You have a dementia diagnosis, now what?

Senior doctor talking with patient and tablet in officeJune is Alzheimer’s & Brain Awareness Month. It’s a good time to have a physical exam, especially if you are worried about your memory not being as sharp as it used to be or if you’re having trouble coping with daily life. If you’ve noticed that someone close to you is showing signs of withdrawal, depression or confusion, please strongly suggest that he or she make an appointment for an exam, too.

Here’s the scenario of how my husband Morris and I received his diagnosis. I’ve provided a list below it to help you tread water when you feel as though you’re drowning.


There were several indications that something was wrong with my husband two years before he was diagnosed. This tall, good-looking man, a graduate of the Wharton School of Business at the University of Pennsylvania, was having trouble calculating how much tip to leave a waitress. When we went to Spain for our twenty-fifth anniversary, Morris couldn’t figure out how much money the hotel would cost in dollars. This man, who once memorized train and airplane schedules without even trying, followed me around the city like a puppy dog as we boarded a subway or bus en route to tourist attractions.

That following fall—our daughter’s last year in high school—Morris couldn’t give directions to a friend who was taking the SAT at the high school my husband had attended in Denver. I got out the map to help him, but he couldn’t read the map. That was the moment I knew something was very wrong. When he left for a road trip to California with our son and forgot his suitcase, I sat on the stairs and cried. I couldn’t deny it any longer. I had a strong suspicion that Morris had Alzheimer’s disease, and although I pleaded with him for two years to see a neurologist, he refused.

Finally, he agreed. The doctor (I’ll call her “Dr. Fitzgerald”) asked Morris why he had come in. “My wife thinks I might have Alzheimer’s disease,” he said.

“You wouldn’t be able to drive here yourself if you had Alzheimer’s,” she replied.

Nonetheless, Dr. Fitzgerald gave Morris the Mini-Mental State Exam (MMSE, a thirty point questionnaire used to screen cognitive impairment), asking questions such as, “What are the year, season, date, day, and month?” and progressing to more difficult questions that included counting backward from one hundred by serial sevens. I don’t know about you, but I’d probably be slow on the draw to count backward by sevens. At least I’d have to stop and think about it before responding. Morris botched up that question, and he wasn’t able to draw the face of a clock either. The concept of time was already an elusive abstraction.

Dr. Fitzgerald ordered a blood work-up to rule out an organic problem such as hypoactive thyroid—which can cause memory problems—and an MRI scan (magnetic resonance imaging) to rule out a brain tumor. To tell you the truth, I was hoping for a brain tumor because at least you can take the bull by the horns and really go at the darn thing with radiation and a scalpel. Well, there was no brain tumor and his blood panel looked just fine.

A week later, just as we were investigating the cost of long-term health insurance, Dr. Fitzgerald called to ask Morris to bring in his wife to the follow-up appointment. I’m sorry to say that one of the biggest mistakes I’ve ever made was to schedule that appointment without first buying long-term care insurance. Once you get a diagnosis such as Alzheimer’s, there’s no way you’re going to qualify for long-term care insurance, which could potentially save a family thousands of dollars in catastrophic health care costs.

In the early afternoon of January 3, 2001, Morris and I sat in a dimly lit exam room on wooden frame chairs with hunter green cushions on the seat and back. He wore a sweater woven from various shades of blue and gray that highlighted his eyes. We waited for the doctor to knock on the door, the way they usually do. Morris didn’t appear nervous; probably because he didn’t think there was anything wrong with him. But my stomach was wound tight from anxiety and my lungs were working hard to expel phlegm. It didn’t help that the stale re-circulated air had a metallic odor of fear that was probably generated by patients who had received bad news.

Dr. Fitzgerald finally came in and sat on Morris’s left. She had cropped hair and spoke in a blunt, choppy cadence that matched her no-nonsense appearance. Without much of an introduction, the doctor asked me a few questions about Morris, speaking as if he were invisible.

“How is his driving?” she asked.

“He tends to get lost driving in familiar neighborhoods,” I responded, noting the twitch in Morris’s right cheek. I felt my lungs squeeze, and a high-pitched wheeze escaped from my chest.

“Here is the Mini-Mental State Exam Morris took the last time we met.”

His drawing of a house looked like a dilapidated mine shaft. Without waiting for a response, Dr. Fitzgerald turned to Morris and said, “You have Alzheimer’s disease.” Morris froze and his face turned white, while I burst out crying.


