Senior Care and Hospice
Knowing the options will help you provide for those you love.
By Melissa Sprouse Browne
When a loved one needs some extra help in his senior years, there are many ways to solve those issues. The range of care needed can go from just a little assistance with the activities of daily living, including things such as dressing, bathing, transferring, medication reminders and light housekeeping to complete and total skilled care. There are things you need to know as your family member progresses along the continuum of care to insure the best possible outcome.
Getting help is advisable when the time comes. Let’s first talk about how to choose a home health or non-medical companion agency and the differences in medical and non-medical services available.
There are many situations when you will find it helpful to bring in a professional care provider. There are times when you can’t handle it all by yourself and even a short break can help you recharge. This type of break is usually called respite care. There are other situations where your parent needs care beyond your capabilities or comfort level that a professional can offer. Or, you may have work obligations and can’t be there all the time, yet your parent needs help on an ongoing basis. Not living close by is another great reason to call in help from an outside agency.
I remember wondering what to expect from a home health agency. The first thing to learn is the difference between medical and non-medical providers. A medical home health agency can administer medication, perform therapy (physical, speech and occupational), deliver nursing services and, in most cases, accept payment from Medicare and Medicaid should their agency be properly registered and licensed with those entities. Other components of medical home health include intermittent home health aides, social services, certain medical supplies and equipment. You may not need the full range of medical services and will want to also consider a non-medical home health provider. Usually, a medical service provider will not provide custodial care, which is the term used by insurance and Medicare/Medicaid for companionship or sitter services.
A non-medical home health company will offer an assortment of services, which may include any or all of the following: companionship/sitter services, medication reminders, light housekeeping, laundry, diet monitoring, meal preparation, transportation, hands-on assistance with activities of daily living, help with running errands, personal concierge service, pet care, lawn and yard maintenance, handicap modifications of the home, socialization activities, help with bill paying and grocery shopping and basic exercise. For a non-medical service, the line is drawn at medication administration. The medicine can be put within reach of the patient, but cannot be physically administered.
When you’re thinking of evaluating home care agencies, now that you know the difference in service levels, you must first determine if you need a medical or non-medical provider. Consider consulting with your parent’s doctor to make the proper determination. Once you’ve decided on a level of care, it’s time to start looking for agencies.
There are lots of ways to get names of qualified providers. First, you can get a list from your local hospital. Your doctor’s office should also be able to help you find providers, too. Certainly the internet will also be a great help in finding home health agencies in your area. Set up a comparison chart, which you can do simply on notebook paper, or by creating a customized Excel spreadsheet. Create a list of questions to ask, so you can compare apples to apples by asking the same questions each time. The chart I used included the following:
- Agency Name and Phone Number.
- Contact name at the agency.
- Duties/tasks they perform.
- Medical or Non-Medical care.
- Rate per hour.
- Is there a minimum number of hours required per visit?
- Is there a minimum number of hours required each week?
- Are they bonded and insured?
- Are there references you can call?
- How long has the company been in business?
- How are emergencies handled?
- Is staff available 24/7?
- How are patient rights protected?
- What input does the family have in the care plan?
- Who can be called for questions or complaints?
- For medical care, will the agency stay in contact with your parent’s doctor?
- What happens if someone doesn’t come when scheduled?
You may begin to see a duplication in the answers, which is to be expected with providers of these type of services. Many of the home health agencies are franchises, so you will see a standardized set of options from one city to the next for those franchisees. The benefit to using a franchised company is the pre-set level of service expected throughout their company is reasonable to expect in your city or town. The downside is their lack of flexibility; the freedom to customize a solution for your family may not exist. Many family owned, private home health agencies provide excellent care with the ability to give you extra choice and flexibility when necessary. And, a family owned company may have additional services not found in the traditional home health model.
Costs vary for home health services, particularly medical home health. Typical costs for a home health aide (non-medical care) average between $18 - $20 per hour, and less skilled aides providing companionship or sitter services average between $16 - $18 per hour.
You may be considering hiring a private individual to provide care for your parent. While you are certainly able to do so, be careful to not run afoul of the law. You will need to establish either an employer/employee relationship or set up the workers as independent contractors. You will need to confirm the person is eligible to work in the United States and report wages at the end of the year. Caregivers working for an agency will have been vetted through a criminal background check, verified for work eligibility, checked for tuberculosis and trained. A private individual won’t have any of these safeguards in place. The right home health aide is a wonderful addition to your caregiving routine. Don’t settle for anyone less than the best.
One of the biggest misconceptions is the belief that Medicare pays for long term and nursing care. Medicare pays for a very short timeframe for in-patient care in a nursing or rehabilitaton facility.
Medicare doesn’t pay for around-the-clock care, prescriptions, meals delivered to the home, any homemaker services or personal care provided by home health aides when this type of care is the only care needed.
When it’s clear home care isn’t feasible to continue, you’ll want to begin the process of evaluating the choices in care settings. The levels of care are usually categorized as independent living, assisted living and skilled nursing care. A continuum of care community will have all three levels and allow the resident to progress from one to the other as his abilities and circumstances change. Furthermore, you are expected to enter the continuum of care cycle at the independent living stage. Community care and group homes are another option for senior care in some locales.
Understanding the distinctions between care levels is vital to placing your parent in the right environment. Alzheimer’s/dementia care can be found in both assisted living and skilled nursing care settings. Assisted living doesn’t have a hard and fast definition, but the Assisted Living Federation of America defines assisted living as “a combination of housing, personalized support services and health care designed to meet the individual needs of persons who need help with the activities of daily living, but do not need the skilled medical care provided in a nursing home.”
