Caregiver Support and Resources
Last Updated: July 16, 2021
Family caregiving requires limitless amounts of energy, empathy, and patience. While most caregivers will tell you that taking care of a loved one is a genuinely rewarding experience, it does come with a set of unique challenges.
The escalation of value and significance of caregiving due to COVID-19 and the aging population puts new stressors on caregivers. According to a report from AARP and the National Alliance for Caregiving (NAC), 48 million Americans are caregivers for someone over the age of 18. Nearly one in five (19%) are providing unpaid care.
Over the years, caregiving has been well-documented as a prominent source of stress. Caregiving can be severely exhausting – physically, emotionally, and cognitively – due to factors such as lack of boundaries, feelings of isolation, and the emotional toll of caring.
Caregivers are silent heroes, but they need all the help they can get like everyone else.
If you’re a caregiver looking for help and support, you’ve come to the right place. From self-care ideas to tips to online resources, this comprehensive guide aims to provide support options and resources for caregivers and help you better navigate your caregiving journey.
COVID-19’s Impact on Caregiving
Caregivers face challenges to their physical, mental, and financial health. In 2020, 23% of caregivers said that caring had worsened their health compared to five years ago. With the COVID-19 pandemic, caregivers are facing complications and uncertainties.
The effects of COVID-19 on caregiving include:
- Increased feelings of isolation
- Loss of support
- Higher stress levels
- Neglected health needs
- Accelerated technology adoption
Caregivers who are at most risk of these effects are those facing multiple demands and have compromised resources. Also, caregivers are often not permitted to accompany their loved ones to various facilities due to the pandemic. This is a problem for patients who can’t necessarily advocate for themselves.
Additionally, working caregivers bear the brunt of pandemic effects due to adult day care closures and lack of legislative protections (i.e., paid leave protections). They often have to make the difficult choice between their loved one’s care and their salaries.
Taking Care of Yourself as a Caregiver
Caregiving often leads to chronic stress, which can adversely affect the caregiver’s physical and psychological health.According to the Anxiety and Depression Association of America, 40-70% of caregivers show symptoms of depression. Caregivers also report the following ill-effects:
- Poor eating habits/loss of appetite
- Sleep deprivation
- Failure to exercise
- Failure to self-care when ill
- Delay or avoidance of medical appointments
Caregiving strains even the most resilient and patient people. Therefore, as a caregiver, taking care of yourself is one of the most important things you can do, but sadly also one of the most forgotten. After all, how can you effectively take care of others if you don’t care for yourself?
Ways to Reduce Caregiver Stress and Practice Self Care
Below are strategies to help you manage stress and practice self-care as a caregiver. These are activities that will address your emotional, social, and physical health:
Taking Care of Your Emotional Health
Take time to unwind daily
It’s normal to need a break from caregiving duties, and you should without feeling guilty. Take a short walk, get a massage, or do relaxation techniques.
Connect with someone
Meet someone for a quick coffee break. Make a phone call or a short text message to friends or family members. Connections will improve your mood and reinforce relationships.
Spend time reading a book, watching your favorite television show, or enjoying televised sports. Sit back and relax.
Keep a journal
Writing your thoughts and feelings can give you a better picture of your emotional health.
Taking Care of Your Social Needs
Caregivers often feel isolated because they lose touch with friends and even family members. Make sure to visit people regularly and nurture meaningful relationships.
Do activities and hobbies you enjoy, like playing sports, watching movies, and playing video games.
Keep things balanced
Primary family caregivers shouldn’t have to give up activities that are important to them. A little “me” time can go a long way.
Learn when to step back
Recognize when it’s time to step out of your caregiving role. Give yourself a long break, at least once a week, so that you can recharge.
Join a club or community
Pick a hobby or interest and find out how you can get involved. Whether it’s a local book club, cooking class, or football, it’s great to be with like-minded people.
Taking Care of Your Physical Needs
Regular exercise is guaranteed to improve your mood and energy levels. Try to exercise for at least 30 minutes a day, three times a week.
Eat a balanced diet
A healthy body is more equipped to withstand the stress of caregiving. Eat balanced and nutritious meals to keep your energy levels up.
Sleep deprivation makes you more prone to stress and affects your caregiving abilities. Sleep for at least eight hours a day.
Stay on top of your health
See your doctor on schedule and keep up with your therapy and medications. Always stay on top with your healthcare to be an effective caregiver.
