Gone Missing: Tech Tools Locate a Loved One Who Wanders

Freedom to go where we want, when we want. It’s a deeply held American value, part of our cultural DNA. The iconic 1960s TV series, Route 66, about two young men coming of age as they drive cross-country in a Corvette, still resonates.

But what if the one with wanderlust is your aging parent with dementia? You don’t want to lock her in her home, but you’re also terrified that she’ll take off on foot and go missing for an hour or a day—or more. So-called “elopement” takes just an instant. Even experienced caregivers can briefly turn their backs, only to discover that their charge has slipped out the door and disappeared. According to the Alzheimer’s Association, 6 out of 10 people with dementia will wander eventually. The risks are real.

These GPS Tools Can Help You Keep Track of Your Loved One

But now there’s an app for that. The same kind of GPS devices that enable you to find your missing smartphone can also help you find your missing loved one. All involve a subscription for some kind of tracking device that is worn by your loved one, paired with text or email alerts, tracking apps and/or a hotline network. Among the options:

Project Lifesaver: Requires your loved one to wear a personal transmitter ankle bracelet. If he wanders, you receive an alert. When you call the local Project Lifesaver agency, a trained team goes into action to find your loved one. Most people are found within a half hour, a few miles from home. This service specializes in helping people with cognitive conditions that cause them to wander. The international search and rescue program also works with local public safety agencies to educate staff about risks of wandering.

GPS Smart Sole: If your loved one objects to wearing a tracking device or is likely to forget to put it on, this option may be the solution. GPS Smart Sole is an insert equipped with GPS technology that fits into most shoes with removable insoles. This works best if your loved one wears the same shoes daily or if you purchase multiple pairs of inserts. The device transmits location data every 10 minutes via smart phone, tablet or computer. You can define a safe radius for your loved one; if she goes beyond, you receive an email or text alert.

Alzheimer’s Association Comfort Zone™: This service, paired with Medic-Alert, uses location based mapping to track your loved one. The locater device can either be worn or mounted in a car, and transmits signals via satellites and cell towers to a web-based system that you can monitor. Options include real-time location monitoring, alerts if your loved one leaves a safety zone that you define, and emergency assistance if your loved one wanders.

But Technology, Alone, Is Not the Full Solution

These tracking systems can help your loved one to live safely at home as long as elopement episodes are relatively infrequent. But it’s important to understand that this technology doesn’t prevent wandering, any more than a wheel chair alarm can prevent falls. Be sure to have a current photo or digital image of your loved one, in case he goes missing. Call the local police as soon as you realize he’s wandered off. Massachusetts is one of three dozen states to participate in Silver Alert—a public notification system, similar to Amber Alerts for missing children, that broadcasts information about missing individuals with Alzheimer’s and other dementias or cognitive conditions.

If wandering becomes a serious safety concern, you may need to consider moving your loved one to a secure setting that specializes in memory care. Even that’s not foolproof, since it’s still possible for someone to exit a “secure” setting; however, there are several systems used both to prevent wandering and to quickly alert staff in case someone elopes. An Aging Life Care Professional® can provide a thorough assessment of your loved one’s safety issues and needs, and help you determine the best alternatives.

President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care® manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.

For more on coping with aging, follow us on Twitter: @DeborahFinsALCM.

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How Do You Know It’s Dementia When Dad Can Still Do the New York Times Crossword?

The onset of early dementia is not always obvious. Especially when your loved one is smart and can compensate for memory loss, or is clever and determined to hide symptoms, it can be difficult to know whether what seems “off” is really so.

Maybe your dad has always been a dapper dresser, and you notice him wearing a stained shirt on more than one occasion. When you mention it, he shrugs it off and says he’s having his eyes checked next month (despite the fact that he has no trouble surfing the Internet on his smartphone).

Or your mom, ever the vigilant money manager, who always paid bills ahead of time, has some unopened, month-old invoices on her desk. You point them out, and she laughs and informs you she’s now paying online (even though she’s always mistrusted online fund transfers).

Or perhaps your great aunt, the most punctual person you have ever known, comes late to a luncheon date without calling. Once she reassures you that she’s fine, she explains that she misplaced her car keys and also missed the turn for the restaurant (where you always meet).

