Planning for Your Caring Partnership ... Where to Start

 Where do we start? Where might we be going?

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

You are beginning to realize that your lives will be changing soon ...

A recent diagnosis of a progressive illness,

Difficulties in remaining independent,

Signs that a chronic illness is advancing, and / or

A sudden health change leaving a brief time to get ready -

May leave you concerned about giving or receiving care.

What is most important for you to do now? PLAN Together.

Planning for giving help and receiving care can do much to control future stress. Of course, it is easier to postpone planning, deny the probabilities that the need for care will be a reality. Stress "piles up" with multiple changes that occur at the same time. Some stress can be prevented by finding the documents needed, opening lines of communication, and finding information and support that you will need later. The stress of figuring out how to rebalance your lives can be eased by involving others, determining what may be needed and how much help is available, and planning care using community resources. Some important early questions to tackle include...

• How can we maintain our relationship, exchange support, and build on each other's strengths?
• What health changes are occurring and how will they affect my partner's or parent's ability to take care of him- or herself?
• What type of help is needed now to maintain independence and control of symptoms, disease progression, and complications?
• What type of future care can we start to plan for now?
• What resources do we have? What resources do we need?
• Where can we get help? Information about care options? Financial and legal advice?
• What must we do to insure care will be given in a safe and caring environment?

 What do we need to do?

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.

Find the information that you need now:

• Health disorder(s) description including
  • current treatment and care needed.
  • causes
  • factors that increase or reduce symptoms
  • warning signs that urgent or non-urgent medical help is needed
• Information on how the health disorder(s) or treatment may influence your loved one's ability to
  • think clearly, remember, and be responsible for taking medications and other treatments
  • manage finances and records, appointments, travel arrangements
  • drive or travel by car, bus, or plane
  • behave appropriately and act normal socially
  • communicate and express needs, feelings
  • move, walk, get up and down steps, use hands
  • take care of personal needs - bathing, toileting, dressing, grooming
  Check out www.thoushalthonor.org/caregiv/ for their Caregiver Resource Center to help you consider future care needs.
• Care that may be needed
  • IADLs (instrumental activities of daily living) such as transportation, shopping, managing appointments, cooking, cleaning, etc.
  • ADLs (activities of daily living) such as personal care, feeding, bathing, assistance in walking, etc,
  • Nursing care - assessments and monitoring for changes, medications, preventive and prescribed procedures,
  • Special treatments such as physical or speech therapy, chemotherapy, radiation, etc.
  • Hours of care/day and level or complexity of care anticipated.
  To develop a care plan on the web, check out www.careplanner.org. It involves creating a confidential and personalized plan that is supported by helpful informational links.
• Available Community Services - to get you started

  Call or make an appointment to visit the Caring Partners Coordinator located within the Caregiver Resource Centers at the Newark and Wilmington Senior Centers. The Preparing for Caring Program for caregivers age 60 or younger (caring for a family member age 18 and older) is one initiative of the Caring Partners Program. Contact information is included in the Caring Partners Program brochure and business card. There is no charge for this program.

  Take advantage of CARE Delaware's statewide program of informational, referral, support and respite services for caregivers caring for frail or ill persons age 60 or older. Community-based Caregiver Resource Centers are located throughout Delaware including the locations shared by the Caring Partners initiatives - the Wilmington Senior Center and the Newark Senior Center.
  Check out the web for help finding services you need - www.dhss.delaware.gov/dhss/dsaapd/publica.html or call (800) 464-HELP the Delaware HelpLine for the Guide to Services for Older Delawareans.
  If you are caring for an aging parent, consider registering for the Aging Parents awareness and educational program coordinated by the Delaware Ecumenical Council on Children and Families at deccf@aol.com or call (302) 225-1040 (Northern New Castle County). They also provide free programs for caregivers of those aged 60 or over. Taking Care, Giving Care workshops prepare caregivers to give hands-on care.
• Information on various living arrangements and how to select assisted living and nursing home
  Request a Delaware Cares About Your Well Being: How to Select Long Term Care ♥ brochure with the "Nursing Home Checklist" and "Assisted Living Facilities Survey & Nursing Home Survey" (comparisons of Delaware facilities - # beds, relative cost range, availability of dementia and specialized services. Delaware Cares, Long Term Care Ombudsman Program, call (800) 223-9074.
• Advice
  Loving Conversations: A Step-by-Step Guide to Help Families Discuss What's Best for an Aging Parent from the Easter Seals Society - www.easterseals.com(to download or order a copy) or call (302) 324-4444 or (800) 677-3800. Easter Seals also provides assessments for home modifications. Just call the 800 number and ask for extension 2060 or go to www.de.easterseals.com.
• Advice on legal issues such as Delaware's Advance Health Care Directive
  • Community Legal Aid Society of Delaware (302) 575-0690 (New Castle County)
  • Elder Law Program (302) 575-0666
  • Lawyer Referral Service (302) 658-5278
• Costs of care

  Considerations when budgeting for care: home modifications, assistive devices, medical and treatment costs, care services, living expenses, and others.

