Jenni Levy ’82 is an internist in Allentown, Pa., who specializes in palliative medicine and has her own business assisting in the creation of advance directives and providing advice about end-of-life care.
There was an unmistakable thud in my parents’ bedroom. I ran to the door and knocked, but when the answer was “Go away,” I marched in.
Dad was on the floor, partially dressed, and furious. My gentle, soft-spoken father ordered me, loudly and profanely, to leave the room. I have no idea how my mother, who was half his size, got him upright, because I returned to the guest room like the obedient daughter I’d always been. In the morning we followed the family custom and pretended it hadn’t happened.
It was no surprise. Dad hadn’t been able to walk well for a couple of years by that time, but he and Mom had remained in the four-story house of my childhood. My brother and I had decided to talk to him — but not that weekend. It was Dad’s 70th birthday, and we didn’t want to upset him.
Dad brought it up. “Mom wants me to talk to you about last night,” he said, after the birthday dinner. “I’m fine.”
“You sent me to medical school. I paid attention,” I said. “You are not fine.”
I talked about safety and making things easier on my mother. He said I was overreacting, and he’d been a doctor longer than I had, anyway. After 20 minutes, he said, “I hear you,” and that was that. My parents did not move.
As a palliative-care physician, I’ve worked with scores of families in the same situation I struggled with. I’ve learned that no matter how much you know — and how well-meaning you are — helping your parents as they age is a struggle. We do what we can so that we can live with ourselves. I can’t make it easy, but I can share my answers to some of the concerns I hear most often.
How can I get my mother to sell that house and move somewhere more manageable? The short answer is: You can’t. If Mom is still capable of making her decisions, then you have nothing to say about it. You can offer, suggest, and support — but you can’t control her. We want our parents to be safe; they want to be independent. You may have influence if you can help her feel that you respect her choices and appreciate her point of view. If she doesn’t feel judged, she’s more likely to listen to you.
Start by asking questions and really listening to the answers. Try to understand why she wants to stay in the house — what does it mean to her? What is she concerned about if she moves? Instead of responding with counterarguments, reflect back what you hear: “You’ve lived in this house a long time, and it holds a lot of memories. It also sounds like you’re worried you’ll run out of money if you have to move.” Look for ways to make the house safer — if you’re concerned about the stairs, can you rearrange things so she doesn’t have to go up and down? Can you put in a stair lift? A home-safety assessment from physical and occupational therapists may provide options.
Be clear about your own limits. As difficult as it is to say “no,” it’s necessary. If your parents are unrealistic about their abilities, that doesn’t mean you have to agree with them or support them.
We do what we can so that we can live with ourselves. I can’t make it easy, but I can share my answers to some of the concerns I hear most often.
How do I know if Mom is capable of making her own decisions? And what do I do if she’s not? Dementia is not inevitable. Most of us notice some decline in our mental abilities, but when that decline interferes with our ability to function, that’s not normal. If you’re concerned about your parent’s memory, talk to the doctor. Privacy laws may prevent the doctor from sharing information with you, but they don’t prevent you from sharing information with the doctor. This is best done in writing, so your concerns will be entered into the chart. If possible, go to the appointment with your parent and ask Mom or Dad to sign a form giving the doctor permission to talk to you.
Dementia isn’t the only cause of memory loss and cognitive decline. Many physical illnesses can play a role, as can alcohol, prescription medications, and over-the-counter drugs. A comprehensive geriatric evaluation can help identify these problems. Geriatric assessment programs include a social worker and often mental-health providers. They can help determine if your parents have the capacity to make their own health-care decisions. They can also identify other resources and support to help everyone involved, including families and caregivers.
What paperwork do I need if I have to make their decisions? If you must step in and make decisions for your parents, you will need to get power of attorney. This must be done before they lose capacity. The power of attorney for health care is not the same as the power of attorney for legal and financial decisions. An elder-care attorney can help you complete the appropriate paperwork, or you can find documents at fivewishes.org, which offers the health-care power-of-attorney document and a living will for a small fee and does not require an attorney. If you obtain documents online, check to make sure they are legal in your state.
If I have the health-care power of attorney, do my parents need a living will? A power-of-attorney document identifies who will make medical decisions. A living will provides guidance about what those decisions should be. Some states limit the decisions someone with power of attorney can make. Pennsylvania, for example, does not allow a health-care agent to prevent insertion of a feeding tube without written instructions from the patient, so in Pennsylvania you need both.
A living will should be more than a set of checkmarks about tubes and machines. You want to know what “quality of life” means and what tradeoffs are acceptable to get there. Does your dad want treatment that will save his life if that means he won’t be able to care for himself? It’s more complicated than saying “Do everything” or “Pull the plug.” I had this conversation with my mother shortly after she was diagnosed with Alzheimer’s dementia. She made it clear that she did not want any treatment that was going to cause suffering, even if it prolonged her life. She wanted to stay home and be comfortable, no matter what. That conversation guided the decisions my brother and I made over the last years of her life, and we had the comfort of knowing that we were doing the right thing.
