Caregivers

Alabama Select Network wants to provide you with useful information, tools, and access to resources that can help you in your role of being a caregiver. No matter if you are a new or an experienced caregiver, we want to help you along the way. This section includes links to local and national resources to help you take care of your loved one and to help you take care of yourself. Contact us directly at 1-855-288-7755 if you have any questions or concerns about your role as a caregiver.

Caregiving 101

What does it Mean to be a Caregiver?

A caregiver is defined as a family member or paid helper who regularly looks after a child or persons who are sick, elderly, or have disabilities.. The responsibilities of this role look different for everyone and depend greatly on the needs of the individual.

How do I get started?

If you are new to the role of a primary caregiver, the amount of advice on the internet can be a little overwhelming. Add the emotions you may be experiencing, like fear and sadness, and it can make it harder to determine how to begin this journey. Here are some good tips on getting started.

Communication. If you are taking care of a parent or another adult, have an honest conversation with them. It is important that they should continue to be involved in discussions about their care and to make their own decisions (unless they are severely incapacitated). They may be experiencing some of the same emotions you may be experiencing. They may be afraid to have to ask for help or be a burden on you. Learn what they want from you and discuss expectations. It is also important to determine how much you can handle in the role. Caregiving can be challenging on both someone’s psychological and physical well-being. Clarifying roles and expectations will help to avoid hurt feelings, let-downs, and confusion down the road.

Create a Plan and Schedule.  Start by making a list of what needs to be done. This may include basic care needs like bathing and grooming, medication intake, and food preparation. Begin to make a plan and schedule of how and when you are going to get these tasks completed. This may help give you a sense of control over the situation. It is also important to have a backup plan for times when you are unavailable or need a break. From time to time, you may need to enlist a friend or loved one to help you. Share a copy of the plan and schedule with everyone who is willing to be involved.

Build a Support Network. Having support and help from others is very important for both the wellbeing of the person under your care and for you. Are there other family members that can help, such as siblings, your children, or a spouse/partner? Consider having family meetings to discuss what family members can do to help and what you can delegate to others. For example, a sibling living in another state can help to pay bills online or research the internet on services available in your area. Sometimes people want to help, but do not know how or what they can do for you. Do not be afraid to reach out, delegate tasks, or accept offers of help from others. Consider joining a support group to learn about respite care services available in your area and to get advice from others in your shoes.

Caregiving in a Nursing Facility Setting

There are a variety of reasons to move a loved one into a nursing facility. They may need skilled nursing services or 24/7 care in a safe environment. The transition may be emotionally challenging for the caregiver and care recipient. There may be feelings of guilt, sadness, relief, and calmness associated with the decision. Your role as a caregiver does not end because your loved one resides in a nursing facility, it simply changes form. Here are a few helpful tips to aid in the transition.

• Visit often, daily if possible, especially during the first few weeks. It may take time for them to adjust to a new schedule and new surroundings. When they are more comfortable and settled in, create a visiting schedule that works for both of you.
• Get to know the staff and build relationships. They can be a helpful resource in adjusting to the routines of the facility. Make sure to treat everyone with respect.
• Help staff members get to know your loved one by introducing them, sharing stories about your loved one’s life, and putting up family pictures.
• Learn about their new routine and become familiar with the facility. It is good to know where to get things like clean linen, snacks, water, and ice.
• Attend events and participate in activities with your loved one. Play games or watch television together.
• Encourage your loved one to participate in Nursing Facility social activities, and to eat in the lunch room with others, if possible. This will help form relationships with other residents in the Nursing Facility and lessen the feeling of loneliness and isolation.
• Speak with the facility’s administration if you have any concerns about the care your loved one is getting. You may also contact your local Long-Term Care Ombudsman by calling 1-800-AGE-LINE (243-5463). They investigate and work to resolve problems and complaints affecting long term care residents.   
• Give it time - adjusting to new living surroundings or situations takes time. Talk with the facility’s social worker if you are having concerns with the transition.  

Caring for Someone with HIV/AIDS

When caring for someone with Human Immunodeficiency Virus (HIV) or Acquired Immunodeficiency Syndrome (AIDS), it is important to understand what it is, how it is transmitted, and how to prevent complications. Although HIV/AIDS are not new, a significant amount of misinformation, myths, and stigma remain. You may be experiencing a wide array of emotions. Perhaps you just learned of their diagnosis or they feel uneasy approaching the subject with you. Accurate and correct information can help manage expectations, debunk myths, and better prepare you to provide care for your loved one.

