Is it time to place your loved one on hospice care?

Elderly female hand holding hand of young caregiver at nursing home.Geriatric doctor or geriatrician concept. Doctor physician hand on happy elderly senior patient to comfort in hospital examinationDeciding if it’s time to place a loved one on hospice care is one of the most painful decisions any caregiver will make. After my mom broke her hip, she was put on heavy pain medication. I sat by her side for two weeks and witnessed her hallucinating about bugs flying in the air and seeing dead family members visit her. I thought they were coaxing her to follow them. I believed that she was dying, and her doctor advised me to consider placing her on hospice care. After talking it through with my brother, we agreed that this was the best thing to do.

Well, it ended up not being the best thing. The hospice team was giving her too many meds and my mother was dying from lack of hydration and food because her hospice caregivers were “snowing” her. They gave her too many pain meds and not enough liquids. She slept round the clock and didn’t wake up to eat or drink. When the private caregiver I hired me alerted me to what was going on, I took my other off hospice. She bounced back and lived another couple of years. She never walked again, despite making a whole hearted effort (that’s another story) and welcomed three great grandchildren into the family.

Several years before my mom died, she placed my dad on hospice care. He had an entirely different experience. The hospice team attentively provided care that my mother was incapable of, and he died with dignity.

The day my husband’s doctor suggested that I consider hospice care was a hard one. But I knew that his illness was terminal, and welcomed the extra attention and care that he would receive. At the very end, the loving and tender care that the hospice team showed him and me and my adult children was significant and so appreciated. They provided us with food and beverages, and aromatherapy cream to massage his legs and feet.

Whether your patient has a terminal illness, is getting toward the end of life, or is suffering from acute and painful symptoms, it’s important to know the difference between palliative care and hospice.

Palliative care

Palliative care is an umbrella of comfort and quality of life care which includes hospice care. It isn’t just used at the end of life, but can be very beneficial when the goal is complete healing and cure. Palliative care is not only end-of-life care. It can be used anytime during the course of an illness.

Defined by the National Hospice and Palliative Care Organization, “palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”

The following points characterize palliative care philosophy and delivery:

  • Care is provided and services are coordinated by an interdisciplinary team.
  • Patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs.
  • Services are available concurrently with or independent of curative or life-prolonging care.
  • Patient and family hope for peace and dignity are supported throughout the course of illness, during the dying process, and after death.

Any individual with a serious illness, regardless of life expectancy or prognosis, can receive palliative care. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from these services.

Patients receive the following palliative services in any care setting:

  • pain and symptom management
  • in-person and telephone visits
  • help navigating treatment options
  • advance care planning and referrals to community resources.

Hospice care

Hospice care provides comfort through the end of life when the individual has a terminal prognosis and no further curative treatments are pursued. Hospice care focuses on the pain, symptoms, and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of 6-months or less if the disease runs its natural course. This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.

Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.

It’s important to know that even if someone is placed on hospice care, s/he may be kicked off after the six-month period if their health improves. Sometimes it’s just a matter of that person beginning to eat and gain weight instead of refusing food and losing weight. An individual might go off and on hospice several times.

Patients receive the following services in most care settings including home, hospice facility, skilled nursing facility, long-term care facility, assisted living facility, hospital (inpatient levels of care only), group home:

Pain and symptom management

  • 24-hour on-call service
  • in-person visits
  • medical equipment
  • related medications
  • inpatient care
  • continuous care in the home
  • respite care
  • volunteer services
  • spiritual care
  • bereavement and counseling services

What you need to know about hospice

To initiate the process, a consultation for hospice and/or palliative care is initiated by the primary care physician or specialist, the patient, or a family member. The consultation is important to provide the patient and/or family with the services provided, as well as to verify that the patient qualifies for the services based on their current health status. If the person qualifies and desires the services their care provider issues a medical order. The hospice or palliative care provider then assigns an RN as the case manager who conducts an assessment of the patient. The patient’s needs are identified and a care plan is created.