Skilled nursing care is full medical care provided in a clinical setting by credentialed medical professionals. Skilled nursing facilities are also referred to as nursing homes and are residential care facilities where residents receive skilled nursing services twenty four hours a day. Residents are patients who cannot take care of their own personal and medical needs.
Another option to consider is a specialized center for senior health care that is not a residence, but allows day visits for care and companionship. These wellness centers can be useful as one-stop shops for many senior services, such as meals, transportation and health care.
When you’re ready to begin your search for the right residential care facility, there are many things to do to end up with the right choice. First, any facility you consider needs to have an unannounced walk through. Walk around by yourself and give a five senses inspection – how does it look, smell, sound and feel. If the first thing you notice is a strong urine smell, turn around and leave. This is no place for your parent.
Vary your visits between days, evenings and weekends. Weekend staff levels are usually lower, so it can give you a good idea of how low they allow their staffing levels to be and what effect it has on the residents.
Listen for residents crying out or buzzers going off for long periods of time without anyone attending to them, which is another bad sign. I remember waiting on my elderly client, Bob Fulton, to be released from a long term care facility where he had been briefly for rehabilitation after a hospital stay. He was getting dressed so we could leave, and for the thirty minutes we waited in the hallway on the staff to finish with his last evaluation, the lady in the room next door was yelling for someone to help her. She had to go to the bathroom and was desperate for assistance, yet multiple staff members walked right past her door, totally ignoring her. I asked a nurse to please help her, to which she replied, “Sure, in a minute.” Of course, a minute actually took another half hour. I wanted to help her myself, but my client was almost ready to go and I needed to take care of him, too. Certainly I would never want anyone I cared about to live in that place for more than a few days. The level of care was quite low.
You’ll want to go into the cafeteria or dining hall. The best time to do so is lunchtime or dinnertime. Go back on a planned visit with the staff and ask to have a meal so you can judge for yourself the quality of the food being served.
Ask what steps have been taken to prevent patients with dementia from wandering off or getting hurt. A properly stimulating environment for memory care is as important as security, so look for outdoor gardens and places for dementia residents to enjoy life without risk.
Having a parent with dementia means you need to ask additional questions about how certain behaviors are handled. For example, Daddy had a brief stay in the memory care unit of an assisted living shortly after my mother passed away. He was very confused and the staff’s answer to any challenging behavior was medication, medication, medication. Haldol, Vistaril and anything else they could think of to produce an almost vegetative state was their preferred tactic. What a disaster. We wouldn’t put up with it, and quickly moved him to a much better environment.
Each facility will have a calendar of activities. Look for activities with sufficient variety. If religious services are offered, look to see if your parent’s spiritual needs can be met. Is the pleasure of everyday life lost in the medical routine? Recreation options are vitally important to maintaining both emotional and physical well-being.
And last but not least, talk to the nursing supervisor to determine exactly what type of care your loved one would receive. Query her on arrangements in case of emergency, what happens when a higher level of care is needed, and how physical fitness is encouraged.
After you’ve done the walk-throughs, if your search is for skilled nursing care, go online to www.medicare.gov to see a comparison of nursing homes in your area.
How do you know if your parent is a candidate for hospice? One of the most prominent hospital systems in our area developed a checklist to help determine if hospice care is a viable alternative for care. If you have noticed the following symptoms, then your parent should be evaluated by his or her primary care physician:
- Decrease in appetite.
- Weight loss.
- Decreased interest in surroundings.
- Decreased interactions/withdrawal from others.
- Decreased level of activity.
- Progressive loss of function.
- Decreased endurance.
- Decreased participation in self care.
- Loss of continence.
- Progressively worse or difficult to control symptoms of a chronic disease (i.e. increased pain, difficulty breathing, swelling, etc.).
- Frequent hospital stays.
I remember the day my sister, Carolyn, and I went with Mama to her regularly scheduled doctor’s appointment. We helped her back into the examination area, where they first checked the oxygen level in her blood. (It was lower than normal.) We proceeded to the exam room and waited on the doctor.
After he finished examining her, he asked if we had considered using the services of a hospice organization. “WHAT?!” we thought. “ARE WE AT THAT POINT?” We had absolutely no idea whatsoever that Mama’s health had reached the point of imminent and permanent decline. Of course we knew she was ill, but the idea of her death had never been considered. After we took her home, my sister and I stood in the front yard, stunned. She asked me again, “Is this where we are?” I couldn’t answer, and more importantly, couldn’t believe it.
Looking back at that initial conversation, the doctor predicted that she might live six more months. He was exactly right.
You may be wondering what exactly is hospice. It’s care designed to be supportive of people in the final phase of a terminal illness and focuses on helping patients be comfortable and as free from pain as possible. The term pallative care is often used, and means providing specialized relief from the symptoms of a disease to improve quality of life. Pallative care does not seek a cure, but rather offers assistance in symptom management. Hospice programs are usually home-based, but services may be provided anywhere.
Hospice care helps people die with dignity. As a Medicare covered benefit, the doctor must certify the patient is likely to die within six months if the disease continues on its current course.
In the past, hospice was associated primarily with cancer patients. However, people with other types of life limiting illnesses are appropriate candidates for care, including those with dementia, stroke, heart disease, Parkinson Disease, COPD, kidney or liver failure, or any other serious condition.
Hospice becomes the controlling healthcare team, providing medical professionals, equipment, medication and supplies, counseling for the patient and family members and bereavement services for up to a year afterwards.
With hospice providers, they employ people just like other companies. So, there is a possibility of receiving less than stellar care. And while I believe that working in hospice care is a calling, and not just a job, everyone doesn’t always feel the same way. If you are unhappy with a caregiver or any aspect of service, you should make your feelings known to the hospice provider’s administrator. Fortunately, the majority of those working for a hospice are good people who care, which is want you want for your parent or loved one in the last days.