Tips for Caring for An Older Family Member
If you’re a child, partner, or other relative who provides a basic range of care for an older individual with age-related limitations, a chronic condition, or physical or mental disability, you’re a family caregiver.
Many family caregivers want to always be there for their aging loved ones and provide the best care possible, but they can also feel overwhelmed, lonely, frustrated, or even angry. However, with the right help and support, you can offer loving care without compromising your health and well-being.
Below, we’ve outlined some tips to help make family caregiving a more rewarding experience for you and your loved one.
General Tips If You’re New to Family Caregiving
New to family caregiving? Here are some general tips to help you cope with your new responsibilities:
Family Caregiving Tips for Beginners
Learn as much as possible
The more you know about your loved one’s illness or disability, the less anxious you’ll be about your new responsibility.
Look for caregiving support groups
It helps to know that you’re not alone with your experience. Encouragement and support from other caregivers can go a long way in helping you cope.
Trust your gut
No one knows your loved one better than you. Learn to trust your instincts, but still, listen to doctors and specialists.
Encourage their independence
Just because you’re helping, it doesn’t mean you should do it all. Loss of independence can be devastating for older adults, so use technologies and strategies that allow them to regain their independence.
Know your limits
Caregivers experience anger and frustration because they’re giving more than they can. Be realistic about the time and effort you can provide, and communicate these limitations to family members, doctors, and other concerned parties.
4 Tips for Providing Compassionate Care
Being a family caregiver can be daunting, especially when most caregivers have assumed their roles under unexpected, but often tragic circumstances. Below are some tips to help create a positive environment for you and your loved one.
Tip #1: Observe and Accept Your Emotions
From anxiety to resentment to grief, taking care of a loved one with illness or disability can stir a host of difficult emotions. Recognizing and accepting these emotions is one of the essential steps to give the best care you can.
As a family caregiver, the following are some of the emotions you’ll experience and how to deal with them:
What You Might Feel
What Is It?
What You Can Do
Fear and anxiety
What if I make a mistake? What if something goes wrong? Loss of control can lead to feelings of fear and anxiety. You’re also concerned about the future and how your loved one’s illness will progress.
Don’t fixate too much on the “what ifs.” Focus on the things you can control. Make contingency plans whenever you’re not around.
Anger and resentment
Caregiving isn’t only exhausting, but it can lead to feelings of being unappreciated. You feel anger and resentment towards the person you’re caring for. You may lose your temper and speak out of turn.
Learn to forgive yourself if this happens. Step away if you have to, take deep breaths, and refocus.
Feelings of guilt make the role even more stressful. You may feel guilt because you think you’re not doing enough, or you believe you’re not doing a good enough job.
Don’t be too hard on yourself. Just imagine what would happen if you weren’t there. Take a step back and recognize the difference you make in your loved one’s well-being.
Sadness and depression
Caregivers face loss and change regularly. This eventually leads to feeling sad and depressed.
It’s normal to have bad days, but if you experience depression for more than two weeks, it’s time to see your doctor or therapist.
Exercise and social activities are also great for staving off sadness and depression.
Grief isn’t just about dying, but is more about loss. When a family member becomes sick, it changes the person you know and love – and you already start feeling the weight and pain of their loss.
Sometimes you just have to let it all out. Remember that it’s okay to cry, and that’s one way to relieve pressure from your body.
Tip #2: Connect With Your Loved One
When handled correctly, caregiving is a rewarding and meaningful experience. Take the time each day to connect with the family member you’re caring for. A deeper connection can release hormones that reduce stress, boost your mood, and stimulate a biological response that improves physical and mental health.
And the best part, it has the same effect on your loved one, too.
Even if your family member can’t verbally communicate, you must give them undivided attention for a short time each day. Avoid distractions like TV, smartphones, and computers when providing care. Make eye contact (if possible), hold their hands or stroke their face, and talk calmly and reassuringly.
Connecting in such a meaningful way can reduce stress levels and support physical and emotional health for both of you.
Tip #3: Seek Caregiver Support
Many primary caregivers think that they have to do everything independently, which is especially true for long-distance caregivers. This line of thought leads to caregiver burnout, affecting your ability to provide care.
As a caregiver, you need all the help you can get from siblings, friends, family members, and healthcare professionals. However, before you seek help, you should have an in-depth understanding of your loved one’s needs. Make a list of all the caregiving responsibilities needed, break them into smaller tasks, and make them as specific as possible.
