The Caregiver Support Center

Becoming a Caregiver

Perhaps your spouse was diagnosed with a chronic or terminal illness. Or, you may be taking care of an aging parent. Perhaps a child has been injured in an accident. All of these situations – and others – give people new roles as caregivers. While often unavoidable, acting as a primary caregiver requires a significant commitment of time and emotional energy.

The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge. 

TSC has scoured the Internet and assembled links to the very best caregiving resources: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this Caregiver Guide even more helpful to survivors like you.   

JUST FOUND OUT

Survivors Say: Best Resources for Caregivers

• Family Caregiving 101
• CareGiver - For About and By Caregivers
• MedlinePlus: Caregivers
  

The Big Picture

Acting as a caregiver can be very challenging. Whether you provide occasional help or around-the-clock assistance to your loved one, caregiving is a taxing -- but very meaningful -- responsibility. Learning to be a good caregiver means figuring out what your loved one needs and how to provide that support.

For people who are long-term caregivers, the process can be emotionally draining. Sometimes the relative isn’t kind to the caregiver, and other family members may be reluctant to give temporary relief. Learning to take care of your loved one and yourself is vitally important.

National Family Caregivers Association

Your Role as a Caregiver

Being a caregiver often isn’t just about taking care of someone’s physical needs. There are administrative considerations as well, such as organizing the person’s affairs, planning doctor’s visits, and making medical decisions.

Elder Care Network: Becoming a Caregiver - Good Caring Requires Organization, Patience, Resourcefulness and Stamina

Becoming a good caregiver means being confidant in how you handle your loved one and their medical, emotional and physical affairs.

Strength For Caring: Becoming a Savvy Caregiver

One of the biggest issues in caregiving is making end-of-life decisions for someone else. Knowing your rights, as well as the wishes of the patient, is necessary for you to make the best decisions.

Vermont Ethics Network: VEN Publications 

Your World

Your role as a caregiver may last for a few months, or for a few decades, depending on the nature of the ailment. Preventing your own burnout should be a priority.

Help Guide: Preventing Caregiver Burnout

Caregiver Myths

• Most older Americans who need care get it outside of their circle of friends and family.
• Men typically do not participate in caregiving.
• Caregivers usually have few obligations beyond the person in need of care.

Information and Recommended Links for Survivors:  

• Taking care of someone with a form of dementia -- including Alzheimer’s disease -- can be extremely taxing. These loved ones are often difficult to care for because they do not remember their caregivers from day-to-day, and because they can become angry and combative without warning or provocation.

• Many medical facilities now offer support classes for caregivers, which initial studies show helps decrease anxiety and depression among caregivers.

          Bio-Medicine: Learning Skills Greatly Limits Stress for Family Caregivers, Says Stanford Study

Types of Caregiver Situations

Elderly

The majority of caregivers are assisting their aging relatives, usually their parents. These caregivers have to understand the many medications their loved one may be taking, as well as the loved one's financial situation.

Aging Parents and Elder Care: Helping People Overcome Challenges of Elder Care

Mental Illness

Adults with mental illness often need caregivers for at least part of their lives. This caregiving typically isn’t discussed as often as other forms of caregiving, but the emotional burden may be even greater than that of other forms of caregiving.

Mental Help: Mental Illness Takes Huge Caregiver Toll

Permanent Injury

Traumatic brain injury is just one example of a permanent injury requiring a caregiver. Learning how to handle the medical -- and personality -- issues associated with this type of injury is important

Brain Injury Resource Foundation: Traumatic Brain Injury and Quality of Life

Terminal Illness

People caring for loved ones with a terminal illness usually don’t serve in this role for as long as others, but they often have to perform a medical role that is not expected in other caregiving situations.

AMSA: Death and Dying Interest Group - Caregiver

Creating a Support Circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums.

Mental Health & Relief Matters

Mental Health Matters

As the number of people providing care for their elderly parents increases, more organizations are researching the effects of being a caregiver. The number of people who need help for depression while they are caregiving -- and even afterwards -- is high.

Family Caregiver Alliance: Caregiving and Depression

Relief Matters

Getting time off from caregiving is essential. In the ideal situation, family members and friends will offer their help. If not, the growing respite care industry can provide people to offer breaks to caregivers.

Elder Care: Respite Care - Getting a Break

Health-care Providers Who Can Help

Family doctors often coordinate care for people who have various medical needs, such as those in need of caregiving. The key for caregivers is to find one practitioner who is trusted and can serve as the clearinghouse for information about medications and medical needs. Caregivers, too, need to know as much as possible about the needs of the people for whom they are caring, and they need to have a good working relationship with the primary doctor.

