Are you middle-aged? If so, you might be a card-carrying member of the "sandwich generation." You see, the sandwich generation are those who must care for their aging parents, while also raising children of their own. This is challenging enough, but imagine how much more difficult this becomes if either your parent or child is disabled.
Like most people, you want a safe environment for your family members. It's a foundational desire. But when someone in the family needs help to perform basic tasks like feeding themselves and bathing, you're met with a host of new challenges.
Sound familiar? If so, you're in the right place. Our experts created this helpful home safety guide for the disabled. But before we dig in, here's some sage advice and encouragement from advocates in the field of caretaking.
From the Experts
The Safest Place to Care
for Your Adult Relative
If you’re caring for a minor child who is disabled, then there’s no question that you’ll need to live with them just like any other parent would live with their child. Adults are a different matter, though. There are cases where your loved one will want to stay in their own home. This is especially likely if you’re caring for a disabled parent, as it’s hard for them to adjust to the role reversal that occurs as they age. Here are some questions to ask when deciding whether you should move them in with you or let them stay where they are.
Will their disability get progressively worse? If so, how fast?
Look at your relative's disability today. Is this as bad as it’s going to get, or is it going to progress until they eventually need 24-hour care? For instance, people with Alzheimer’s tend to experience a gradual mental decline. They may be physically fine but weak, at least in the early stages of the diseases.
However, vascular dementia operates differently. 10 to 20 percent of all people with dementia suffer from vascular dementia, which can develop after one major stroke or a series of smaller mini-strokes. Neurological symptoms like trouble walking pop up earlier here, and the disease progresses like someone is walking down a hill or staircase. There are days when they seem to be walking on solid, level ground, and other days when there will be a sharp, sudden drop in their physical and mental capabilities. The next day, they might have returned to a more stable state.
People with dementia-related disabilities can also become violent with caretakers. Their ability to remember who you are can change from day to day, or even from hour to hour.
What does their doctor say?
You should have a conversation with your loved one's doctor before making any permanent decisions about living arrangements. They can give you a good idea of if the disability is going to get better, worse, or remain about the same.
They can also let you know if your expectations are realistic. Many children of disabled parents decide that they’ll care for their parents until the day they die, and that’s a noble thought, but it’s not always a realistic one. A doctor should be able to tell you if your loved one is close to the point where they’re going to need at least part-time care from an in-home nurse with extensive training. If your relative reaches a point where medical professionals think death is likely in the next few days or weeks, don’t hesitate to ask about hospice services.
If you’re an adult caring for a disabled child, you can’t assume that your other children will assume those responsibilities when you die. You must leave them a choice and be ready to make other arrangements if they say no. Talk to your child’s doctor about group home options rather than trying to guilt your other children into becoming unwilling caregivers.
Does your home require fewer modifications?
If you live in a home that’s 10 years old and your disabled dad lives in a home that’s 100 years old, then it’s probably best to move him in with you. That’s because newer homes tend to be both safer and more accessible by design. It’s not always the case, especially if, for instance, your father’s older home is one-story while your home has a steep staircase leading to the second floor. But in many cases, newer homes are by default more prepared to accept a disabled resident.
What makes financial sense?
Caretaking for a disabled loved one is an exhausting job without a salary. By one estimate, approximately 15 million Americans serve as unpaid caretakers for an older family member. Many family members quit their jobs or reduce their hours to make it work, which just adds to the financial stress. Because of that, it may make more sense to sell your parents’ rickety old home and put that money into a trust that will help you care for them. Combining expenses under one roof is usually cheaper than going back and forth between your house and your family member’s house.
Also consider asking other family members to contribute financially, if they’re able. Don’t go in expecting them to, but family members who are incapable or unwilling to act as the primary caretaker are often happy to contribute some money to the cause.
What has your relationship been like historically?
You should not move in a family member with a history of violent or abusive behavior towards you. Caring for a disabled person is hard enough even when there’s nothing but love between the two of you; it’s downright impossible if there’s a history of acrimony there. You both have a right to feel safe.
Physical and mental disabilities don’t change people’s personalities. They are who they were before the disability, although now they may be more frustrated by certain limitations. If you have a parent who has always treated you with hostility and contempt, don’t expect a health challenge to turn them into an entirely different person. That’s a fantasy, not a reality.
What do they want?
