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A Continuing Series |
Charlie D's Story
by
Charles Antoni, LCSW, RN
"Yeah yesterday I was a gentleman and today I’m a bum." Oh Really why is that? "Well ya see, yesterday (actually three years ago) I had my own house, a Cadillac, and a hundred thousand in the bank. Today, I’m busted and they are talkin bout throwin me and the ol’ lady out of here". What had happened to change Charlie from prince to pauper? Approximately three years before our conversation Charlie had been caring for his wife (she had dementia related to alcoholism) in their home. He was capable of managing her and the house. On the way to the grocery store one day he was rear ended and sustained a back injury. His care giver days were over and they were forced to look for some sort of accommodations. They settled on an affordable Assisted Living Facility. The price was 1500.00 dollars a piece per month (room and board only and no incidentals). I am sure you can do the math; three thousand a month x 3 years = 96,000.00 and change.
When I am no longer able to safely care for myself in my own home who will care for me? Where will the care be given? How will it be paid for? Isn’t it time we talk about it?
The issue of care for the frail elderly and disabled of our communities, state and nation is a complex one that often requires a delicate balance of resources and services. It is the next looming crisis in health care and as individuals, communities, states and a nation we are ignorant of the issues and unprepared for the daunting task that is approaching at warp speed. Ira Byok wrote in the fall of 2001 "Caregiving is an issue that 78 million Baby Boomers cannot afford to ignore. A tidal wave of frail and elderly will swell the ranks of American nursing homes from 1.6 million people today to 5.3 million in 2030. Who’s going to care for us? The shortage of nurses and nurses aids is already dire in long-term care."
Here are some thoughts to contemplate from Family Caregiver Alliance Fact Sheet: Work and Eldercare presented in 2002.
The 21st century will be marked by a dramatic increase in the size of the older population as the baby boom generation ages. An increase in older adults will mark a corresponding increase in dimensioning illnesses such as Alzheimer’s disease, Parkinson’s disease and stroke. These disorders affect not only the individual, but can also be devastating to the family. Already, millions of working adults are juggling the competing demands of caring for a chronically ill or disabled parent, raising a family and managing a career.
If you are a caregiver, you are not alone. An estimated one out of four US, households is involved in caregiving for a loved one aged 50 or older. As many as 12.0 million Americans of all ages need assistance from others to carry out everyday activities. While there is no reliable estimate of the number of family caregivers, at least 7 million Americans are caring for a parent at any given time. Between one-third to one-half of all caregivers are also employed outside the home.
Working caregivers sacrifice leisure time, and often suffer stress-related illnesses. Negative effects on working caregivers include time lost from work, lower productivity, quitting a job to give care, lost career opportunities and lower future earnings. Eventually, some 12 percent quit their jobs to provide care full-time. Work disruptions result in productivity losses of up to one billion dollars in California each year.
There are many myths and significant denial in our society when it comes to how we will live the latter days of our lives. The first is that we will close our eyes after a long day of canoeing with our sweeties and slip away in sleep. A study done by George Washington University in January 2001 states "Americans can typically now expect to live well into their 8th decade. Median life expectancy has reached 73 years of age for men. One largely unanticipated result of the advent of larger and larger numbers living into old age has been the emergence of long-term chronic diseases as the major pathway to death. In an examination of 1993 Medicare claims data. Hogan found that over 80% of all decedents had one of five kinds of illnesses in the year before death: congestive heart failure, chronic obstructive pulmonary disease, cancer, stroke, or dementia. These are illnesses that occasion a prolonged course of increasing disability and illness prior to death".
Again, the question comes who will take care of me when I can no longer safely care for myself?
Where will this care take place? How will I pay for it? The most frequent responses I get when I ask these question is "won’t my Medicare pay? My supplement pays for nursing home. I will go stay with the kids or my kids will come and stay with me." By the way, often these statements are made with out consultation with the parties involved. In our past some ethnic and cultural groups came together to "care for their own". This is now happening less often with our more mobile society. Families do not tend to stay in the family homestead or within walking distance of each other as they once did. Now we have relatives spread to the four corners of this country and abroad. There was also a presumption that "I cared for my mother/father and my daughter or daughter-in-law will care for us".
I would like to address some of these responses. The first is that under most circumstances Medicare does not cover room and board. They will pay for a nursing home stay only when there is a "skilled need". This usually means rehabilitation where home care is not an option. Another option involves recovery from surgery e.g. placement of a feeding tube where recovery and teaching or some other situations where skilled nursing care for a specific need is required and can not be provided in the home setting. It does not pay for strictly room and board because of the absence of a caregiver or the presence of a frail caregiver. This type of need is called "custodial care".
As to the subject of "supplements". It has been my experience that the supplemental providers follow the Medicare guidelines as to the need for skilled care. They do not take effect until the individual has used the Medicare maximum of 99 days. It is important to remember that unless the policy states specifically that it pays for custodial care it will not pay room and board or to have caregivers come into your home where no skilled need can be identified.
The majority of nursing home beds in the state of Florida are paid for by Medicaid (Institutional Care Program). This is a loose-loose situation. The individual looses because Medicaid pays only part the actual cost of care. To compensate for this loss the facility keeps its care staff to the state mandated minimum. This often results in sub standard care and can lead to abuse. If there is an estate Medicaid can come back on the estate to recoup additional funds once the surviving spouse has died. If there is no surviving spouse Medicaid can put a lien on the estate at the time of death.