How Have Things Changed?

For all three scenarios, the explanations may seem logical, possibly true. But if the incidents repeat often enough to indicate a pattern of unusual behavior, it’s time to be more vigilant about the real chance that something more serious is at play.

At the crux of the issue is determining how your loved one’s behavior has changed relative to what has been normal for that individual. For someone who is smart and able, the changes may be subtle. And even if there are notable changes, he or she may be able to compensate creatively and still be able to do the New York Times crossword. Then the question becomes how much loss of ability is too much.

For example:

Can he still manage his own medications? Warning signs include a pill minder box with lids open out of order, pills not taken that should have been, or empty pill bottles that have not been refilled.

Does she leave bills unpaid or stacks of mail unopened? Especially for someone who was once very organized, increased clutter can be a warning flag. Missed payments, tax returns that were never filed, a bank account that hasn’t been balanced in months—all add up to a decline in cognitive functioning.

Is he at risk driving? Aside from slower reflexes, declining sight and increased fatigue—all good reasons to have driving skills evaluated—your loved one may evidence poor judgment, confusion or forgetfulness, all of which could endanger his safety and others on the road.

Has her appearance changed? Again, the standard of comparison is how your loved one normally presented herself to the world. If she always wore meticulously applied make-up, had every hair in place and dressed impeccably, and now seems less attuned to her appearance, she may have decided that she doesn’t want to bother with it all anymore. But she may also be less aware.

What’s at Stake for You?

Recognizing that your loved one is declining brings challenges beyond mere observation. There is a significant emotional hurdle to overcome: recognizing that your aging parent is vulnerable, admitting to yourself that his or her time on earth is limited, accepting that the status quo no longer works. You may have a lot of other demands on your time, and the idea of taking this on can seem overwhelming.

It can also be extremely difficult to confront your loved one with your observations, depending on the history of your relationship. A parent who has always maintained the upper hand, who insists on control, or who is belligerent and critical when challenged can be a nightmare to deal with.

For all of these reasons, if you suspect that your loved one is showing signs of dementia that could put her at risk, consider having an Aging LifeCare Professional® conduct an independent assessment. This information can provide the basis for informed—and mediated, if necessary—discussions with your loved one about next steps. And you may be surprised that you’re not the only one who is relieved to finally address the issue. Your loved one—whether or not she admits it—may be, too.

President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care® manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.

For more on coping with aging, follow us on Twitter: @DeborahFinsALCM.

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Affordable Assistive Technology Is Alive and Well in Massachusetts: How to Get What You Need

Smart phones, laptops, tablets, desktop computers—these digital devices have become so much a part of our home and work environments that any form of communication other than electronic texts, emails, videos, social media sharing (phone calls? hand-written notes? snail mail anyone?) are considered far too slow and just plain old-fashioned.

So what happens if you can’t use your hands to type? Or suffer a stroke, sustain a brain injury or have some other form of cognitive or physical impairment that severely limits your ability to use electronic devices that are now at the center of our techno-fueled universe?

Fortunately, even as technological advances in size, speed and applications of computing have fostered an over-reliance on digital devices, technology also provides some remarkable ways for people with disabilities to stay connected with the world. Voice recognition devices, dictation software and a host of other high and low tech adaptive tools can make the difference between remaining independent and having to rely on others for even the simplest tasks.

Assistive Technology Options in Massachusetts

So, how do you know where to start, if you or a loved one is in need of assistive technology? Here in the Commonwealth, the Massachusetts Rehabilitation Commission (MRC) contracts with three organizations to provide Assistive Technology (AT) assessments, purchase and set-up of equipment, training and follow-up: Easter Seals Massachusetts, United Cerebral Palsy of Berkshire County, and UMass-Dartmouth Center for Rehabilitation Engineering.

Who is eligible? Any Massachusetts resident

  • who has a severe physical or mental impairment that substantially limits their ability to function independently at home or in their community;
  • for whom AT services and training will improve their ability to function, continue to function or move toward functioning independently in family and community.

