• Hospice is a palliative program, meaning that it provides comfort and relief from pain, rather than a cure for illness. The quality of the patient’s life is emphasized over the quantity, and every effort is made to ease the patient’s discomfort.
• In order to qualify for hospice, patients must have a life-expectancy of six months or less. They can be referred by a personal physician, a family member, or by request of the patient.
• Hospice services are provided by a team which consists of: a physician, a nurse, social workers, counselors, home health aides, clergy, therapists and volunteers. The patient and family have the freedom to choose the services they desire, and they can adapt the care plan as needed. Most hospices provide continuing support for family members for at least a year following the death of the patient.
• Hospice also provides medications as well as necessary equipment and supplies.
• Nursing care is not provided around the clock. However, the hospice team is available 24 hours a day for emergencies.
• Hospice aims to attend to all kinds of pain, including emotional and spiritual. In addition to the latest pain medications and devices for symptom relief, they may offer massage, music therapy, art therapy, Reiki, nutritional counseling, emotional and spiritual counseling, and more.
• Hospice care does not necessarily take place in the home. It may be provided in nursing homes, hospitals and assisted living facilities. Some programs have their own inpatient hospice programs.
• Hospice care is covered by Medicare in every state, by Medicaid in 47 states, and my most private insurance providers. This coverage extends to services to the patient’s family.
• There are many types of hospice programs; some for profit, and some non-profit. To find the best hospice program for your needs, inquire with your physician and others in your community. You may want to interview various programs to learn about their specific services and approach. There are many factors to consider when choosing a hospice program. For a detailed list, click on: http://www.hnmd.org/publications/How_to_Select_a_Hospice_Program.pdf and read through the Question Checklist, the last subject listed in the “options” column on the left of the page.
• Patients occasionally “graduate” from hospice. Some patients, provided with a comprehensive team approach to their case, begin to improve. If their health advances significantly enough, they may be taken off hospice. Of course, they can resume services at a later time if they are again deemed appropriate candidates.

   The final steps toward the end of life can be a challenge to navigate on many levels. With the support, care and guidance of a quality hospice program, the final transition can be made easier for all involved. We, the staff of Growing Options, are available to assist you and your family in deciding whether it’s the right time for hospice, and if so, which program will best suit your unique needs and how to get started

By Miranda Pacchiana

Aging in place is a concept that is getting a lot of attention these days. Simply put, it refers to the movement toward keeping seniors in their own homes for as long as comfortably possible. When polled, most people say that they want to continue to stay in their own homes as they age, as opposed to senior facilities or living with their children. This shouldn’t come as a surprise. Most of us would much rather remain in our familiar, comfortable home settings, surrounded by the people and things around which our life has been constructed, rather than in senior living environments, no matter how high the quality.

The older population is aging fast and in vast numbers. Consider this data presented by the Connecticut Commission on Aging: Connecticutis the 7^th oldest state in the nation for median age. We currently have over 600,000 residents over the age of 60, and one million baby boomers.  From 2006 to 2030, our state’s older adult population is expected to increase by 64%.

Now consider the costs. Home-care based services are often more than 50% less than institutional care. Because a large portion of nursing home care is paid for by Medicare and Medicaid, the state could save more than $9 billion by 2025 if it moves toward re-balancing the long-term care system. Obviously, it makes sense financially to keep residents in their homes as we age.

Next, let’s look at some of the many new developments that help make it safe and comfortable to age at home. Seniors residing in their homes need to have stimulation, access to family members and other people who can offer support and assistance, as well as user-friendly means of communication.

Adult day programs provide opportunities for socialization and stimulation throughout the day, or for a few hours. They offer activities that help keep minds and hands active. Meals are served as well. For individuals who are not able to live completely independently, they are safer in the caring hands of competent professionals for most of their waking hours. They may get much needed health services such as: occupational or physical therapy and doctor visits, just to name a few. Additionally, caregivers can enjoy much needed time alone while knowing that their loved one is being well-taken care of.

