Remembering the Music, Forgetting the Words: A Book Review

Whouley, K. (2011). Remembering the music, forgetting the words: Travels with mom in the land of dementia. Boston, MA: Beacon. $16.00 ISBN 978-0-8070-0331-2

 

            Remembering the music, forgetting the words: Travels with mom in the land of dementia is a memoir written by Kate Whouley, about her experience as a caregiver for her mother, who has Alzheimer’s disease. This book is a comprehensive and detailed autobiographical account of both Whouley’s and her mother’s lives as they experience the disease. The story chronicles the period just prior to diagnosis, until just after the funeral. Whouley’s writing is informal and creative, and tells a story that is easily understood by a variety of readers. For the most part, the book is a chronological story of her mother’s Alzheimer’s disease, and how it affects the lives of the two women. Background information on their lives is integrated very skillfully, in the form of stories, and supplements the present information very well.

            Throughout the book, Whouley raises a lot of important issues about living with Alzheimer’s disease, and being a caregiver for someone living with the disease. For example, she writes about how her mother is able to hide the early symptoms of the disease simply by not letting her daughter into her house. Next, she is concerned with her mother’s safety in her own home, and has to make the difficult decision to move her to an assisted living facility. At this point, her mother’s condition has become much worse. Not long after Kate is granted power of attorney and the right to make medical decisions, she must decide whether or not to treat her mother’s newly discovered lung cancer. Meanwhile, Whouley is still going about her daily life; trying to work, play her music and keep up her own house, all in addition to caring for her mother, packing up her house, and preparing it for sale.

Before reading this book, I had been thinking a lot about my grandmother, who is in the early stages of dementia, and I had a lot of questions about how a family might be affected by Alzheimer’s disease. This book answered a lot of those questions very thoroughly, often bringing up things I never would have thought about, yet it also left me with many more questions still to be answered. Prior to reading the book, I had a basic idea of how Alzheimer’s disease affects the body and the brain, but I had never read a firsthand account like this before, and it definitely made me think about the disease in a different way. One particular example which caused me to consider Alzheimer’s disease differently, is Kate’s comparison of Alzheimer’s disease to terminal cancer. In this comparison, she says that, “No one dies of Alzheimer’s. The disease does not ravage the body the same way a terminal cancer does. Alzheimer’s patients simply forget how to stay alive” (Whouley, p.77). That idea really stayed with me, and made me think about what it must be like to just forget how to do the basic things a person needs to do to stay alive, and then to forget that you even need to do them. To be honest, it scared me because it is so devastating to think about.

I found Whouley’s writing to be quite engaging and easy to read, though the subject matter was difficult at times. It is very informative, and gives the reader a clear picture of what it is like to be a caregiver for a relative with Alzheimer’s. Reading this book made me realize what my aunt may be going through as she cares for my grandmother in her early stages of Alzheimer’s disease, and it also prepared me for what may be ahead. I am also now aware of ways that I can help, but which would never have crossed my mind before. For these reasons, I highly recommend this book to anyone who has a friend or loved one that is affected by Alzheimer’s disease. It is by no means a scientific account, or a set of rules, but it does provide insight into the experiences that may lie ahead and gives the reader a good understanding of the subject matter.

Death and Dying: Traditions, Rituals and Customs Across Cultures

I grew up in a small town in Northern California, where everyone pretty much looked the same, celebrated the same holidays, and observed similar cultural traditions. Over the course of my life, through a series of moves, I have learned many new ways in which people celebrate holidays, accomplishments, births, and deaths. I have experienced a great deal of loss in my life, and many people close to me have passed away, so I became particularly interested in the ways that different cultures view death. We all have to deal with death, but as I have noticed throughout my life, different cultures have different ways of dealing with death. Customs, rituals, and traditions around death and dying vary by culture, and in many cases, these ways of dealing with death tend to be predicted and guided by religion.