It’s important to allow them input. They’re disabled, but that doesn’t mean they don’t have their own sets of wants and needs. Your loved one might agree that it’s time for them to move out of their house and into a place where they can have constant supervision. That’s more likely if there’s some sort of inciting even that led you to this conversation. For instance, let’s say your loved one fell in their garden one night and had to wait two hours for a neighbor to come over and help them. In that situation, you have clear evidence that their current living situation isn’t viable, and something must change.
But if there’s no crisis that spurred this conversation, then the best thing you can give them is time to adjust to the idea. That doesn’t mean an indefinite period, but something like “We’d like you to move in by Christmas” is better than “The moving trucks arrive in the morning whether you like it or not.”
In other words, don’t treat them like a kid who doesn’t know what’s best for them. You can disagree with them without treating them like an invalid who has no personal agency. Even the most disabled person has the right to basic bodily autonomy. They still feel emotions like shame joy, and you want to avoid scolding them and making them feel embarrassed.
Modifying Your House
to Be Accessible
A timeline also gives you time to make necessary upgrades to your house. One study found that just 1 in 3 homes in the United States meet basic accessibility standards. Unless you’re particularly handy with a hammer and tools, it’s best to hire a contractor to do the labor. They’ll get it done faster.
Able-bodied people don’t always realize just how hazardous their house can be, which is why it’s important that you hire a contractor with experiencing retrofitting houses to make them accessible. Here are some common topics they might bring up.
Depending on where you live, you may have access to home remodelers who have received the Universal Design Certified Professional designation from the National Association of the Remodeling Industry. This designation isn’t essential, but it’s helpful because it lets you know the remodeler has expertise in universal design principles. Universal design is aimed at making as many structures as possible accessible to the widest range of people without a lot of complicated modifications. In fact, the number one universal design principle is “equitable use.”
This is less likely to be an issue if you live in a single-story house. However, a two-story house with only a half-bathroom on the first floor can be a real issue. In most cases, helping your loved one up and down the stairs every time they need to bathe is both impractical and dangerous.
If you can afford it, it makes sense to convert that half-bathroom into a full bath with a shower and accessible tub. Installing a raised toilet seat can also help them retain some privacy when they use the bathroom.
There’s a chance the doorways in your home will need to be widened to allow quick and easy wheelchair access. Your loved one needs to be able to get inside easily, but they also need to be able to leave in case of an emergency.
Aim for a minimum doorway width of 36 inches. 32 inches will sometimes work in a pinch.
Even two or three small steps right outside your house can be dangerous for someone with a disability. Ramps are safer. If adding a ramp is too expensive, make sure to always bring your disabled relative in and out of a door without any steps or sudden drops.
Do you know if your flooring is wheelchair friendly? Some surfaces make it easier people with walkers and wheelchairs to get around, while others are likely to trap and snag the chair. You may like that fluffy carpet in the den, but it’s less than ideal for wheelchairs.
Be alert for slippery surfaces as well. You may think the hardwood flooring is a little slick but not dangerous, but you’re assuming you’ll be able to break your fall somehow if you lose your balance. Don’t look at the house from your perspective. That may sound impossible, since you’ve been looking at it that way ever since you bought it, but someone’s life and safety depends on you looking at things differently now.
These are ideal for bathrooms and bedrooms. They can help people enter and exit the shower and bed with little to no assistance from someone else. They must be mounted in just the right fashion, though, so though don’t do it yourself unless you’ve worked on a similar project before. This is not the time to guess and say, “Good enough.”
Door Knobs and Handles
Do they have trouble maintaining a firm grip? It may be time to replace at least some of the door knobs with handles that only require the press of a lever to open.
How will you get your loved one out in case of an emergency? Have a clear plan. You won’t always be able to choose which entrance is most readily accessible in case of a fire or other incident, so make two or three different plans that you can adjust as needed. Run a drill to ensure that it will work as well in reality as it does in your head.
How’s your kitchen looking? Are the counters and tables accessible for someone with a disability? What about the drawers? Is there room for maneuverability? Open concept kitchens are trendy right now, so there’s a good chance that a kitchen that was built recently won’t seem cramped, but “not cramped” doesn’t necessarily correlate to navigable by wheelchair or walker. Remember that your relative needs to be able to get through the room without bumping into appliances like the stove or fridge.
You need to pay attention to more than just the interior of the house. Walk around the perimeter of your house once, and then twice. Bring someone with you to help you spot any hidden bad spots that might trip up someone with limited mobility.