Additionally, night time sitters can be hired to make sure that seniors are safe at night if they need care, or have a tendency to wander during the evening hours. One innovative program at a nursing home inRiverdale,New York, even offers an overnight program for seniors who are unable to sleep at night due to dementia disorders. They receive supervision and participate in a variety of activities while their caregivers rest. It is hoped that this type of program will be adopted by other facilities as the need continues to grow.

There is a rapidly growing field of technology designed to assist the elderly and people with special needs in their own homes. Computers and cameras can connect the individual to family, friends and caregivers via internet connections. Specially designed computers allow even technology-phobic individuals to feel confident using large-screen, simplified interfaces to skype, send email, listen to music, play games and view photo albums with a few clicks of a mouse.

Monitors and alarms of all kinds keep loved ones informed of their family members’ activities; including when and how often they get out of bed, open kitchen cabinets or use the bathroom. Tailored updates can be emailed detailing the elderly or disabled person’s actions, and alerting loved ones to possible falls, wandering, illness or other dangers.

Finally, there is a whole host of home products for independent living that are specially designed to help people overcome physical limitations. These include; talking clocks watches, and appliances, UV lights for people who aren’t exposed to enough natural light, tools that aid with wearing or fastening zippers, buttons, shoes and socks, adapted plates and utensils, portable showers, walk-in tubs, toilet lifts and much more. Entire kitchens can be adapted with cabinets that pull down, for example, and do not reduce the value of the home. Stair lifts can transport a person without risk, even if there is a curve or a landing.

And if Mom or Dad wants to live alone but needs to be close by, modular additions now exist that can be added to an existing home in about a week. They are specially equipped to be used by elderly people or those with special needs. They can be easily removed as well, so they may make sense while a person rehabilitates from an illness or injury.

In summary, there is a vast and growing need to help people stay at home throughout their later years. Communities and markets have responded with solutions for almost every problem that arises. If you have questions about how to help your aging loved one remain independent, please do not hesitate to bring it to our attention at Growing Options. There is probably nothing we haven’t heard yet, and we are eager to help you find a solution.

By Miranda Pacchiana, MSW

             Wandering is one of the most common and potentially dangerous behaviors among patients with Alzheimer’s and other forms of dementia. For families and caregivers of seniors living with AD (Alzheimer’s/Dementia), it is imperative that we understand the many causes of wandering. Fortunately, armed with a variety of solutions and a thorough knowledge of possible dangers, we can take steps to reduce the chances that a patient or loved one will wander.

            Any person who suffers from AD is at risk for wandering; in fact, it is believed that approximately 60% of people in this category will wander. The wanderer is likely to travel one to three miles away if on foot, and will rarely respond to his or her own name when called, making the search for the person’s whereabouts considerably more difficult. Once they have wandered off, people with AD are at risk for falls, hypothermia, drowning and exploitation (such as being convinced to withdraw money from a bank account and hand it over to a stranger).The grim statistics state that if not located within 24 hours, the possibility of the person being found alive decreases to about 54%. That leaves 46% of wanderers having lost their lives or unaccounted for after a full day away, without the cognitive ability to take proper care of themselves.

            There are many reasons why wandering occurs. Often, the person will feel an urgent need to get somewhere; to fulfill an obligation from an earlier part of life such as going to work, picking up the kids or getting home for supper. Sometimes the desire to wander arises simply out of boredom or a desire to get out of the house. The wanderer’s curiosity may be peaked by something outside.

Because people with AD are not able to process their environment in the same way, they may become agitated or frightened by misinterpretations of the goings on around them. The bustling atmosphere of a shift change in a nursing home, for example, may bring about stress in a patient, and she reacts by trying to flee or get away. Also, wanderers frequently do not recognize where they are, even in a familiar environment. Because their memories of certain places were stored long ago, they are thrown off by slight changes like a new couch, or a different color of paint on a home in their neighborhood. Again, the reaction may be panic, fear and a desire to get back to someplace they know. Caregivers often hear their patients say they “want to go home” even when they are already home.

