Alma dropped into the recliner chair and exhaled deeply. “I’ll just sit for a few minutes”, she told herself. A brief flicker of guilt crossed her mind as she looks at the stack of dishes in the sink and the pile of laundry waiting to be washed. As her eyelids closed, Alma heard Bob calling out from the bedroom. “Honey, I need help!” Instantly awake, Alma jumped up and headed in Bob’s direction. Entering the bedroom now cluttered with medical equipment and looking more like a hospital room, Alma gasped. Bob was sitting on the floor between the bed and commode chair. “Sorry babe,” he said sheepishly, “I tried to help myself this time and I guess I slipped.” Alma bit her tongue, wishing just once she could tell Bob how she felt about his helpfulness. Instead, she put on a smile and leaned over to help Bob off the floor. After settling Bob back into bed and cleaning up the mess, Alma made her nightly call to her daughter. “I just don’t know how much longer I can go on like this.” Her daughter listened for a while and then gently suggested that maybe it was time to look at other options for her Dad. Alma realized she might be right.
“Life begins at fifty” goes the old adage, but today’s fifty somethings face a more complex life. Many face early forced retirement, loss of jobs, chronic illness of their spouse, daily care of grandchildren and worries about securing a safe future for an adult handicapped child.
Making the right decision for you and your loved ones not only involves looking at finances but having a working understanding of all the options that are available to provide comfortable “golden years”.
According to the U.S. Department of Health and Human Services, one fourth of American families are full time caregivers for spouses, parents or adult children with chronic illness and/or handicaps. The numbers are significant: 26 million are caregivers to an adult family member, 5 million are caregivers for a person with dementia and 7 million are informal caregivers. Of this group, half are woman and half are over the age of fifty. According to the 2004 Department of Veterans Affairs Survey there are 514,000 veterans with dementia who require a formal caregiver.
Care giving is a fulltime job for most with 40 or more hours of their week spent on care giving duties. Even informal caregivers can spend as much as 20 hours a week involved in activities that are strictly caregiver related. All this time spent caring for another takes its toll. The Department of Health and Human Services survey of full time caregivers revealed that half of all caregivers describe their health as poor, often suffer from depression and are more likely to become physically ill. Despite all good intention, caregiver stress can lead to illness, injury and premature death. As a caregiver you need to recognize the signs of stress and when to seek help.
The National Alliance for Care giving has identified the following as potential signs of stress overload: reduced attention span and concentration, unusual memory lapses, impaired thinking, consistent irritability, physical aches and pains, irregular heartbeat, unusual or excessive perspiration, skin rashes, stomach problems, difficulty sleeping, withdrawal from regular activities and diminished interest in home and environment. Recognizing these signs early and seeking help can prevent serious damage to your own health.
Stress overload can be managed for a short period of time. The National Family Caregiver Support Program, provided through the Older Americans Act, provides information for caregivers; helps gain access to services, counseling, and respite care; and provides caregiver services on a limited basis to those who are eligible. Your local Area on Aging can also be an excellent source of information and resources and are usually listed in the Government section of the phone book.
National Eldercare Locator 1-800-677-1116 or www.eldercare.gov
Family Caregiver Alliance www.caregivers.org
National Family Caregivers Association www.nfcacares.org
Alzheimer’s Association www.alz.org
When the burden becomes too great or care giving is not an option, then you need to be aware of what options are available to make an informed decision. The choices that were once limited to nursing home care and home health care have expanded to include all types and combinations of care. The down side is that this has made the decision process more confusing for the average person. Continuing care, assisted living, supportive care, rest home, family care home, adult day care, residential care, home health care, respite care and nursing home care, intermediate care, skilled care, institutional care- what does all this mean? Which one meets you and your loved ones needs? Let’s start with the basics.
The first decision you need to make is how much physical care your loved one requires. Their ability to dress themselves, walk or propel a wheelchair, feed themselves, take their medications and their special medical needs will determine the level of care that is best suited for them. Each level of care has different criteria for services and a basic understanding of the criteria is the first step in making an informed decision. (see sidebar)
Once you have decided what level of care your loved one needs, you must also take into consideration what environment is going to suit both of you. Will you live with or near family, do you want to reside in a community or complex that can meet both of your needs or will you remain in your residence and your loved one be in a facility close by? Take into consideration your financial resources and long range needs, Medicare does not pay for any level of care other than nursing home care and only for a limited number of days for a specific medical diagnosis. Medicaid will pay for nursing home care and rest home care in some states. If you think you are eligible for Medicaid you need to start the application process as soon as you start looking for a facility as it can take up to 90 days to finalize the process. The VA does provide some assistance with financing and finding care. According to the VA FACT sheet of January 2005, the VA provides non-institutional care such as adult day care, home health, respite care, hospice and community residential care and nursing home care at VA centers, state homes and contract facilities in the community. Eligibility for VA services follows a protocol with priority to those veterans who are at least 70% service connected, then those that are at least 60% service connected with a permanent disability followed by those with a combined disability of 70% and non-service connected veterans who meet income/assess criteria for services. More information can be obtained by contacting your local VA center or if your loved one is already receiving medical care through the VA, you can contact the social worker/case manager assigned to their primary care team.
Finding the right place for you and your loved one can be a daunting task. Involving your family, a close friend or a professional such as a social worker or geriatric care manager can provide invaluable assistance in searching and selecting what location is right for you. Do your homework and utilize the resources in your community. Free guides for seniors listing housing options available in your geographic area can be found in most grocery stores and other businesses that are frequented by seniors.
Have a prepared list of questions when visiting a community or facility. Ask about their philosophy of care, the number and type of staff, meals, activities, special services, costs and fees, and issues that are important to you and your loved one. Talk with other residents and ask for a tour to get a feeling for the place and how others like it. Attend planned activities or ask to sit in for a meal to see if this is a place you will be comfortable. It is a huge adjustment moving from your own home into a community where you will be interacting with other people in communal settings on a daily basis. If your loved one is going to be in a nursing facility you need to feel comfortable with the staff who provide care.
If your loved one needs a nursing home, you can research a facility’s history and their performance on state surveys by accessing the reports from their yearly inspections at www.medcare.gov and going to “nursing home compare”. If you do not have web access, the reports are available at your public library and are required to be posted in the lobby of each nursing home for public viewing. Rest homes are also inspected yearly and those reports are also accessible. The survey report will tell you what deficiencies were found on the annual inspection and if they were serious enough to cause potential harm to the residents. There is no ideal facility but you want to chose one that has a good reputation and follows the rules.
No matter what the circumstances and what decision you choose to make, there is practical advice that all caregivers should consider. Ask others for help, you are not in this alone. Utilize family members, friends, support groups and respite care. You will be surprised how many people are willing to help but may have been afraid to ask. Take care of yourself. Eat healthy foods, plan rest periods, and try to get some type of regular exercise to keep in condition and prevent injury to you and look for those signs of stress. You cannot appropriately care for your loved one if you need care yourself. Get regular check ups from your health care provider and do not neglect your own health care needs. But most of all recognize when the time comes that your loved one needs more than you alone can provide and keep your promise to take care of them by arranging the safest and most appropriate level of care for both of you.