The nursing home looses because they make themselves liable to litigation and compensation. These suits and settlements have driven the cost of liability insurance up to a point were many claim they will not be able to do business in Florida. The opposition states that the nursing homes are profiteering and the issues related to liability claims and insurance are a smoke screen. If you have ever spent anytime at all, even in a top of the line facility, you will leave questioning whether or not a nursing home would be comforting to you as you approach your "golden years". It is important to keep in mind that on average nursing home care costs between sixty to seventy thousand dollars a year (room and board). This cost does not include the incidentals (medications, clothing, eye glasses, hearing aids, laundry, and personal care items).
Alternatives to nursing home care exist. Assisted Living Facilities and Adult Foster care are just two. They currently run between 2500.00 to 3000.00 a month. If you are shopping for one of these facilities for yourself or someone you love; it is extremely important to determine whether or not they will care for you or your loved one through the end of life. If they say "absolutely" inquire as to what criteria will the individual or you need to meet. Will they require the individual to maintain a certain level of self care and if the individual is unable to meet that standard will you be required to hire additional staff (for an additional cost). Will the addition of hospice care be sufficient? Will you be required to relocate to a facility capable of a higher level of care?
Another frequent assumption that I run across is the notion that "I’ll find someone living on social security and offer them the opportunity to move in with me. I will give them room and board in exchange for their caring for me". How this translates is I will provide room and board and you will care for me 24/7 without knowing how long I will live so that you have no way of anticipating your next job or were you will be living after I die. I have not been witness to anyone finding an individual willing to accept this "bargain".
Are you beginning to get the picture? Is it any wonder that the burden of caregiving and not the unmanageability of pain is the leading cause for the hastening of death among chronically ill people. It has become an all to frequent scenario were a caregiver enters a facility or institution murders their loved one and takes their own life. We need to do better for our citizens and ourselves.
I believe we need to get creative in our thinking. There is no one solution to this complex problem. We can not come up with a one size fits all proposition. When I sit with individuals or family and support systems trying to make these decisions I tell them that no institution regardless of cost will care for an individual the way they can be cared for at home by those that love them. However, realistically not everyone can have care at home as a choice. Therefore, skilled nursing facilities have a place. If they are to remain viable they must be reimbursed and regulated adequately.
Assisted Living Facilities have an important role in providing care for the disabled and frail elderly. However, they were not designed to provide care for those with advanced illness that leaves the individual in need of significant supervision and assistance. In some cases the addition of hospice care is sufficient. In many cases the visiting nature of hospice services leaves a greater void in care than is safe or desirable.
Adult Foster Care offers a good alternative to institutional care. Those with which I am familiar limit there residents from one to five. They are private homes. Individuals are allowed to bring personal items and in some their pets. Certainly one to five in your home is more manageable than 7 to 10 in a facility. The Medicaid Waiver program that supplements an individuals own resources is chronically under funded. This in the face of he fact that it would be half the cost to pay the full bill approximately 3000.00 dollars a month and far less costly to supplement the persons own resources.
Ultimately, being cared for at home in the company of family and familiar surrounding it the best of all options. The studies have shown that 80% of citizens wish to die at home. However, fewer than half actually get their wish fulfilled. For those who do get this opportunity the strain on the designated caregiver, family and support system can be significant to overwhelming. There is great need for respite’ care, home maker services, and trained volunteers that can provide the needed support that allow for this best case scenario.
Again, care for the elderly often is the victim of budgetary constraints. Homemaker and respite’ programs are chronically under funded and this makes them unreliable options in making a plan of care. The same can be said for caregiver stipends that might allow a family member to be the designated caregiver. The family leave act is great if you don’t need the income of the family member taking leave.
Volunteer activity can be fragmented and the competition among providers for a limited pool of volunteers can strain peoples limits and availability. Likewise, the special needs of those with life limiting illness and at end of life require special training of the volunteer force.
There are also some creative financial relief that is little known. Viatical settlement is one. A viatical settlement occurs when someone with a terminal illness sells or transfers ownership rights of a life insurance policy to a person or company and in return receives a percentage of the face value now/ It allows the terminally ill to receive cash now for their needs today. It provides policy holders with the resources to make the most of the time they have left. Further information may be obtained at http://www.partnersinc.com.
Another alternative might be a reverse mortgage. A reverse mortgage is a special type of home loan that lets a homeowner convert the equity in his home into cash. The equity built up over years of home mortgage payments can be paid to the homeowner in a lump sum, in a stream of payments, or as a supplement to Social Security or other retirement funds. But unlike a traditional home equity loan or second mortgage, no repayment is required until the borrowers no longer use the home as their principal residence. Additional information is available at http://www.seniorjobbank.org.
All this may sound bleak. I hope so. It is my hope that in reading this and similar articles we will wake up and begin to assess our own needs and resources and those of the one’s we love. It is my goal to raise these issues so that when legislation comes before our state and national congress’s we will see our direct connection to these issues and make our voices heard. I am hopeful that next month when I present some opportunities for activism you will respond. These complex issues require action at the grassroots level if we are ever to see the needed shifts and changes that will allow us to life and die with dignity.
Copyright 2003 Charles Antoni, all rights reserved
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