            The urgent desire to be somewhere else has another possible cause that is easily misunderstood: much of the time, the patient is simply uncomfortable. He or she may be in pain, feel hungry, tired or need to go to the bathroom. Because patients are not always able to understand the source of their discomfort, they look for a way out. Think about how it feels to have a full bladder when you’re stuck in traffic. Physical agitation – a “squirmy” feeling, is a natural result just as it is for our potential wanderers. The difference is that we have the cognitive capacity to understand what’s occurring. In fact, when patients expressing a desire to get somewhere are asked whether they are in pain or uncomfortable, they will respond in the affirmative most of the time.

            It is important to remember that patients with AD usually have poor impulse control. They are not wandering deliberately or out of defiance, although the results are undoubtedly frustrating and frightening for those looking after them.

            Let’s look at effective ways to prevent wandering from occurring:

• Install locks and alarms on access doors and windows. Placing the locks in unusual spots like the bottom of a door will make it more difficult for the patient to get past them. Inexpensive alarms can be purchased from hardware or home stores.
• Use motion detectors to let you know when the person is roaming around the house, especially at night.
• Inform area neighbors and businesses of the person’s condition.
• Keep copies of an updated photo (both full-length and close-up) to help police and local residents and business identify the wanderer.
• Keep track of what the person is wearing daily, also important to aid in identification.
• Make sure the person is wearing identification, and consider dressing in bright clothes for easier spotting.
• Place dark-colored mats in front of entryways. Depth perception problems, quite common in AD patients, cause the person to see this as a hole and they will avoid stepping on it.
• Keep car keys inaccessible
• Consider signing up for the Safe Return Program through the Alzheimer’s Association. For a sign-up fee of $55 including shipping (and an annual fee of $25), the AA creates a file with the patient’s photo, medical status and contact numbers. The patient receives an ID bracelet or pendant. This program coordinates with local law enforcement when a member goes missing, much like the Amber Alert system for missing children. Its reported results make it a very valuable resource: enrollees in the Safe Return Program are located within the first 24 hours 99% of the time. You can sign up online at www.alz.org or call 1-888-572-8566.
• SafetyNet by LoJack is a program that tracks wanderers with a bracelet or anklet using radio signals, and also enlists law enforcement to bring them home. The website is www.lojack.com.
• Finally, to prevent wandering at night:
• Keep the person awake for most of the day to facilitate better sleep at night.
• Use shades to block out the early morning sun.
• Keep the bedroom temperature comfortable.
• Avoid providing liquids and heavy or large meals in the evening before bed.

Wandering is a prevalent and potentially life-threatening problem, but we have more control over this danger to our loved ones and patients than we might realize. Simple tips and smart programs can go a long way in keeping them safe at home.

By Miranda Pacchiana, MSW

             Maria Shriver was on my TV speaking publicly about her father, Sargent Shriver, who had just died from Alzheimer’s disease. The clip was a year old and she was describing her father’s current state at the time: “At the age of 93, my dad still goes to mass every day. And believe it or not, he still remembers the Hail Mary. But he doesn’t remember me, Maria…” she said in the forthright style that we have come to expect from this accomplished member of the Kennedy clan. And then she added, “I’d be lying if I didn’t admit – that still makes me cry.”

            I knew from experience exactly what Maria was describing. My own father had died twelve years earlier after rapidly declining from early-onset Alzheimer’s. He was only sixty-nine. Seeing my father in the nursing home was always painful, but when he stopped recognizing me, visiting him became almost too painful to bear.

            There is something primal about the heartbreak that an adult child of an Alzheimer’s or dementia patient experiences when a parent no longer knows them. Even as adults, most of us seek our parents’ approval and attention to some extent. In their presence, we may even revert back to childish feelings and behaviors. (I am very neat and tidy in my own home, for example, but I occasionally find myself flinging my coat aside and leaving my shoes in the middle of the floor in my mother’s house). When a person with whom we formed one of our first and strongest love relationships no longer remembers our name, it deeply hurts. Hearing Maria’s words reminded me of this fact. Her courage to be forthright about her own feelings allowed me to admit to them myself in a new way, even after so many years had passed.

