When your loved one has a terminal illness, such as Alzheimer's disease, plan for end-of-life care before you need it.
You don't want to be overwhelmed with all the decisions to be made when your doctor recommends hospice care. What exactly is hospice care? Hospice care is a form of palliative care that is meant to comfort your loved one in the end stages of his or her illness. Curative measures are not provided here. The goals are to have your loved one be pain free and as comfortable as possible.
Hospice care is typically provided at home, although it is also available at many nursing homes, hospitals and at freestanding hospice centers. You may want to explore the care facilities in your area. Even if you are planning for your loved one to stay at home, you don't know what will transpire as your loved one's dementia progresses.
As you review your hospice choices, here are some things to look for.
- Find out how large the staff is. The hospice team will consist of the case manager, doctors, nurses, social workers, and nurse aids. It's beneficial if they also have pharmacists, physical and occupational therapists, a registered dietician, and spiritual counselors.
- Discuss the personal care that the hospice team will provide. For example, a bath nurse should visit 2-3 times a week. How often will the case manager visit? What kind of pain medication or alleviation methods will be employed by the staff.
- Find out if the hospice service provides grief counseling for family members.
- You should also research into the continuity of care that will be provided. Try to arrange so that your loved one has the same staff, such as nurses, during the week. If your hospice provides care for your loved one at home, recognize that there will not be a staff person at your house at all times.
- Make sure the hospice provider has a 24 hour call line. Respite care will also become a necessity for the family. Try to have this service included in your package. Many times the respite care will come from trained volunteers.
- Ask for references. Make sure the services are Medicare certified and all employees are licensed and bonded. If your doctor recommends a specific hospice service, don't be afraid to ask why. Try to determine whether he is recommending it because he has experience with the service and believes they provide the best care, or because he receives a financial incentive for placing patients there.
- Plan for end of life care during the early stages of your loved one's dementia so he or she can have a role in the decision making. If your loved one is comfortable with the decision, it will help relieve some of the pressure to all the family caregivers when the time comes.
Resource: Hospice at Home
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