Start by searching for the obvious stuff, like big holes formed after the last major rainstorm. Search for ant hills, snakes, and other pests that can populate backyards and make life unpleasant. There are some bugs you can kill with the poison or spray you buy from hardware stores, while other pests will require an exterminator to fully eradicate.
Equipment That Keeps
Family Members Safe
You can only do so much with your eyes and ears. You also need help from the latest home security and home automation solutions. Here are a few investments that will help you keep your disabled family member safe.
Placing security cameras around your home helps you keep an eye on your family member when you can’t be in close physical proximity to them. Two of the biggest advantages of security cameras are mobile alerts and live viewing.
Live viewing is ideal for those times when you must leave your loved one at home with another caretaker. If you’re at work or out running an errand, you obviously won’t have time to watch the live cameras around the clock, but you can use your smartphone to pull up a live camera view of every room in the house that has cameras. Those occasional check-ins will go a long way toward reassuring you everything is running smoothly.
Mobile alerts are another essential tool in your caretaker’s arsenal. When someone opens a door and enters your home, you’ll get an immediate text alert on your phone. You’ll also be able to pull up a video of the person coming inside the house. If a doctor comes by to visit your relative while you’re out, you’ll know. Similarly, you’ll also know if someone who isn’t supposed to be there tries to come in anyway. If that happens, your home security system will be able to notify the police immediately.
Medical Alert Systems
A medical alert system allows your relative to retain some independence with sacrificing their safety. All they need to do is wear a pendant or wristband with a help button on it. If they fall or need assistance, they can press the button to get connected with a monitoring center that’s staffed 24/7. Most buttons on the market are waterproof in case of a fall in the shower or bath.
What if your family member falls in a way that renders them unable to press the help button? That’s where automatic fall detection can be a literal lifesaver. Medical alert systems with this optional feature will automatically connect your family member to a monitoring center when a fall is detected.
Premium medical alert packages also offer motion sensor packages that let you track a relative’s movements. If their activity level drops below a certain threshold, you’ll get an alert.
Some packages offer GPS tracking systems for extra peace of mind. If your relative leaves home while they’re wearing a tracking device, the GPS system should be able to locate them and send help.
Managing door locks is a fine line when you’re caring for a disabled child or adult. You don’t want them to open the door too easily and wander off, but you also don’t want to lock them into a room with no way out in case of an emergency.
Smart locks that you can control remotely offer your best chance at finding a happy medium. When you’re at home with your family member, you can keep the interior doors unlocked so they don’t feel confined to one room of the house. If it’s nighttime and they’re sleeping, consider locking their bedroom door so they can’t wake up in the middle of the night and sneak out of the house.
As circumstances change, you’ll be able to adjust the lock settings on your app in a matter of seconds.
Connect your home’s fire alarms to your larger security system. Why is that useful? Let’s say you need to leave the house for 20 minutes to drop something off at the post office. That means leaving your family member alone for a short time.
Right after you exit the post office, you get a call from the security company: A fire alarm has been activated at your home. Do you want the fire department to respond? At the same time, you’ll get a live view of your home. You’ll be able to both tell the dispatcher to send help and mention that you have a disabled family member that needs assistance.
The cameras may not show anything out of the ordinary. False alarms do occur with some frequency. But if a fire alarm is activated, you’ll get some comfort from being able to 1) dispatch emergency responders immediately and 2) pull up a live view of your home to see what’s happening.
Speaking of fires, they’re one of several threats to a disabled relative.
Threats to Disabled
Home fires can strike at any time, but not every population group is equally at risk for dying in a fire. Children are less likely to perish in a fire than the elderly, for instance. That’s according to numbers from FEMA.
As of 2016, the fire death rate for those over 65 was 26.7 per one million people. For children 14 and under, the death rate is 5.1 per one million people. That’s a significant difference, and there are a few possible reasons for that discrepancy. Children are often but not always more mobile and better able to escape from danger.
If you’re caring for either a child or adult with a disability that makes escaping from a fire harder, you may need a specialized fire alarm. The U.S. Fire Administration reports that annually, there are 700 fires in houses where people have physical disabilities, and 1,700 fires in homes with people who have mental disabilities. Not surprisingly, fires are more likely to start in or around the kitchen.
