Chapter 4 - On Your Mark, Get Set...
Having the Big Talk with Parents and Siblings

If you’re one of us—somebody born between 1946 and 1964—and if either of your parents is still alive and still living at home, you’ve got a challenge: mom or dad is probably going to have to consider a change of circumstances, which might include a transition from the family homestead to another Great Place. Unlike previous generations that automatically brought an aging parent or two into their homes, many of us don’t have that luxury. We’re still earning a living and prevented from being the best caregivers even on a part-time basis.

Worse, we don’t like to think about aging. We much prefer denial and often delay this conversation about a course of action until forced to do so by a health crisis. Now, add the emotion and the tension this brings to the conversation and you are far more likely to make mistakes, hurt feelings and carry the burden of the resulting guilt. How comfortable are you with initiating the conversation about the need for possible change with your parents? You may perceive they need more help to live at home or you may think they have to move somewhere with medical oversight, but do you know what they think? Are there other family members that should be part of this discussion? The earlier you have a talk or series of them, the less difficult it will be.

When mom and dad are still healthy the talk is really about who they will become when they get “old.” At the time that mom breaks her hip and her physician tells the family that she cannot go home, you are forced to make a decision in crisis. Serious business, indeed, for which few of us are prepared.

This is an ideal time to think of your children. Why not tell them all the things they need to know? This is a great generational exercise wherever you are on the family tree. Fortunately, others have gone before you and dropped breadcrumbs along the way to guide us.

Starting Out

Nobody wants to talk about getting older, the inevitability of aging and what lifestyle changes will be necessary for the elderly parent. Worse, it’s particularly difficult when the truth-telling comes from the children. The most important thing in almost any relationship is the ability to actively listen to each other. This is a term that is tossed about at work, highly recommended when dealing with a teenager or as a standard that should be upheld in any good marriage but what does it really mean to “listen actively?”

Active Listening

A method of listening that is intended to improve mutual understanding. When you actively listen you focus on the person who is speaking. You try to block out other distractions and thoughts, especially those about your beliefs and what you are going to say next. You often check with the speaker to make sure that you understand what they have said. You might respond by saying something like, “What I hear you saying is…” This works very well in emotionally charged situations where the parties do not necessarily agree. It gives them the chance to process the other’s position and make clear that they have heard, and understand, his or her perspective. The listener focuses, not just on the words being spoken, but also on the body language and conversational tone used. So, responses might also be, “You seem frustrated (unhappy); can you tell me what that is about?” This type of listening can help to resolve current problems and ward off future conflicts.

Here are some suggestions for getting started talking to a parent about their future and what it might hold:

• Refer to someone else’s unfortunate experience. Many of our parents have recent and unpleasant memories of the difficulties that friends or relatives have had in this situation. Maybe it was the elderly cousin whose health precipitously deteriorated and required the nieces and nephews to scramble to get him into eldercare. Perhaps it was the neighbor who broke her hip and her son in Australia had to take a month away from work to solve the problem without any guidance. Considering the situation as a necessary conversation for your own piece of mind, is essential. The family—not just the parent, but also you, your spouse, your siblings and the extended family—shares this challenge. This approach broadens the focus of the discussion and preserves mom’s or dad’s dignity. Newspaper or magazine articles can be used to start the conversation. We are usually able to find a related letter in a Dear Abby or other advice column in our local paper. You might begin like this: “Gee, Dad, I guess I don’t know anything about what you want me to do if you find yourself unable to live at home. I’d feel a lot better if you would tell me, so I won’t have to guess.”
• One step at a time. Some parents will be outraged at the very thought of giving up their home and moving into a strange environment. That’s perfectly understandable. After all, the emotional attachment to home—“There’s no place like home.” “Home is where the heart is.” “The green, green grass of home”—runs deep in all of us. Sometimes, it is just a matter of processing on the part of everyone involved. The state of denial is overcrowded and it may not always be just the parent who lives there. You may find that siblings or other family members find aging and the inevitable change it brings difficult to accept. As in most relationships, this may be an exercise in negotiation and compromise. Everyone has a solution in mind. We all think ours is best. Try to begin with an open discussion about perceived problems and possible solutions. In your early discussions a small victory may be recognition that a problem exists. Only then can you move on to consideration of potential solutions. The focus must always be on your parent’s health, safety and happiness.
• Open the parties to possibilities. If you, your siblings and parents all believe that there is one right solution to a perceived problem--and it is their right way—you’ll make little progress. Be open to consideration that more than one good option may exist. It is just a matter of finding one that works best for your parent and the family.
• Take the time for the parties to get used to the idea that change is imminent. As we age, we can be increasingly risk-averse. Our sight, hearing and body may begin to fail, and the world around us begins to shrink. Familiarity is comforting and change is scary. So start out by simply exploring possible alternatives. Many of us have discovered that convincing our parents to experiment with the idea of senior living (“Let’s drive over there for a few minutes just to see what it’s like”), rather than trying to steamroll the decision, pays off. Perhaps a visit can stimulate real interest that will in turn motivate a change. This is the major reason we have provided videos with many of the housing options in the Great Places Housing Guidebook. Once you have watched the videos or had a visit or two, ask their impressions. What is it they want? What are their interests? What are their needs? Do they perceive that a move could improve their life? Now, given what you learn, you are better prepared to determine the best way to proceed. Many residents of assisted living facilities tell us that they were staunchly opposed to a move until they were hospitalized and needed to recuperate in a transitional facility. It wasn’t a permanent move so they found they were far more open to the experience. They discovered, much to their surprise, how much they liked the environment. After the healing and the return home, the parent was the one who initiated discussions about a permanent lifestyle change.
• Get help from outside if you need it. You may encounter enormous resistance. Recently, a friend’s 86-year old mother was diagnosed with incurable cancer. Her father was also in poor health but they’d been living in their home for 60 years. The three daughters assumed that mom and dad would move to a care facility where both could receive the levels of care they required. They told their dad that they had decided this would be best and were astonished by the vitriolic response. He told them that aging parents were the responsibility of their children. He expected all three daughters to figure out a way to move home for extended periods of time and shoulder the care. The girls were all in their fifties, fully employed, years away from retirement and with families living hundreds of miles away. The sisters did the best they could but their parents were moved to a skilled nursing and hospice care facility within weeks. It has been four years and both parents have passed away. But the sting of this conversation and the guilt these women carry remains. So be prepared.

