10 Things to Remember if You Love a Person with Dementia

Assisting and helping elderly peopleToday is World Alzheimer’s Awareness Day. It’s a good day to repost this important article and to remind people about the book I wrote after caring for my husband who passsed away from younger-onset Alzheimer’s disease seven years ago. The book has helped so many people, which is what my intention was in writing it. “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” contains a treasure trove of information on how to stay connected with your loved one, keep calm, improve immunity, reduce stress and feel happier and healthier. Plus, it includes 20 healing modalities that the caregiver can do alone or with their loved one. Available wherever fine books are sold and on Amazon.

It’s sometimes hard to love a family member who has dementia or Alzheimer’s disease. People with dementia can be quarrelsome, uncooperative, negative, whiney, belligerent or combative. They might get their nights and days mixed up, pace the floor for hours, wring their hands non-stop, or cry like a baby. They might ask you the same question twenty times in a row, refuse to budge when you need to get them to an appointment, or refuse to eat what you’ve made for dinner.

When the going gets tough, it helps to remember that you love the person who resides inside that body that is tight and tense and inflamed from amyloid plaque that has strangled the neurons and disrupted the neurotransmitters that allow thoughts to flow and emotions to stay even. He or she is the same person you married, the same loving parent who nurtured and guided you, the same sibling you shared holidays and outings with, or the same friend who offered a should to cry on or who helping you move to a new home.

When you’re about to lose it, walk out, or hide in the closet, stop for a moment and remember at least one of these 10 things about the person you lovingly take care of.

People with dementia and Alzheimer’s often feel:

  1. Embarrassed when you say, “ I just told you . . ..” Instead of reminding them that they forgot what you told them a second ago rephrase it, breaking it down into a simple sentence . . . or completely change the subject.
  2. Fearful because they don’t see things spatially the same way we do. Their sense of space is distorted and their vision gets skewed, not because there is something physically wrong with their eyes. But rather, the brain interprets what the eyes see, and when the brain doesn’t work right our perception gets distorted. Two things you can do to help are to put extra lights in dark areas of the living quarters and remove throw rugs in order to reduce falls.
  3. Lonely because they can’t communicate well, or some of their friends have “jumped ship.” Set up times for family or friends to visit or take your loved one on an outing.
  4. Confused because they don’t understand why they can’t drive anymore, or why they can’t go for a walk alone, or why they can’t remember where they live or what their son’s or daughter’s name is.
  5. Angry because the keys to the car have been taken away, or because they get frustrated when they can’t express their feelings or thoughts.
  6. Sad because they can’t read a book or newspaper, or can’t manage to engage in their favorite hobby or sport.
  7. Anxious because they can’t move as fast or get dressed by themselves or put on their shoes easily. Or, because they hear sounds that are disturbing or are bothered by someone else’s behavior.
  8. Nervous because they have lost their sense of balance and feel unsteady on their feet. Or because they don’t like the feel of water on their skin and don’t want to bathe and don’t want to be forced.
  9. Frustrated because they can’t write a check, figure out how much tip to leave, or remember how to use the TV remote control.
  10. Paranoid because they think someone is stealing their money or prized possessions.

When all else fails, take a deep breath and put on some music. It almost always uplifts the spirit—for both the caregiver and the person being cared for.

Please subscribe to my blog for more informative articles like this. Thank you!

12 ways to ensure end of life peace for our loved ones and ourselves

White Bird in Clouds

A couple of years ago, Mom and I talked about facing the end of her life. I asked her if she had a good life and she said, “yes.” I asked her if she had regrets and she said, “yes.” But she didn’t want to talk about that. I told her I would do my best to be with her at the time of her passing. I was, and I am thankful that I fulfilled my mother’s wish and my promise to her.

Just two weeks ago my beloved mother passed away from pneumonia. Pneumonia has traditionally been called “the old man’s friend” because a frail elderly person typically loses consciousness and passes fairly easily in sleep. Although it was not easy watching my mother drown in her own fluid, she appeared to not be in pain. Her breathing was labored for hours, and then she sank into a state of peaceful acceptance as her last breaths came in whispers until the last tiniest breath sealed the finality of her life. 

I’m relieved that I had made the funeral arrangements with my brother a year ago. At least I didn’t have to deal with that on the day that the earth stopped spinning and I forgot to drink water as I faced a new reality of living in a world without a mother. I am also relieved that I made arrangements with Chevre Kadisha, the Jewish Sacred Burial Society. Many religions have complex codes of conduct for survivors and very specific rituals and customs that have been carried out for centuries. Harvey Lutske writes in The Book of Jewish Customs that the practices and customs rabbis established for survivors to observe following the death of a loved one help the survivors “cope with their loss, continue with their lives, recover emotionally, pay respect to the dead, and perpetuate the memories of those who have gone before us.”