If the person is hard of hearing, look for a fire alarm with a strobe light or similar mechanism. There are even alarms that cause the bed to shake when a smoke alarm gets activated. Each alarm should also be connected to all the others, so if an alarm goes off in the upstairs bedroom, they go off all over the house.
There are a ton of reasons why it’s best for a disabled person to sleep on the ground floor, and it’s especially important in case of a fire. Among other things, being on the ground floor means they don’t have to risk tumbling down the stairs to reach safety.
If your loved one is on oxygen, a small fire can quickly become much bigger than that. Make sure you can shut off the oxygen within seconds in case of a fire.
Do you live in Tornado Alley? What about by the coast? Some parts of the country are less likely to be hit by natural disasters than others, but you need a natural disaster plan no matter where you live.
As a practical matter, that means having a backup wheelchair that can be operated manually in case there’s a power outage and the electrical wheelchair isn’t an option. Every home should have a disaster supply kit with a few days supply worth of medication and other essentials.
There are foods that are dangerous for people who have trouble with things like chewing or swallowing. A diet full of soft foods can lower the risks, but you should talk to your loved one’s doctor to ensure their diet is balanced in a way that provides the proper nutrients.
Make sure the people who come into your home meet a baseline of trustworthiness. That’s important anyway, but it’s even more critical when you’re acting as a caretaker for a person with a disability. Don’t let in someone without proof that they are who they say they are. That means a badge at minimum; never trust someone who says, “The electric company sent me over” but offers zero proof. The AARP says scammers love to imitate your utility company. It’s a lot harder to keep an eye on someone once they cross the threshold and have access to your home and the people inside it.
If you need to call the company while the supposed repairman waits outside, then don’t feel bad. You’re performing your due diligence.
Remember that disabled people are somewhere between four and ten times more likely to be abused or exploited than their able-bodied peers. Disabled children are even more at risk. Data from 2009 shows that 11 percent of all child abuse victims had some sort of disability.
Unfortunately, “other people” includes the very caretakers who are charged with ensuring their safety. You may think that you would never dream of hurting your family member, but caretaker burnout is a very real thing that can lead you to act in uncharacteristic ways. It can happen to anyone. See our list of resources at the end of this guide for more on caretaker burnout.
Not every person with a disability is going to wander off, but some will. This is sometimes called elopement, and it has nothing to do with a secret marriage.
Small children will often leave a caretaker’s sight temporarily if, for instance, they see a dog and decide they want to run across the street to pet it. That’s scary, but that’s not the same thing as elopement.
The CDC lists several reasons why a disabled child might wander off.
- Enjoyment of running or exploring
- To get to a place he or she enjoys
- To escape a stressful situation
- To see something interesting
With time, it can become easier to predict what might trigger a child to run away. For instance, let’s say it’s the beginning of winter and you turn on a gas heater for the first time. Everything works fine, but there’s dust that burns off and activates the fire alarm. In turn, your son runs out the unlocked front door before you can stop him.
Disabled adults can be triggered by similar things, but they can also go out looking for people or places from their past. It’s common for someone with dementia to get up in the morning and think they must leave for work at a teaching job they left twenty years ago. They can have a specific route in mind when they leave, only to get lost and disoriented after a few minutes outside.
Regardless of if your family member is eight or eighty, there are preventative measures you can take to keep them from wandering. Provide them with an ID bracelet or necklace that includes their address and your contact information. It should be secured to their body in a way that’s comfortable but also hard for them to remove on their own. Install security cameras in every part of the house that they can access, plus one or two cameras that are trained on outdoor areas. That way, if they do escape, you can look at footage to figure out what direction they were headed.
If you get along with their neighbors, it’s worth mentioning that you have a family member who sometimes wanders away. You don’t have to go into a great amount of detail or answer questions that are too personal, but it’s nice to have more people on your side and ready to help if you need it.
What to Do After a Disabled
Relative Goes Missing
Caretaking for a disabled relative is scary because, depending on how mobile they are, you can lose track of them in only a few seconds. It’s common to feel guilty or like you’re at fault, but you can’t focus on that sense of guilt once you realize they’re gone. You must instead spring into action.
Once you know they aren’t in the house or somewhere near the premises, don’t delay calling 911 as soon as possible. That can set several mechanisms in motion that will make it more likely your relative gets home safely. There’s nothing wrong with also creating your own search party that consists of friends and relatives, but law enforcement agencies have access to resources that you don’t.
