It is inevitable that most children will eventually have to care for one or more parents as they age. When it comes time for end-of-life care, it can be a difficult time knowing the right steps to take at the right time. End-of-life care and support are needed when a parent has been diagnosed with a terminal illness or a failure to thrive. A terminal illness is a diagnosis given by a physician, who, based on a physical evaluation, determines a patient has less than six months to live if the disease follows its natural course.
Step 1
Consult with the primary physician involved in your parent's medical case. Ask the physician for care information regarding your parent's particular disease if you have questions. Have a signed durable power of attorney, or DPOA, to have access to your parent's medical records and care. If you don't have something that has been set up in advance, even if you are next of kin or primary caregiver, you will not be able to consult with your parent's medical care team.
Step 2
Sign all papers relating to end-of-life care with a hospice care team. A nurse and social worker will visit your parent at their home and have paperwork for you both to sign. Two of the most important papers you and your parent will sign are a Do Not Resuscitate Order and a consent-for-hospice care. The DNR must be signed by the patient and the next of kin along with a hospice representative as a witness. The patient must check whether or not he wants to be resuscitated. Both forms must be signed by the patient unless he has designated someone else in his power of attorney or living will to sign for them. The day both forms are signed is the day the patient and the family consent to hospice services.
Step 3
Retrieve patient care information from your parent's end-of-life care team. This includes a hospice care team that involves a nurse, home health aide, social worker and spiritual care team member. Know and understand how each team member will assist you with caring for your parent. The nurse will make sure the patient is comfortable and receiving the right amount of medicine. The home health aide will bathe and groom the patient. The social worker will meet the psychosocial needs and concerns the patient and the caregiver face emotionally and financially. The spiritual care team member will provide spiritual guidance and religious support.
Step 4
Study the medications that your parent is using. Educate yourself when and how to administer them and what the side effects are. Seek assistance from the hospice nurse or medical doctor if needed. Understand that you must carefully guard narcotics and dispose of them at the time of death.
Step 5
Learn how to physically care for your ill parent when support staff are not available. This includes changing the linens while the patient is bedridden, emptying the catheter, dressing and bathing. Understand the concepts of the oxygen meter and tank. Make sure the nasal tube is inserted into the nose and the cord is not choking the patient, and make sure the meter has adequate water and is working properly.
Step 6
Look for signs of end of life. According to agingcare.com, the patient may demonstrate some of the following signs: increased weakness, gray or blue skin, gurgling and rattling sound in the mouth and chest, skin that is cool to the touch and terminal restlessness. When the patient shows no respiratory signs, no pulse, and the pupils are fixed and dilated with the mouth slightly opened, the patient has passed away. When ready, call the funeral home, not 911, to come and pick up the body.
Tips and Warnings
- Follow up with your parent's hospice care team staff. Set up a time to receive bereavement counseling from a staffed social worker or grief counselor. Find support through your local hospice organization. Attend regular grief recovery groups and seek individual help as needed.
Things You'll Need
- Signed DNR and Consent forms
- Signed Durable Power of Attorney or Durable Power of Attorney for Health Care
- Durable medical equipment: oxygen tank, over-the-bed table and hospital bed