            Why did Maria (and I) use the word “admit” in reference to our emotional reaction? When a parent has been reduced to the state of a helpless dependent, grown children naturally take on aspects of the parental role. Often, we become the caretaker, at least to some extent. We understand that it’s terribly sad to see someone we love lose so much of their personality and with it, the connection we once had with them. But we may be unaware or unable to admit to ourselves the full extent of the impact on us when our mother or father can’t remember our face. We might feel like we should not let their lack of recognition “get to us.” After all, we’re grownups. We know intellectually that this is a symptom of the disease, not a personal slight. But that knowledge often fails to protect us from the natural reaction that follows. We may simply feel forgotten.

            Coping with a parent’s descent into dementia is a tragic situation on many levels. For grown children, it’s important to remember that we need to allow ourselves to mourn not just the gradual loss of our mom or dad, but also the loss of our role as that parent’s beloved child. It comforted me in my father’s last days to realize that no matter how addled his brain had become, somewhere inside his heart he still felt the love that he had held for me since the day I was born. I know this because a parent’s love for a child is strong enough to transcend anything, even dementia or death.

The reality regarding life at a nursing home (even a top-rated nursing home) is that there is no comparison in regard to the difference in setting and the amount of one-to-one attention one receives if one is able to remain at home with a private caregiver. It is true that there may be circumstances due to finances and amount of care needed which may make it necessary to consider nursing home placement, but with insight into what can happen in the future one would be best served by pre-planning for the future and looking and planning for the best case- worse case scenarios.

All nursing homes are not alike, and before a crisis occurs it would be best to select which nursing homes would benefit ones needs and then make sure that the individual has an application into their nursing homes of choice. This does not change the number one objective to remain at home successfully, if at all possible.

Although I feel home or an arrangement more “similar to home” is the best option, I do realize it is not always possible. It is for this reason that, although I facilitate services to allow individuals to remain at home, I always encourage nursing home applications to be submitted to the highest quality nursing homes in their vicinity or their adult children’s vicinity. I look at it as an insurance policy to the address what most of my clients feel is the worst case scenario which is nursing home placement.  My ultimate goal is to insure the least restrictive setting and zoning in on what is important to the client and the family as they age. I am extremely passionate about this because I have seen what can result from putting in even small changes to adapt to the increased needs. I have seen my clients and their families feel so overwhelmed and helpless and with brief counseling, encouragement, support and guidance in regard to what systems need to be in place to best serve their needs; life improves and they realize that life does not have to change that drastically. Slowly making changes early on can insure a greater period of time with little to no crisis.

So many of our communities have tremendous services to offer as one ages; all too often the elder individual and their families are unaware of the resources available to them. Education is invaluable and very much part of how I try to assist with aging in place. As a geriatric care manager with many years of experience behind me, I feel there is always hope, there are always possibilities, and it is beyond rewarding to see the changes that can be made to improve quality of life even when the most difficult challenges are thrown one’s way.

For information on services available to seniors in Fairfield County - please request a copy of the Senior GO TO Guide from us.  You can find my article about Geriatric Care Managers on page 20 of the Guide.

Although this is a very condensed version it does depict what I have been referring to. I was contacted two weeks ago in regard to an 87-year-old woman who suddenly has turned on her caregiver. She is reporting to all that know her that this caregiver left her unattended and did not help her after she fell, still disappears and leaves her unattended and afraid. The caregiver feels she is more delusional and really should be started on some medication for delusions. The caregiver has been working with this woman for months, and is quite hurt that her client could turn on her like this after all the wonderful care she has given.

I visited this woman’s home with the caregiver present and engaged this woman in a general conversation regarding the recent changes in her life. She explained that she had a caregiver daily for 5-8 hours. A few weeks ago after the caregiver left for the day the woman fell, and it was many hours before she was found. She hurt her arm which is now in a sling, and is much more dependent and feeling much more depressed than she has in the past.