You’ll frequently hear about these cases on the news, or even get a loud alert on your phone in the middle of the workday. If a vulnerable child gets abducted, you’ll see an Amber Alert on your phone and TV. If a vulnerable elderly person wanders off their property and can’t be found, state agencies will issue something called a Silver Alert to broadcast urgent information and urge people to call authorities if they spot the missing person.
The Criteria for Silver Alerts
For instance, California will only issue a Silver Alert if several conditions are met, including this one: “The missing person is 65 years of age or older, developmentally disabled or cognitively impaired.” The law enforcement agency leading the investigation must also have reason to believe that the elderly person “has gone missing under unexplained or suspicious circumstances.”
Elopement is a real concern if someone is suffering from Alzheimer’s, vascular dementia, or a similar ailment, as 6 in 10 dementia patients will try to wander off at least once, according to a 2010 report in the New York Times. Such diseases can give the people suffering from them the urge to go outside and look for something, even if they’re not sure what that thing is.
Groups like Project Lifesaver were designed to keep vulnerable populations safe when they wander. This is an especially big challenge because dementia often comes with a distrust of government officials or others who you feel like are out to cause you harm.
In other states, Silver Alerts are known by names like Senior Alert or Golden Alert. But the basic premise remains the same wherever you go.
Silver Alerts for Children
Silver Alerts can also be issued for children in some states. That may sound confusing, but there’s a certain logic to it. When a Silver Alert is issued for the child, that means they’re missing but authorities do not think they were abducted.
If a disabled child wanders off the premises but there’s no sign of foul play, authorities might issue a Silver Alert. If a disabled child wanders off the premises and a neighbor reports seeing someone in a windowless van grab them and drive away, that’s cause for an Amber Alert.
Carrying or Lifting
a Disabled Person
There are times when you may have no choice but to carry or lift your family member. Lifting is more common, especially when you’re transferring them from, for example, the toilet to the wheelchair, or from the wheelchair to their bed.
Assisting a child with a lift is often easier, at least until they become a 6-foot-tall teenager who outweighs you. If you don’t know how to properly lift someone’s body weight, then you’re risking injury to both sides. Analyze the situation carefully and get help. The use of a transfer board between the bed and a wheelchair could be one solution. Getting someone to help is preferable to going it alone and ending up in a heap on the floor. Here are some more tips.
- Talk to the family member and tell them what you’re doing. Even if they don’t understand every word, talk in a gentle tone that tries to convey that you want to help them.
- Use the strength in your legs rather than your back.
- Make them part of the process by saying things like “I’m going to do X, and then I need you to do Y. Is that OK?” Simple instructions they can follow will help them feel less like a burden.
- When in doubt, bring in a professional. The CDC says healthcare workers are still at risk for overexertion injuries that stem from manual lifts, but home health aides and nurses should have at least received specific training on how and when to manually lift patients.
Love Matters Most
When talking to caretakers, you’ll find that many of them believe it’s an honor to care for a loved one who is disabled. The feeling is especially profound if it’s an adult child caring for a parent. But while physical safety is a caretaker’s number one priority, emotional safety must follow right behind it.
Do what you can to make your relative feel comfortable and appreciated regardless of if they full cognitive abilities or not. All the accessible entrances and wheelchair ramps in the world won’t make a difference if you’re constantly sighing and acting as if you’d rather be anywhere else. Regardless of any physical or mental disabilities, we all deserve to feel wanted.
- Caregiving: Recognizing Burnout The Cleveland Clinic tells you what to look for, as well as how to differentiate between caregiver burnout and caregiver depression.
- Time Magazine: How to Talk to Your Parents About Moving Out of Their Big, Beautiful House This article from Time’s personal finance section offers tips on starting a difficult yet essential conversation about aging in place versus moving out.
- Safe Patient Handling and Mobility The CDC’s National Institute for Occupational Safety and Health (NIOSH) has advice for lifting patients.
- New York Times: More with Dementia Wander from Home A 2010 article that examines search and rescue efforts for dementia patients who leave their home.
- U.S. Fire Administration: Fire Safety Outreach Materials for People with Disabilities A guide about fire safety that provides tips for both disabled people and the ones who care for them.
- FEMA: Preparing for Disaster for People with Disabilities and Other Special Needs This is a 20-page pamphlet from the Federal Emergency Management Agency and the American Red Cross goes into detail about how to get ready for worst-case scenarios involving Mother Nature.