Final gift of love

My mother’s body was lovingly washed by a group of women in a ritual called Taharah. This cleansing requires several people because the entire body must be washed and moved from side to side in a specific way according to Jewish law. Afterwards, a huge amount of water is poured over the body and passages are read from the Song of Songs. The people performing the Taharah ask for forgiveness in case they performed some indignity. The body is then dressed in a cotton or linen shroud and put into an unadorned, pine coffin. Typically, someone sits with the body or “met” until internment. This is called sitting Shimira, and it is often done in two-hour shifts around the clock. The person reads psalms or prayers silently or out loud, or meditates while a candle burns continuously at the head of the coffin.

Buddhists also incorporate a cleansing of the body and a vigil into their mourning ritual. Families are often invited to wash the body of their deceased loved one. Washing a corpse enables you to become intimate with death in a way no other thing does. It’s hard work, but it’s an important way to honor the dead, said one Buddhist minister.

Death is the great equalizer

To the question, “What is the value of death?” the Jewish rabbis answered, “If nothing ever died, we, the human race, would not learn how to value time. Life’s finiteness is earmarked, and ended, by death. And learning to face death may be life’s greatest challenge.”

As hard as it is, we can take control and manage the death and dying of our loved ones. We can do things that make sense to us and provide us with comfort. Kim Mooney, the Board President of Conversations on Death, and Director of Community Education for Tru Community Care, Colorado’s first hospice, says, “The more you’re involved in the death and grieving process, the more we’re able to be in touch with that innate place in ourselves that tells us how to live. It’s the fear of death that makes us live. And it’s the terror of death that makes us run from the experiences that will teach us.”

As painful as it is,’ says Mooney, grief work and dealing with the death of a loved one guides how you’re going to live your own life. “We’ve skewed our relationship to death in this society,” she says, “but we can’t walk away from it. If you don’t do the work around it, you will somehow diminish the quality of your life. Grieving is a life-long process. Our lives are a series of gains and losses. Learning how to grieve, and incorporating a loss and moving on is critical to being able to become a mature, spiritual person because it implies an acceptance of what life is.”

I am an expert at grieving because of my significant losses. But this time will be different because I lost my mother, my primary connection to the world. This time is especially profound because no one can replace a mother. It will take time before I don’t have the thought to call her, to check in with her, to make sure she is okay. And even though I have children and grandchildren, I will always ponder the profoundly unique love that binds a mother and child in remembering my own sacred relationship with my mother.

In listening to the sweet words and stories that so many people told me after learning of my mother’s passing, I am reminded that it is how we make people feel—not what we accomplished—that is what we remember about a person. Death once again serves as a teacher to remind me that we are here temporarily, and that as my teacher loved to say, “Do not trust the time. Life is short, make it sweet.”

These personalized rituals can provide comfort and ease the intense pain that accompanies death, dying and grieving:

  1. Have a heart-to-heart talk with your loved ones before they get too ill. The Five Wishes is an easy-to-read end-of-life document that helps makes the difficult discussion about what you would like your end of life to look like.
  2. Hospice is a free palliative service offered by Medicare/Medicaid that supports the dying patient as well as the family
  3. Play music that the dying person loves, sing hymns, chant, etc.
  4. Dress and wash the deceased and dress the body in a white linen shroud
  5. Muslims typically share their prayers with the person who is dying before encouraging the dying person, if possible, to say or listen to the words, “I bear witness that (there is) no god except Allah; One is He, no partner hath He, and I bear witness that Muhammad is His Servant and Messenger. Once the person has passed away, the next step is to perform the ghusl, (similar to the Jewish taharah) or the washing of the deceased’s person body. The ghusl can can be done by most adult family members of the same sex as the deceased. After the body is washed, it is then enshrouded, typically in plain, white cloth.
  6. Have a meaningful farewell service
  7. Honor the loved one at different times during the year
  8. Build memory books
  9. Finish what the deceased person didn’t
  10. Write letters to the deceased and writing them back to yourself
  11. Donate a toy for the age of a baby or child who died to “Toys for Tots
  12. Write a life story

 

10 Ways caregivers can reduce stress and feel instant relief

Spa still-life.

June is Alzheimer’s & Brain Awareness Month, and in celebration of the anniversary of the release of my book “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” this month I will be posting ways that caregivers can relieve stress, feel better and more energetic, and forge a stronger connection to the person they lovingly care for.

