Quick Start Caregiving ... Dealing with a Health Crisis

Responding to a Health Crisis ... Quickstart for the Unexpecting Caregiver

 Where are WE? What must we do now?

Introductory information to help you and your family get started and plan ahead.

If your parent or partner suddenly became ill or was injured, you probably had little time to plan ahead. Your goals are focused on the present time and the days ahead so you can prepare:

• To deal with the crisis and your feelings,
• To manage your (and your loved one's) everyday responsibilities,
• To learn about the nature and impact of the health disorder, and
• To make arrangements for his or her care.

In many cases, an ongoing, often unrecognized, disease (such as atherosclerosis, high blood pressure, and/or diabetes), leads to an acute event (such as a heart attack, stroke, or coma) requiring hospitalization and possibly, major surgery. Trauma caused by automobile collisions, other accidents such as falls or violence may result in life-threatening injuries and long-term care needs. In any case, identify your feelings and talk with a close friend about what you are going through during this time of acute stress. Take a break to relax muscle tension and take some slow deep relaxation breaths. At times of crisis, it is easy to forget about yourself. You are probably exhausted, not sleeping or eating as you normally do. Take the time you need for your health.

Of course, your time away from your family, job, and other obligations requires making arrangements. You may need to notify your partner's or parent's employer, close friends, and others who depend on him or her. Beyond an initial personal phone call to family and friends, you might consider updating everyone on your loved one's progress by developing a group email list. By sending updates on a regular schedule, you do not have to continually repeat this information, giving you more time for other things. If you're a parent, assistance in caring for your children needs to be arranged - not an easy chore - involving transportation, babysitting, shopping, cooking and helping with homework! If your parent lived alone, you will need to arrange payment of bills, home security, lawn care, etc. How your life changes!

 What will we need to get there? What do we need to do now?

Checklists and ideas in this section are designed to assist you in identifying current and future needs as well as relevant personal and community resources.

You may have found yourself scrambling for all the information you need and for documents needed by agencies providing care.

Gather existing documents related to health insurance (with information about specific coverage), Social Security, Medicare or Medicaid benefits, and legal documents such the Advance Health Care Directive (Instructions for Health Care Decisions and the Power of Attorney for Health Care). The Advance Health Care Directive varies by state.

During your loved one's hospitalization, consider how your life may change in the process of helping. These responsibilities may be short-term or long-term depending on your partner's or parent's ability to take care of himself or herself and the nature of the illness or injury and its treatment. Now is the time to consider what will be needed to keep you and your loved one at your healthiest.

Get the Information and help needed ...

From the Health Care Team

• Description of the diagnosis, patient's condition and expected progress after discharge.
• Symptoms, signs of possible complications, or side / adverse effects from treatment.
• Information about treatment after discharge (medication information, at home treatments, required therapy, and an exercise/ activity prescription).

From Community Agencies

• Referrals to resources
  • Call Delaware Helpline at (800) 464-4357 or go to www.delawarehelpline.org (a free service) to search for information on state government agencies and referrals to community resources.
  • "Guide to Services for Older Delawareans" Delaware Health and Social Services - a comprehensive directory of services in English and Spanish - call (800) 223-9074 for a copy. Also available online at www.dhss.delaware.gov/dhss/dsaapd/publica.html.
• Caregiving
  • Caring Partners at the Caregiver Resource Centers at the Newark Senior Center and the Wilmington Senior Center. Individualized assistance from the Coordinator.
  • CARE Delaware services for family caregivers caring for older persons including respite care, support groups, individual needs assessment, care planning, and helpful information. Call (800) 223-9074 or visit www.DSAAPD.com
• Medicare, Medicaid and Insurance
  • ELDER info Delaware Health Insurance Assistance Program (800) 336-9500
  • Delaware Insurance Department (302) 739-4251
  • Medicare Part A (800) 442-8430 and Part B (800) 444-4606
  • Medicaid Office (800) 372-2022
  • Veterans Affairs (800) 461-8262
  • Social Security Administration (800) 772-1213
• Legal issues
  • Community Legal Aid Society of Delaware (302) 575-0690 (New Castle County)

 How will we do it? The Power of Pulling Together

What can we do to strengthen our caregiver-care receiver relationship and our "caring partnerships" with close friends, family members, and community agencies?

• Deal with thoughts and feelings you and your family are experiencing by getting help, as needed.