  • Hospice does NOT provide round-the-clock caregivers.
  • If the patient gets better and gets off hospice care, s/he might re-qualify for services if they are needed in the future.
  • The patient doesn’t have to go off all their medications. For instance, if it’s flu season, and especially if the patient is in a care facility, s/he will probably still get a flu shot to reduce risk of getting sick and getting others sick. If the patient is on quality of life medications, those can be continued, as well as pain management medications. For the patient who has been on thyroid medications for decades, s/he will remain on those medications.
  • If the patient is uncomfortable with the visiting nurse or CNA, who usually provides personal hygiene a couple of times a week, a new visiting nurse health aid can be provided. The nurse coordinates the patient’s care plan so it’s important that the patient is comfortable with this person.
  • Hospice usually provides the following supplies: bed pads, adult diapers, wipes, barrier wipes/paste, non-latex gloves, wheel chairs, commodes, pressure pads, walkers, shower and transfer benches, air mattresses, hospital beds, bedside tray tables.

You will probably have a choice between a non-profit and for-profit hospice. Consult first with Medicare and your additional insurance provider or with Medicaid to see what is covered and which hospice affiliates they recommend. The Medicare Hospice Benefit pays all related costs associated with the care that is related to the terminal prognosis as directed by Centers for Medicare and Medicaid Services (CMS). Most private insurers have a hospice benefit that pays all related costs associated with the care related to the terminal prognosis. In most states Medicaid pays all related costs associated with the care related to the terminal prognosis as directed by CMS. In all cases, there may be some medications, services and/or equipment that are not included in the Medicare, Medicaid or individual’s policy, so don’t assume anything. Always ask.

Please remember that the more help you have in caring for your loved one, the more comfortable it will most likely be for you and your patient. This is usually one situation in which the adage “too many cooks in the kitchen spoil the stew” doesn’t apply. The more people you have on your caregiving team the better. And if your loved one has a terminal illness, the sooner you research hospice and palliative care the better. Don’t wait until an emergency arises and you are in a panic about helping your loved one. Don’t do it alone. Get help.

Blessings to you and your family.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Grief and Relief: When caregiving ends

GedankenCaregiving for a person with dementia is one of the most difficult things anyone will have to do. The pain and suffering is intense, but the rewards are plenty. Even though the person you are caring for cannot express gratitude, on some level they know and appreciate your sacrifice. They are eternally indebted to you. As Lou Gehrig said in his farewell speech, “When you have a wife (caregiver) who has been a tower of strength and shown more courage than you dreamed exists—that’s the finest I know. So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for.”

Kim Mooney, the Board President of Conversations on Death, and Director of Community Education for Tru Community Care, Colorado’s first hospice, has said that as caregivers “the sacrifices you made changed the course of your life. As you once again look at finding a new course, you will over time grieve your loved one and what you let go of or stored away. You will also begin to discover the things you learned from giving so much. As you recognize and honor what you did, it will begin to shape the meaning of your life now. Whatever the challenges ahead in rebuilding, that understanding can give you the strength, commitment, and satisfaction to make your life more meaningful than ever.”

So, what’s next? Stop, take a deep breath, and think about your journey: where you came from, what you did, and how you feel. When my husband’s final health crisis was over and after I buried him, I realized that I hadn’t fully breathed for years and that my body was strangled with tension and fatigue. I had meditated, eaten fairly well (besides the times I was too tired to cook and made a dinner out of popcorn and ice cream), danced, exercised, and practiced yoga. All these things helped keep me calm, and brought me back to my “self.” But being on call for years took its toll. And after it was all over, while ensnared in the tentacles of grieving, I felt relief. Relief that I wouldn’t feel the pain of watching Morris lose yet another function. Relief that I wouldn’t have to fill another prescription or talk to a physician about my husband’s condition. Relief that I didn’t have to travel the 15 miles to visit him in the memory care home, where I’d inevitably get depressed. Relief that I could stay home and not have an obligation other than caring for myself.

And yet, the final letting go of my role as caregiver was uncomfortable and felt strangely similar to sending my children out into the world. How would I define myself if I were no longer a caregiver? How would I fill up the time I had spent caring for my husband for an entire decade, one fifth of my life? Creating a new identity takes time, practice, and patience. And we are told by grief counselors to not rush things. Do not make a major change in your life, such as moving out of the house you’ve lived in for years, or to another state. But day-by-day, it’s okay to acknowledge that we are not the same person who heard the dreaded words from our loved one’s doctor: “You have dementia, most likely of the Alzheimer’s type.”

