Hospice provides compassionate care for people facing an end of life illnesses or injury.
Hospices use a team-oriented approach to medical care, and pain management. Hospice care also provides emotional and spiritual support tailored to the needs of both patient and family caregiver.
Many people think of hospice care as something provided to people who have terminal cancer or another such illness. Hospice can also be immensely helpful for people living with Alzheimer’s.
By Marie Marley
Alzheimer's Reading Room
Hospice care is designed to improve quality of life for the person with dementia and for his or her loved one(s).
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The Hospice team approach can include all of the following:
2. Nurses or nurse practitioners
4. Social workers
6. Physical and occupational therapists
7. Speech-language pathologists
8. Hospice aides
Unfortunately, many caregivers wait a very long time to initiate hospice care. They wait much longer than would be optimal.
Instead of beginning hospice when the physician estimates the person has only six months of remaining life, some caregivers wait until their loved one’s death is truly imminent – when death is expected to occur within a few days - not within six months or so. Many caregivers wait until the person is truly “on his deathbed.”
In some cases, this delay is due to the fact that the word “hospice” scares the caregiver, who may be in denial or unable to accept the fact that the loved one probably has less than six months to live.
The caregiver may feel that engaging hospice would be tantamount to signing their loved one’s death warrant. It may seem that as long as hospice care is not started, the person will live longer than six months. At this time, the person living with dementia may be ready for hospice care - but the caregiver is not.
- This delay can rob both the person with dementia and the caregiver of what can be a wonderful and peaceful period of time.
- It can rob them of what can be a beautiful conclusion to the person’s life and the caregiver’s relationship with the loved one.
This is illustrated by the following story about my personal experience with hospice care.
When I was caring for Ed, my beloved Romanian life partner and soul mate, a good friend suggested that I begin hospice care for him. As often happens, I kept putting it off, saying that he wasn’t quite ready for it. In truth, I was the one who wasn’t ready.
Finally, one day I decided to discuss the issue with Doug Smucker, MD, a colleague of mine at the University of Cincinnati. Dr. Smucker was specialized in end-of-life care.
I had so many questions. I wanted to know how a person with Alzheimer’s dies.
How to Get Answers To Your Questions About Alzheimer's and Dementia
I wanted to know if I could change my mind and stop – and subsequently restart - hospice care. I wanted to know what services could not be provided when a person is receiving hospice services.
After patiently answering these and many other questions, Doug looked at me and softly said,
“The real question, Marie, is how can I help Ed have the highest quality of life in the time that is remaining?”
That completely – and almost magically - changed my thoughts and feelings about hospice care.
Instead of focusing on Ed’s impending death – as many caregivers do at this time – I began to focus on his remaining life. I began spending many pleasurable hours thinking up - and implementing - activities designed exclusively to improve Ed’s quality to life.
I decided that I would begin visiting more often. I would bring him even more of the stuffed animals he loved so much. I would have a violinist come play a special concert for him in his room at the Alois Center. I also decided to bring my little Shih Tzu, Peter, whom Ed loved deeply, to visit. I would read to him from the New York Times. I would bring him his favorite treats – mostly chocolate! And I came up with so many more activities that I knew would bring him pleasure.
Once I achieved this new way of looking at the issue and once I started carrying out these activities, I discovered that not only did they improve Ed’s happiness, they also changed my life for the better. Had I not engaged hospice services when I did, we would have missed out on this special time together. We would have missed out on the beautiful months-long conclusion of our 30-year life together.
Marie Marley is the award-winning author of the uplifting book, “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” and co-author (with Daniel C. Potts, MD, FAAN) of “Finding Joy in Alzheimer’s: New Hope for Caregivers.” Marie’s website, Come Back Early Today, contains a wealth of helpful information for Alzheimer’s caregivers.
Two of my related articles published on the Alzheimer’s Reading Room:
Death by Complications from Alzheimer's, What does this mean?
Planning for Important End of Life Health Care Decisions
Hospice Care, Palliative Care
More information on Palliative Care and Alzheimer's Care
How to deal with challenging dementia patients
CareGiver Stress and Sadness
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How long you can get hospice care
Hospice care is for people with a life expectancy of 6 months or less (if the illness runs its normal course). If you live longer than 6 months, you can still get hospice care, as long as the hospice medical director or other hospice doctor re-certifies that you’re terminally ill.
You can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods.
You have the right to change your hospice provider once during each benefit period.
At the start of the first 90-day benefit period, your hospice doctor and your regular doctor or nurse practitioner (if you have one) must certify that you’re terminally ill (with a life expectancy of 6 months or less).
At the start of each benefit period after the first 90-day period, the hospice medical director or other hospice doctor must re-certify that you’re terminally ill, so you can continue to get hospice care.
Finding a hospice program
Consider these questions when choosing your hospice care providers:
- Is the hospice provider certified and licensed by the state or federal government?
- Does the hospice provider train caregivers to care for you at home?
- How will your doctor work with the doctor from the hospice provider?
- How many other patients are assigned to each member of the hospice care staff?
- Will the hospice staff meet regularly with you and your family to discuss care?
- How does the hospice staff respond to after-hour emergencies?
- What measures are in place to ensure hospice care quality?
- What services do hospice volunteers offer? Are they trained?
The hospice provider you choose must be Medicare-approved to get Medicare payment.