Resources to Find Doctors

Finding a Family Doctor

Family Doctor: Choosing a Family Doctor

Using Respite Care

Help Guide: Respite Care - Understanding, Finding, and Using Caregiver Relief

Choosing a Caregiver

If your loved one needs to spend time in the hospital, and you need help with your caretaking responsibilities, know what to expect of and ask from another caregiver. While this resource is written for people who have undergone bone marrow transplants, the information is valid for all caretaking situations: 

The Leukemia/Bone Marrow Transplant Program of BC: How to Choose a Caregiver - FAQs

The Emotional Roller-coaster

Surviving the demands of caregiving can be a challenge for almost anyone. The emotional side of being a caregiver is difficult to discuss and to process. Sometimes caregivers feel guilty for being resentful of their responsibilities, and they often don’t care for themselves as they should. Understanding the emotional side of being a caregiver is important for surviving this time in your life.

Books Survivors Recommend

• A Caregiver’s Survival Guide: How to Stay Healthy When Your Loved One is Sick
• The Caregiver’s Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself
• The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own
• Self-Care for Caregivers: A Twelve-Step Approach

What Survivors Wish They’d Known

Communicating with Your Health-care Providers

• Keep a notebook to organize all medical information. Chances are you’ll see several doctors, and you need to be able to access information, such as dosages on medication, easily.
  
• Ask your charge’s doctors to explain all procedures and medications they prescribe. Never be afraid to ask questions.
  
• Find others who can stand in for you if needed. Be sure to keep them updated about what’s going on with your loved one’s medical care.
  

Dealing with Care-taking: Information for Co-Survivors:      

How you can help

• Offer to stand in for a friend you know is serving as a long-term caregiver. Sometimes just taking over for an afternoon can provide an immense amount of relief for the caregiver.
  
• Invite your friend or family member caregiver out to lunch or for an afternoon movie. Give them something to do that doesn’t involve being a caregiver or extensive planning.
• Let your friend know that you understand that caregiving is difficult. Sometimes caregivers don’t know where to turn when they want to vent, but you can make it clear that you’re there to hear anything they want to share.

What to say 

• "I know being a caregiver is tough, and I’m here if you want to talk.”
• "If you need someone to help you, I’m here. Just let me know what you need – an afternoon off, a good book to read."
• “Listen, you don’t have to do this alone. Let me know what you need. I’ll be happy to help or to find someone who can.”

What not to say

• "I’m sure you’ll feel better when it’s over."  
• "Why not just put her in the nursing home?"
• "Everybody has to be a caregiver at some time."

Things you can do for a survivor every day

When you have a friend who’s a caregiver, make sure to make them feel appreciated. Small gifts – a DVD you thought he’d like or tickets to a local sporting event – can make all the difference. Because the patients aren’t always appreciative, caregivers can feel vulnerable and taken for granted.

How to build a support network

• Set up your TSC Co-Survivor Profile
• Create a support group for your friend or family member.
• Interact and provide updates

How to help a survivor deal with day-to-day challenges

• Caregiving When You Also Have Small Children: Strength For Caring - Helping the Kids Feel Important
• Caregiving for People With Dementia: Family Caregiver Alliance - Caregiver's Guide to Understanding Dementia Behaviors

You can thrive as a caregiver, but you need to be prepared to make changes to your schedule and to your lifestyle. Learning to make these changes is particularly imperative if you will be caring for someone long-term.

Caregivers are becoming more vocal about their personal needs. Learning from people who have been in the same situation as you may be the best way to ensure that you will thrive during this process. Among the top needs cited by caregivers are the need to have time to oneself and space that is one's own.

AmericanHeart.org: When You Need a Break

For most caregivers, the time for caring for the loved one will pass, either through finding a long-term care facility or through the loved one's death. Knowing what to do and how to reorganize one’s life after caregiving ends is important.

Hospice Foundation of America: After Caregiving Ends

In some situations, the caregiver decides they cannot continue serving in that capacity. Often the caregiver is burnt out, but in other cases, the amount of care needed rises to the point of requiring professional help. In that case, choosing a good long-term care facility may be in everyone’s best interest, even if it’s painful at the time.

Medicare: Nursing Homes

If your role as caretaker ends because your loved one dies, you will most likely feel grief and shock. Know how to handle your emotions so that you can recover and move on with your life:

ConcernedCounseling.com: Coping with Loss