Aging can be a difficult process to accept. Many older adults associate illness with loss of independence or becoming a burden on loved ones. This may be why they don’t always tell you how they’re really feeling.
It may be up to you to recognize the signs of declining health and the need for a different type of care. Understanding potential signs that the end may be near helps reduce anxiety and allows you to honor your aging parents' wishes.
Many families wait to call hospice until the final days and weeks of their loved one’s life. In fact, nearly one-third of Medicare patients who received hospice in 2016 only received it for seven days or less. But if the patient is eligible, they can receive specialized care, medications, medical equipment and supplies related to the terminal illness months earlier. So how do you know when it’s time for hospice?
Here are a few signs that it may be time to consider hospice care for your aging parent:
1. Treatment is no longer working and/or they no longer desire aggressive intervention.
If your aging parents have a terminal illness and their goals include comfort, time with loved ones and improved quality of life, hospice care may be the answer. Hospice care focuses on pain relief and symptom management rather than curing the illness.
"Often times, the parent begins mentioning subtle things to their families and caregivers," says Sheena Cupid, MSN, RN, CHPN, director of hospice clinical staff development at Amedisys. "It's important to begin paying attention to the subtlest of comments and then openly discussing the person’s wishes and what matters to them. Keywords we often hear that are cues for further conversation include, 'I'm tired' or 'I just want one day without pain or to sleep comfortably.’”
Hospice care can begin when a doctor decides the patient’s life expectancy is six months or less if the illness follows its usual path. The doctor can recertify the patient for longer periods if your loved one lives beyond six months. Hospice care is 100% covered by Medicare, Medicaid and most private insurance providers for eligible patients.
Some of the most common illnesses in hospice care are:
- Heart disease
- Lung disease
- Alzheimer’s disease and other forms of dementia
- Liver disease
- Kidney failure
- ALS (amyotrophic lateral sclerosis)
2. Their symptoms are getting harder to manage.
Research shows pain increases in the last two years of life, becoming most intense in the last four months. Uncontrolled pain can lead to other issues, including shortness of breath, restlessness and anxiety. It can also prolong the grieving process for loved ones. If you notice an increase in pain or other difficult symptoms such as nausea, vomiting, trouble swallowing or pressure ulcers that don’t improve with treatment, hospice care may help.
“Sometimes people only think hospice is an option if they have cancer or have been told they only have days to live,” says Cupid. “In reality, we can help much earlier and this is essential in establishing the patient's end-of-life care goals.” Health care providers determine eligibility based on several factors, including the patient’s overall prognosis and their specific goals of care.
3. They’re visiting the doctor or hospital more frequently.
Use of the emergency department typically increases as people age, particularly among older adults over 75. Multiple doctor or hospital visits in the last six months can be an important sign of declining health.
4. They need a lot more help than they used to.
Your aging parents may no longer be able to do personal care activities as they once had, such as bathing, getting dressed or eating. Or perhaps they were once able to move about independently and now they are using a wheelchair or walker. If they’re not feeling well most of the time or they stopped doing things they used to do, these are signs they may benefit from hospice services.
5. They often seem confused or restless.
Older adults at the end of life may feel confused or agitated, even combative at times. They may not know where they are or what’s happening around them. Some people perceive things that aren’t there (hallucinations) or have false beliefs (delusions) that they are much stronger than they are or that people are trying to harm them.
6. They’re less able to communicate.
Decreased circulation, hearing and vision problems, and other issues may affect your aging parents’ speech and ability to follow conversations. As a result, they may start to withdraw from activities and people they love.
7. They don’t have much appetite or are losing weight for no apparent reason.
Check your aging parents’ refrigerator and observe their eating habits to see what they’re eating and how much. Reduced appetite and unexplained weight loss can be signs the body is slowing down or isn’t digesting food properly. For example, someone who has been on tube feedings for years may now complain of stomach upset. Or perhaps they aren’t eating much, or they don’t feel hungry but still try to force themselves to eat.
8. They sleep much of the time.
As part of the body’s process of slowing down, your aging parents may spend more time sleeping. You may notice that they rest in a chair or bed most of the day.
9. You’re feeling stressed and overwhelmed as a senior caretaker.
Your stress levels escalate as your aging parents need more help. It is an act of love to admit you need caregiver support and use all the resources available to you to provide the best care for your parents.
How Hospice Care Helps
When people wait to get hospice care until their final days and weeks, they miss out on the full benefit of hospice services. Hospice care helps with end-of-life care by providing:
- 24/7 on-call medical director and nurses available to meet patients in their home
- Medical equipment and supplies
- Uncomfortable symptom management
- A safe, peaceful environment
- Relaxation and comfort through music, art and other tools
- Spiritual support with a chaplain
- Assistance with daily living activities like bathing from a hospice aide, which allows family members to focus on quality time with their loved one
- Emotional support and community resources from a social worker
- Help with household tasks from hospice volunteers
- Bereavement counseling to help loved ones process grief
“Sometimes people think hospice means giving up hope. It doesn’t. It means that how we treat the person is different,” says Cupid. “In hospice, we’re focused on the patient and the family. We make sure their needs and priorities drive the plan of care.”
How to Start the Hospice Conversation
Understand the options. Learn as much as you can about end-of-life care options such as hospice so that you can answer questions and offer reassurance to your aging parents. You may want to talk with a few hospice agencies so you understand the options and eligibility requirements.
A member of the hospice care team may be able to talk with your aging parents and help decide if hospice is the answer. “If the family thinks hospice might be the next step but their loved one is resistant, or vice versa, it can help to have the hospice team meet with the family,” Cupid advises. “We can provide education and share the message, ‘We’re here when you’re ready.’”
Start talking early on. Talk to your aging parents about their preferences for end-of-life care, ideally before their health is failing. “It’s about open and honest communication,” says Cupid. “Ask open-ended questions about what hospice means to them, and educate them about hospice services and benefits.”
These conversations can be difficult, and your parents may not be immediately receptive. That’s why it’s important to revisit the subject more than once. If you have these talks before a crisis strikes, your elderly parents will receive better care that aligns with their goals and you’ll feel better about end-of-life decision-making.
Offer a listening ear. It can take time to understand the benefits of hospice care. Listen to your aging parents’ concerns and empathize with the difficult decisions they are facing. Emphasize that hospice care provides the gift of a dignified and meaningful death and give them time to process their options.
Ask to attend a doctor’s appointment. If your parents agree to have you join them at the appointment, share your concerns with their doctor and ask to have a conversation about hospice.
You are in a unique position to understand when your aging parents need help and advocate for their wishes. With your help, your parents can have the best quality of life possible at the end of life.