HOW I DEALT WITH BEING A CAREGIVER

By Anne C. Ferrugiaro

Like so many caregivers, I had no choice but to retire

from the business world to look after my elderly mother on a full-time basis.

I moved to Toms River in May of 1986 and in September I called the Ocean County Office on Aging and was referred to the Visiting Homemaker Service of Ocean County. They provided limited respite for caregivers consisting of three hours of sitting in each week which allowed me to get out of the house for doctors' appointments, food shopping, going to the library, etc. Their services are based on income eligibility. In December of 1986, my mother bagan attending a private medical day care center twice a week since she was not eligible for médicaid.

From an article in a local newspaper, I learned of a support group sponsored by the Ocean County Board of Social Services called "The Alzheimer's Related Dementias Support Group"

which meets once a month.

Hore, at last, was a means for those of us in the same situation to share out feelings and experiences dealing with the continual loss associated with dementia.

In the Spring of 1988, the New Jersey Respite Care program became available to help families care for ailing, elderly persons at home. The burden of providing care to an elderly dependent person can be devastating when the caregiver is the daly one who is on twenty-four-hour duty.

As the disease progresses, the patient becomes more difficult to handle without help; most of the patients who attend day care facilities benefit from the group contact whether they participate in the recreational activities or just sit among the others.

The N.J.R.C. program provides respite from the daily grind of caregiving. Services such as homemaker/home health aids, companions, adult day care, and a two-week stay for the patient in a nursing home, are included. The two-week nursing home stay is a life-saver for the caregiver. Privacy, uninterrupted sleep, and freedom of activity help the caregiver to recharge the batteries.

Senator BRADLEY. Thank you very much, Ms. Ferrugiaro.

All of you have, I think, very moving stories about how the existence of a Respite Care Program has given you each some breathing room. Let me explore with each of you some of the other aspects. Ms. Wagenblast, let me ask you-you said you have several children. What has it meant to the children to be able to have respite care for your mother?

Ms. WAGENBLAST. Well, it has meant a great deal to them. We were each asked to write a little testimony as to why we supported the Statewide Respite Program. As I was writing mine on the typewriter, all three of my children were writing up their own little notes about why they liked it, and I included that in the report. I would say that in all three cases the feeling was that this gave us the chance to do things together as a family. That has always been something that we've done. We support each other in all of our activities. It has been difficult these last couple of years when I-or my husband, but usually I have to stay home-it means a lot to them to have us both there. I think that my son wrote that I am also a much nicer mommy when I have a break from taking care of granny, so I think they would all agree to that, too.

Senator BRADLEY. So essentially, if you have no relief whatsoever in your family circumstance, your children end up getting a little short-changed?

Ms. WAGENBLAST. Oh, that's for sure. I haven't cut back on their activities, really, but I don't know how long we can continue at the rate we're going now, or how long we would be able to continue if we didn't have this break time to look forward to. We take great joy in planning every minute of the 6 hours that the visiting homemaker is there.

Senator BRADLEY. Ms. Bodrucki, how long have you been caring for your daughter in terms of this kind of intense care?

Ms. BODRUCKI. Eight years.

Senator BRADLEY. Eight years?

Ms. BODRUCKI. Yes.

Senator BRADLEY. So it has been an 8-year unrelenting burden? Ms. BODRUCKI. Yes, because with Multiple Sclerosis it usually just keeps getting worse. So as each year progresses, her condition deteriorates.

Senator BRADLEY. So her needs increase with every year?

Ms. BODRUCKI. Absolutely. The worst has been the last 3 years. Senator BRADLEY. Just in terms of the amount of time that you've had to spend with her?

Ms. BODRUCKI. Yes, the amount of time that we had to spend with her, and the extra work. There are times when she can help herself a little bit, but with Multiple Sclerosis it is a disease that wavers from hour to hour. She cannot be left alone at any time. Senator BRADLEY. And that is a similar story to Alzheimer's? Ms. BODRUCKI. Well, this girl has no problems mentally. These are physical.

Senator BRADLEY. But she requires constant care?

Ms. BODRUCKI. Right. She can't answer the telephone because her hands shake too much. Sometimes she cannot feed herself. Sometimes she can, but you never know for sure what it's going to be like.

Senator BRADLEY. And Ms. Ferrugiaro, how about you? How long have you been taking care of your mother?

Ms. FERRUGIARO. Actually, I would say 10 years. She started quite a while ago, but it was very mild at the time. She didn't live with me all the time. She came up to live with me for about 5 years, and then I had to come down here. I had to leave my job. I was a very active person in my job because I was a manager and an officer in a bank. I was used to the activity around me, and all of a sudden to come down to a place that was alien to me, I had to sit in a house with four walls and one person. I had some help from the Pilot Project.

Senator BRADLEY. Mr. Anderson, you are new to the Program, but you clearly felt the pressure building in terms of the need for constant care for someone who has Lou Gehrig's disease, like your wife?

Mr. ANDERSON. Yes. At times I find myself on edge. I have to bite my tongue, discipline myself in such a way that I do not make my wife anxious. It is good to get a little time away from the patient so that you can go off and do things that are normal. I know I have to take my car to inspection, and the only way-

Senator BRADLEY. That might take longer than you expect, too. [Laughter.]

Mr. ANDERSON. That is usually true.

But with the rest from the program, it will give me the opportunity to take the car to inspection, which I would probably have to ignore without it.

Senator BRADLEY. Well, you know, in the New Jersey Respite Care Pilot Project the thing that is done by the county agency that is in charge of it is that they look at your situation and they determine, among the things that are available to you in terms of adult day care, home health aides, in some rare cases emergency relief through a nursing home, and companions—and each of you essentially talked to the Ocean County agency, and in the conversations you jointly agreed what would be best for your circumstances? Is that how it worked?