The next step is determining which tasks you can reliably perform based on your skill and time limitations. The remaining activities are the ones you’ll need others to help you with.
People hesitate to ask for help because they either don’t want to impose or are concerned people will reject their requests. In reality, you’ll be surprised at the people’s willingness to help if you just let them know the exact things you need help with. Here are a few tips to make it easier for them:
- Make time to have a one-on-one conversation with each person.
- Go over the list of caregiving tasks you’ve drawn up.
- Specify which activities are most helpful or critical and ones that may be best suited for them (e.g., a sibling who’s good with computers).
- Find out if the person can assist in any other way.
In addition to seeking help from family and friends, other places where you can find caregiver support includes:
- Caregiver support groups and communities, local and online
- A local church, temple, and other places of worship
- National agencies, organizations, and groups for caregivers
- A counselor, social worker, or therapist
- Disease-specific organizations and charities
Tip #4: Don’t Neglect Your Needs
Caregiving can be a grueling grind, so many people tend to neglect their needs because they’re tired, burnt out, and overwhelmed. Unfortunately, burning out can affect your ability to provide care and connect with your loved one. According to the Alzheimer’s Association, being physically and emotionally strong is the best thing you can do as a caregiver.
Always take care of yourself first and address your needs. Please refer to our previous section about “Taking Care of Yourself as a Caregiver” for specific strategies on how to meet your physical, emotional, and social needs.
Caregiving for Someone with Alzheimer’s or Dementia
Caring for a loved one with Alzheimer’s disease or dementia presents many challenges to caregivers and families. Caregivers report that caring for a loved one with progressive memory loss results in greater numbers of physical and emotional health issues, as well as higher levels of psychological distress compared to other types of caregiving.
Below, we explain why caregiving for someone with memory impairment is so challenging and things you can do if you’re in this situation.
The Challenges of Caring for Someone With Memory Impairment
1. Dealing with the Impact of the Disease
One of the most challenging aspects of caring for dementia patients is mood swings and challenging behaviors. Patients can display problematic behaviors like aggression, paranoia, boredom, loneliness, and more. For caregivers, it’s a challenge to manage any changes in behavior and respond to someone who behaves aggressively.
2. Managing Physical Challenges
Dealing with incontinence and assisting with activities of daily living (ADLs) are some of the many physical challenges that caregivers face. As dementia progresses, your loved one will often need more support with personal care.
3. Ensuring Safety and Security
Is your home dementia-friendly? Is your house safe and secure enough without restricting your family member’s freedom too much? Dementia patients are prone to wandering around, so some caregivers opt to use technology to keep track of their loved ones.
4. Losing Motivation and Patience for Caring
Staying motivated as a caregiver is tough, even more so if you’re caring for a person with memory impairments. Aside from working tirelessly for long hours, many dementia patients cannot express feelings of gratitude, making caregiving a thankless job. Therefore, it’s easy to lose all motivation and patience when caring for dementia patients, which is a sign of burnout.
5. Neglecting Self-Care
One of the biggest challenges caregivers face is the failure to attend to their own needs. They get so wrapped up in their caregiving duties that they stop paying attention to their own needs. This leads to deteriorating physical and psychological health and may compromise your capability as a carer.
Tips for Caring for Someone with Alzheimer’s or Dementia
Below, we have compiled a list of tips to reduce stress and alleviate the challenges of caring for a loved one with Alzheimer’s or dementia.
Tips for Caring for Someone With Dementia
How You Should Do It
Set a positive mood
Speak to your loved one in a calm, pleasant, encouraging, and respectful way to set a positive mood for interaction. Be affectionate, use facial expressions, and speak with a cheerful voice.
Simplify your message
Use simple words, phrases, and sentences. Keep your explanations as briefly as you can and in a reassuring tone.
Make mealtimes easier
Limit distractions such as TV and radio. Only offer one type of food instead of numerous options. Cut food portions into smaller pieces. Be patient and don’t rush to finish the meal.
Participate in activities
Involve them in activities they enjoy, such as scrapbooking, gardening, knitting, watching their favorite shows/movies, and caring for household pets.
Avoid frustration by staying flexible and expecting the unexpected.
Create a dementia-friendly environment
Make your home more dementia-friendly to reduce the risk of injuries. Some examples include installing grab bars, using locks, checking water temperature, and taking fire safety precautions.
