In the early stages of Alzheimer's disease caregivers often focus on keeping relatives safe and comfortable. However, as the disease progresses you may be facing difficult life issues. When is it time to choose comfort care for your loved one over life-saving care? When does medical care only prolong a person's death? Find help here if you consider these and other end-of-life issues.
Preliminary instructions are written instructions regarding your relative's preferences for end-of-life medical care. Ideally, discuss these preferences with your loved one at the early stages of the illness. Make sure later that copies of the pre-instructions are included in your relative's medical records. This is important if your sweetheart is moving to a nursing home or other facility for long term care or needs care in a hospital or emergency room. The pre-instructions help the staff to know what to do and what not to do in case of medical emergencies.
The focus is on comfort and not life extension.
In the course of Alzheimer's disease, your loved one may not be able to communicate that he or she is in pain. Look for clues such as a sudden increase in the disorder or sleep disturbances. Physical signs include sores, swelling and feverish or pale skin. Talk to the medical team about adjusting your relative's treatment plan to ensure comfort.
You may need to weigh the comfort of your loved one against the benefits of a longer life. In some cases, life-longing efforts – such as dialysis, gavage and antibiotics to treat bacterial infections – can cause unnecessary suffering for people who might otherwise end up at relatively good comfort and peace.
Hospice or palliative care.
Hospice care focuses on pain management and comfort care at the end of life. Hospice care is usually reserved for people who have less than six months to live. Since this timeframe is difficult to predict in the terminal stages of Alzheimer's disease, hospice care is generally considered appropriate if a person with Alzheimer's end-stage:
- has lost communication skills
- can not walk
- ] Suffers urinary and fecal incontinence
- Has at least one dementia-related medical complication, such as aspiration pneumonia, infection or weight loss.
Hospice care can be done anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. You can also stop the hospice care at any time.
Palliative care, which aims to improve the quality of life of people with advanced disease, may also be appropriate. Unlike hospice care, palliative care is available at all times during a serious or life-threatening illness. It is used in conjunction with other medical treatments to help alleviate symptoms, relieve pain, respond to mental and psychological concerns, and maintain dignity and comfort.
Connect through the senses.
Even if your beloved people do not know this, or can not communicate verbally, you can still show reassurance and love. To maintain a connection, use the senses of your loved one:
- Touch. Hold the hand of your loved one. Brush his or her hair. Gently massage hands, legs or feet of your loved one.
- Odor The smell of a favorite perfume, flower or food can have a calming effect.
- Sight. Show your loved one a video with scenes of nature and gentle, soothing sounds. Or take him or her to a garden or watch the birds.
- Hearing Read aloud, even if your lover can not understand the words. The tone and rhythm of your voice can be soothing.
Dying with Dignity
Helping a person with Alzheimer's in their last years is a difficult journey. As the disease progresses, you make more decisions for your loved one. Among the most profound are decisions that guarantee respect, dignity and physical well-being until the end of life.
Release date: 2000-04-25