  1. Before you get out of bed in the morning, breathe deeply and for a minute or two repeat an affirmation such as: “Today will be a good day.” “I am a loving, patient person.” “I’m feeling strong and healthy today.” “I am grateful for my family and friends.” “I am a kind, compassionate caregiver.”
  2. Eat a good breakfast. Your blood sugar is low when you awake after fasting for 6-8 hours. Support healthy blood glucose levels by eating protein, a complex carbohydrate, and colorful fruits or veggies for vitamins and antioxidants. A bowl of cereal with low or no-fat milk doesn’t cut it. As a caregiver you need the energy to get you through the morning. My favorite energy-boosting, neurotransmitter supporting breakfast is eggs (anyway you like them), sautéed kale or spinach with onions, a side of beans and melon or strawberries to finish it off. Yes, it sounds like a lot, and it is. But the portions can be small and you can use your left-over veggies from dinner the night before. Of if you want a lighter breakfast during summer, have a protein smoothie with yogurt, protein powder and fruit. Just make sure that whatever you eat includes high-quality protein.
  3. Go for a walk. If your care partner is ambulatory, take him or her with you. Research published in the March 2017 issue of “Cell Metabolism” found that a brisk walk could help slow the aging process. In “Calmer Waters,” researcher Monika Fleshner, PhD writes “Based on the research that my colleagues and I have done in the past thirteen years, we know that regular physical activity promotes stress robustness (resistance to stress) and changes the way the brain and body respond to stressors. . . If you are highly conditioned from a regular exercise routine, then you can respond better psychologically and physically.” (pg. 174, “Calmer Waters”)
  4. Sing in the shower, sing with your care partner, sing in a spiritual setting. “Music engagement can help you connect with your loved ones and care partner. Oxytocin, the chemical in our brain that is released during intimate interactions such as breastfeeding and intercourse, helps us to form trust and bonds with other humans. It is fascinating that this chemical is also emitted when people sing and make music together,” says neurologic music therapist Rebekah Stewart, MA. (pg. 224 “Calmer Waters”)
  5. Stay present. Learning how to stay present enhances how you relate to the person you are caring for, allowing you to create community with that person. The simple act of breathing with someone—of matching your breath to his or hers—enables you to create a spiritual connection with that person.
  6. Create a soothing space. Light a candle, enjoy a vase of fresh flowers, light incense, listen to uplifting music.
  7. Use aromatherapy oils to uplift the spirit and calm you down. Explore the variety of essential oils which can be used in a diffuser, spritzed on a pillow case, shirt collar or handkerchief or tissue that you can tuck in your shirt pocket.
  8. Dance as though no one is watching you. Dance alone in your living room to your favorite music, or with your care partner. It is an easy way to get the blood flowing, loosen up stiff muscles, and a fast and easy way to uplift your mood.
  9. Get a dog (if you don’t have one). “Animal Assisted Therapy is recognized by the National Institute of Mental Health as a type of psychotherapy for treating depression and other mood disorders. Spending time with an animal seems to promote a sense of emotional connectedness and well-being. Touching and playing with animals is a wonderful way for families coping with Alzheimer’s disease to experience joy, fun, and laughter,” says Diana McQuarrie, Founder and Executive Director Emeritus of Denver Pet Partners. (pg. 107 “Calmer Waters)
  10. Laugh. Charlie Chaplin once said that “A day without humor is a day wasted.” No matter how hard things seem, even if you are a caregiver to someone who has been ill for many years, try to find the humor in everyday things. My husband had Alzheimer’s disease and toward the end of his life he had trouble eating a sandwich. Once he asked, “What is this?” after I handed him a chicken salad sandwich. When I told him what it was he responded by throwing the sandwich across the table and exclaiming, “This chicken is dead!” I burst out laughing and because laughter is contagious so did he. Watch YouTube funny videos of animals, children, etc. when you’re feeling down. You will soon be laughing and the endorphins will flow and uplift your mood.

Loneliness vs. Aloneness: Why one is dangerous to your health

Mother and daughter

Loneliness puts one at risk for a number of serious health issues.

When I transferred to a university 2,000 miles from home my second semester sophomore year, I experienced loneliness for the first time. It emerged as a physical sensation in my chest and developed into a mild depression. Four decades later, I have a large network of friends and family, including four grandchildren. I am never lonely, but I’m often alone, and I relish that quiet time.

What is the difference between being lonely and alone, and why is one dangerous to your health?

Loneliness is a complex, uncomfortable emotional response to lack of companionship and or isolation. It is nothing to be ashamed of. Studies have shown that Americans feel increasingly alone. Two recent studies suggest that our society is in the midst of a dramatic and progressive slide toward disconnection. In the first, using data from the General Social Survey (GSS), Duke University researchers found that between 1985 and 2004 the number of people with whom the average American discussed “important matters” dropped from three to two.  Even more stunning, the number of people who said there was no one with whom they discussed important matters tripled: In 2004 individuals without a single confidant made up a quarter of those surveyed.