Easter Seals Massachusetts provides AT services in its Boston and Worcester offices, including a bundle of free services and low cost loans that can help you determine best options and even sample tools before committing to purchase. Offerings include:

Assistive Technology On-Demand

Free, curated kits of essential assistive technology for people in Massachusetts who have acute, urgent needs for assistive devices to help regain independence and communicate while hospitalized or recovering. Supported by a grant from Comcast NBC Universal.

Assistive Technology at Work

AT assessments and training that help job-seekers gain equal access to the work environment, increase career opportunities and maximize ability to perform essential skills. Examples include assistive computer devices, communication devices, adaptive software, environmental controls, amplification accessories, time management aids, vision aids, and workstation modifications.

Assistive Technology at Home

AT for the home or community setting to improve the ability of individuals with significant disabilities to live independently.

Assistive Technology at School

Consulting services and iPads, tablets, computers, dedicated speech generating devices, access equipment and low tech aids to help meet students’ curriculum and augmentative communication needs.

Augmentative Communication Services

Experts work with individuals with congenital or acquired disabilities who have difficulty using speech for communication.

Try Before You Buy

Easter Seals Massachusetts also operates three regional MassMATCH centers, as part of a state initiative to maximize access to AT. At these centers, you can learn more about available AT, try out or even borrow equipment to sample at home.

In addition, the Massachusetts Assistive Technology Loan Program, funded with state and federal resources, gives people with disabilities and their families access to low-interest cash loans to purchase needed AT devices. For more information and to locate your nearest MassMatch Center, visit mismatch.org.

To learn more about what AT services are available in your Massachusetts community, contact the Massachusetts Rehabilitation Commission: 617-204-3851 (voice); 617-204-3815 (TDD); 617-204-3877 (FAX); AT@MRC.state.ma.us.

President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care™ manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.

For more on coping with aging, follow us on Twitter: @DeborahFinsALCM.

Image Credit: Carl Heyerdahl

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It’s Midnight: Is Your Parent Safe at Home Alone?

One of the major thresholds of parenting is knowing when you can leave your kids at home on their own. Are they responsible enough to make appropriate choices while you’re out? Could they leave the house safely in case of an emergency? Would they be able to handle the unexpected, like a fall or scraped knee?

As our loved ones age, similar concerns can arise about their ability to continue living alone. It’s a complex dilemma for adult children, because we want to see our parent as we (ideally) always have: competent, strong, the person we turn to for advice and support.

But there may come a time when the risks of an aging parent living alone outweigh the benefits of independence, particularly for someone with cognitive or physical issues. So, how do you know when it’s no longer safe for your loved one to be on her own?

Here are a few key questions that can help to guide your (joint, if possible) decision:

Does your loved one know what to do in case of emergency?

While, of course, you don’t want to wait until an emergency happens to answer this question, you can learn a lot by asking how your parent would handle various scenarios, such as a fire, a power outage, a fall, or simply not feeling well.

  • Does he know when it’s appropriate to call 911? Can he show you how he would use the phone to do this (without actually placing the call)? Older adults may fall back on “calling the operator”— and become confused speaking to an automated call service.
  • Does she know how to use her emergency pendant? Does she actually wear it all the time? Over and over, we hear of loved ones who leave their pendants on a dresser or don’t understand what it’s for.
  • Is he able to call you or another emergency contact? Can he make an appropriate judgment as to when that’s necessary? Not wanting to “be a bother” can be overdone to the point of avoiding asking you for help when it’s essential; at the opposite extreme, an anxious parent may call so often that it’s difficult to discern when an emergency is real.
  • Is she physically capable of getting out of her home if there is a fire or other emergency, such as a carbon monoxide monitor alert? This requires good judgment as well as mobility and speed.

Does your loved one engage in unsafe behaviors?

This can run the gamut from leaving an unwatched pot on the stove or forgetting to turn off water in the bathroom, to insisting on maintaining old routines that are beyond their capabilities, such as shoveling heavy snow or driving when no longer able to react quickly.

This issue can have another, complicated dimension: if one parent still cares for the other, but has compromised judgment around safety issues. For example, leaving a sleeping spouse alone in order to run errands or socialize—believing “nothing can happen” while the partner is safe in bed—can be risky if the one supposedly asleep falls while going the bathroom or becomes confused by the spouse’s absence.

