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Disability Empowerment

Joan Lunden’s Top Tips for Caregivers

My name is Joan Lunden. I am a journalist, an author, and an advocate for family and caregiving issues. I am also a spokesperson for A Place for Mom and an ambassador to MediaWise for Seniors.

I am a wife and mother to seven children, and have been a caretaker to my late mother who suffered from dementia and to my late brother who suffered from the many complications of type 2 diabetes. Thus making me part of the sandwich generation — caring for children at the same time as caring for aging parents, as well as a sibling with a chronic illness. 

Each day in this country, 10,000 baby boomers, like me, turn 65. Experts tell us we are headed for a caregiving crisis, since America’s aging population is expected to double in the next 20 years. 

According to the Department of Health and Human Services, about half of Americans turning 65 today will develop a disability serious enough that they will require care. That means the number of American workers who will need personal medical leave or will need to leave to care for aging parents, spouses, and other family members is only going to increase. 

How can caregivers help people who have disabilities feel independent? 

It is important to have a good understanding of what the person who needs care is capable of doing and what they cannot do. Can they carry on a conversation, or are they jumbling words? Can they take care of their personal needs, still read a newspaper, or enjoy hobbies? 

Once you understand your loved one’s abilities, you can start empowering them to make the most of their lives.

  • Encourage physical independence:Rather than trying to do everything for a disabled person, give them the choice, and thus the opportunity, to assume some daily responsibilities on their own, such as making their bed, and helping with cooking and cleaning. When a disabled person feels they can accomplish these tasks alone, they feel greatly empowered. 
  • You could also consider using aids that can make life easier. For instance, an adjustable electric bed can provide more ease of movement, and make getting in and out of bed easier.  
  • Working or volunteering: This can give a person a sense of purpose in life whether they are disabled or not. When a disabled person can work, or volunteer, they feel that they are participating in society, and that will go a long way in improving their self-confidence and their sense of independence. This can also help them build friendships and thus their interpersonal skills.
  • Help to build confidence: Encouraging a disabled person to make small daily decisions like what they want to have/cook for dinner, and what hobbies or activities they want to do in their spare time will build confidence and further foster independence. With an election coming up, consider helping them to register to vote. This will help them feel like they are included in our society and are able to make a difference in their community.
  • Provide support, but not control: Probably one of the more difficult aspects of providing care for a person with disabilities is providing them with support without controlling everything they do. Exercising too much control will ultimately decrease their independence and their feeling of being able to make their own choices. This can be a tough line for some caregivers to navigate — the line between support and control. It can very much depend on the language that you use. This means that if you tell a disabled person what to do all the time, you are controlling their life. Instead, by making a subtle change and asking them what they would like to do or help with, you have just empowered them by giving them the ability to choose. By allowing the disabled person the freedom to make more choices in their daily life, you will build their confidence and again foster their independence. 
  • Establish a network of support:When only one person takes care of someone with a disability, the person can become totally dependent on that caregiver. A major factor in promoting independence is to get other people involved in supporting their relative or loved one. This can be other family members, or relatives, or even neighbors who are willing to get involved. It may sound like a subtle difference, however, this approach — putting into place a reliable trusted network that provides support, but not control — can help a disabled person thrive and to feel more independent over time. Create financial independence: It’s also important for people with disabilities to still feel that they have some financial independence. Money is an important marker for one’s independence because it represents the ultimate form of control over how we live our life. Financial independence for disabled people may be a cash allotment that they can access via a checking or savings account, if that is appropriate for the situation. Delegating certain financial responsibilities to a disabled person can also give a sense of financial independence. 
  • Independent living in a senior community: If the person with disabilities is living in a senior community, many of these are already designed to empower residents to live as independently as possible. Over the past few decades, researchers and architects have collaborated to create facilities based on a human-centered design approach, which considers how the interior space of a structure affects a person’s thinking, behavior, and emotions. Research shows that residents have an easier time transitioning and forming bonds in a new facility when they can make it feel like their own space — an important factor in living a happy and healthy life. 

What is the most important thing for caregivers to keep in mind while taking care of their patients or loved ones?

You can’t take care of others unless you’re taking care of yourself. Research shows caregiving can take a serious toll on one’s emotional and physical well-being, leading to chronic conditions and increased depression and anxiety. It’s important to make sure you stay in good health so that you can give the people you’re caring for the best support possible. 

Be sure to go to all of your doctor’s appointments and to have your annual screenings. Take time outs! Get in some exercise and tend to your own personal needs. This may sound like a little thing, but it can have a major impact on your stress level, and thus your wellness and happiness.

How can assistive technology and products help caregivers make it easier to take care of their patients?

From assistance with day-to-day life, to managing sleep or medication, there are many technologies to make life easier for the elderly and their caregivers. Most importantly, caregiver alert systems and elderly monitoring devices can help monitor elderly parents remotely. 

Caregivers can invest in senior monitors with specialized sensors to become their eyes and ears. Elderly monitoring devices alert caregivers to potential health or safety issues from a few or thousands of miles away. All devices are unique but generally track comfort, health, location, safety, and wellness.

Elderly monitoring systems collect a range of data like movement, temperature, behavioral and sleep patterns, and more. The information provides caregivers and medical professionals with important insights into a senior’s health and daily life.

Medical alert devices can be used at home or in a senior living community, depending on the community’s regulations. Many include emergency buttons, or they use sensors to detect emergencies like fires and falls. Calls to the police or a caregiver can usually be made directly or indirectly depending on the monitoring system.

Disabilities can come in many forms. How can caregivers empower individuals with different types of disabilities to succeed and make the most of their lives?

As much as a caregiver looks to take care of and protect a person with disabilities, it is important to always remember to constantly be providing them with opportunities to take care of themselves. This will allow them to make the most of their lives. 

As my mother’s dementia became worse, I found I could often quiet her stress and uplift her mood by encouraging her with positive affirmations like “You can do it mom” and “Believe in yourself, you got this.” And of course, always reminding her of how much I loved her and would always be there for her. The most important thing, of course, is not to give up on them.

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