My husband tells me that lawyers never ask a question to which they don’t already know the answer. That may be exactly what you are doing. If you are blindsided and/or encounter seemingly insurmountable resistance, seek help. Third-party experts can be blended into the experience. Sympathetic strangers—clergy, experienced friends, geriatrics experts, compassionate health care workers—can defuse the situation and provide useful guidance.

Next Steps

Now that you’ve got the conversation under way, what are the questions you’ll want to ask to prepare for the housing transition? Let’s start by examining the current living situation.

• “Mom, do you want to live where you are as long as you can? Are there some improvements to your house we should begin to make so this will be possible?”
• “I’ve noticed that you are a little tired lately. Would you like to have someone help you with some tasks around the house?” “If you think you can handle things for now, is this something you might consider in the future?” “What arrangements would you like us to make?”
• “I know you love your home, but even with the kids mowing the lawn and taking you shopping, you seem a bit tired lately. Are you finding the chores more work than you want to tackle these days?” “What would you think about moving into a more manageable place—a condo or a smaller apartment--at some point?”
• “When you feel living at home is no longer a good option for you, would you want to live with me, or someone else in the family? Would some form of senior housing be an acceptable option for you? What do you know about senior housing, assisted living, those kinds of options? Maybe we could make a list of the things that are most important to you and see if we could find a good match. Does that sound like a good idea?”
• “Could somebody in the family begin to find out about senior housing facilities that might be a possibility for you in the future? How would you like to go about it? Have any of your friends moved into senior housing that they really liked?” Or, “When you have visited friends in their senior communities, have any of those facilities appealed to you?”

Turning to questions about health:

• “Dad, do you find you still have the energy to do the shopping, prepare meals, do laundry and personal care, and still continue to keep up the house and yard?”
• “Do you feel comfortable driving or taking public transportation to do the things you need to do?”
• “Do you find it difficult to get up and down the stairs, get to the bathroom, and pick up the mail and your newspaper?”
• “Are you having any trouble doing the exercises your doctor has recommended or remembering to take your medications?”
• “Would you be willing to let us talk with your doctors about your health? Could we go with you to your next doctor’s appointment to find out more about your medications and any problems you’re having?”
• “Have you made any decisions about the kind of medical care you may want in the future? Would you want someone else to make these decisions for you if you are unable to do so for yourself? What are your thoughts about assistive devices—ventilators, feeding tubes, for example—to keep you alive? Do you have records of the decisions you’ve made? Where do you keep them?

We know that the world is not a perfect place and that many adult children find themselves up against a brick wall. When they attempt to start the conversation, they are greeted with, “Oh, sweetheart, why do we have to talk about those kinds of things now?” Or the parent simply changes the subject or gets really angry.

Put yourself in their shoes. You would hate the idea of getting old, or of having some disease ravage your perfectly good body and you probably wouldn’t want to talk about it. So, don’t lecture, but don’t avoid the issues forever. If you decide to back off for the moment, that’s okay. Just don’t quit. Go at it again, on a different day, soon. If you are in a crisis situation, you may not have the luxury of time. Get any help you can from your parent’s “influential circle”-- compassionate health care providers, ministers, friends, preferably someone to whom your parent will listen. During this struggle, remember that the only person you can change is you. Dad isn’t going to have some great epiphany at his age. And if you continue to try to change him it will only frustrate you both. Seek an accommodation that is, if not perfect, at least palatable and most important, one that you and your parent selected together.

