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Embracing Aging in Ourselves and Others

by Miranda Pacchiana, MSW

Fear of aging is increasingly common today, given the value we place on youth and our increasing preoccupation with looking young, no matter what our age. We know that as long as we’re alive we continue to age every day, but popular culture seems to discourage us from accepting this fact. And yet to deny it is to create unhappiness and dissatisfaction with our looks and ourselves.

Perhaps if we work toward letting go of our fear of getting older and replace it with an appreciation of our life experience and the wisdom it brings, we will begin to place more value on the oldest segment of our population. Looking at an elderly person can be upsetting if we project forward and imagine ourselves with an increased dependence on others for our needs. But if we view that same person as a source of experience and knowledge, getting old might not seem so daunting.

My maternal grandmother lived to be 105. In her early 100’s, she still took a daily walk and knew the name of almost every member of our large, extended family. While she was still alive, it dawned on me at some point that she had witnessed the entire industrial revolution and the rise of the automobile, as well as living through both world wars as an adult. I realized then that in addition to being our beloved family member, she was also a treasure trove of knowledge and experience for those of us who would listen to her stories. As her descendant and – I hoped – the beneficiary of her healthy genes, I thought about how I would like to be treated in my older years. My conclusion came quickly: I wanted to be respected. And the logical next step was that I needed to begin by respecting my grandmother and all of my elders, who by virtue of their years on this earth have a deep knowledge of life and can be a valuable source of wisdom for the rest of us.

Embracing aging will most likely be an evolving process, one that requires continual recalibrating and reminders of the tradeoff. I imagine it will go something like: “Is that really what my eyelids look like now? Sigh. I’m glad that my value lies in more important aspects than my looks.” Aching joints and stronger eyeglass prescriptions do not diminish us. They are simply the new challenges we tackle, replacing the restlessness and insecurity of our younger days.

Many, if not most of us will find that we need some extra support in order to thrive and stay safe and cared for in our older years. Assisted living facilities can be a smart solution to the increased challenges of daily tasks and the risks of living alone. Of course, making the transition to a more supportive type of assisted living can be difficult to accept, especially when one sees other residents who rely on walkers or wheelchairs, or have trouble with confusion and memory loss. It’s seems only natural that for people who aren’t currently dealing with mental or physical deficits, this might arouse a fear of what their future may hold.

Whether or not we face these particular challenges, it is important that we as individuals and as a society come to understand that physical and mental challenges do not define any of us. Each of us has a unique story, and our experiences and gifts deserve to be prized and cherished. If we start by seeing the value in others, then we can begin to see it in ourselves as well, no matter what our age.

Preventing Conflict within the Family

By Miranda Pacchiana, MSW

The decline of an aging loved one will frequently create a need for family members to provide support and help design a plan of care. The coming together of family can be a positive experience, but the increased contact during a time of stress or crisis can also be fraught with conflict, evoke disagreements and bring up past hurts and underlying resentments.

As care managers, we often help counsel family members as they try to manage these issues. We understand that they may be experiencing sadness and grief surrounding the decline of their aging loved one, and that this not only complicates family relationships, but compounds the challenges that may already exist within the group. After all, when we are in pain and feeling vulnerable, we are usually not our best selves. Family members may also find themselves stretched in terms of time and other resources, which causes additional stress.

The Mayo Clinic’s website contains a helpful article entitled Alzheimer’s: Dealing with Family Conflict which contains practical recommendations for families to keep in mind: http://www.mayoclinic.com/health/alzheimers/AZ00027

In addition, I have outlined some helpful suggestions to consider in order to minimize or prevent family disharmony when faced with this challenging and emotionally-laden situation:

  • Be polite and considerate. It may sound simple and trite, but the truth is that we are often more polite to strangers than we are to our own loved ones, especially when under stress. Keeping this in mind and making an effort to treat each other with care and respect can go a long way toward smoothing interactions between family members. Of course, it’s important to balance this advice with the need to speak up respectfully when necessary.
  • Keep the lines of communication open. Email is often the simplest method to keep the whole group up to date, raise relevant issues and solicit suggestions for solutions. Everyone should be kept in the loop if possible, although levels of involvement will usually vary among family members. We are happy to provide regular updates to everyone in the family as well.
  • Walk a mile in their moccasins. It is easy to forget this old adage when it comes to our own family members. But it is especially helpful during challenging times to fully consider someone else’s experience and act in accordance with a sympathetic stance. For example, maybe you are frustrated that a sibling doesn’t spend as much time with your aging parent. Take time to consider the reasons before assuming that the sibling is selfish or uncaring. Does he have a difficult history with this parent?  Maybe his personal life or financial situation does not allow for the extra time and resources that would be involved. Look at the person’s situation, ask questions when appropriate, and keep in mind everyone’s limitations, just as you would like them to consider yours. This concept also applies to the aging loved one, who can use extra consideration given the state of health or advanced age.
  • Be realistic. Don’t expect family dynamics to change, or think that you can alter longstanding family roles. Sometimes, a realistic acceptance of the status quo will help prevent conflict among family members and lessen frustration levels.
  • Allow the aging family member some areas of control. If the aging loved one is able to do so, give her the opportunity to make choices, large or small, about her daily life. Keep in mind the loss of autonomy and dignity that she might be experiencing, and do your best to treat her with respect, even if the family needs to override some (or even most) of her decisions.
  • Remember that we are here to help. The Care Managers at Growing Options have the advantage of relative objectivity (so to speak). With our experience and expertise, we can be a helpful resource for providing perspective and answering questions about family challenges. We can also discuss sensitive matters with family members in order to help sort through differences of opinion and find creative solutions.

