It can be extraordinarily challenging to watch a loved one slip away physically or cognitively. Stress runs high… medical bills mount…and most people are poorly prepared to see their once-independent parent or older family member decline. Your natural tendency is to want to take control of the situation.
“Mom, you have to eat! We have to keep your weight up!”
“Dad, please have the cancer removed. You still have a few years left.”
But aging—and the serious medical challenges that frequently accompany it—can’t be controlled. Strong emotions such as fear, anger, guilt and anxiety drive our decisions when reason, empathy and compassion should be at the wheel.
When attempting to handle medical decisions for family members, it’s helpful to keep a few strategies in mind so that you remain objective and can make sound decisions guided by logic, not emotion. Bottom Line Personal asked Amy O’Rourke, MPH, advocate for aging and fragile older adults and their loved ones, about strategies you can use to help get through these difficult times.
Strategy #1: Ask yourself, What does my loved one want? It’s natural to want to do whatever possible to restore a loved one’s health. But the reality is that it’s often not feasible or in his/her best interest. When someone is nearing the end of life, surgeries and procedures may cause more harm than good, and repeated trips to the hospital are stressful and increase risk for infection.
Example: Your mother, in her 90s with severe dementia, faints several times, and the cardiologist suggests a pacemaker—a life-prolonging measure. But if your mother has previously said something along the lines of, “If I lose my mind, don’t do anything to make me live longer,” a pacemaker isn’t the most benevolent option. The doctor’s opinion matters, of course, but Mom’s matters more, and if you are her appointed medical decision-maker, you should make the decision you know she wants.
Best: Have these hard conversations ahead of time, when your older loved one is healthy and clear-minded. Ask specific questions such as, “Do you want us to take extraordinary measures to save your life if you need a ventilator to live?” and “Will you live in a nursing home, or do you want to try to age in place?” Learn your loved one’s preferences for more subtle medical dilemmas, too—does she want steps taken to prolong her life if she can’t leave her bed, use the toilet or must consume appetite enhancers or puréed meals? Many older people would say no.
You can use a real-life event to prompt these conversations, such as when your father’s 85-year-old friend has a stroke and his family chooses to keep him alive even though he is in a coma and his chances of waking up are poor. That’s your opening to ask your father, “If that happened to you, what would you want us to do?” Most older adults want their last years to be full of joy doing things they love—reading books, eating desserts, taking walks. If they can’t meaningfully interact or communicate with loved ones, they may feel ready to say their final good-byes. Watching a loved one decline is heartbreaking, but you should help him the way he needs to be helped, even if it conflicts with your own desires. It’s about the quality of his remaining years, not the quantity.
Strategy #2: Try to work with your siblings, not against them. Tension between family members is extremely common when an elderly loved one is ill, especially if a dysfunctional dynamic existed previously. One sibling may think that the parent should reside in a nursing home, while another doesn’t. Or the sibling who sees the parent daily may be less inclined to push for life-saving measures, whereas those who live far away—and are less aware of their parent’s decline—may press for more aggressive actions.
Best: Have a family conversation early on in which you ask your aging loved one to declare who he/she wants to serve as power of attorney (POA). Make sure the proper documents, including all legal, medical and financial records, are filled out and safely stored.
If your loved one hasn’t communicated who he wants as his POA, gently raise the topic by asking, “If there is a crisis, who would you like to legally represent you and follow your wishes?” The appointed decision-maker should then be given everyone’s support.
Helpful: Consider divvying up some of the responsibilities— the person with the POA could be in charge of medical decisions and patient transportation… another person could handle bill-paying and investment monitoring… etc. This can help avoid the common trap of all responsibilities falling to one family member, usually the grown child who lives locally.
If you have never had this conversation and your family member is now sick and unable to speak for himself, it will be up to the court to decide which sibling (or possibly your other parent, if he/she is able) will be granted POA.
Strategy #3: Slow down the discharge process. Most hospitals and rehab centers function on urgency, driven to “fix” your loved one’s medical problem (or at least put a bandage on it) and discharge him. But you don’t have to move at their pace. Important: All facilities must ensure a safe discharge, so if you tell the administrators that you aren’t certain you can provide a safe environment to care for your loved one, they must reconfigure their discharge plan. If you work full-time…or haven’t found a caretaker or the necessary medical equipment yet…or simply don’t feel emotionally or physically prepared, you can say, “I am not ready, and it’s not safe for my loved one to go home.”
If Medicare is rushing the process, you can appeal the discharge while your parent or relative is in the hospital. Or tell the doctor that you need 24 hours to process any decisions. Slow things down, so you have time to make smart, strategic choices while also caring for your own mental and physical health during this stressful time. If you run into trouble, contact an aging life care specialist (AgingLifeCare.com) who is trained to work with families and health-care facilities during long-term medical challenges.
Strategy #4: Consider placing your loved one on hospice care at a nursing home or assisted-living facility if he doesn’t want life-sustaining measures taken (or if you, as the appointed decision-maker, don’t). Doing so tells the staff that your loved one does not want to go to the hospital, which will only prolong life and may increase the risk for infection or complications.
Example: One family hired me to advocate for Ernie, a 94-year-old grandfather—he repeatedly tried to stand up unassisted and then fell over, and he had begun trying to pull out his catheter. Ernie was taken to the emergency room, where he became combative. The ER doctor wanted to admit him and have the catheter replaced. As Ernie’s health-care advocate, I explained that he had been ready to die for several years and had stated that he did not want to do so in a hospital. The doctor said, “He will die without the catheter.”I acknowledged this and asked for Ernie to be sent back to his nursing home’s hospice. Several days later, surrounded by the staff that had grown quite fond of him, Ernie peacefully passed away.
To qualify for hospice care, Medicare requires two physicians at first admission to hospice to certify a terminal diagnosis…meaning that the patient likely will not live more than six months if the disease is allowed to take its natural course.
Important: Medicare covers hospice care. Hospices say six months is the maximum allowable stay, but as long as insurance continues to pay and the diagnosis is terminal, the hospice will continue extending.
A hospice physician or nurse will manage your loved one’s care, keeping him comfortable but avoiding extreme life-prolonging measures. As the POA, you must be crystal clear about what should or should not be done—“Mom is diabetic, but we do not want her to continue receiving insulin.”
Strategy #5: Take care of yourself. When a loved one is deteriorating, you’re constantly worried about whether you’re doing the right thing. But anxiety can lead to bad decisions. Seek counseling, especially when there are unresolved family issues at play.
Example: One client, a grown daughter, moved her parents into an independent- living retirement community despite the fact that her mother was severely memory-impaired. She did this to avoid upsetting her father, who wouldn’t even consider assisted living. Without a memory-care facility to help, her mother began wandering and became confused and agitated. Result: Her parents had to be moved out a week later.
To help manage your emotional pain and come to terms with your loved one’s prognosis, look for a therapist who specializes in adult children of aging parents. If you have unresolved issues from childhood, make sure your therapist knows about them. You also can reach out to friends, someone from your temple or church, even a member of your book club or yoga class—someone who has been through this situation—and use him/her as a sounding board or to vent.