Dr. You

Caring for a loved one is a challenging but rewarding journey. Caregiving roles change as the needs of the person being cared for change. This section provides essential information and practical tips to help you navigate the caregiving process while prioritizing your well-being.

Patient Story – (The story is true; the patient’s and provider’s names have been changed.)

Madeline Kurshner, an employee of a fortune 100 company, became a full-time caregiver for her husband, Charles, after he was diagnosed with pancreatitis in 2021. Charles’ condition quickly worsened, leading to Acute Respiratory Distress Syndrome (ARDS) and multi-organ failure. He required dialysis and ultimately needed a kidney transplant to survive. During this challenging time, Madeline not only cared for Charles but also managed responsibilities for their three young children. Despite the overwhelming demands, she remained resilient, supported by her employer’s enhanced caregiver benefits and the understanding of her colleagues. These benefits allowed her to focus on her family during the crisis.

After undergoing a kidney transplant, Charles made a near-total recovery. With Madeline’s unwavering support, he regained his health, and the family emerged stronger from the ordeal. Madeline credits the experience with bringing them closer together and cherishes the additional family time they gained during Charles’ recovery to a full and fulfilling life.

Caregiving Tips

The following tips are revised from the Caregiver Action Network, the National Institute on Aging, the Alzheimer’s Association, the American Association of Retired People (AARP), and the Family Caregiver Alliance:

1. It is critical to assess the clinical, social, emotional, financial, and personal circumstances of the person being cared for, and understand their care plan.
2. You MUST take care of yourself first to provide care for someone else.
3. Talk with the person being cared for and ensure that their wishes for future care are in writing via advance directives.
4. Find support. Identify people who can help with caregiving. It takes a village to provide effective care over an extended period of time.
5. Consider the safety of the living situation of the person being cared for.
6. Learn to communicate effectively with doctors and health care providers.
7. Build a strong relationship with your loved one’s primary doctor and their practice.
8. Carefully consider how care will be paid for and research the community resources available.
9. If you start experiencing negative emotions seek help from a family member, friend, or doctor.
10. Schedule regular breaks for yourself at least a few times each week.
11. Organize medical records and legal documents so they are available as needed.

The following checklists for care receivers and caregivers, revised from The Caregiver’s Handbook from the National Care Planning Council, identify guidelines for your consideration.

Check List for Care-Receiver

• All legal and financial matters are in order, and documents are available.
• Physical and dental appointments are scheduled annually or more frequently as needed.
• The home environment is clean, safe, and pleasant.
• Nutritional needs, exercise, sleep, and social activities are optimized as best as possible.
• Personal hygiene and grooming are done daily.
• Respite services and support are utilized on a regular basis.
• The level of care is continuously reviewed to ensure the home is the best setting for care.

Check list for the Caregiver

• Regular exercise and included several times a week.
• Social engagement is included on a regular basis.
• An average of eight hours of sleep and rest is achieved every night.
• There are visits from at least three friends or family members weekly.
• Medical and dental appointments are not missed.
• There is a focus on the health and well-being of the caregiver.
• All legal and financial documents, including wills, are in order and readily available.
• You understand the Caregiver’s Bill of Rights
• You are eating nutritious meals daily.
• You are not using unprescribed medication to manage my emotions.

Understanding The Caregiver Role

• Assessing Needs: Start by identifying the specific needs of your care recipient. This includes medical, physical, emotional, financial, legal, and social needs. Consult with healthcare professionals for a comprehensive assessment.
• Setting Realistic Expectations: Acknowledge that caregiving is demanding, and you cannot do everything. Focus on what you can realistically manage and seek help when needed.
• Building a Local Support Network: Connect with family, friends, and community resources. Do not hesitate to ask for assistance.
• Engaging in Care Planning: Recognize changes in physical, mental, social, and personal health and report them to health and care teams promptly.

Key Areas of Caregiving (Resource: National Institutes of Health)

Personal Care

• Bathing & Hygiene: Adapt your approach to the individual’s abilities and preferences. Consider using adaptive equipment, such as shower chairs or grab bars. Source: National Institute on Aging (NIA).
• Nutrition: Ensure a balanced diet that meets specific dietary needs. Consult a registered dietitian for personalized recommendations. Source: Academy of Nutrition and Dietetics
• Mobility: Assist with safe transfers and mobility. Physical therapy can improve strength and balance. Source: American Physical Therapy Association (APTA).
• Dressing: Selecting and putting on appropriate clothing daily.
• Transferring: Getting in and out of bed, chairs, and other surfaces.
• Toileting: Using the bathroom and maintaining continence.

Related Life Activities

• Meal Preparation
• Housekeeping
• Laundry
• Medication Management: Maintain accurate records of medications and their corresponding dosages. Use pill organizers and set reminders. Source: Agency for Healthcare Research and Quality (AHRQ)
• Doctor Appointments: Accompanying care recipient to appointments and advocating for their needs. Shopping
• Managing Finances

Types of Help Available

• Care Recipient’s Primary Care Doctors and Staff
• Care Recipient’s Specialists and Staff
• Family
• Friends and Neighbors
• Area Agencies on Aging
• Other Community Agencies
• Adult Day Care
• Handyperson Services
• Companion and Respite Services
• Specialized Geriatric Care Units and Practices
• Home Delivered Meals
• Congregate Meals
• Home Health Aides
• Home Health Care
• Housekeeping Services
• Transportation
• Telephone Support
• Skilled Nursing
• Physical Therapy
• Housing Assistance
• Tax Assistance
• Financial Assistance

Emotional Well-being

• Communication: Encourage open communication and active listening.
• Social Engagement: Facilitate social interaction and activities to prevent isolation.
• Mental Stimulation: Engage in mentally stimulating activities, such as puzzles, reading, or hobbies.
• Addressing Depression: Be aware of the signs of depression and seek professional help if needed. Source: National Institute of Mental Health (NIMH)

Practical Matters

• Financial: Discuss how the costs of treatment, caregiving, additional resources, and assisted living, memory care, or long-term skilled care will be covered.  
• Legal: Ensure that legal documents, such as power of attorney and healthcare directives, are in place. Consult an elder law attorney for guidance.
• Home Safety: Modify the home to prevent falls and ensure a safe environment. Source: Centers for Disease Control and Prevention (CDC)
• Prioritize Self-Care: Schedule regular breaks, exercise, and activities you enjoy.
• Seek Support: Join a caregiver support group or talk to a therapist. Source: Caregiver Action Network (CAN)
• Manage Stress: Practice relaxation techniques like deep breathing, meditation, or yoga.
• Set Boundaries: Learn to say no and delegate tasks.
• Monitor Your Health: Do not neglect your own medical needs.

When to Seek Additional Help

• Increased Care Needs: When the care recipient’s needs exceed your capabilities.
• Burnout: When you experience chronic fatigue, stress, and emotional exhaustion.
• Safety Concerns: When there are safety risks for either the caregiver or the recipient.

Conclusion

Caregiving is a marathon, not a sprint. Caregiving is a beautiful, stressful, rewarding, and challenging experience. It is common for a caregiver to experience feelings of anger, frustration, resentment, guilt, and bitterness. Unresolved conflicts between family members, a caregiver, and the recipient of care are also common. Understand that these feelings are natural. There are resources and caregiver groups, both online and local, that can help manage these feelings.

By prioritizing self-care, seeking support, and staying informed, you can provide the best possible care for your loved one while maintaining your own well-being.