When we think of hospice care, we often associate it with cancer patients, but it's helpful for patients at the end of life for other terminal conditions as well, including Alzheimer's disease. It can be a valuable and comforting service for both patients and their loved ones. This article answers some basic questions about hospice care, lists sites where you can get more detailed information and addresses emotional issues related to initiating hospice care for a loved one.
Physicians often hesitate to bring up the issue, so you may have to be the one to broach it. It would be a good idea to begin considering hospice if your loved one is in an advanced stage of the illness. In advanced Alzheimer's disease, the person is unable to walk, dress or bathe without help; has trouble controlling urine and/or bowel functions and only rarely speaks meaningful sentences.
Specific Signs You Should Consider Hospice Care: Gregg Warshaw, MD, Director of Geriatric Medicine at the University of Cincinnati and Past President of the American Geriatric Society, told me that if your loved one with advanced Alzheimer's is exhibiting any of the following symptoms, you may want to talk to the doctor about whether it's time to consider hospice care:
1. Two or more episodes of pneumonia or other serious infections during the past six months
2. Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding six months
3. One or more skin pressure ulcers that are not healing
Ten Common Questions about Hospice Care:
1. What is hospice care? Hospice care is a team-oriented, compassionate approach to care for terminally ill patients that focuses on improving their quality of life and reducing pain and discomfort. It strives to help patients live their final days to the fullest with dignity and support. Hospice care addresses physical, social, emotional and spiritual aspects of the patient's life.
2. Where are services provided? In patients' homes, assisted living facilities, nursing homes, free-standing hospice facilities or hospital hospice units.
3. How does my loved one qualify for hospice care? The patient's physician must certify that the patient is expected to live less than six months if the current illness runs its normal course. The patient must also have either Medicare Part A or qualify for services under Medicaid or Tricare, a benefit to military service members and their families. Some private insurance companies also pay for the care.
4. What services are provided to the patient? Primarily physician and nursing services; physical, occupational and speech therapy; medical social services; home health aide and homemaker services; counseling; short-term inpatient care; prescription drugs and medical appliances and supplies.
5. What services are provided for family members? Hospices primarily provide respite care and bereavement counseling for families. The latter is provided for up to one year after the patient's death.
6. Who pays for it? Medicare, Medicaid (in most states -- if the patient qualifies financially), some private insurance companies and Tricare. In all cases, coverage applies only to issues related the terminal illness -- not to room and board in any facility or other medical conditions that may arise during the time the patient is receiving hospice care.
7. How long can my loved one stay on hospice care? Two periods of 90 days each or an unlimited number of 60-day periods.
8. Can we stop hospice care if we change our minds? Yes, you can stop at any time for any reason. You can also reinstate hospice care later if you wish.
9. How can I locate a reputable hospice care agency? You can get referrals from family members or friends, a hospital social worker, discharge planner or care manager or your physician or local nursing homes. There are also many excellent directories, including the one here, which is sponsored by the Hospice Foundation of America.
10. Where can I get more information? The website of the Hospice Foundation of America is an excellent source of information. You can also check out the website of the National Hospice and Palliative Care Organization. Both have a wealth of helpful information.
Emotional Considerations for the Caregiver
Starting hospice care for a loved one can be a somber and painful experience. When I signed the papers to begin hospice care for my Romanian soul mate, Ed, I felt like I was signing his death warrant. I realized that wasn't true, but it was how I felt.
After the care started I consulted a family physician at the University of Cincinnati who specialized in end-of-life care. He told me something that completely changed my thinking and feelings about the situation. He said that rather than focus on Ed's impending death, I should focus on doing everything I could to help Ed have the highest possible quality of life in the time that was remaining. That turned me around and helped both me and Ed have a beautiful months-long conclusion to our life together.
To read more about my personal experience with Ed you can read my book, Come Back Early Today and visit my website, which has a wealth of Alzheimer's caregiving information.