            Monotheistic religions, such as Christianity and the Jewish faith, tend to view death as a transition to another place, more specifically a “better place” (Carteret, 2011). Both of these religions have a common belief in the afterlife, but each one interprets it differently. In the Christian faith, there is a belief that, upon death, you are judged by God. If you have repented for all of your sins, you will cross over into a “better place,” and Saint Peter will let you in to spend eternity in Heaven. If you have led a sinful life and are unrepentant of those sins, then you are doomed to spend all of eternity in Hell. Christian funerals are held about a week after death, and typically consist of a gathering in a church, where scriptures are read and the deceased is eulogized. The interment process varies, based on whether the body has been cremated or is to be buried. The Jewish faith puts more emphasis on one’s purpose in life on Earth, fulfilling one’s duties to God and fellow man. In both cases, the deceased receives a funeral and burial, but the customs differ with each religion. For example, Jewish law states that burial must take place as soon as possible, cremation and embalming are forbidden, and a simple pine box is to be used for burial (Klug, n.d.). The funeral is simple, and after the burial, it is customary to sit Shiva for three to seven days in observance, which allows the mourners to heal from their loss.

            Many cultures have ancestor worship traditions, and they are based on the belief that life is cyclical, and the spirits of their ancestors remain alive, or have been reincarnated. Latin American cultures are especially well-known for their Dia de los Muertos celebrations, during which they build altars and honor their ancestors. These altars are decorated with flowers, candles, photos of the dead, and mementos to remember them. This custom is based on the philosophy that death is a naturally occurring part of life, and is meant to be a spirited celebration and welcoming for the return of their spirits. Chinese cultures participate in ancestor worship as well, and believe that there is always a spiritual connection between the living and their ancestors (Abernethey, 2008). This culture also has a custom in which they honor their ancestors, called “the sweeping of the graves.” During this time, families gather at the graves of their ancestors, sweep the graves, light candles, plant flowers, and bring offerings of food. The family members light incense, pray, and burn offerings of money to their departed ancestors. By tradition, they wait until the candles have gone out, signifying that their ancestors have finished the food that has been offered to them. Once that signal has been received, they begin to eat and celebrate the spirits of their ancestors.

            As you can see, different cultures have different traditions, rituals, and ways of dealing with death and dying. How you deal with death depends on your culture, and some people may adopt a different culture than the one in which they were raised, in turn adopting new ways of dealing with death. You may find that you prefer to honor and remember your loved ones in a variety of ways, as I do, and no one way should be viewed as “right” or “wrong,” but respected as a personal preference.  Many of your friends and loved ones may have different beliefs than you, which means that they will experience death and dying differently than you do, and hopefully this blog has given you some insight into how you can help them deal with their losses.

Alzheimer’s Disease: How It Affects the Brain, and What You Can Do If It Affects Your Family

This past June, I attended a family gathering with many members of my extended family, and we noticed that our great-aunt Doris was not present, even though it was her birthday. At one point during the afternoon, we all spoke to her on the telephone to wish her a happy birthday, and something seemed a little off about the conversation. I could not quite figure out what it was, but Auntie Doris seemed to be a bit distant, and the conversation seemed very superficial, which struck me as odd and unusual. After everyone had their turn on the phone and said good-bye, my Aunt Laura told me that Doris had been diagnosed with Alzheimer’s disease, and unfortunately, it was progressing quickly. After taking in this information, I thought about it and realized that I did not really know much at all about Alzheimer’s disease. I had no idea what causes it, what the symptoms are, how it progresses, or how it affects the brain and the body. I did an Internet search, and the answers to those questions were very easy to find. Alzheimer’s disease is a neurological disorder that affects the brain and motor functioning; this blog will define the disease, identify symptoms and treatments, and suggest some coping strategies for families who are affected.

