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.

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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.