that you need.

The Alzheimer Society in your community can provide educational resources, support, and referrals to agencies that can help you with the grieving process. Contact your local Alzheimer Society.

Resources

  1. Alzheimer Society. www.alzheimer.ca (of particular interest: "Alzheimer Care—Late Stage and End-of-Life Care", "Forums" and "Resources" sections). The following can also be obtained by contacting your local Alzheimer Society or by visiting www.alzheimer.ca.
  2. Alzheimer Society of Canada. (1999). Guidelines for Care.
  3. Alzheimer Society of Canada. (2008). The Progression of Alzheimer's Disease—Overview; Early Stage; Middle Stage; Late Stage; and End of Life information sheets.
  4. Deborah Sigrist. (1996). Journey's End: a guide to understanding the dying process.
  5. Alzheimer's Association, US. End-of-life decisions—Honoring the wishes of the person with Alzheimer's disease, http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf
  6. Health Canada. Palliative & End-of-Life Care. http://www.hc-sc.gc.ca/hcs-sss/palliat/index_e.html
  7. Canadian Hospice Palliative Care Association. http://www.chpca.net/Home
  8. Public Health Agency of Canada. Aging and Seniors. http://www.phac-aspc.gc.ca/seniors-aines/pubs/info_sheets/palliative_care/pall_e.htm
  9. Centre de santé et de services sociaux - Institut universitaire de gériatrie de Sherbrooke. (2009). Comfort Care at the end of life for persons with Alzheimer's disease or other degenerative diseases of the brain.

[This information provides guidance but is not intended to replace the advice of a health-care professional. Consult your health-care provider about changes in the person's condition, or if you have questions or concerns.]


Last Updated: 04/16/14