Next Steps

Hopefully, the Big Talk has gone reasonably well. Mom and/or dad has been willing to talk, perhaps hesitantly, and you’ve made some progress in finding out about their current and long-term housing needs and preferences, as well as some health and related issues that will factor into these decisions. Yet you continue to have concerns about their present living situation. How safe are they right now? Are there some problems that need to be addressed right now? Ask your parents if you may take some steps to make you both more comfortable:

• A physical inventory. Are there safety hazards—loose rugs, carpeting that tangles in canes, walkers and wheelchairs, furniture arrangements that make navigation difficult or dim lighting and the like—that need to be addressed? Is the house as clean as it needs to be? Can these problems be easily fixed, for example, by installing handrails in the stairwells and grab bars in the bath, or by hiring periodic household help for in-home bathing or medical monitoring? Could communication be improved by installing a phone with large numbers and amplification? Would handrails help to protect against falls or should you install a ramp or lift on a staircase?
• Dietary issues. Are they eating well, or are there questions about their eating habits? Check the contents of their refrigerator to make sure that they have healthy food on hand, and that due dates haven’t expired. Consider a joint shopping trip to the local supermarket to stock up, and pick up foods that are easily prepared. Perhaps there’s a way to have groceries or meals delivered by Meals on Wheels or other local service providers. Another option is meal service at the local community or seniors’ center, which could have the added benefit of introducing mom or dad to this aspect of senior living. Once again, outside expertise might be useful. Professional advice, for instance, from a registered dietitian or licensed nutritionist, can supplement your suggestions for improvement.
• Finances. A common concern about elderly parents is their financial decision-making. This is another touchy subject, because they may consider outside involvement in financial matters—even on the part of family members—a potential loss of control, similar to limitations on driving or similar restrictions on previously-enjoyed freedoms. Would they consider a joint checking account? How about a little assistance with paying bills? Or perhaps a two-signature account?
• Fraud. Seniors are likely targets of scams, frauds and identify theft. Scammers offer the allure of inexpensive and alluring products—jewelry, clothing, easy money—and perhaps best of all, the sound of a friendly voice. This is another area that deserves careful monitoring. Note excessive credit card charges and suspicious purchases.

This is a time when the entire family dynamic is tested. The relationship between parents and children is only one element. The relationship between the siblings can also be challenging. Some families manage for decades to see each other at births, weddings and family holidays, but when they are suddenly thrust into an intense daily contact, they find they are somewhat dysfunctional. They are used to running their own households and each may want to take charge. They disagree about what should be done. There is a power struggle. We’ve witnessed some very nasty behavior by otherwise fairly civil individuals. The basis for these fights is often jealousy, power or greed.

Try negotiation. Determine, as best you can, the expectations of the family members. Seek accommodation for everyone with your parent’s best interest in mind. This may take professional assistance. Seek the help of counselors, ministers and lawyers when necessary. Again, the only person you can change is you..

Here are some helpful resources:

• Fraud: National Fraud Information Center, the source for Internet and telemarketing fraud: www.fraud.org. Fraud hotline: 1.800.876.7060. Attorneys General in many states have consumer fraud divisions that can be useful as well. The national Do Not Call Registry: www.donotcall.gov/1.888.382.1222.
• Identity Theft: Contact the fraud departments of each of the three major credit bureaus. Tell them to flag the file with fraud alert. Equifax (1.800.685.1111); Experian (1.888.397.3742); Trans Union (1.800.916.8800). Make a report to your local police report and the Federal Trade Commission Identity Theft Hotline (1.877.438.4338). Check out www.101-identitytheft.com, which provides news and information about this subject.
• Home Modification: Local agencies may have funds available to repair and modify homes. Check your state website listed in the Resource section of Toolkit. The Eldercare Locator (1.800.677.1116) can help you find your local agency. Community Development Block Grants also help citizens maintain and upgrade their homes: 1.202.708.1577; www.hud.gov. Local housing authorities have grant/loan programs, including seniors and adults with disabilities. The USDA Rural Development offers low-interest repair loans to very-low income and elderly homeowners (1.202.720.5177; www.usda.gov). Another useful resource is the National Center for Seniors’ Housing Research, which provides information regarding the latest seniors’ housing trends, technologies and issues: 1.800.638.8556; www.nahbrc.org/seniors).
• Seniors’ Nutrition: Information about local meal programs can be found at 1.800.677.1116. Other resources: National Center for Nutrition (1.800.366.1655); American Dietetic Association (www.eatright.org); and National Cancer Center Institute’s 5 A Day Program (www.5aday.gov)