As caregivers we take a journey through fire and ice and land on solid ground surrounded by calm waters. Then it’s time to swim to shore and get our bearings. Be patient, be kind to yourself, and set out to discover different activities, small and large, that ease you to calmer waters. Here are some ways to help you get there:

  1. Choose at least one healing modality in this book and integrate it into your life. Dance, do yoga, try journaling, find someone to walk with, etc.
  2. Clean out your closets and drawers.
  3. Wash the garage floor and then paint it.
  4. Take a cooking class.
  5. Join a health club or YMCA.
  6. Take a Zumba® fitness class.
  7. Ride your bike.
  8. Join a hiking club.
  9. Learn how to sew or knit.
  10. Serve food at a community table or sort food at a food bank.
  11. Plant a garden.
  12. Play a musical instrument.
  13. Learn a new language.
  14. Travel! Visit friends and family.
  15. Take long nature walks.
  16. Make it a habit to soak in a bath with Epsom salts.
  17. Get a puppy or kitten.
  18. Volunteer at the Humane Society.
  19. Read to elementary school children.
  20. Join a book club.

My journey to calmer waters

My husband’s illness changed the course of my family’s lives in ways that were unexpected, devastating, and empowering. I developed into a strong matriarch and quickly learned how to take charge of my husband’s care, family business, and my children, without the help of my partner. And not having a partner, with whom I would typically make important decisions with, was one of the hardest things of all about being a partner to someone with Alzheimer’s disease.

Not having a partner, with whom I would typically make important decisions, was one of the hardest things of all about being a partner to someone with Alzheimer’s disease. Deciding where and when to place Morris in a memory care home, figuring out how to finance it, and deciding when to enlist the help of hospice were the kinds of decisions I would have discussed with my husband.

I became a compassionate caregiver, not just for Morris, but for other residents of the memory care home where he lived the last two years of his life. I went through a lot—as all caregivers do—but I’ve come through. I’ve recreated my life, and have learned to look forward with hope, wonder, delight, and inspiration after giving so much of myself to the person I vowed to spend my life with.

There are days that go by without my thinking about Morris. After all, it’s been over eight years since he’s been gone. It’s still hard for me to look at family photos because our family was happy, and a link is missing. I know for my children the hardest thing is that their own children are growing up without knowing their grandfather, who would have loved to be a part of their lives. We will always miss him, but our happy memories fill in the gaps, and we honor him eery year on his yahrzeit the anniversary of a Jewish loved one’s death.

I have a new love in my life and grandchildren to enjoy and cherish. I feel good and I am happy! As my beloved teacher Swami Kaleshwar always said, “Life is short, make it sweet.” I will and I do.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

What does end-stage Alzheimer’s and dementia look like?

Brain disease with memory loss due to Dementia and Alzheimer’s illness

Nine years after my husband Morris was diagnosed with Alzheimer’s disease he developed a kidney stone. At that point he was still walking, but shuffling and sometimes losing his balance. He was speaking, although he often didn’t make any sense. He was laughing–sometimes. And he usually knew his family and friends. It was difficult for him to eat and he often didn’t know what he was eating. But mostly he fed himself.

The day he went to the emergency for severe pain from a kidney stone, Morris was propelled on a downward spiral into end-stage Alzheimer’s. He died six weeks later. In just a matter of days my husband lost his ability to walk, toilet, speak and eat by himself. He needed to be lifted out of bed into a wheel chair and spoon fed. The memory care home he had lived in for two years wouldn’t accept him back because he was no longer ambulatory.

Morris was released from the hospital on a Friday afternoon to a rehabilitation center for physical therapy, which attempted to help he walk–which he never did again. At the rehab center he didn’t sleep at night. The floor attendant kept him in a wheel chair in the hall so he wouldn’t get out of bed and fall. They ended up putting his mattress on the floor because he did fall out and required stitches on his forehead. He’d go days without sleep and my son-in-law predicted that the lack of sleep would get him in the end.

I moved Morris back to his original memory care home on the condition that I had to hire outside help. The rehab facility was understaffed and the food provided little nutrition. The first night I left him there I felt as though I was leaving him to the “wolves.”

When I first placed him in the memory care home two years previous to this time, I was promised that my husband could stay there throughout the course of his illness. So if you are planning to place a loved one in a home, read the contract very carefully.  After he was back at the home for a couple weeks I had to move him again because it was costing way too much at this point to pay the monthly bill of $6,000 dollars plus an additional hourly fee for the outside care agency. Morris lived only two more weeks in an end-stage hospice facility. The staff was top notch and compassionate and I’m grateful that I moved him there.

End-stage Alzheimer’s is not pretty.