You might have hundreds of friends on Facebook and still be lonely. Because, according to John T. Cacioppo, a neuroscientist at the University of Chicago and coauthor of Loneliness: Human Nature and the Need for Social Connection (W.W. Norton & Co., Inc., New York, 2008), social networking sites provide people with a false sense of connection that often increases loneliness in people who feel alone. Cacioppo says that social media sites should serve as a supplement to personal interaction, rather than as a replacement. He compares connecting on a Web site to eating celery: “It feels good immediately, but it doesn’t give you the same sustenance,” he says. For people who feel satisfied and loved in their day-to-day life, social media can be a reassuring extension. For those who are already lonely, Facebook status updates are just a reminder of how much better everyone else is at making friends and having fun.

How do we feel lonely?

You can be lonely in a marriage in which you have nothing in common with your spouse who is a work addict or involved in activities that don’t include you. You can feel terribly lonely, as I did, after moving to a new city where you don’t know a soul. Or you can feel lonely (and depressed) if you are adjusting to living alone in the home you shared with a deceased or divorced life partner. New parents often experience loneliness during the early months of a newborn’s life if they are on maternity leave and not interacting with their work colleagues.

Loneliness usually includes feeling anxious or depressed, and can manifest as physical, emotional, mental, and social symptoms. But feelings of depression can also lead to loneliness because often a person who is depressed doesn’t have the energy or will to make the effort to socialize.

The health risks

Older adults who describe themselves as lonely have a 59 percent greater risk of functional decline and a 45 percent greater risk of death. Chronic isolation and loneliness have been linked to depression, physical decline, and even shorter lifespans. It’s a problem that can affect anyone: infants, teens or adults, and evidence suggests Americans are more socially isolated now than ever before.

Researchers have found that prolonged isolation is just as dangerous as obesity, smoking 15 cigarettes a day or alcoholism. Isolation and loneliness can:

  • compromise the immune system
  • contribute to depression and anxiety
  • affect sleep
  • increase stress hormones
  • contribute to premature aging
  • increase the risk of a stroke or heart attack
  • contribute to cognitive decline and risk of dementia
  • lead to the admission to nursing homes or the use of emergency services
  • result in death

The problem of social isolation

An estimated one in five adults over age 50—at least 8 million—are affected by isolation. Although the terms isolation and loneliness are often used interchangeably, they’re not exactly the same thing. Loneliness refers to how people perceive their experience and whether they feel isolated. A person can be surrounded by many people but still feel alone. Isolation, though, can be measured by such things as the size of a person’s social network, availability of transportation, and the ability to access resources and information.

Eradicating isolation has been identified by the American Academy of Social Work and Social Welfare as one of its top challenges today.

Factors that put you at risk for isolation “Framework for Isolation in Adults Over 50,” AARP Foundation (May 2012)

  • Living alone*
  • Mobility or sensory impairment*
  • Major life transitions or losses*
  • Low income or limited financial resources
  • Being a caregiver for someone with a serious condition
  • Psychological or cognitive challenges
  • Inadequate social support
  • Rural, unsafe and/or inaccessible neighborhood
  • Transportation access challenges
  • Language barriers
  • Age, racial, ethnic, sexual orientation and/or gender identity barriers

* Primary factors

 

Why being alone can be a good thing

I am a professional writer and require a lot of alone time. In fact, I prefer to be in my home office without anyone in the house for hours or days at a time so that I can work without interference. I am also a meditator and love to dive deep into the silence. I love to read, I love to play the piano. I enjoy my own companionship. All these things are solitary activities that strengthen my spirit and feed my soul.

Yet, I need to engage socially after a few days of being snowed in, or after a few days of spending hours at my computer. Over my lifetime, I’ve built up a reserve of people to play with, have lunch with, discuss with, and activities to engage in, and I doubt if I’ll ever feel lonely again as I did when I was 19 and moved to a strange city far from my family and friends.

Ways to feel connected

If you are feeling a lonely or isolated, get ahead of the lonely curve now to expand your social network. Don’t put it off. Getting socially connected might take some effort, but it is definitely worth it for so many reasons. You will gain friendship, companionship, better health, and in the process you will be giving of yourself, which is the best gift of all.