            According to the National Institute of Health, Alzheimer’s disease attacks tissue in the brain, impairing and destroying motor functions and memory. The individual who is affected by the disease will become unable to form memories, function properly, and carry out everyday tasks. Alzheimer’s disease is caused by plaques and tangles in the brain or a loss of connection between neurons; symptoms of the disease typically do not show up until about ten years after the individual has been affected. The disease causes the brain to work with less efficiency, and the damage spreads to the hippocampus, which is an important area of the brain when forming memories, and the brain tissue begins to shrink after neurons die. There are ten warning signs of Alzheimer’s, which represent typical symptoms, and the Alzheimer’s association has a very informative list of them on their website. These symptoms include memory loss, confusion with time or place, and new problems with words or speech, to name a few. In March 2012, the Alzheimer’s Association released a report, in which they estimate that 5.4 million Americans suffer from Alzheimer’s. That works out to 1 in 8 people, making it very likely that someone whom you know has been affected by the disease.

            After reading this, you might be wondering, what can we do to treat Alzheimer’s disease? Is there a cure? Unfortunately, the damage from Alzheimer’s disease cannot be reversed, and while there is no cure, the symptoms can be treated. According to the Alzheimer’s Association, drugs can be effective in treating some of the cognitive symptoms, such as memory loss and confusion, but they are only effective for a limited time. Behavioral symptoms such as anxiety, irritability and depression can be treated with antidepressants or anti-anxiety medications. Non-drug approaches like environment change are also effective. Sleep disturbances are a common symptom, and are best regulated with non-drug approaches like keeping meals on a time schedule, exposure to morning sunlight, and only using the bed for sleep. Since Alzheimer’s is a progressive disease, these are not to be seen as “cures” for the symptoms, only temporary treatments, as the patient’s condition will continue to deteriorate. Most patients live approximately eight years from the time symptoms become apparent, but depending on the treatment and overall health, the patient could live up to 20 years after symptoms are first detected.

            Alzheimer’s is a devastating diagnosis, and can be hard to accept, both for the patient and their family members. What can you do to cope with this diagnosis, once it has been confirmed? The best thing you can do is to be supportive of your loved one, from the diagnosis until the end. You can educate yourself on Alzheimer’s, and a good place to start is the National Institutes of Health website. There is a quite comprehensive section devoted to finding help with things such as caregiving, legal and financial planning, clinical trials, and living with Alzheimer’s. This page offers a wealth of information, and can help you to identify the signs, understand how the disease affects the brain and body, and figure out what to do following diagnosis. Alzheimer’s disease may be hard to cope with at first, but there are many resources available to educate yourself. If one of your relatives is diagnosed with the disease, remember: stay calm, use all of these resources to your advantage, and most of all, be supportive and enjoy the time you do have with your loved one.

Financial Exploitation In the Aging Population

Recently, I was shocked to learn that my grandmother had been the victim of financial exploitation, which had been committed by the advisor whom she had entrusted to handle her finances after my grandfather passed away. I was shocked by this news, and it prompted me to do some research of my own on the topic, so that I could find out more about financial fraud against the elderly. More specifically, I was interested in finding out how these acts are being committed, who is responsible, and what I can do to protect other members of my family. As I conducted this research, I was saddened by the articles I read, and shocked by the statistics contained therein. It is unfortunate, but members of the aging population are vulnerable to many types of financial exploitation and fraud.

            As I began my search for information, I wondered: what types of scams and fraud are out there? I started with the AARP website, and I realized that scams are everywhere. They can be as simple as replying to a spam text message, or believing the person on the other end of the telephone who is telling you that you have won free airline tickets. One of the more effective scams involves an urgent phone call from someone pretending to be a grandchild, saying that they are “in trouble” somewhere far away—possibly even a foreign country, and need money quickly. Financial exploitation can also happen if someone close to an older adult has been given control of their finances and is doing such things as forging their signature on checks, or withdrawing cash from their bank accounts.