• For Medicare, Medicaid, and Insurance Questions
  • ELDERinfo 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
  The 2005 Guide to Health Insurance for Delaware Senior Citizens is available from the Publications and Guides section of the Insurance Commissioner's office www.state.de.us/inscom/departments/consumer/consumerhp.shtml or by calling 800-336-9500.
  Grab a copy of the book, The Cost of Caring: Money Skills for Caregivers ♥ by Johnson, A. M. & Rejnis, R. (1998), John Wiley & Sons, Inc. It is an excellent guide to sizing up caregiver concerns and short and long term financial planning and for helping your loved one with his or her finances.

Start to gather and organize the information available. Start a series of files with information, records, and documents you will need:

• Medical information - health history of illnesses, procedures and surgeries, allergies, medications currently taken (name - dose - time taken).
• Start a logbook to keep track of health changes, medications taken, blood pressure or glucose readings if ordered, all phone and in-person conversations with doctors, nurses and others involved with care. Keep a list of questions and answers to help you remember what to ask if the nurse or doctor should call and to take to appointments. Compose a list of contact information for doctors, therapists, emergency services, pharmacies, and other services involved with care.
• Legal documents - Advance Health Care Directive (state-specific end-of-life instructions, power of attorney for health care, organ donation approval).
• Record the location of legal and financial documents. Maintain a list of contact information for your loved one's lawyer, insurance agents/company, accountant, financial advisor, and others.
• Develop a list of information that is important for someone who may stay with partner or parent when your leave. This list should include contact information for family members or friends who could help you in an emergency or be called by a substitute caregiver if problems arise. Have a contingency plan in case all doesn't go as planned.

As the need for care increases, other information may need to be gathered. Several products and checklists are available to help you.

 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?

A good start involves learning how to get things done efficiently, but most importantly in ways that build support and sharing. Strengthening close relationships between the caregiver and care receiver as well as close friends and family is important. Active involvement is the key to health and maintaining independence for the care receiver and the key to sharing responsibilities for care.

Your partner or parent must actively participate in all decisions involving his or her health and care unless mental or cognitive impairments prevent involvement. Planning with the person who may need assistance strengthens and builds a more balanced relationship of mutual understanding and respect.

Build family and friend support and resources. Start by sharing the powerful emotions and feelings such as anger, sadness, guilt, frustration, and the positive aspects of caring for someone you love. Have a positive, optimistic, yet realistic, approach. Remember not to blame your loved one. If you must blame, blame the illness.

Encourage your partner or parent to maintain as many activities as possible. Do not assume tasks that your loved one is capable of doing safely. Support opportunities that enable social contacts - from telephone conversations, visits with close family and friends, to emails and online support groups.

Involve the care receiver and close family members in the organizational activities mentioned earlier ...

• Gathering (or completing) and filing important health, insurance, financial and legal documents,
• Discussing, tape recording or writing down his or her preferences and dislikes, concerns, wishes, and goals related to future care.

Talk with the health care providers involved with treatment. Remember that nurses and social workers are educated in helping people with the effects of illnesses and treatments. They learn from the experiences of caring for many people just like you.

• Ask for assistance to find the many agencies and organizations in your community that exist to help caregiving families. Talk to experts in the community who connect people to the resources they need.

Be an advocate for your own and your partner's or parent's health. Don't settle for less than what you need in services, care, and information from health care providers and community agencies.

 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.

As a caregiver, put your health first. If you are not taking care of yourself properly, you will quite likely feel sick and be sick. Then, you will not be able to help others who need you. Remember that your health, feelings, and coping behaviors influence your parent's and/or partner's health, feelings, and coping behaviors, and vice versa. By keeping yourself healthy, you help others stay well, also.

Think about what you can do in getting started...

• Consider your own health...What health issues or conditions limit your ability to help? Arthritis in your knees or hands, back pain, being overweight, or out of shape limit your abilities to lift or support your partner or parent. Depression or other mental disorders may deplete your energy and make you more ill. Will caregiving interfere with time with your family and friends? With your health habits - eating, sleeping, exercising, relaxation, and recreation?
• Consider responsibilities you have every day... "Tasks" such as caring for yourself, for your family, for your home, and for your job. Anything that you can give up or change to increase the time and energy you have? Any temporary or permanent alterations to increase the flexibility you have in doing your work at home or at your job?
• Learn that asking for help is not a sign of failure. Talk with your employer, a close friend or a counselor.
• Am I up for the tasks of caregiving?Remember no one can do it alone. Think of it as a team effort.
• As you gather information and support, talk about the tasks of caregiving with your family. Make a list of what can be done now and welcome others to take the tasks they enjoy or fit into their lives. You do the same.

  Roles and Tasks in the Preparing for Caring Phase might include:

  • The family spokesperson during hospitalization, doctor's visits - who shares important medical information with other family members.
  • The computer whiz who searches the Internet for essential information and then, sends an email with attachments of the information to others.
  • The designated driver for transportation needs on certain days.
  • The grocery shopper or gourmet cook.
  • The secretary who arranges services, schedules, and pays the bills. The financial manager who determines how the costs of care will be paid.
  • The nurse who feels good by helping with personal care, listening and learning how to look for signs of health changes and what to do about them.
  • The eternal optimist who communicates the good side of everything and reminds everyone that their care is appreciated.

  When the time comes for increased care, roles may change, but the teamwork hopefully, will remain.