Here are some ideas to help you get going:

  • Volunteer at a school, library, hospital, food bank, etc.
  • Attend religious services/spiritual gatherings
  • Join or start a book club.
  • Plan a neighborhood potluck.
  • Stay physically active and join a hiking/walking club.
  • Take a class to learn something new.
  • Join a “New Mom’s Group,” or go to the senior center for a lecture or interesting program.
  • Teach others how to knit, sew, bake, garden, paint, etc.
  • Get involved in a community project or cause.
  • Host a movie night for your neighbors.
  • Learn how to use social media to stay connected with friends and family.
  • Before you give up your keys, learn about transportation options in your town.
  • Consider living in a co-housing community.

I’d love to hear from you. Please send your story of how you stay connected.

“Life is short, make it sweet.”

 

16 Stress-busters to nourish your body, mind and soul

Girl can't sleep

Susan, a recent divorcee, is the 48-year-old mother of two college students. She works full-time as a legal secretary and after work she helps her mother, who is in the early stages of Alzheimer’s disease. On weekends Susan catches up on her errands and shops for her mom.  During the week she falls into bed exhausted at 9 p.m. . . . if her mom doesn’t require extra help. But Susan can’t sleep. She’s too worried about everything she has to do, and she is worried about her mom. Susan develops an ulcer and is diagnosed with hypertension. Unfortunately, Susan is a composite of the more than 16 million caregivers in the United States who spend 18 billion hours of unpaid time each year caring for a loved one with dementia.

Every day, one million Americans are absent from work because of stress-related disorders. Experts agree that stress is a factor in most diseases, and a major factor in disorders such as anxiety, insomnia, depression, ulcers, rheumatoid arthritis, headache, hypoglycemia, asthma, herpes, hypertension and heart disease.

Yet, stress is a fact of life. Even a positive experience like a new job, marriage or house can be a stress-provoking event—because stress is defined as a reaction to any stimulus that upsets our normal functioning. The bad news is we all have to face stress. The good news is, it’s easier than ever to neutralize stress before it takes its toll. The key is to maintain a balance, both mentally and physically, so stress doesn’t upset your equilibrium.

The Chemistry of Stress

First, let’s look at what happens to your body as a result of stress.

Once upon a time, stress was episodic. For instance, if a tiger approached you, your body released stress hormones to help you fight or flee. By the time the encounter was over, the entire stress response had been fully utilized and the body returned to normal.

The Fight-or-Flight Response looks something like this:

  • Pupils dilate to sharpen vision.
  • Heart rate and blood pressure increase to accelerate the delivery of oxygen to fuel the muscles and critical organs.
  • Blood flow is diverted from non-critical areas such as the gastrointestinal tract to the critical areas such as the heart, skeletal muscles and liver.
  • Liver releases glucose and fatty acids into the bloodstream. Glucose is for immediate energy; fat is needed when the fight-or-flight response lasts longer than expected.
  • Bronchial tubes dilate to maximize the exchange of oxygen and carbon dioxide.

Today, however, you may be sitting at a desk or driving your car when the stress mechanism is triggered. The modern response is not to fight or flee, but to gnash your teeth, grip the steering wheel, scream, yell or “stuff it.” Our bodies are in a constant state of “emergency alert,’ and the results can be devastating:

  • Blood pressure rises. Depending on how many stressful situations you encounter, it may stay elevated, damaging the sensitive tubules of your kidneys. Ultimately, kidney function is compromised, which raises your blood pressure even more, which contributes to further kidney damage, which raises blood pressure…
  • Glucose that is dumped into your bloodstream goes unused, so your body has to produce an enormous amount of insulin to handle it. Eventually, this may result in hypoglycemia or diabetes.
  • Fat that is dumped into your blood also goes unused, so it clogs your arteries, leading to cardiovascular disease.
  • If you drink caffeine, the stress hormone cortisol becomes elevated, which can set you up for countless health problems including: poor quality of sleep, impaired immunity and age-related deterioration.
  • The adrenal glands produce or contribute to the production of about 150 hormones—all vital to your health. When they are stressed, they become exhausted. Once the adrenal buffer is gone, you become a prime candidate for asthma, allergy, fibromyalgia, chronic fatigue syndrome and other autoimmune disorders.

Devise a Plan that Works for You

So, how do your live in the 21st century and not let stress affect your health?

First of all, you need a plan to help you deal with tough issues, so you can think more clearly and act from a calm, centered position. That plan should include a good diet, and excellent nutritional support with nutrients that enhance relaxation. Establish a daily routine that includes plenty of quality sleep, exercise and a stress-reducing or relaxation technique. Just keep in mind that even though it’s impossible not to have some stress in your life, you can strengthen and nourish yourself on a daily basis, so that you’re better prepared to deal with the next challenge life has to offer.