            With all of these different types of fraud and exploitation out there, I had to find out who is committing these crimes. I did not have to look very far before I found a CBS News article listing the top three ways that elderly adults are being exploited. The main culprits are family members who re-route money to benefit themselves, caregivers who do the same thing, and strangers perpetrating other types of financial deception. In my grandmother’s case, it was a trusted financial advisor, and the fraud was not exposed for nearly ten years. It is important to remember, these crimes can be committed by anyone, so we need to help our loved ones by communicating with them frequently about money, and how they can avoid being targeted for scams.

According to the Washington Post (Singletary, 2012), over seven million adults over the age of 65 have been victimized by some type of financial exploitation, and there are ways you can help make sure your loved ones do not become one of them. Perhaps the simplest thing you can do is to stay in regular, frequent communication with elderly relatives; CBS News suggests that you go together to a workshop or program on finances at the senior center. You may offer to look over monthly bank statements, to help look for hidden charges that may not be legitimate, or to assist them in setting up electronic bill-paying services through their bank. CBS News reports that many elderly adults fall victim to fraud and scams because they are lonely and feeling isolated, so it may be as simple as visiting them frequently. In doing this, you will also be able to pick up on other red flags, such as incessant phone calls from telemarketers, or a sudden accumulation of unnecessary purchases in their home. If you live far away from your relative, you could arrange for a trusted friend to visit when you cannot.

It is disturbing to think that people are targeting your elderly relatives in order to take their money, but it happens every day. The aging population is vulnerable to financial exploitation, but there are a lot of things we, as friends and family, can do to prevent it. The first thing we can do is to educate ourselves on the different types of scams out there, and pass on that education to our relatives, especially the ones who are vulnerable. It is sometimes important to get a second opinion, or to have another advisor review plans when setting up something like a trust or financial plan. It may cost a little more up front, but I cannot help thinking a step like that would have saved my grandmother a lot of money in the end. The most important thing we can do is to keep an open dialog with our aging family members, be supportive of them, and to know and act upon the red flags that signal financial exploitation.

Loneliness and Aging: The Cost Is High, But You Do Not Have To Pay

As we grow, we create a strong social support network around ourselves, and this network includes friends, co-workers, colleagues, and family, near and far. Many of these relationships are face-to-face interactions with people whom we see on a regular basis at work, home or social activities; others we may only get to keep in touch with by talking on the phone, video-calling, or writing letters and e-mails. As we age, we cultivate lifelong relationships with our family and friends, and this strong social network can have many positive effects on the quality of life in the growing population of aging Americans. A study out of Harvard University cites healthy relationships as the key to healthy aging.

            A strong social network can do many things to help facilitate a healthy lifestyle and promote longevity. Friends and family members can help to lift your mood just by being around, which, according to Time magazine can motivate you to take better care of yourself, and to cut back on risky behaviors like smoking or drinking too much. In addition, there are other benefits to having people around you – they can cook meals for you, help you to remember to take medication, or help you get to doctor’s appointments. A recent study cited in the article even showed that having strong social relationships may also improve our body’s natural ways of fighting off the common cold virus, as well. The more diverse a person’s social network, the less likely they were to develop a cold after being exposed to the virus. Those with the most diverse networks rarely even exhibited any symptoms, either.

Chronic loneliness has been linked to such risks as high blood pressure, coronary heart disease, depression, difficulty with sleep, and dementia. This seems like a grim diagnosis – loneliness is just not good for you. Due to circumstances such as death, retirement, or relocation, the aging population also faces many challenges in maintaining their social networks, leaving them at risk for these health problems, and other negative consequences of loneliness. If, for example, you were in your 60s or 70s, lived alone, and had no social network that you interacted with on a regular basis, even a fall at home could come with disastrous consequences. You could end up waiting for days, incapacitated, before someone found you. Of course, we hear that story often, but it could be avoided with frequent social interactions.