What You Can Do For Your Aging Loved One

By Miranda Pacchiana, MSW

At Growing Options, we are trained and committed to applying our professional expertise to caring for our clients. On your end, there are steps that you can take as a family member or friend to contribute to your loved one’s overall well-being, even if you are far away. These can range from the arrangement of finances to emotional support, or simply touching base on a regular basis with us as well as the client.

  • Keep in touch
    • With Us. We make a point to update our clients’ families regularly, and we are always available to answer questions and concerns. We welcome all input from your end, as information is a valuable tool in providing the highest level of care for the aging client.
    • With Your Aging Loved One via phone calls, Skype, FaceTime or an in-person visit if possible. Maintaining contact can be rewarding and enjoyable for you both. Keep in mind: if you notice any changes or signs of problems, let us know right away so that we can assess whether they need to be addressed.
    • Check in with those who have regular contact with your loved one. Although we will be in close contact with caregivers and staff and will regularly relay information, it may also be informative (and comforting) to speak directly with the people who see your loved one on a daily basis.
    • Stay in Contact with Family Members in order to keep everyone informed, and increase the circle of support for the client. Friends and neighbors nearby may want to be of assistance, and can be a helpful source of information as well.
    • Manage Bills
    • Get documents in order: This might include: aliving will, a living trust, POA (Power of Attorney), POA for healthcare, a standard will and the appointment of conservatorship/guardianship
    • Understand the Client’s Condition. The more you know, the better prepared you will be for developments in the health of your loved one. You will also be better able to share information with health care providers and notice signs of problems.
    • Keep Notes on your loved one’s medical condition, including updates, contact numbers, and insurance information. While we will maintain this information in our files, you may find it helpful to have it handy as well if crises arise.

The client benefits from a team of family and loved ones working together toward the best possible outcome. At Growing Options, we are here to help.

Is Hospice the Right Choice?

By Miranda Pacchiana, MSW

I became a hospice volunteer years ago, after attending a family friend’s funeral. During the service, I listened to his adult children describe their father’s last days under hospice care, and I was struck by how peaceful his transition seemed to be for him and his loved ones. With the help of a quality hospice team, this gentleman was able to take control of his final days, allowing him to make his last moments with family meaningful and beneficial for all of them.

The man I have described, who I will call Sam, had a degenerative disease. He gradually lost his sight in the last few years, and had become completely physically dependent on others, eventually receiving hospice care in his home. After some time, Sam made a decision to have his feeding tubes discontinued. Over the next few days, as Sam’s family described, he became more lucid than he had been in months. He asked his son, a professional writer, to compose his eulogy and read it out loud to him. Sam had the opportunity to hear himself depicted, in eloquent detail, as a father who was loving and devoted, compassionate and quirky. I remember one part in which Sam’s son described the ritual that he and his sister had carried out each evening as children, of sitting on the stone steps of their walk and waiting for their dad to arrive home from his job in New York City. He captured in words the excitement with which they all greeted each other, an evocative scene of family closeness and evidence of the value that Sam’s presence had in the lives of his loved ones.

Sam made sure to have private time with his daughter as well during his final days. Together they chose a Walt Whitman poem for his service and selected the passages that she would read in his honor. Father and daughter joked and expressed their love and affection one last time. Soon after, Sam passed away.

It seemed to me that Sam experienced the kindest and most desirable kind of death, for the hospice program made sure that Sam was supported and comforted, both physically and emotionally, and that his own and his family’s unique needs were attended to. Sam was allowed to choose the time and manner of his own death, and his wishes were respected and carried out after he was gone. After I had glimpsed this inspiring example of a man’s final steps toward death, I signed up to train as a volunteer myself.

To die with dignity, with as little pain as possible, surrounded by loved ones – these are important features of the hospice philosophy. Death is seen as a natural and normal process. Hospice seeks to enhance the quality of life in the patient’s time remaining. They attend to the unique wishes of the individuals involved so that they may achieve a degree of satisfaction in the preparation for death, and afterwards. Like a small community, hospice provides a variety of services for the patient and family in order to attain these worthwhile goals.

You may be considering hospice for yourself or a loved one. The following information will help you to learn more about the specifics that hospice has to offer, as well as the criteria to consider in making the choice for your family.

  • 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

Aging in Place: New Tools Facilitate an Old Idea

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: Connecticut is the 7th 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 in Riverdale,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.

Wandering: A Preventable Danger

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.

When a Parent Forgets Your Name

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.

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