I don’t think my dad should be driving any more. What do I do? Losing the ability to drive is a terrible blow, and many people continue to drive when they should not. Your dad’s doctor can make this determination (you may need to prompt the physician), report to the Department of Motor Vehicles, and deliver the bad news to Dad. Many states will honor your confidentiality if you report an unsafe driver to the DMV, and may require the driver to take a test. You may also need to remove the car or the keys if Dad decides to ignore the doctor or the DMV. That will be difficult — but not as difficult as living with the knowledge that your parent killed or injured someone when driving.
If there’s any question about your parent’s ability to drive, a Mature Driver Evaluation may settle the issue. It will check reflexes, vision, motor control, and other factors of safe driving.
How do I find a driving evaluation, an elder-care attorney, or a geriatric assessment? Every county in the United States has an Area Agency on Aging that provides support and information for elderly residents and their families. It can help you find local providers for in-home care and residential care as well as other services. Staff members also offer connections to support groups and resources to help you take care of yourself, which is essential.
My sister doesn’t think Mom needs this much help. How do I convince her? Try to focus on interests, not positions. Your position is that Mom needs in-home care; hers is that Mom doesn’t. Your interest is keeping Mom safe. What’s your sister’s interest? What is she worried about with in-home care? Ask honestly curious questions and listen to the answers. If you still can’t agree, then you need to decide if you are worried enough about Mom to take action that might damage your relationship with your sister.
My parents stayed in their house for the rest of their lives. My father lived two more years with those four flights of stairs, and six years after he died, my brother and I had to find full-time care for my mother. That wouldn’t have been my choice for her, but it was hers for herself, and we honored it.
Our parents are lucky not to grow old alone. We’re also on the journey, and it’s not an easy one. We need to be gentle with ourselves as well as with them.
3 Responses
Jim Maroney
5 Years AgoFamilies of the Elderly Have Rights, Too
I was heavily involved in the care of my parents and in-laws until they died. My approach to their care was far more interventionist and aggressive than most caregivers can stomach. However, I firmly believe that my parents and in-laws had more comfort and dignity in their declining years than they would have been had I taken the more "laissez-faire" approach that most recommend. I told my parents that it is not all about their rights, but the rights and feelings of the entire family. Elderly drivers can be more dangerous than drunk drivers. I just took my mother's keys and told her that it is wrong to endanger others. My father-in law was more rational. He voluntarily stopped driving and moved in with me when he almost died alone in his home due to a fall. I have been told by immigrants from non-Western cultures how shocked they are to find out that in America, we let our parents die alone and unattended!
Jack Cumming ’58
5 Years AgoChallenges of Aging
The April 24 issue has an article (What I Learned) with a subtle, likely unconscious, bias. It involves the dance for influence that often plagues relations between parents and children. Those of us from an earlier generation remember a 1960s TV ad, the punch line for which was, “Please, mother, I’d rather do it myself.” No one liked the hovering mother directing her daughter in how to season the cooking.
Parents, as they age, feel the same way when children try to take over. If the aging parents need help, they can ask for it. Still, there is a movement within geriatrics and gerontology to voice the frustration — even anger — that can develop when their parents resist controlling children. This form of ageism — bias toward older people — appears under headlines like “Caring for Our Parents,” or in PAW as “How To Help Your Aging Parents.”
One geriatrician even offers a “Helping Older Parents Boot Camp” that excludes old people. That exclusion may be well intentioned, but it’s ageist. Ageism is a growing form of bias that often goes unperceived, just as biases of the past were often unperceived by those who harbored the prejudice.
It can be empowering to fulfill a wish common to children to reverse parental power. Still, well intentioned or not, treating legally competent parents like children is ageist. Perhaps PAW can balance the article with something more comprehensive that addresses the challenges of aging from the perspective of those who are living it. This may be one of the last frontiers of hidden intolerance in our society.
Norman Ravitch *62
5 Years AgoParents and Children: Constant Strife
Permit me, please, to indulge in a bit of cynicism! Parents and children from the age of several months in a baby's life until who knows when (at 20, at 40?) are in constant strife. That is the nature of the beast: parents trying to get kids to do the right, the safe, the desirable thing and children trying to do what they want. This actually never ends; at the period toward the end of life the oldsters are the children, trying to do what they want and the adult children are trying to get the parents to do the right, the safe, the desirable thing.
There is no answer. The strife is part of the game. All one can do is to try in dealing with aging parents to be true to what is considered kind and merciful, even if the aging parents won't see it that way. Yes, other cultures are better at this than Americans; perhaps we are more selfish, but I suspect even in more traditional societies the reverence for the aged is more a facade than a reality, like religious faith that is not genuine in more than most so-called believers; at least I have found this to be true. Religion is claimed for respectable reasons, not true belief. The same with caring for the aged.
As it turns out, of course, death will finally have the last word. Then you will either be relieved to be finished with your obligations or you will be guilty, or both.