Since her fall and return home from the hospital, she now has 24-hour care and is never left alone. She denies this and was very firm that she is left alone for periods of time.

As the conversation continued, what unfolded was a clearer explanation of what was happening in her mind and why she has been very accusatory and angry. When the caregiver goes to the bathroom or kitchen, runs out to get the mail or bring in groceries she forgets she left. Even when she was told just one minute prior to the caregiver’s brief absence, once the woman realizes she is alone she panics and screams. The experience of falling and sustaining an injury and not being able to get immediate help has caused her to become extremely anxious and afraid. She feels loss of control.

In this case, I reassured her that this sense of panic is not unusual and that we truly understand her fear. She is mildly impaired and is aware that she struggles with short term memory loss. Although her caregiver can say “I am going to the kitchen and I’ll be right back,” after a few seconds she realizes she is alone, panics and feels abandoned. We discussed methods to use so that she feels comfortable, safe and never alone.

The caregiver said that in retrospect it all makes sense, and if she realized what the triggers were she could have made the necessary adaptations. In the future she will not only tell her client where she is going, but she will offer to have her keep her company while she is cooking, doing laundry, etc.

There are other issues such as a changed sleeping pattern due to increased anxiety, and we will need to address this behaviorally; if it continues we will discuss with her physician. This is just one example, but again very often one can figure out the triggers and alleviate the precipitating events that lead to “difficult behaviors”.

It is important to note there are certainly instances that medications are needed, however medication is not the only solution or the best solution. Non-drug interventions should be used first unless the behavior cannot be controlled from the onset and the behavior is potentially dangerous to the individual or others.

Working with someone with dementia can certainly be a challenge and is often frustrating. It is important to understand “dementia.” because without an understanding one could think that the person with “dementia” is simply “acting out” or “annoying, irritating and stubborn” when in fact there are important factors behind the behavior. These behaviors must be looked at and understood so to facilitate better controlled behavior.

The ‘tools’ we were accustomed to using when dealing with our loved ones prior to the onset of dementia is quite different from the tools we need with this new set of circumstances – memory loss, forgetfulness, and confusion can all be symptoms of the dementia.  The behaviors vary as well as the difficulty handling the behaviors. The causes of these new behaviors such as agitation, wandering, and irritability can be attributed to different causes.

It is always very important when dealing with behaviors – particularly when the behaviors are new – to determine if the behavior is strictly due to “the dementia.” There may be something “medical or physical” going on such as a reaction to a new medication, a urinary tract infection, or an undiagnosed depression in addition to the dementia.

If the behavior is new and you cannot determine a contributing factor always call your doctor. You do not want to assume that it is simply due to the dementia if it is out of the ordinary. A simple urine test can reveal a urinary tract infection which can be easily treated with an antibiotic.

What I always recommend is to keep a journal and try to determine a pattern. Eventually, if there is a particular behavior such as intermittent agitation, restlessness, anger, or pacing happening, documenting the time these behaviors are exhibited and events that took place before the behaviors began or started to escalate can be very helpful for diagnosis. Here are some links to a few helpful documents which will help you keep track of the behaviors:

• This chart documents the date and time, what happened before the behavior, what behavior was exhibited and what happened as a result of the behavior: http://www.scribd.com/doc/13030287/Behavior-Chart-FormGrowing-Options

• This chart documents the same as the first, but also has a column to document the duration of the behavior and the intensity on a scale from 1 to 5:  http://www.scribd.com/doc/13030291/Behavior-Duration-and-Intensity-FormGrowing-Options
  

• Tip: Keep these charts in a binder to bring to the doctor.

How does Lifeline work?

People wear their personal help button on their neck or wrist which dials out their phone to the response center in Framingham, Mass. When the person pushes the button, a personal response associate takes the call; they are literally sitting in a cubicle waiting for the calls to come through. When the subscriber sends in a signal for help, on the computer is the profile of the client calling in front of them. This contains information from their address, information of the local response team, names of family members and neighbors, native language, even down to if the person has a dog that bites or where an extra key might be hidden.