[Affirmative responses.]

Senator BRADLEY. Well, let me thank all four of you for your testimony and your stories. I think that you bring to light the need that we talk about. You know, when you hear the word "respite," nobody really understands respite. I'm discovering. What we may have to do is redefine it and say that it's a kind of "relief" program from constant caregiving so that your family, in one case, can have an opportunity for a more complete experience, and in the other case just so that you naturally want to give to someone that you love.

Let me thank all four of you very much.

Our next panel consists of the providers of respite care services. We have heard from the recipients of respite services, and now I would like to call to the witness table Mary Fran McFadden, who is the Administrative Supervisor of Social Work, Ocean County Board of Social Services; Mary Jane Kegelman, Program Director, Independence Place of Whiting; and Barbara Vandenberge, who is the Executive Assistant to the Director, Visiting Homemaker Service of Ocean County.

Let me welcome all three of you to the committee. If you could limit your statements to about 5 or 7 minutes, and then we'll do some questions from the perspective of those who are actually providing the care.

So, Mary Fran McFadden, welcome.

STATEMENT OF MARY FRAN MCFADDEN, ADMINISTRATIVE SUPERVISOR OF SOCIAL WORK, OCEAN COUNTY BOARD OF SOCIAL SERVICES

Ms. MCFADDEN. Thank you, Senator Bradley. It is a pleasure to be here this morning to speak about this program, and it is also a pleasure to hear so many nice things said about it by the people to whom we are providing the care.

Since the program started in Ocean County in 1988 we have been able to provide services to over 300 caregivers and their families in Ocean County. Those services have ranged from short-term nursing and boarding home stays to day care and in-home homemaker services. Recipients have been young and old, male and female, but they all have one characteristic in common: they are all the primary caregivers for an elderly or disabled person, and they all needed relief from that caregiving.

Respite is not a new idea. It is just a new name for something that has gone on for a long time. Traditionally, respite services have been provided by other family members, neighbors, and friends, but in Ocean County a phenomena occurred in the 1960's, the growth of senior retirement communities. It quickly became apparent that as the "young old" in these communities aged, services would have to be developed to take the place of the support that had been left behind in communities such as North Jersey, Connecticut, and New York, areas from which people were moving to move in to these retirement developments.

Public and private agencies began to identify service gaps as the over-60 population grew to almost 30 percent of the county population. With support from county government and a strong sense that people should live in their own homes as long as possible, funds were provided for some of the most basic human needs. Meals-on-Wheels and nutrition sites were provided for food and socialization. Transportation services for medical needs were developed in the county, and homemaker services were funded to allow people to live with dignity and comfort in their own homes.

Although rarely identified as such, these home services were often part of a plan to provide care for the caregivers, to help them cope with the strain and the isolation of providing health care for an elderly or disabled person.

All too often, though, need exceeds resources, and hard decisions have to be made by agencies about who receives service. On a continuum of need, relief for a caregiver could not always be the first priority. However, the Statewide Respite Care Program ensures that caregiver relief can be viewed as the most pressing need and priority for service.

The financial eligibility guidelines of the program allow a large number of people who are not eligible for other services to receive services under this program, thereby recognizing the expense of

this kind of service and the importance of supporting the extensive commitment that families make to caregiving, a value important in our social culture. Private purchase of these services could rapidly deplete resources which are needed for other areas of a person's life, such as house repairs or noncovered medical services.

In Ocean County, as you've heard, the application process is handled by a social worker. In addition to the respite intake process she also provides information and referral for other services for which the family might be eligible. These include-I'm going to list a lot of services, and I'm sure I've left out a few-but these include food stamps, home energy assistance, senior housing security and transportation, Alzheimer's Disease and related dementias support groups, Community Care Program for the Elderly and Disabled, Home Care Expansion Program, Meals-On-Wheels, nutrition sites, outreach programs, adult protective services, New Jersey Care, Transportation Assistance Program, mental health services, and legal services. These programs, as well as hospitals and home care providers, also operate as referral sources for the Statewide Respite Care Program, thus assuring that the largest number of people possible receive services for which they are eligible.

Once an application is completed and approved, an individual service plan is established for the caregiver and care recipient. The needs of each are assessed and services established to meet as many of those needs as possible. The services may be short-term, 2 weeks inpatient in a nursing home, or long-term, 1 day per week of adult day care for a year, up to $2,400 per year/per family cap.

Depending on the financial assessment, a copayment may be required, but individual circumstances are taken into account when the copayment is established and when circumstances change.

The primary focus of the program is to provide relief to caregivers so that a major objective to reduce inappropriate institutionalization is accomplished. Although most caregivers do not want to place family members into nursing homes, the exhaustion of caregiving and the increasing needs of the dependent family members sometimes seem to leave no other choice. By providing even limited services under the Respite Care Program, caregivers can often "catch their breath," regroup, and develop a plan of care that will allow them to keep the family member at home.

Respite services can also help the caregiver and recipient to more readily accept nursing home placement when it is in fact necessary and appropriate. Respite services can be utilized during the preplacement period, and the social worker can provide the necessary counseling during this difficult transition.

With the graying of America and the socially appropriate preference to have disabled people at home, an array of community-based services directed to support a family's right and responsibility to care for its members will become a social necessity. The New Jersey Care Respite Pilot Project is an excellent resource to address a dramatic social need in a manner of sensible public policy and social utility.

Thank you.

Senator BRADLEY. Thank you very much, Ms. McFadden.

Mary Jane Kegelman, who, by the way, is one who runs an adult day care center.