It includes:

  • incontinence
  • difficulty eating and swallowing
  • loss of speech
  • inability to walk and get out of bed
  • total assistance with personal care
  • not recognizing family members—but not all the time
  • secondary illnesses
  • sleep issues or sleeping most of the time

What can you do?

  1. Make sure you have all your loved one’s legal and financial papers in place well before this stage. (durable power of attorney, will, trust, advance directives, DNR-do not resuscitate, etc., final arrangements-cremation or burial, memorial service, etc.)
  2. Ask family and friends for support, and be specific. Do you need help with yard maintenance or with walking your dog?
  3. Do you need someone to shovel the driveway or sidewalk if you are spending a lot of time with your loved one?
  4. Ask someone at your place of worship to set up a meal-train or to set up a CaringBridge account to keep friends and family abreast of the current situation.
  5. AFA–Alzheimer’s Foundation of America’s licensed social workers are available Monday through Friday, from 9am to 9 pm EST, and Saturdays from 9am to 1pm EST, via AFA’s National Toll-free helpline–866-232-8484. They are also available by e-mail, chat and Skype.
  6. The Alzheimer’s Association Helpline is open 24/7-800-272-3900.
  7. Hospital chaplains console families and help in times of grief and the difficult period of waiting for a loved one to recover or pass.
  8. Hospice offers support to the patient by providing personal services that include bathing, and palliative care. Hospice also offers grief counseling to families.
  9. It is important that as a caregiver you take care of yourself. On days that I was too exhausted to make dinner, I would heat a pan with a bit of olive oil, saute pre-washed spinach, and pour over a couple of eggs for a healthy, quick meal. Protein is important and so are greens that contain the stress-reducing nutrients vitamin B and magnesium. If you have difficulty eating because of nerves and emotions or time limitations, make yourself a protein shake with berries and/or a banana, a scoop of protein powder and liquid of your choice.
  10. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.

Blessings to you, your family and your loved one.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Dealing with a loved one’s things after their death

 

Wohnungsauflösung

I confess. I am attached to my material possessions. It’s very important to me that I live in a beautiful environment and that means being surrounded by beautiful things. I have had the good fortune to inherit lovely things from my deceased in-laws. Their various art collections grace my walls and I enjoy them. But actually, at this stage in my life I would prefer to live more simply in a small, uncluttered home where I don’t need an alarm system to provide peace of mind that my beautiful things will be forever guarded and safe.

Now that my mother has passed away I have more beautiful things. But this time around, as I weathered the storms of her many health crises I was able to think about the things I would like to keep and visualize what it would actually be like to clear out her apartment. I contemplated the reality of having to face the thankless task of going through her top drawer and disposing of her most intimate things: eye glasses, hearing aids, medications, bras, and underwear. I think this exercise helped me to get through the actual tasks required after she died.

Creating a safe space for family

I invited my adult children, my brother’s wife and their daughters, my mother’s sister and husband, and a few cousins to my mother’s apartment the day after she was buried. Since everyone lived at least a thousand miles away, the “farewell party” had to be expedient. Most people were flying home that afternoon.

I asked everyone to browse through the things I had laid out on the couch and the many items, including a collection of paper weight and Lladro figurines, that were displayed in two large glass showcases. Next, we took turns choosing what we would like to take home as a remembrance of our mother, sister, grandmother, and cousin. It worked beautifully because my mother’s family happens to be one of the most “normal” families I know. No one fights, everyone gets a long–usually. And that’s how it went without petty arguing or bickering.

But my mother had a will in which she specifically indicated that I, the only daughter, was to inherit her jewelry. A couple of years before she passed, we went through her jewelry together and picked out pieces for her granddaughters and daughter-in-law. And then I found four small pinky size rings with various precious stones that were perfect for her four little great granddaughters. The will made this task easy.

Many years ago, when my mother-in-law died it wasn’t as easy. One family member got greedy which led to some bitter feelings. The key is to make a plan ahead of time. Encourage your loved ones to designate in a will who they want to inherit valuable and sentimental items.