How does the person wearing the alert button know what’s going on after they’ve called for help?

They will come over the communicator, which is typically in the bedroom. The person talks into the air, “I fell, I’m having chest pain,” and an associate determines what level of help is needed. They may ask “Call my daughter,” or “Call an ambulance.” The person will then call the local emergency responder, and they’ll be on their way.

Listen to a samples of real calls made here.

How do the responders know when help has arrived?

We have what is called a closed loop system; we check back in to make sure that help has arrived or we Once emergency help or responder checks in at the house they alert us and we know, absolutely, that help has gotten there. After we’ll also contact people like their case manager to say that that “‘Mary Jones’ had a fall on she’s on her way to St. Francis Hospital.” we’ll stay on the line if the person asks and keep checking back in.

How does Lifeline contribute to home health care?

It helps to keep people at home just a little bit longer. The average subscriber is an 82-year-old female who lives alone and needs help with one or two [Activities of Daily Living ] ADLs. Lifeline is a nice complement to home health aides or nursing staff that may be going in to help a patient. If someone lives by themselves, the family as well as the subscriber has peace of mind that if they need help they will be able to get it and they will be contacted.

How many people are using Lifeline?

There are 718, 672 subscribers as of today. It is available in all 50 states, including Alaska, Hawaii, and Puerto Rico.

How much does it cost?

After the activation fee there is a monthly fee for subscribers. It varies depending part of the country you’re in, but it is safe to say that it costs just a little more than a dollar a day.

When was this created?

Lifeline came out first in 1974. When they first came out they were about the size of a garage door opener, that [subscribers] would clip to their belt! It was invented by Dr. Andrew Dibner. He was shaving for work, and cut himself while getting ready. Then he stopped to ask himself, “If I did this and no one was home how would I get help?” And that’s when he got the idea.

Upon discharge a Visiting Nurse Service can and usually does provide brief services which are paid by Medicare. Unfortunately, these services are short lived and do not address the long term needs and services, therefore the senior is back in the emergency room within weeks, if not sooner. These seniors are known by the EMT’s and the Emergency room staff closest to their homes. It is quite common for these seniors to have multiple trips to the ER and the SNF before one would question …why ? and/or or say, “Well, this patient needs to remain in a SNF. ” Why…is simply answered, and NO, more often than not, it is not time for permanent placement. The reality is there are many long term residents living the remainder of their lives in a nursing home at a much greater expense, when they could be in the comfort of their own home, with a 24-hour caregiver providing ongoing one-to-one attention at a much lower, daily rate.

I would see this repeatedly and feel so frustrated that I could not do more to guarantee greater success at home. I knew with better safety nets in place and closer monitoring and medical attention at home, most ER trips could be eliminated as well as the subsequent return to the SNF.

The formula seemed simple but I could not do what was needed as a discharge planner in a SNF with a caseload of 100+ seniors.

I would say to myself, “These seniors need a Senior Manager to go to their home, assess the ongoing needs, make recommendations and set up services. Ongoing monitoring would insure that the recommendations were being followed, and as a trained Senior Manager it would be easy to see signs of change or concerns and make the necessary adaptations.”

As time went on I thought of this more and more, and went online to “Goggle” keywords. To my amazement I found out that there really were Senior Managers and they were called “Geriatric Care Managers.”

I felt it was time to take this seed of thought and actually pursue what I had thought about so often. I would build a private practice that would allow me to reach out to seniors and their families and give the gift of providing “Options” that families were probably not aware of…”Growing Options”. I pursued the necessary credentialing and became a Certified Care Manager (CCM).

Since that time I have slowly and successfully been privileged to work with many seniors and their families, and fulfill a vision I knew was possible to provide the bridge to success once leaving a SNF after subacute rehabilitation or discharge from an Emergency Room.