Does your loved one have friends nearby who check in regularly?

Being social increases the chances that your loved one has friends and neighbors who care about her well-being and who will take the initiative to check in. These are people with whom you can share your contact information, people you can count on to be your eyes and ears on the ground if you do not live nearby. Conversely, if your loved one has always been more private or isolated socially, his ability to care for himself alone requires greater attention.

Does your loved one’s living situation enable you to sleep at night?

Ultimately, the decision about whether to leave an aging parent living alone is a matter of confidence in your loved one’s judgment and your own — and what risks you both are willing to take. If your concerns are keeping you up at night, that may well be the best indicator that it’s time to consider bringing in help or looking for a safer living situation with appropriate support.

It’s possible, of course, that your loved one may choose to remain in an unsafe living situation. If legally competent, he or she has the right to do so. Should this be the case, you may want to explore options so that you’re prepared in the event of (the almost inevitable) crisis.

Working through these issues often prompts difficult but necessary conversations. An Aging Life Care Professional™ can help you and your loved one to find the best solution together.

President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care™ manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.

For more on coping with aging, follow us on Twitter: @DeborahFinsALCM.

Image Credit:  Brooke Campbell

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Juggling Care Coordination For Yourself or a Loved One? How to Save Time and Trouble

When you have a complicated medical condition, keeping track of all the doctors’ appointments, tests, medications, prescription renewals, insurance questions and myriad other details can feel like a full-time job. Managing your own care on top of doing your best to battle fatigue, pain and a raft of other symptoms can be downright exhausting. Managing a loved one’s care can be exhausting, too.

Not everyone can afford an Aging Life Care™ Manager to take the load off. Here are some key strategies, based on our years of experience, that can help you to keep better track of all the moving parts.

One of the most time-consuming aspects of managing a complex disease is dealing with a variety of medical specialists. They may be part of the same healthcare system or different systems; if the latter is true, more time is involved with sharing medical records and insuring that the specialists communicate with each other. A few tips:

  • Create an easy note-taking system that enables you to keep track of what was said in each appointment, relevant test results, and any other observations you want to share with the physician. You may want to keep a notebook or maintain your record electronically on a smart phone or tablet. Explore apps such as CareSync or CareZone that streamline personal health record-keeping. This will help you to manage important details between and across specialists’ appointments.
  • Make sure that all healthcare consents are in place so that the specialists can consult with each other. Without permission, especially across systems, they will not be able to share confidential medical information.
  • Have someone accompany the patient who also knows his or her medical story and is good with details. This might be you, another family member, or a friend. If you are the patient, and you’re having difficulty keeping track of all the details, then bring someone along who can fill in the blanks.
  • Bring a written summary of the patient’s relevant medical history along to appointments with specialists, especially if they are new to the case. This will save everyone time, and allow you to think ahead about key details that must be mentioned. When creating the narrative, keep these points in mind:
    • You only need a concise summary of the medical history; don’t write a full biography. The past six months to a year of details will be enough. Confine the rest of the past history to one paragraph.
    • Include a list of medications that have worked and those that have not.
    • List the other doctors that the patient has seen.
    • List previous relevant treatments and outcomes.
    • Bring a list of questions that you want answered. Be sure you get the answers before you leave!
  • If possible, when there are many specialists involved and important decisions to be made, request a group meeting. This may be easier to accomplish when all the specialists are in the same healthcare system. In any case, it does not hurt to ask. You must be your own best healthcare advocate.

If you are feeling overwhelmed by all of this, and hiring an Aging Life Care Manager exceeds your budget, consider one other option: a consultation with an Aging Life Care Manager can help you, your loved one and family to sharpen your care coordination skills and identify community support services that may be affordable or even free.

And be sure to do your own cost-benefit analysis; especially if you are taking time off from work in order to provide care management for a loved one, and losing income as a result, you may just find that hiring a professional will save you money, time and much stress in the long run.

President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care™ manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.

For more on coping with aging, follow us on Twitter: @DeborahFinsALCM.

Image Credit: Chilanga Cement Flickr via Compfight cc

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