  Health care crisis often triggers family crisis and a sense of disorganization as well as powerful feelings and emotions. Crisis can bring families together or rip them apart. Acute care settings such as hospitals with emergency departments and intensive care units often have a variety of trained volunteers, understanding nurses, medical social workers and compassionate pastoral care staff who have experience in comforting families in crisis. Many hospitals have chapels where families and friends may gather. Take advantage of the family support services while your loved one is in the hospital.

• Ease participation and communication.

  You and your family should decide on who will represent the family on the health care team. Identification of the "family spokesperson" is important for the transfer of important information and for ease in communication between the team members and other family members. New privacy regulations require the official designation of the person with whom medical information is shared.

• Prepare for hospital discharge.
  A Family Caregiver's Guide to Hospital Discharge Planning ♥ is an excellent booklet available at www.nfcacares.org or by calling (800) 896-3650.

  Usually hospitals will start discharge planning soon after admission. It is a process to determine a patient's needs to move from one level of care to another. A plan for your loved one's discharge is developed by the health care team, the patient, and his or her family by a discharge planner, who is often a nurse or social worker. The discharge planner needs your input to develop a plan that is realistic, safe and adequate. Although this is not a long-term plan, it is an opportunity to work with the discharge planner who can get you started in the right direction for arranging services such as nursing care, therapy, and equipment.

  A Family Caregiver's Guide to Hospital Discharge Planning advises:

  • "Be realistic" about what you will be able to do to provide care along with your other responsibilities,
  • "Be persistent" in getting a discharge plan that will work for both you and your loved one, and
  • "Be prepared" with the information, the training for care, and the home care services and equipment you will need.

  Before discharge, work with the discharge planner or social worker to determine eligibility for Medicare or insurance coverage of the care and equipment that will be needed after discharge. The availability/delivery of equipment such as a raised toilet seat, walker, wheel chair and other items, as needed, must be in place at homecoming. Preparing the home environment by moving furniture and rugs is one or several ways to increase safety.

 What can I do to preserve my health while caring for others?

This section provides information that may benefit your health by reducing caregiver strain, burden, morbidity and mortality.

It is easy to be so focused on caring for another that you forget to take care of yourself - particularly during a time of crisis. You may be trying to balance responsibilities of your family and job with caregiving, and are worried about the costs of providing care. The stress that you may be experiencing increases your blood pressure, heart rate, blood sugar, and muscle tension - all of which can leave you feeling tired and achy, and at risk for your own health crisis. Your loved one's condition may be unstable and threaten his long-term health and extent of recovery. You may be facing many losses in your life as well. The emotional roller coaster ride may seem to last forever - shaking up your life, your home, your job, and a family that depends on you.

What can you do to start to stabilize your life?

• Take care of your health.

  Eat nutritious foods on a regular basis each day, watch your caffeine intake, and work on getting the amount and quality of sleep that will prevent you from getting sick during this time of crisis.

• Ask for help.

  This is often hard for people to do. People who want to help would rather know that they can do something that is most helpful to you. Giving and receiving needed support provides gratification and is remembered long after the delivery of another meal or bouquet.

• Make a list of the challenges ahead.

  Which challenges can be addressed or prevented by planning, active problem- solving, or asking for help from others?

  Which ones cannot be prevented or resolved?

  It may take time to deal with uncontrollable problems that often result in difficult feelings. Identify these feelings and consider the ways that you have dealt with loss, sadness, disappointment, depression, anger, fear and anxiety in the past.

  Did you use ways to distract yourself from dealing with these emotions, such as avoiding thinking about them, or refusing to talk about your feelings or getting help to deal with them?

  Did you find it better to use denial, alcohol or drugs to escape reality? If so, you may be headed for greater problems.

  You may consider using ways to cope with difficult feelings and uncontrollable situations by "reframing" how you view them in a different, more positive light.

  Many people rely on their faith to carry them through hardship.

  Acceptance of a situation often takes time and the support of friends, family, and professional help.

• Find help in your community.

  Contact local community agencies that support caregivers with information, referrals, support, and respite services. Contact non-profit health organizations dedicated to helping people deal with particular disorders or disabilities such as the American Heart Association, the American Lung Association or Easter Seals. These agencies often can connect people with others who have had similar experiences and they may host support groups.

  Utilize the Caring Partners Program options - including the some of the remaining modules of the Preparing for Caring Program. Make sure you take a look at "Caring for Your Parent" or "Caring for Your Partner".