Families Role

Deterioration of an elderly parent is frightening to watch. Families anxiously observe increasing frailty or progressive illness of their loved one(s) and wonder if or when they should assume responsibility. The dilemma is also painful for the older person who worries about becoming a burden or being institutionalized.

Families are likely to have no previous experience and little information to guide them in assessing the situation, weighing choices, or in evaluating potential helpers and helping agencies.

Before deciding what steps to take, families must determine the condition of their parent(s). Changes in physical and emotional health and functional capabilities that will make it more difficult to remain independent should be noted and shared with appropriate formal care providers, such as a physician.

Factors to Determine
Other factors also need to be evaluated by the family. These include:
  • Availability of financial resources.
  • Available family resources;
  • Is parent's condition treatable?
  • Parent's wishes regarding his/her own care;
Questions to Ask
Here are some questions for family members to ask themselves and others regarding their parent's care, so that appropriate decisions can be made:

Parent's Condition
Can your parent:
  • Remember what to do or what to say (memory)?
  • Decide when to do something or when not to do something (judgment)?
  • Be left alone without fear of falling or accidental injury?
  • Be relied upon to eat?
  • Go to the toilet as appropriate?
  • Keep himself/herself clean/neat?
How Treatable Is Your Parent's Condition?
  • In addition to determining the answers to these questions, it is important for the family to get an idea of which of their parent's conditions are temporary and will get better with time and treatment.
  • Fatigue, poor balance, muscle weakness, slurred speech, and other symptoms that may result from heart attacks, strokes, etc, may be correctable if rehabilitative therapy is provided soon after a disability occurs.
  • If the family is not getting enough information from the health care team, they will need to find someone who can determine which conditions are reversible, which will get better with rehabilitative therapy, whether treatment will halt progression and prevent worsening of conditon(s), or whether the parent's condition will not respond to treatment at all.
  • The family has to persevere. They may observe that their parent is incontinent, disoriented, or in pain. These are not normal.
  • In addition, memory loss is not normal. It is not the same as forgetfulness that we all suffer from at one time or another. Talk to the doctor, nurse, social worker, discharge planner, home health care professional and get the answers!
How Much Money Is Available for Temporary or Permanent Help?
Look at the parent's personal assets and potential contributions from children. If funds are insufficient, the Office on Aging will refer the family to the appropriate government programs.

Has the Parent Saved for That Rainy Day?
It is important to realize that the rainy day has arrived. Perhaps the parent has set aside funds for funeral expenses, medical bills, and daily needs. These items subtracted from total assets indicate what is available to be used for the parent's care.

How Does Your Parent Feel About His/her Situation?

  • Has your parent expressed feelings about the future?
  • Will he/she be heartbroken if required to leave home?
  • Has your parent expressed a desire to go/not to go into a nursing home?
  • Has your parent made arrangements or plans for his/her situation and shared it with the family?
  • Does your parent have a will and/or has he/she drawn up a living will or a durable power of attorney in case he/she is incapacitated?
Who Among the Family and Friends Is Willing to Help and When?
If a decision is made to keep the parent at home, a family member can organize a plan so that everyone who is able can participate in the care. By scheduling the type of help needed, times tasks need to be done, and hours required, a weekly chart can be drawn up. Shared arrangements of this kind can assist primary caregiver(s) and help avoid burnout.

When More Help Is Needed
  • A call to the Office on Aging will provide information regarding the kind of help that is available in the home for disabled elderly persons.
  • Nurses, nurses aids, personal care aids (bathing, toileting, dressing), respite providers, companions, etc., can be hired. Each helper has a specific set of service he/she is trained to provide and charges an hourly rate for the services; some are licensed, others are not.
  • If the parent is low income, some of the care just described may be arranged through Medicaid.
  • Medicare licenses certain home health agencies that can provide the professional services of a nurse, nurse's aide, physical therapist, occupational therapist, and other services such as personal care to support an elderly person's recuperation at home. A physician must order and supervise these services.
  • Be sure you know what Medicare and supplementary insurance(s) will reimburse. Medicare only reimburses for licensed home health agencies which are designed for short-term acute illnesses. It does not provide for any private duty services in the home. Also, it does not provide reimbursement for personal or custodial care for the long-term chronically ill.
  • There are organizations, both public and private, that have volunteers that can provide occasional assistance. The Office on Aging's Senior Information and Assistance Program (410.638.3025) can put you in touch with these organizations.
  • The Department of Social Services offers In-Home Aide services. The local Health Department offers the Personal Care Providers Program. Many services are based on eligibility.
  • Often after a hospital stay, additional assistance is needed when the individual returns home.
  • It is very important that family caregivers not exhaust themselves in the process of providing care. There are various home health care agencies available in the community.
  • It is important to remember that a doctor's prescription is necessary if home health care is to be covered by Medicare. The family should ask the doctor to write an order for a home health professional to assist with care or their family members.
  • Home health agencies provide services such as: skilled nursing care, rehabilitation services, home IV therapy, medical social work, home health aides, and clinical specialties.
Families and elderly often spend too much in both money and energy when illness occurs and end up exhausting both resources. To overcome this:
  1. Know what Medicare will pay for
  2. Divide the tasks among the family
  3. Hire the help for tasks you can't do
  4. Put one or two persons "in charge", i.e:
    1. To see to it that everyone knows what's going on
    2. To report to medical professionals
    3. To give instructions to "workers"
    4. To make arrangements with community agencies, if needed
This applies even when the person is placed in a nursing home or other facility.