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As an Alzheimer's caregiver, you might be your loved one's most powerful voice. Make decisions that ensure dignity and comfort for your loved one.
"I feel that I have been saying goodbye slowly for 10 or more years. I feel more detached from him emotionally all the time while at the same time feel so sad watching him disappear. It is a struggle and it seems that no one else really understands. How are some other caregivers who are losing the love of their life coping?" - Mayo Clinic Connect member
In the early stages of Alzheimer's disease, caregivers often focus on keeping loved ones safe and comfortable. As the disease progresses, however, you might face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care for your loved one? When does medical care merely prolong a person's dying? Here's help considering these and other end-of-life questions.
Advance directives are written instructions regarding your loved one's preferences for medical care at the end of life. Ideally, discuss these preferences in the early stages of the disease with your loved one. Later, make sure copies of advance directives are included in your loved one's medical charts. This is important if your loved one moves to a nursing home or other facility for long-term care or needs care in a hospital or emergency room. The advance directives will help the staff know what is — and isn't — to be done in medical emergencies.
As Alzheimer's progresses, your loved one might not be able to communicate that he or she is in pain. Look for clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs might include sores, swelling, and feverish or pale skin. Speak to the medical team about adjusting your loved one's treatment plan to ensure his or her comfort.
Eventually, you might need to weigh your loved one's comfort against the benefits of prolonged life. In some cases, efforts to prolong life — such as dialysis, tube feeding and antibiotics to treat bacterial infections — might result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.
Hospice care focuses on pain management and comfort care at the end of life. Hospice care is typically reserved for people who have less than six months to live. Because this time frame can be difficult to predict in end-stage Alzheimer's, hospice care is generally considered appropriate when a person who has end-stage Alzheimer's:
Hospice care can be provided anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.
Palliative care — which aims to improve quality of life for people who have advanced illnesses — also might be appropriate. Unlike hospice care, palliative care is available at any time during a serious or life-threatening illness. It's offered in conjunction with other medical treatment and is meant to help ease symptoms, relieve pain, address spiritual and psychological concerns, and maintain dignity and comfort.
Even if your loved one doesn't recognize you or can't communicate verbally, you can still show reassurance and love. To maintain a connection, use your loved one's senses:
Helping someone who has Alzheimer's through the last years of life is a difficult journey. As the disease progresses, you'll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life.
Connect with a caregiver support network on Mayo Clinic Connect: