by Allan and Harold Rubin
In Memoriam: Nina Rubin May 20, 1906-October 10,1997
Our mother's feeling about nursing homes could be summarized in the following comment: "I'd rather be dead than be in a nursing home." My brother and I also had felt we would never put our mother in a nursing home. This was based more on feeling than fact. Neither of us had had any contact with a nursing home. Our information was based on stereotyping. The following comments will reflect our turn about on this issue. It may prove helpful to others in making the choice as to what type of long term care should be undertaken for friends and loved ones.
Our mother has always been a vibrant, active women, employed at Macy's as a salesperson in the Better Dress department until she was in her early 80's. She then retired because of hearing problems. Our father had died in 1956 at the age of 52. She lived alone in a one bedroom apartment in upper Manhattan, totally independent. We would visit her on Sunday mornings for brunch.
She became ill in January 1994 with double pneumonia. We found her in her apartment completely exhausted, weighing only 76 pounds. She was hospitalized at a local medical center for over two months, never able to feed herself or ambulate. The hospital's physical therapy staff evaluated her and felt she would not qualify for a rehabilitation facility. They did not feel she was a candidate for physical therapy. The choice we faced was either a nursing home or 24 hour care at home due to the fact that she was being fed parenterally. The latter seemed to us more humane and within the parameters of the wishes of our mother..
At the medical center where she was hospitalized, we were advised that under NYS law, a hospital cannot allow an elderly person who is unable to care for themselves to go home unless they have a suitable care plan. You must select and apply to 5 nursing homes of your choice. You must be prepared to go to the first home that accepts you. Since we lived in Manhattan, we felt for our convenience the home should be in Manhattan. We visited all five residences of our choice and contacted the Dept. of Aging of the City of NY for information on each home. We were particularly interested in violations cited against each home. We wanted to make sure it at least met the minimal standards established by statutory laws. We also contacted FRIA, an excellent source of information about nursing homes.
We selected one home that we especially liked. However, another home accepted her first. The hospital is anxious to discharge a patient because of current reimbursement system. We found a way to extend her hospital stay until the nursing home, which was our first choice, accepted her by insisting that all medical test be completed to pinpoint exactly our mother's physical condition.
Getting into a nursing home from a hospital is not a long process, despite the rumors to the contrary. Direct admission from your home is another story. We had expected a long wait for acceptance, but it happened in a matter of a few days. This step takes a lot of tip toeing and balancing of alternatives. You should be familiar with all rules and regulations and know the rights of Medicare- eligible patients in a hospital as well as nursing home setting. Obtaining a copy of medicare regulations from the government could prove helpful.
It is now four years latter, with our mother still in that home, continuing to make an excellent adjustment to the setting, despite it not being her "home". We would like to tell you our ideas of how to make an informed choice of a nursing home, if you ever face that dilemma.
To begin with, a nursing home is a depressing place to be in and visit. Even four years later, we are not free from being affected by what we see when we visit the home in which our mother now resides. We cannot overstate strongly enough how the commitment to visit is an essential aspect in her acceptance and, yes, even enjoyment of the nursing home for the resident.
Though we both have a long work day, we share the time to visit her, feeling that this is the necessary and essential factor (the active ingredient) in her accepting the home. Telephone contact is not enough since our mother is hard of hearing and using her best social skills says over the phone "I can't talk to you now" while hanging up the phone. This personal contact with a resident of the home is critical in their initial adjustment. It is also a period of frequent complaints and feelings of abandonment. Human contact with family can go a long way in overcoming this resistance to change. It gives them a chance to ventilate their negative feelings. It is a matter of listening to a litany of complaints, many very legitimate, and not engaging in a debate with them.
We strongly suggest that the nursing home should be accessible for you to get to when visiting. In our case, even though the home is not in what may be considered a desirable neighborhood, it is quite easy to visit. How easy it is to tire when the trip is so long. Thus, convenience needs to be a factor in your selection of a home. It takes a lot of physical and mental strength to maintain a visiting regimen.
Okay, you are ready to set up an appointment to visit a home after checking around with friends, relatives and neighbors about their views on long term care sites that they would recommend. What should you be looking for in that visit to the home?
In a nursing home, the resident will have the most contact with the nursing aides as opposed to doctor or nurse per se. In NYS, there are mandatory requirements and testing for these individuals to insure their qualifications. Thus you want to be sure that these people are Certified Nursing Aides. You need to ask about how many residents are assigned to the Certified Nursing Aides. In our situation, each Nurse's Aide has 7-8 residents, a demanding but doable care level. The staff works basically in 3 shifts with the late night-early morning shift being a lesser manned shift. There is always a certified registered nurse available for medical care and a medical doctor on the floor that our mother is assigned.
There are 2 registered or licensed nurses on my mother's floor of 32 residents. These nurses administer the medications and tend to the medical needs of the residents. The nurse's aides tend to their physical needs, covering everything from bathing to help feed them if necessary.
My mother's nursing home has one medical doctor for every two floors in the home. On weekends, this, however, is not true, but there is a doctor available. It is important to know the level of medical care available on site and also the affiliations with medical centers and whether there is any teaching hospital affiliation. The latter insures that residents will rotate through the nursing home and be available for providing medical care with expert back-up system. Moreover, it is helpful when the nursing home has its own laboratory and radiology department. This can avoid sending the resident to the Emergency room at the local hospital. They should also be set up for providing intravenous therapy.
When you visit the nursing home pay attention to how clean it is kept. Keep in mind that there is almost always a foul aroma in the Home that will vary from time to time and floor to floor.
Inspect the physical and occupational therapy areas in the home. Check whether they are full time employees or independent contractors. The latter are not always around for consultation. Find out the criteria for involvement in these programs. Ask to see a sample of a plan worked out for a resident. Distinguish between certified professionals and assistants who may provide service at a lower level of competence.
Look over the schedule of weekly communal events being held. A good program should have such basic events as weekly movies, concerts, religious services, bingo, educational classes and related social events. For those who are ambulatory, activities are a lifeline to enhanced quality of life in a nursing home.
While visiting, observe how long it takes for the elevator to come when you ring. Does the bank of elevators have at least one elevator car with an operator present? Does the home have "transporters" to bring the residents to events at a central location off the floor?
Observe if the meals are served in a communal dining hall on the floor or is each resident brought their meal in their room. Learn how tables are assigned in the communal dining room. Determine the procedure for change. See how long it takes a meal to be delivered to a bed ridden resident. Find out if they have a microwave oven to heat cold food. Ask if snacks and juices are available.
Asking questions of visitors to a Home is a good way to get a perspective of the Home from a party who has had experience with the operation of the facility. Remember this is just an opinion, but it may provide some insight that has relevance to your situation. Furthermore, observe the day room where the residents and their visitors may gather. Go into the visitors cafeteria (if there is one) and eat a meal. This may provide a good chance to meet individuals who have made the choice you are thinking about and they can answer some of your questions in a different way than staff of the Home.
We thought it was important that the place have a library which is a quite haven where a resident, if mobile and able to read, could spend time away from their room. See if they get the daily papers for residents to read. Such amenities may make for better adjustment to a nursing home.
If ambulatory, a resident should have safe places to go within the grounds of the residence. Are there safe places to go, such as an outdoor garden, where one can sense the different seasons and watch mother nature at work? It establishes vistas and adds an element of cheer to a resident's life. Are there other places near the home to which you can take the individual you are thinking of placing in the home? In our case, the Home was near Central Park and this has become a Saturday ritual with us; bringing our mother outdoors in her wheel chair to observe the year round activities in the park. This is a pleasant relief from only seeing the interior confines of the home.
Find out about the special events that residents are taken to through the auspices of organizations like Hospital Audiences or similar not-for profit associations that are geared to bring culture to residents of Homes. Also determine what cultural events are provided in the nursing home. We all need stimulation.
Speak to a Social Worker who is usually the case manager of the resident. The Social Worker coordinates all services and medical treatment for the resident. Determine the ratio of staff to residents. Are individual care plans done with each resident and how often are they reviewed and changed? What is the protocol for handling problems that may occur?
Another interesting individual to talk to in a Nursing Home is the religious leader. This person may provide a different slant on the Home. Is this person on staff of the Home, full or part time or just a volunteer?
Take time to observe the residence. Note how staff deals with residents. It is difficult to observe this in one or two visits, but try to observe the attitude of staff in dealing with the resident. We were amazed at the dedication that staff showed to various residents and this was "the active factor" that made us choose this residence.
A Certified Nursing Aide has a difficult job, a job that many of us are ready to relinquish to the Home because of its difficulty. How they operate under the daily pressure is a good reflection of the quality of the Home. Another clue could come from the amount of years staff has been on this job. We found in the Home we selected that a majority of staff had been on the job more then 10 years.
As time goes on and the social and economic climate of our nation is changing, there are indications that this is having a direct effect on Nursing Homes. Homes are trying to increase their revenue to meet expenses. Presently, there is a move toward sub-acute care, more than long term care. It may mean fewer beds for a group of individual's who need the kind of care that can come from a well run long term facility.
All of us must be vigilant in this area, and make sure our elected representatives know our feelings on this topic, even if at present we have no personal involvement in this issue. The same will be true for Medicare programs as well as regulatory procedures. Standards are maintained when there is an independent regulatory agency that doesn't have to be beholden to anyone but the resident of a nursing home. The State has assigned an independent ombudsman to each Nursing Home and will rotate through the Home to check to see if there are any problems that the resident may have in the Home.
Like everything in life changes are always occurring in a nursing home. In January 1999 the Home where my mother resided condensed 2 of the long term care floors into 2 smaller facilities. At the same time the Home will expand 2 of the smaller sub-acute units into the larger facility. It brings to mind the point of asking the Home's Administration about any pending changes that the Home is contemplating making regarding the facility.
Another source of information about a particular residence would be a consumer group associated with the residence. Consumer involvement in management of the residence represents forward thinking and provides an avenue for feedback to prospective resident families. An organization like Friends & Relatives of Institutionalized Adults in NYC (FRIA) is an excellent source of information about nursing homes.
Life in a nursing home is partly what you make it in interaction with what the home provides. An individuals personality is a major factor in their adjustment to the home.. A joiner will join in the activities. A loner will remain alone. In any case, the need is for a safe place, where there is sufficient staff that can see to the needs of individual residents. If staff is not enough, many Homes have registries of companions that could be hired to give individual attention to the need s of a resident. We do not use a Companion for our mother. Yet, we have seen many dedicated and devoted Companions assisting residents.
Ideally, a residence should have its own laboratories, hearing clinic, psychiatric liaison personnel, and X-ray facilities to do their own assessments and evaluations. At the same time, they need to be associated with a Medical Center/Hospital where more intensive treatment may be obtained and the resident not lose her/his place at the residence. Ideally, it should be a center that has a Geriatric Department where staff has special training in the care of the kind of populations that are in nursing homes.
The decision of nursing home placement is never easy, nor is there any way to determine if it was the right decision. It represents the best that can be done with the information available. Excessive guilt about placing a person in a Home does not help the situation. Sadness is a normal companion in this decision.
We can offer more personal reflections of our ideas on nursing homes to those who may have specific questions. Write us care of our e-mail address. We will try to answer them as objectively as we can, but we know we do not have an answer that fits all peoples needs. Talking about your decision is important to prevent the accompanying feelings from overwhelming us. Good luck in your decision. It is never an easy one, nor is there anyway of knowing it is correct. Decisions are based on getting the most facts possible, weighing them and making the decision. No one has a lock on perfect decisions.
By the way, our mother became mobile and no longer needs the PEG tube for feeding. She shows some age related memory decline, but still has her wits and can still sell you the idea that Macy's is the place to shop. She reads the paper daily, relates only minimally to her fellow residents, but remarks "what a wonderful place this is". The work we put into our selection paid off.
We would like to point out the government's Web site located at www.medicare.gov allows you to get a lot of pertinent data about the nursing homes throughout the nation. This includes such data as staffing per resident, deficiencies that show a comparison to other homes, number of residents per home, etc. It is a must see for anyone checking on a nursing home. That is why we have taken down the list of nursing homes in the New York area, since this data is available on that Web site.
Another good source of information about nursing homes and related problems are:Friends & Relatives of Institutionalized Aged Inc. (FRIA)
New York State Ombudsman
Information on nursing home complaints that have been resolved at a lower level than those reported to licensing can be obtained. The ombudsman tries to resolve the concerns at the lowest level, therefore these would not be shown on the Medicare nursing home surveys for example. http://www.ombudsman.state.ny.us
Martha Haase, State LTC Ombudsman, NY State Office for the Aging
Thanks to Linda Kelly for emailing this one in to us
Please e-mail us any other telephone numbers that you feel would be useful to others that you feel should be included in this list.
firstname.lastname@example.org or email@example.com
Other numbers that are good sources of information:
Alzheimer's Resource and Long Term Center Care--- 212-442-3086; Alzheimer's Ass'n-800-272-3900; American Ass'n of Homes & Services for the Aging-202-783-2242; American Ass'n of Retired People (AARP)-202-434-2277; American Cancer Society Response Hotline-800-227-2345;
American Council for the Blind-800-424-8666; American Diabetes Ass'n-800-342-3472; American Heart Ass'n-800-242-8721; American Lung Ass'n-800-586-4872; Arthritis Foundation Information Line-800-283-7800; Assisted Living Facilities Ass'n of America-703-691-8100; Eldercare Locator-1-800-677-1166; Equal Employment Opportunity Commission-800-669-4000; Foundation for Hospice and Home Care-202-5476586; Gray Panthers-800-280-5362; Grief Recovery Institute --- 800-445-4808; Health Care Fraud Hotline-800-447-8477; Help for Incontinent People-1-800-252-3337
Hospice Education Institute-800-242-4453; Lighthouse Center for Vision and Aging-800-334-5497; Medicare Hot Line-1-800-638-6833; National AIDS Hotline-800-342-2437; National Alliance for the Mentally Ill-800-950-6264; National Ass'n for Home Care-202-547-7424; National Cancer Institute-800-422-6237; National Center for Elder Abuse-202-332-2275; National Citizens Coalition for Home Care-202-332-2275
National Committee to Preserve Social Security & Medicare-202-822-9459; National Council of Senior Citizens-301-578-8800; National Council on Aging--- 800-424-9046; National Eye Care Project Helpline-800-222-3937; National Health Information Center-800-336-4797; National Hospice Organization-800-658-8898; National Institute on Aging---800-222-2225; National Institute of Mental Health-800-421-4211; National Institute of Neurological & Stroke Disorders-800-352-9424; National Insurance Consumer Help Line-800-942-4242; National Long Term Care Resource Center-612-624-5434; National Resource Center on Long Term Care-202-898-2578; Parkinson's Disease Foundation-1-800-457-6676; Senior Citizens Hot Line(Assisted Living)-1-800-342-9871; Social Security Admin.-1-800-772-1213; US Department of Veterans Affairs-800-827-1000
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