As we age, almost all of us will experience some level of change in our physical health or our mental ability to process information—or both. Adapting means making changes that could involve accepting help from others to manage our day-to-day activities safely and successfully.
Even within the normal spectrum of mental or physical change, adapting may not be easy. But when dementia enters the picture, it can be especially challenging—especially because the person with dementia is often the last to realize they have a problem. In many cases, it’s the spouse, adult children, or friends who first notice changes that cause concern. They are tasked with raising difficult issues with their loved one without causing negative, hurt feelings that put up walls of resistance.
How do you tell someone they should retire from driving? How do you broach the subject of needing a medical evaluation for a cognitive or physical decline they don’t acknowledge? What would a conversation look like about getting help with medication management, finances, or home care? How do you speak to your loved one about their wandering or getting lost, or the need to attend social programs or day care?
Few people know how to approach these issues and, as with most unwelcome and stressful undertakings, we tend to put these conversations off for too long. The situation almost always deteriorates over time, and in worst-case scenarios, can result in their loved one being taken advantage of financially or otherwise, or suffering an injury or illness. The key is to get in front of the problem with a well-planned conversation—before it becomes too difficult, or even dangerous.
I’d like to share some tips for family and friends on how to initiate and navigate these conversations.
It’s always better to plan ahead and start the conversation in the early stage, before the changes present a problem.
You can begin with gentle inquiries like, “If I saw any cognitive or physical changes in you that concerned me, would you want me to tell you?” Or an open-ended question like, “How would you like your life to be in five years?” These should be easygoing, pleasant conversations where you are listening and asking clarifying questions, rather than pushing your agenda to find the answers or form a specific plan. My main goal is to understand a person’s point of view and feelings, to hear them out. To establish trust. I am setting the stage for the time when decisions will need to be made and options put into place.
So, it’s important to prepare for the conversation and set reasonable expectations for yourself. Plan on the first few or maybe several conversations being just you asking questions, listening, and validating their ideas and experiences when you can.
As dementia becomes more advanced, the conversations may need to become more pointed. But again, timing is everything. Find a time when things are calm. For example, don’t talk about driving just after Dad got lost in his familiar neighborhood. I once set up a time to discuss going to the doctor with a client. When I arrived, she was upset, reporting her cat got out in the morning and couldn’t be found. So, I dropped my plan and proceeded to help her look for her cat, which we found, thank goodness. I rescheduled; the next time she was happy with me and open to talking. We had a very fruitful conversation.
When planning your conversation, avoid ambushing your loved one with an intervention. A surprise meeting in a room with several family members, all there to talk about one person’s problem, is seldom successful and will often make things worse. Tell well-meaning family members that only one or two people should have the initial conversation. Afterwards, if your mom really wants to consult with others, help arrange it, but be sure to prepare them. Make sure they know the extent of the problems so they can be an informed advocate and a source of support.
Look for opportunities, such as when theybring up how difficult it is to cook or clean the house. Or admit to feeling lonely,or having nothing to contribute anymore. This is an invitation to a thoughtful conversation. Try not to say, “Well, Dad, I have been talking to you about getting someone in to help you out for a long time now.” A better response is, “Let’s talk about that. Tell me more.”
Try not to argue.If your spouse says everything is fine and they don’t need help with medications, try not to get drawn into arguments that will lead to denial, anger, and fear. Instead of pushing your agenda and making things more contentious, it’s best to take note of the problem for a later discussion.
When presenting remedies, ask for their ideas.Their contribution not only creates buy-in, but might even result in better ideas than yours.
Also, give the ideas time to sink in. All of us benefit from time to consider options when faced with a problem. Give your loved one that time and revisit later. For example, Dad’s bills are not being paid or are double-paid. You ask him if you can take over the finances and review them with him monthly. After some thought he responds that he wants to set up automatic payments with your help. For now, this meets the concern and establishes trust, and you have made some headway.
Sometimes, new remedies are best presented as being time-limited. For example, “We are just going to try the social program for two weeks and then re-evaluate.”
What if you don’t feel that you have the patience or communication skills to have these conversations? You can always choose someone in your care circle who does. Delegate to someone your loved one trusts and listens to. This could be a longtime friend, sibling, or religious leader. It could be a grown child or an adult grandchild, even caring neighbors.
On the same note, you can engage others to help get through thorny issues. Consider allies who maybe haven’t helped yet but might be willing. I remember consulting with one family who insisted that Dad listened to no one. True to form, he wasn’t receptive to any of my suggestions for starting a day program. So I put off the conversation, giving it time. In my follow-up call a week later I discovered that Dad was enrolled in the program. Aunt Susan had come to visit and had taken him. Until that moment I had never heard of Susan.
It turned out that, decades ago when their mother had passed away, Susan had stayed for weeks to help care for the children. They were very close, but the family hadn’t considered getting her help, as she was having her own health problems and lived on the opposite coast. But this lucky timing was enough to get Dad started in the day program.
For times when the loved one is angry about the situation they don’t understand or agree with, consider making others the focus of their wrath, not the primary caregiver. It’s always better to protect the primary person when possible. For example, if Mom is angry about not being allowed to drive anymore, divert the blame in a gentle way: “So sorry the DMV took away your license, Mom. This is a very hard time.” This way you are perceived as an ally and advocate, which of course you are.
Similarly, in conversations about your loved one’s concerning behavior, shift the focus off them and their deficits. For example, try not to say, “Mom, we need to do something about your walking by yourself, as you have gotten lost several times and even had to be brought home by the police recently.” This might result in denial—she might not remember wandering off. Or defensive anger—she is an adult and can walk whenever and wherever she wishes. In this case, being so direct, hitting the nail on the head, is more effective at building walls; she may refuse to talk with you about wandering, or anything else for that matter.
Instead try, “Mom, I think it is great that you get outside and walk around the neighborhood. I should do more of that myself. Hey, it would really motivate me to exercise if I did it with you. Can I come by tomorrow at 12 noon and walk with you? Then maybe we can grab lunch or a frozen yogurt. That would be so great for me!” Another option is to have a neighbor, volunteer, or paid person walk with her. You could tell her it’s a friend who’s new to the area and would like someone to show her around.
In some cases, a conversation might not be the best route. Looking closely at this issue, what is most important? Rather than trying to reason with her, or getting her agreement, which leads to arguments, isn’t the real point that she be safe? A practical solution might be a GPS tracker on her wrist or in her jacket, given to her as a gift by a beloved grandchild.
I hope these ideas will help you to start conversations and be successful in meeting everyone’s needs.
Geriatric Care Manager