Date: Fri 07-May-1999

Publication: Bee

Author: JAN

Quick Words:

Ashlar-Ilardo-caregivers

Full Text:

A Talk At Ashlar-- Caring For The Caregivers

(with photo)

BY JAN HOWARD

Joseph A. Ilardo knows first-hand what it's like to be a primary caregiver for

an ill or disabled family member. He compares the odyssey through the health

care maze to a journey taken by both the caregiver and the care recipient.

Dr Ilardo, PhD, LCSW, a psychotherapist, spoke April 28 at Lockwood Lodge at

Ashlar of Newtown on "Helping Families Cope: The Role of Professional

Caregivers," during a program sponsored by the four affiliates of Masonicare

-- Ashlar of Newtown, Lockwood Lodge, Second Home, and Homecare, Inc.

"Family caregivers are not prepared for what they will go through in this

odyssey," Dr Ilardo told about 60 area social workers and health care

professionals who attended the lecture.

Shortened hospital stays for a patient often necessitate the need for care by

family members, who are not prepared adequately for the specialized tasks they

must perform or for what they will go through during this odyssey, he said.

It is estimated that $200 billion worth of services a year are provided by

family caregivers.

Dr Ilardo said health care professionals are responsible for providing care to

all members of a family affected by the illness of an elderly family member.

"The extent caregivers need support has been greatly underestimated," he said.

"Caregivers are in need of our care," Dr Ilardo said. "We need to understand

what they are going through so we can help them."

The amount of help needed depends on the personalities of the people involved

and how much time the family members have to adjust. "There may be difficulty

in adjusting if it happens quickly," he said. "The quality of the relationship

also affects what happens.

"Educating caregivers is the key," Dr Ilardo said. "There is a real thirst for

knowledge," he added.

Caregivers need to understand what is happening and what is likely to occur in

regard to their loved one. They need to know what the demands will be as a

caregiver and the emotional reactions they will experience, he said. "They

need to know what help is available and where it is available."

Dr Ilardo said he has seen first hand the problems and concerns of caregivers

as well as those of the care recipient through caring for the needs and

concerns of his 90-year-old mother.

"We enter into the process with only a vague sense of what we are going to go

through," he said.

Looking back on his experience, Dr Ilardo said, "I have a better understanding

now of what occurred, but at the time I had a poor sense of what was going

on."

Dr Ilardo listed initiatives health care professionals could take.

"We need to acknowledge the extra responsibilities fulfilled by caregivers,

who pick up the slack where the health care system breaks down," Dr Ilardo

said.

"We need to understand what they are going through and plan and implement

programs to ease the burden," he noted.

He said the United Hospital Fund in New York is holding focus groups to

discuss what caregivers are going through and to find ways to help.

One of the problems is that family caregivers are inadequately prepared to

cope with the care of a relative, he said.

He said the journey is not willingly entered into, but once entered, you are

incapable of leaving. "You can't say, stop the ride, I want to get off."

He said there is a range of feelings caregivers experience during the odyssey,

from personal inadequacy to satisfaction and pleasure.

However, he said, when caregivers can't manage alone and additional people,

such as professional caregivers, are needed, there is a new set of concerns

and stresses.

Stages Of Caregiving

The caregiving process can be broken down into identifiable stages, Dr Ilardo

said. These stages are a function of the way the person conceives of the

process and reflects their perspective.

"There are certain sets of questions pertaining to each stage," Dr Ilardo

said.

In the beginning stage, when caregiving begins, terms need to be worked out

and boundaries set. There are emotional reactions and stresses on the

caregiver and the person receiving the care.

The person receiving the care may be concerned about how much help they can

ask for and what they have a right to ask for. New roles emerge. There are

variables on how to carry out the task, he said.

Another phase includes events that occur when additional helpers need to be

called in. The caregiver must deal with agencies, insurance companies,

paperwork, and other concerns.

"You are contacting strangers, inviting other people into your home and life,"

Dr Ilardo said. The family can have mixed feelings. There is reluctance to

release control. While a caregiver may feel relief that their loved one is in

the hands of someone who knows what they're doing, there may also be anger or

disapproval, he added.

Family caregivers should not "get into a power struggle" with the

professionals, he said. They should think of the professionals as members of

their team who provide special services in the caregiving journey or process.

During this stage, the care recipient may worry and feel guilty about being a

burden on his or her children, Dr Ilardo said.

Another stage is when the care recipient must be hospitalized.

"Hospital personnel are not always aware of how they can help (the

caregiver)," Dr Ilardo said.

He said, in addition, family caregivers are often discounted and disregarded

by hospital personnel. "The caregivers, especially if they are not family,

just a friend or companion, have trouble getting information from the

hospital. It can be very frustrating," he said.

Because of changes in the care recipient's condition, changes in the

caregiver's responsibilities often fluctuate. "Caregivers are in constant

adaptation," Dr Ilardo said. "Their responsibilities expand and decrease."

He said caregivers may have to take steps to make the patient's home safer. He

cautioned it is a fine line between protecting them and letting them live as

they want. "You can't do more than the person is willing to accept," he said.

Dr Ilardo directs the Center for Adult Children of the Elderly in Brookfield.

A licensed psycholotherapist and director of Caregivers, LLC, he has worked

for almost 20 years in private practice with elderly patients and their

families. He has also designed university courses in family communication with

a focus on eldercare. He is the author of As Parents Age: A Psychological and

Practical Guide .

Though Dr Ilardo no longer sees private patients, he is available for

workshops and consulting to help institutions and professional personnel

involved in care of the elderly.

Dr Ilardo's book addresses the needs of caregivers and care recipients, such

as what happens as a person ages, coming to terms with parents' aging, impact

on the family, what to do if the aging parent has a mental problem, helping a

parent stay at home for as long as possible, deciding when a parent must leave

home, making end-of-life decisions, and when a parent is gone.

The book is available at local book stores, on line at Amazon.com, or through

VanderWyk & Burnham, PO Box 2789, Acton, MA 01720-6789. The cost is $19.95

plus $2.50 for shipping.