16 Stress-busters to nourish your body, mind and soul

Daytime

1) Get proper nutritional support to help stop free radical damage, and eat a balanced diet.

2) Exercise! It lowers stress hormones and gives you more energy. Choose an activity that you enjoy and is appropriate for your age and condition. And do it regularly!

3) Learn a relaxation technique such as meditation or yoga. Research has shown they both lower blood pressure, relieve anxiety, enhance overall health, accelerate weight loss, improve sleep and increase blood levels of DHEA. It also restores your sense of clarity and purpose.

4) Laughter is real medicine. It’s a tension tamer and your body produces endorphins (“feel good”chemicals) when you laugh. Rent a funny movie or play charades.

5) Learn to “let go.” Next time you’re in a traffic jam, instead of getting worked up about something you have no control over, use the time to visualize something you want to happen … or listen to a new book-on-tape.

6) Avoid stimulants such as tobacco, caffeine, sugar or coping-solutions that involve alcohol or drugs. Using a chemical means of reducing your stress leads to addiction and increases your problems.

7) Get outside! A little sunlight every day will enhance your body’s natural rhythms and provide you with vitamin D.

8) Take regular breaks at work. Get up and stretch, roll your neck and make sure you drink at least 8-10 glasses of water a day.

 

Nighttime

9) Wind down earlier in the evening. It’s difficult to fall asleep after working late or watching a suspenseful movie. Relax instead with an inspirational book, soft music and a cup of herbal tea or warm milk.

10) A warm bath helps increase circulation to the skin and relax the muscles. Add a few drops of pine needle essence, oil of eucalyptus, mustard powder or lavender oil for a soothing effect.

11) Take five minutes at the end of each day to prepare for the next. Don’t make long lists. Rather, prioritize. It will help you feel more in control.

12) Go to bed earlier. Research shows that the hours of sleep before 2 a.m. are more rejuvenating than the hours after 2 a.m. Sleeping from 10 p.m. to 5 a.m. will do you more good than sleeping from midnight to 7 a.m.

13) Don’t eat right before bed. Your digestive system won’t get the break it needs, and you won’t feel completely rested in the morning.

14) Cut back on caffeine. If you do consume caffeine, be moderate and try not to consume any after 2pm.

16) Put a sachet filled with lavender flowers under your pillow for sweet dreams.

 

End of life rituals: A final gift of love

faith in handsWaiting for someone to die is like waiting for a new baby to be born. And I’m waiting. . . waiting for my mom to pass. My daughter gave birth last month. . .so I waited anxiously to greet the newborn babe. I was anxious because any number of things can go wrong during a birth. I cried with relief after my daughter pushed out her perfect baby, who entered the world with the wail we expect and cheer.

Now I’m crying because I’m losing my mother, a little bit each day. As her energy fades, her mind fogs over, and her physical form diminishes, I hold onto the last thread of communication that we have. “I love you, Mom.” I tell her over and over again. She hears me, but she doesn’t hear much else because she is severely hearing impaired . . . and her cognition is fading.

A couple of years ago, Mom and I talked about facing the end of her life. I asked her if she had a good life, and she said, “yes.” I asked her if she had regrets, and she said, “yes.” But she didn’t want to talk about that. I told her I would do my best to be with her at the time of her passing. And now I am preparing to go sit by her side and wait until the last breath escapes her lips.

I’m relieved that my brother and I already made the funeral arrangements. At least we won’t have to deal with that when the time comes. I am also relieved that I made arrangements with Chevre Kadisha, the Jewish Sacred Burial Society. Many religions have complex codes of conduct for survivors and very specific rituals and customs that have been carried out for centuries. Harvey Lutske writes in The Book of Jewish Customs that the practices and customs rabbis established for survivors to observe following the death of a loved one help the survivors “cope with their loss, continue with their lives, recover emotionally, pay respect to the dead, and perpetuate the memories of those who have gone before us.”

Final gift of love

My mother’s body will be lovingly washed by a group of women in a ritual called Taharah. This cleansing requires several people because the entire body must be washed and moved from side to side in a specific way according to Jewish law. Afterwards, a huge amount of water is poured over the body and passages are read from the Song of Songs. The people performing the Taharah ask for forgiveness in case they performed some indignity. The body is then dressed in a cotton or linen shroud and put into an unadorned, pine coffin. Typically, someone sits with the body or “met” until internment. This is called sitting Shimira, and it is often done in two-hour shifts around the clock. The person reads psalms or prayers silently or out loud, or meditates while a candle burns continuously at the head of the coffin.

Buddhists also incorporate a cleansing of the body and a vigil into their mourning ritual. Families are often invited to wash the body of their deceased loved one. Washing a corpse enables you to become intimate with death in a way no other thing does. It’s hard work, but it’s an important way to honor the dead, said one Buddhist minister.