10 tips for making a difficult, emotional process a little easier

  • Consider how much time you have. Do you need to vacate the apartment or house in one week or one year? Personally, I am glad that I had a time limit of one week. Even though the job was exhausting, I’m glad to have it behind me. Dragging it out month after month would seem to me to be even more exhausting, both physically and emotionally.
  • Get help! My aunt, her daughter and my partner, who stayed with me for the entire week, helped tremendously. I could not have done it without them. After everyone pulled out the items they wanted, it was easy for my helpers to go through things and determine if they could be sold or if they should be donated.
  • Find a non-profit agency such as Goodwill to pick up a truckload of furniture. I was shocked when several very nice pieces of furniture were rejected because of a stain or slight crack. These non-profit groups have become very picky, so be sure to ask on the phone if they will accept imperfect furniture pieces. Set a time for pick-up and ask if the items need to be disassembled before pick-up.
  • Bring miscellaneous items such as pots and pans, dishes, books directly to a non-profit organization in order to clear the space for when the bigger items are picked up, if you have the time and energy.
  • Nursing homes and continuum care facilities sometimes have a “store” on the premises that accepts used items. They often are eager to accept artwork and medical supplies such as wheel chairs, walkers, commodes, etc. If not, give these to someone in need. You might even find a neighbor on the same floor as where your loved one lived.
  • Take photos of photos to save money and space. My parents kept dozens of photo albums from their many trips. I shipped home some albums that included family life cycle events and gatherings. My brother, however, wanted all the travel albums. Instead of spending a fortune on shipping heavy albums, I removed the photos and put them in shoe boxes. My daughter took photos of the special family photos to archive.
  • Keep important papers: insurance policies, birth certificates, car titles, etc.
  • Don’t stop and read every letter or card that you ever sent your loved one. Box them up and bring them home to read when you aren’t as emotional.
  • Do not flush medications down the toilet! They get into the water supply. Boulder County’s website says: Pour liquid medications over cat litter or other absorbent material, and seal it in a plastic bag before placing it in the trash. Fill pill containers with household glue, remove all personal information from the container, and place it in the trash after the glue has dried. Cut trans-dermal patches into small strips, place them in a container, and add glue or mix them with coffee grounds or used cat litter. In some areas, you can bring medications to the fire or police station.
  • Don’t feel guilty about getting rid of stuff. The objects meant a lot to your loved one. But your memories are not contained in the favorite necklace your dad gave to your mom. Your dad’s favorite golf clubs that he won several trophies with don’t hold the same meaning for you. Your spouse’s slippers are old and ratty and it’s time to get rid of them. As we reminisce and go through our loved one’s material possessions, it is a good time to start downsizing our household and to think about our own mortality and how we want to live the rest of our life. The memories of celebrating your loved one’s life will always be held close to your heart. As you go through their items, remember the saying “You can’t take it with you.” It might just help, at least a little.

“Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn 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 AmazonBarbraCohn__

What special item will you keep when your loved one dies?

Green shirt with long sleeves

Of course, I kept the recipe boxes that contain the directions for the foods my mother loved and made for us: noodle kugel, apple pie, Mandelbrot, eggplant Parmesan, and sour cream coffee cake. When I look at her handwritten recipe cards I can almost feel her gentle touch. What is it about someone’s handwriting that seems to reach out and explain exactly how they feel at the moment they wrote the line? If the curve of a letter such as B or C swings too far to the right the person is said to be very generous. If the letters are straight and stiff and lean toward the left, the person is supposedly self-centered. My mother’s handwriting speaks to me of kindness and femininity and I find myself luxuriating in her handwritten notes until my eyes well up with longing for her or even for just a taste of her eggplant or the banging of her pots in the kitchen.

When I was clearing out my mother’s apartment this past August, a mint green, cotton button-down shirt with three-quarter length sleeves begged me to take it home. It looks like my mother in her younger years when she was passionately interested in health matters. Mom was one of the first New Age people to juice carrots, eat granola and take nutritional supplements, and she was overly interested in her friends’ and family member’s health issues. It made perfect sense. She loved the color green, the color associated with health. And green perfectly highlighted her green cat eyes, dark brown hair, and fair complexion.

The cotton green shirt is crumpled now. It rests in the ironing basket where it will stay until I’m able to caress it, iron the wrinkles out, and hang it in a place where I can look at it without weeping for my mother. The green shirt will hide in the bottom of the basket under clothes eager to be worn, until I am ready to wrap myself in it and feel comfort, not the grief that accompanies the inexplicable feeling that a daughter feels when she has lost her first friend, her best cheerleader, and her devoted goddess who implored the moon and stars to enchant her girl’s life. When I finally iron the green shirt, it will hang limply reminding me of the voice that I can hear as clearly as if my mother were standing next to me, reminding me of who I am and where I came from.


“Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn 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 AmazonBarbraCohn__

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

 

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).