Remember the good old days
Avoid asking questions that rely on short-term memory, such as asking what they had for breakfast. Instead, ask general questions about your loved one’s distant past and fond experiences you’ve shared.
Dos and Don’ts of Interacting with a Loved One with Dementia
Successful conversations with dementia patients takes a lot of trial and error, along with respect, patience, and practice. Remember these dos and don’ts when communicating with seniors with dementia:
✔ Talk in short, simple sentences
✘ Talk with complicated words and phrases, and change them around when repeating
✔ Respond to the feelings rather than words
✘ Say things like: “Do you remember?” “I just told you that,” and “How could you forget that?!”
✔ Use facial expressions and often smile but not in a mocking way
✘ Wait for a response in silence and without eye-contact
✔ Talk at an eye-level
✘ Stand and talk over them in dominance
✔ Leave the room to avoid confrontations or if you’re feeling frustrated
✘ Argue and tell them they’re wrong
✔ Introduce yourself and explain why you’re entering their space, taking them to an appointment, etc.
✘ Say things like: “What do you mean – who’s your son? I am your son,” if they’re confused about why you’re present
How To Get Paid for Taking Care of a Loved One
Family caregiving is the backbone of long-term care in the U.S., and it saves the nation $470 billion a year. However, almost one in five caregivers are unpaid, and many of them are not even aware of the role they took on.
However, many family caregivers experience severe financial hardships due to accumulating medical costs and loss of income. Fortunately, caregivers can take advantage of numerous programs to get them paid while caring for a loved one.
What Is It?
How it Works
Self-Directed Care Programs is a service model that empowers Medicaid-eligible participants with control over their long-term care and support at home.
When enrolled in one of these self-directed programs, your loved one has the option to manage a budget that may be used to hire and pay for a caregiver - including relatives and friends who serve as informal caregivers.
HCBS programs deliver opportunities for Medicaid recipients to receive ongoing support and care in their own homes and communities.
Typically available to people with developmental, physical, and mental disabilities, and older adults.
HCBS programs provide financial assistance to caregivers while improving their caregiving skills.
The VDC program allows veterans to self-direct their LTSS and manage their budgets which may be used to hire and pay in-home caregivers.
This program provides veterans with a budget and allows them to avail themselves of in-home care instead of receiving services from the VA health care system.
In some cases, the recipient's family members can be paid for the care they provide.
Long-Term Care Insurance
If your loved one has long-term care insurance, it may cover home health care and personal care services.
Not all policies provide coverage for paying spouses or family members living in the same household.
Contact your loved one’s insurance agent or company and ask about caregiver payment benefits.
Some private employers offer paid family leave while you’re employed.
Alternatively, some states have enacted legislation for mandatory paid family leave programs.
The states that offer paid family leave include California, Colorado, Connecticut, the District of Columbia, Massachusetts, New Jersey, New York, Oregon, Rhode Island, and Washington.
Employees may receive 60-90% of their weekly pay for up to 12 weeks, depending on which state.
Find Caregiver Resources in Your State
Click on your state below to see what caregiver resources are available in your area.
Additional Caregiver Support Resources
Here are some places where family caregivers can get information, support, and direct services:
How It Helps
A nationwide service that connects seniors and their caregivers with reputable local support resources.
FCA provides services, education programs, and resources to help people manage the complex demands of caregiving.
The NFCSP provides a range of support options that help families and caregivers care for their loved ones at home.
+1 (202) 918-1013
The NAC is a non-profit organization dedicated to improving the quality of life of family caregivers and their care recipients through research, innovation, and advocacy.
CAN is a non-profit organization that offers free education, peer support, and resources to family caregivers all over the country.
Offers a wealth of information about issues affecting caregivers. It also provides free care guides, legal checklists, an online community, and a caregiver support line.
Offers an extensive list of online articles on common age-related problems, including a caregiving section that tackles long-term care, Alzheimer’s caregiving, long-distance caregiving, etc.
Offers extensive information and support for Alzheimer’s patients and their caregivers.
Also offers help via its 24/7 helpline, face-to-face support groups, and educational sessions in communities.
AFA offers several support services for caregivers including a toll-free helpline, telephone-based support groups, fact sheets, care connection webinars, and more.
Offers educational information and support that aim to help cancer caregivers.
Offers an online tool for finding adult day care services within your area.
Offers valuable resources on how you can get paid as a family caregiver.
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