Death is the great equalizer

To the question, “What is the value of death?” the Jewish rabbis answered, “If nothing ever died, we, the human race, would not learn how to value time. Life’s finiteness is earmarked, and ended, by death. And learning to face death may be life’s greatest challenge.”

As hard as it is, we can take control and manage the death and dying of our loved ones. We can do things that make sense to us and provide us with comfort. Kim Mooney, the Board President of Conversations on Death, and Director of Community Education for Tru Community Care, Colorado’s first hospice, says, “The more you’re involved in the death and grieving process, the more we’re able to be in touch with that innate place in ourselves that tells us how to live. It’s the fear of death that makes us live. And it’s the terror of death that makes us run from the experiences that will teach us.”

As painful as it is,’ says Mooney, grief work and dealing with the death of a loved one guides how you’re going to live your own life. “We’ve skewed our relationship to death in this society,” she says, “but we can’t walk away from it. If you don’t do the work around it, you will somehow diminish the quality of your life. Grieving is a life-long process. Our lives are a series of gains and losses. Learning how to grieve, and incorporating a loss and moving on is critical to being able to become a mature, spiritual person because it implies an acceptance of what life is.”

I am an expert at grieving because of my many significant losses. But this time will be different because I’m losing my mother, my primary connection to the world. This time it  will be especially painful and profound, and I’m a little scared about facing the final letting go of having a mother and how it will affect me. But death will once again serve as a teacher to remind me that we are here temporarily, and that as my teacher loved to say, “Do not trust the time. Life is short, make it sweet.”

These personalized rituals can provide comfort and ease the intense pain that accompanies grieving:

  • Dressing and washing the deceased
  • Having a meaningful farewell service
  • Honoring the loved one at different times during the year
  • Building memory books
  • Finishing what they didn’t
  • Writing letters to the deceased and writing them back to yourself
  • Donating a toy for the age of a baby or child who died to “Toys for Tots”
  • Deciding what to do with your wedding ring after the death of a spouse
  • Writing a life story

*Segments of this post were originally published in an article I wrote called “Caring for our own at death.” It appeared in the defunct “Nexus : Colorado’s Holistic Journal” (Nov/Dec 1991).

5 Ways to get into the Zen of Caregiving

purity of the zen massageI have caregiver burnout. I cared for my husband, who had Alzheimer’s disease, for 10 years. Before that I flew back and forth from Colorado to Florida whenever one of my parents had a health crisis (which was frequent). My daughter just had a baby, and I’d love to be there for her, but my mother has pneumonia and congestive heart failure. I am torn between helping my daughter and her beautiful, young family, and my elderly failing mother. I am flying to Florida for a few days and then back to Colorado. And I will probably be doing this again in the coming month. I tell myself, “you need to take care of yourself. You need to keep your head above water.” Easier said than done. But I learned a lot during the course of my husband’s illness. I know how important it is to meditate, do yoga, dance and eat and sleep well.

Caregiving is a huge challenge, and it’s very easy to let the responsibility of caring for an ill friend or relative become a yoke around one’s neck. But with practice and mindfulness it can turn into a spiritual practice. How?

  1. When you wake up in the morning let your first thought be, “I’m going to have a great day. It will be filled with joy and laughter, and I will maintain equanimity.” Be grateful for your ability to see, hear, walk, and serve your loved one. Other affirmations that you might like: I will remain calm and present throughout the day. I welcome peace, trust, and acceptance into my life. I’m feeling strong and healthy today. I am a kind, compassionate caregiver.
  2. Instead of reacting with anxiety or impatience to a stressful situation or annoying behavior such as constant complaining, asking the same question repeatedly, pacing up and down the hall, stop and breathe. Take a deep breath and let it out slowly. Do it again, and again. Now stop and ask yourself how you feel? Not too bad. Stretch your arms straight up towards the ceiling. Lower them and do it again, one at a time. Roll your head gently to the right and then to the left, and then slowly in a circle. Look to your right, center and then to the left. Take another deep breath and let it out slowly. Feel your body relax.
  3. Focus on the present. Instead of worrying about taking your loved one to a doctor’s appointment and anticipating how he or she will react or what news you will hear, put your attention on something beautiful—inside your home or out the window. If the sky is blue, appreciate its beauty. Listen to the birds singing and appreciate the miracle of their song. Look at a painting on the wall and really look at the colors, the brush strokes, and the image. Imagine the spark that inspired the artist during the creative process, and let it inspire you to get through the day while maintaining a positive outlook.
  4. Light a candle and have your care partner sit down next to you. Enjoy the glow, letting it calm your nerves. Match your breathing to your care partner’s and find your peace.
  5. Keep a journal. It’s a wonderful, easy way to get your concerns, fears, hopes, and dreams out without relying on your therapist or best friend. Use a writing prompt to get you going such as “I never thought. . . . It’s so hard to . .. “I’ll always remember . . .