What can you do to make sure you don’t become one of those “chronically lonely” aging Americans? The logical solution is to make more friends, but that can be hard for adults over 50 years of age. In this situation, many people, like Paula Rice, are turning to online social networking in order to get their daily dose of human companionship. Ms. Rice is 73 years old, has no family close by, and is forced to stay at home, due to health issues. Much of her social interaction comes from online social networking sites like Eons.com, which is a site that caters to aging Baby Boomers, and from another site that is made for former police dispatchers like herself. Before discovering these sites, she says she was very bored, but now “has a reason to go on.” Many other Baby Boomers are discovering that online social networking can provide quality interactions when their social support system begins to deteriorate, as a result of death, retirement, and relocation, and are finding it an easier way to stay in touch with friends and family if they cannot leave the house.

So, now that you’ve gone and built your support system back up, what kinds of benefits do you think you are you going to reap? Well, you can expect to be happier, healthier, and hopefully, to live longer – possibly up to seven and a half years longer, says Time magazine. The most effective strategy is to keep cultivating your social network, and keep those friendships going however you can. No matter how you get your social contact, it has been shown to have many positive benefits, and to increase quality of life and longevity as we age.

Caregivers: Who They Are, and Some Challenges They Face

We all get older, and it is inevitable that, once we get to a certain age, we are going to need some sort of help with day-to-day living and taking care of ourselves. We may need help with household tasks, personal care, feeding and grooming, running errands, or getting around. Who is going to help us with that? In some cases, it will be a paid care provider, but according to the CDC, unpaid caregivers give 90% of long-term care. Caregivers are necessary to the aging population, yet they are often unpaid, and face many challenges. Who are these caregivers, and what types of challenges do they face?

            According to a Bureau of Labor Statistics Time Use Survey that was released in June 2012, 39.8 million individuals are caregivers, with over half being women between 45 and 64 years of age. These caregivers are often also parents, and have jobs, so their responsibilities as a caregiver are above and beyond their other responsibilities. It is hard to find time to attend to all of these tasks, so they may be faced with difficult decisions and be forced to cope with many stresses and strains as a result of trying to manage all of their tasks. They may have many unmet needs, such as not being able to find time for themselves, or difficulty balancing all of their responsibilities at work and home. Think about what it would look like for a caregiver to have to take their young child to the doctor, while caring for an elderly parent at the same time? It is likely that the caregiver would need to take both the child and their elderly parent along to the doctor. What would you do in this situation?

Caring for an aging relative can be a job on top of a job, and it is very likely that many of your friends and co-workers have taken on that responsibility. Even at my young age, it is becoming more and more common for me to hear my friends and co-workers talk about the responsibilities and the issues that come along with this “extra” job of caring for aging parents or other relatives. Many of them worry about having to choose between work or school, or caring for their relative. They may have to miss class to take their parent to a doctor’s appointment, or miss work in order to stay home with a relative who needs constant care or supervision. In some cases, such as that of Rachel Robinson, a caregiver may even lose their job while caring for a sick relative. Why do we attach a stigma to elder care, but not child care? Why is it acceptable to take time off to care for a child, but not an aging parent? My best friend frequently finds himself in the position where he must miss class to take his mother to the doctor, and he is also experiencing challenges in finding an employer who will accommodate his needs as a caregiver. I often think about his responsibilities and try to put myself in his shoes, and it is hard for me to imagine what I would do if I were in his position.

I have been thinking about what all of this means for me, as my parents are part of the aging baby boomer population, who are all nearing the point where they will need a caregiver. My parents are both in their early 60’s, and I know it may be fifteen years before either of them needs full-time care, but even now, that affects decisions that I make. For example, I do not want to move far away in case they need my help sooner. I know I will have to make difficult decisions when it comes to possibly missing work to take one of them to the doctor, and I hope that my employer will be accommodating of that request. I really think that we need to think about the needs of caregivers and, as a society, be more accommodating and respectful of what they do, and to offer them more support in dealing with the challenges that come with it. They are doing a compassionate and very necessary task, so it is the absolute least we can do to help them meet the challenges they face.