HIV is the virus that causes AIDS. It tricks the body’s immune system (our defense system) into attacking itself. A weakened immune system leaves the body more susceptible to germs and infections. A person with a healthy immune system may get mild symptoms as a result of a cold virus. In contrast, the same cold virus may cause severe illness in a person with a weakened immune system.

Prevention is key when caring for someone with HIV/AIDS. Washing your hands often, getting vaccinated, and preventing family members or friends from visiting while they are sick, greatly reduces exposure and transmission of germs. Some other helpful tips include:

• Understand what medications and dosage they are taking, possible side effect, and when to call their doctor right away.
• Provide a well-balanced diet and encourage them to eat.
• Make sure to wash all fruits and vegetables, cook meats well, and prepare meals and snacks on clean surfaces and with clean cooking utensils to avoid food-borne illnesses.
• Depending on your loved one’s physical condition, they may need help to shift positions in bed or to move about. Their doctor, nurse or physical therapist can teach you simple exercises and/or techniques.

Proper nutrition, exercise and rest are important for you as well. Consider seeing a counselor, joining a support group, and learning about respite care services in your area.

Taking Care of Yourself

What is Respite Care?

Respite care is a service that provides the family caregiver and the care recipient a temporary break. Taking care of yourself is vital for not only your wellbeing but the wellbeing of the person you are caring for. Without taking breaks or paying attention to your needs, you are more likely to feel exhausted and/or overwhelmed. The role of a caregiver is not easy and can take a toll on your wellbeing.

In order to be at your best to care of your loved one, it is important to plan regular breaks from your responsibilities and duties as a caregiver. It works best to take breaks before you get to the point of feeling exhausted or before feelings of isolation or being overwhelmed set it. In addition to planned breaks, there may be times that you may need unplanned respite services due to unforeseen situations like a personal health crisis. Knowing your options is the first step in being prepared for these situations.

How can I access Respite Care in Alabama?

If you are caring for a participant in the ICN program with Alabama Select Network:

• Contact the Alabama Select Network at 1-855-288-7755

If you are caring for someone who is not already in the ICN program with Alabama Select Network:

• Call 1-800-AGE-LINE (1-800-243-5463), they can help you find the nearest Area Agency on Aging location to you.

Where Can I Find More Caregiver Resources?

Articles

8 Rules for New Caregivers: https://www.aarp.org/caregiving/basics/info-2017/new-caregivers-rules.html?intcmp=AE-CAR-BAS-R2-C2

Holding a Family Meeting: https://www.caregiver.org/holding-family-meeting

Tips for AIDS Caregivers: https://www.webmd.com/hiv-aids/aids-care#1

Tools

Apps to Help Caregivers Stay Organized: https://www.aarp.org/caregiving/basics/info-2017/scheduling-apps-ag.html?intcmp=AE-CAR-BAS-IL

Caregiving Hacks Video: https://www.aarp.org/caregiving/basics/info-2017/tips-hacks-video.html
This video offers simple solutions to make everyday tasks easier.

Websites

AARP Family Caregiving: www.aarp.org/caregiving/
Find free care guides, legal checklists, care options and an online community that supports all types of family caregivers.

Alabama 2-1-1: www.211connectsalabama.org
(888) 421-1266
Callers can access a wide array of services in Alabama such as support groups, home health care, respite care, and community involvement opportunities.

ARCH National Respite Network and Resource Center: www.archrespite.org
Find programs and services that allow caregivers to get a break from caring for a loved one.
Aunt BERTHA: www.auntbertha.com
Information, education and services for family caregivers on relief for caregivers, food, transportation and much more. Including a search engine of services by zip code and in various languages.

Caregiver Action Network: www.caregiveraction.org
Formerly known as the National Family Caregivers Association, it provides information and education for family caregivers, including a volunteer support network in over 40 states.

Family Caregiver Alliance: www.caregiver.org/family-caregiver-support-program-fcspalabama-cares
(800) 243-5463
Support and services for family caregivers in Alabama. Including online support groups and a nationwide newsletter on issues affecting caregivers and their families. 

National Alliance for Caregiving: www.caregiving.org
A coalition of national organizations focused on family caregiving issues.

National Library of Medicine - AIDS Source: https://aids.nlm.nih.gov/topic/1203/specific-populations/1212/caregivers
Find a list of sources offering information and tips for HIV/AIDS caregivers. 

Veterans Administration: www.caregiver.va.gov
855-260-3274
Support and services for families caring for veterans. Maintains a VA caregiver support line.