These are just a few things that can ease the stress of caregiving. Have courage; find strength from the simple things.

10 Things to Remember if You Love a Person with Dementia

Mother and daughter

Daughter caring for her mother

It’s sometimes hard to love a family member who has dementia or Alzheimer’s disease. People with dementia can be quarrelsome, uncooperative, negative, whiney, belligerent or combative. They might get their nights and days mixed up, pace the floor for hours, wring their hands non-stop, or cry like a baby. They might ask you the same question twenty times in a row, refuse to budge when you need to get them to an appointment, or refuse to eat what you’ve made for dinner.

When the going gets tough, it helps to remember that you love the person who resides inside that body that is tight and tense and inflamed from amyloid plaque that has strangled the neurons and disrupted the neurotransmitters that allow thoughts to flow and emotions to stay even. He or she is the same person you married, the same loving parent who nurtured and guided you, the same sibling you shared holidays and outings with, or the same friend who offered a should to cry on or who helping you move to a new home.

When you’re about to lose it, walk out, or hide in the closet, stop for a moment and remember at least one of these 10 things about the person you lovingly take care of.

People with dementia and Alzheimer’s often feel:

  1. Embarrassed when you say, “ I just told you . . ..” Instead of reminding them that they forgot what you told them a second ago rephrase it, breaking it down into a simple sentence . . . or completely change the subject.
  2. Fearful because they don’t see things spatially the same way we do. Their sense of space is distorted and their vision gets skewed, not because there is something physically wrong with their eyes. But rather, the brain interprets what the eyes see, and when the brain doesn’t work right our perception gets distorted. Two things you can do to help are to put extra lights in dark areas of the living quarters and remove throw rugs in order to reduce falls.
  3. Lonely because they can’t communicate well, or some of their friends have “jumped ship.” Set up times for family or friends to visit or take your loved one on an outing.
  4. Confused because they don’t understand why they can’t drive anymore, or why they can’t go for a walk alone, or why they can’t remember where they live or what their son’s or daughter’s name is.
  5. Angry because the keys to the car have been taken away, or because they get frustrated when they can’t express their feelings or thoughts.
  6. Sad because they can’t read a book or newspaper, or can’t manage to engage in their favorite hobby or sport.
  7. Anxious because they can’t move as fast or get dressed by themselves or put on their shoes easily. Or, because they hear sounds that are disturbing or are bothered by someone else’s behavior.
  8. Nervous because they have lost their sense of balance and feel unsteady on their feet. Or because they don’t like the feel of water on their skin and don’t want to bathe and don’t want to be forced.
  9. Frustrated because they can’t write a check, figure out how much tip to leave, or remember how to use the TV remote control.
  10. Paranoid because they think someone is stealing their money or prized possessions.

When all else fails, take a deep breath and put on some music. It almost always uplifts the spirit—for both the caregiver and the person being cared for.

Please subscribe to my blog for more informative articles like this. Thank you!

Living in the Now

After my husband was diagnosed with Alzheimer’s disease, I cried for a solid month. I’d wake up every hour during the night crying and worrying about the future. Although I never had a full-blown panic attack, I was in a continual state of panic, thinking “What happens when Morris is unable to recognize us? What happens when he can no longer drive? Will I have to put him in a nursing home? Will I have enough money?”

The questions would grip my mind and squeeze tears onto my pillow until I fell into an exhausted sleep. The cycle would repeat all night long. The same fearful thoughts intruded my day, only to be shoved into the background when I managed to write or tend to household chores. I discovered Eckhart Tolle’s book The Power of Now: A Guide to Spiritual Enlightenment, which I credit with saving my sanity. It helped me learn how to stay focused on the present—the here and now. Learning how to stay present enhances how you relate to the person you are caring for, allowing you to create community with that person. The simple act of breathing with someone—of matching your breath to theirs—enables you to create a spiritual connection, or community, with that person.

When your mind starts jumping from fear, stop and breathe. Then think for a moment, “What am I grateful for? How do I feel right now, this second?” Chances are you will calm down and focus on the here and now, and your fear of the future will dissipate, even if just for a little while.

Make time to rejuvenate in a hot bath. Fill it with epsom salt, lavendar oil. Light a candle and turn on some soothing music. Soak away your troubles. . .even if it’s just for a little while.