Caring for a dying parent requires understanding eldercare options including nursing home care, home care, and palliative care.
The New York Times ran a tragic story on the front page of the Sept 25, 2014 issue; Maureen Stefanides fought to fulfill her 91 year-old father’s final wish, to die at home. http://nyti.ms/Ygkrf9 . The story reads like a Greek epic: a daughter battles against terrible dangers –poor hospital care, insufficient rehab, bad nursing home facilities, and inadequate home care — to save her father. Unfortunately, she did not succeed.
Ms. Stefanides is not alone. Many families face difficult decisions when caring for a frail loved one. Eldercare options are complex, and it is hard to make choices particularly under emotional stress.
As I read the story, I kept thinking, would Ms. Stefanides have been able to avoid many of these problems if she had a more comprehensive understanding of her choices? The article described the treatment her parents received in respective nursing homes after they left hospital care. Their care was appalling. I wondered, if Ms. Stefanides had known how to research facilities, known what questions to ask and what factors to evaluate, could have found a facility that offered her parents more compassionate care? (To download a nursing home checklist, click here)
The same holds true of home care. Ms. Stefanides battled Medicaid to get her father the number of hours he required; even after she won her case, she questioned the competency of the nurse and the aides who were responsible for him. It is often difficult, but not impossible to receive the number of hours a loved one needs. But you need to know how to document your loved one’s needs and how to convey this information the home care agency. There are also basic questions you should ask a home care agency to insure getting a qualified aide. There is no reason why anyone should have to settle for anything less than exceptional care from an agency. (For a checklist of questions to ask a home care agency click here)
The bigger question that many families face is how to allow a loved one to die at home. This is a difficult decision to make, but is simple to carry out. First you should discuss this choice with your loved one. Once that is done you should locate a doctor who understand your wishes and can offer you information on palliative care. Palliative care is a specialized medicial care that offers the patient relief from the pain and stresses of symptoms without attempting to prolong life.
Finally you must decide not to call 911 as soon as your loved one shows signs of distress. This is hard for many families. You must understand once you call 911, the responding emergency medical staff is obliged to show up and do whatever they can to try to revive the patient. That includes taking your loved one to the hospital. Once a patient arrives in the emergency room you are caught in the system of hospital and nursing home care.
More and more families are grappling with these choices. The best way to make informed choices is to learn as much as you can about the different care options. Ideally you should start your research before you have to make decisions. This way you are less likely to act impulsively. You can also call on an eldercare expert like me who can guide you through these choices.
Dying is an inevitable part of life, but if you know your rights and can be involved in making informed choice, there is a much better chance of giving a loved one the death they desire.