I hope that if you ever get a diagnosis such as Alzheimer’s, Parkinson’s, vascular dementia or a similar devastating disease, your doctor is compassionate and gentle about the delivery of the news that will forever change your life and the lives of your loved ones. I wrote “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” after caring for my husband for 10 years, in order to help other caregivers feel more confident, happier, healthier, and deal with feelings of guilt and grief.

For hundreds of other caregiving tips, find “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” on AmazonBarnes and Noble, at other fine book stores, and many libraries.

 

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What can and should you do after getting a diagnosis?

It is understandable that you will have many conflicting feelings such as disbelief, anger, depression, sadness, fear, grief, and shock. You may even feel relieved that you finally know why you are not feeling like yourself. It can be helpful to talk about what you’re feeling and thinking rather than to keep things bottled up inside. In addition to talking with people who are close to you, you can contact the Alzheimer’s Association® at 1.800.272.3900.

You don’t have to tell everyone about your diagnosis if you don’t want to. But if you are still working, or if your boss has questioned your work habits, etc., it’s a good idea to inform him or her of your diagnosis, especially since you might be eligible for  Social Security Disability Insurance.

Your health is more important than ever

Just because you receive a diagnosis doesn’t mean you should give up trying to live a healthy life. You probably still have a lot of years ahead of you, so enjoy them as much as you can. Continue to get daily physical exercise such as walking, biking, hiking, dancing, swimming. Eat a Mediterranean based diet that includes lots of fresh veggies, fruits, nuts,  fish, whole grains, avocado and olive oil.

Stay socially connected as much as possible. It’s normal to feel depressed and it’s okay if you don’t feel like “going out” as much as you used to. But it’s important not to isolate yourself. Keep golfing, bowling, playing cards, as much as you can. Continue to meet with friends for lunch or a movie. If you feel the need to talk, make an appointment with a therapist who specializes in helping people with dementia.

Visit museums, spend time with grandchildren, get a pet (if you don’t already have one), attend an Alzheimer’s Association Memory Cafe. The Alzheimer’s Association’s Memory Cafés offer a fun and relaxed way for people living with early-stage memory loss to get connected with one another through social events that promote interaction and companionship. This is a place where the care partner can receive information while connecting and sharing with other people in similar situations.  Keep busy!

 Legal and Financial Planning for the Future

This is the time to start planning for the future. Taking the time to make decisions about matters that will affect your health care and your finances before you are unable to manage them is one of the most important steps you can take for yourself and your family.

There are many legal and financial documents that will help you formalize your plans and wishes such as:

Durable Power of Attorney

In this document you appoint a person you trust to make legal and financial decisions on your behalf, if you become unable to do so for yourself.

Health Care Proxy

In this document you appoint a person to make medical decisions on your behalf, if you become unable to do so for yourself. It’s important that you speak with the person you appoint about the kind of medical care you would or wouldn’t like so that they can carry out your wishes.

Living Will

Some people also want to make a Living Will in addition to having a Health Care Proxy. In this document, you can state your wishes about end-of-life care.

Last Will & Testament

The purpose of this document is to designate how your assets will be distributed after your death. This will must be completed with the assistance of an attorney.

All the best to you and your families. 

With love,

Barbra Cohn

 

 

 

 

 

Love doesn’t conquer all: caregiver resentment and frustration

Senior Couple QuarrellingI recently participated in a caregiver symposium. I spoke to dozens of caregivers who expressed fatigue, frustration, and exasperation. Everyone was stressed and stretched to the limit. I detected little joy. Instead, people appeared resentful. “I didn’t sign up for this,” one man said. Another confided, “I read your book and am taking your advice. I will not let my wife’s illness ruin my life.”

Caregiving only goes one way: it gets harder. And when we don’t really like the person we are caring for or if we feel trapped, it is even more challenging. I was only 48 years old when my beloved husband was diagnosed with Alzheimer’s disease. I knew our lives would never be the same again. . . and they weren’t.

Yes, we had joy. Our young adult children graduated from college and got married. We went on a few trips. We had some funny moments that elicited belly laughs. But the emotions I remember most are the heaviness of grief, despair, depression, guilt, and fear. I didn’t feel resentment, I think, because I have a philosophical outlook that we reap what we sow (as in the law of karma), and that somewhere, somehow in a past life beyond the ethers I had signed up for my caregiving duty. I tried to put on a happy face. But I told my closest friends that I was exhausted and stressed.

I felt shame that after decades of practicing Transcendental Meditation and following a healthy vegetarian lifestyle our lives had come to this. Wasn’t life supposed to be blissful and free of stress? I soon realized that no one gets out of here without going through at least one huge, transformative challenge. Mine was caregiving for my life partner, who was unable to hep me make the big decisions such as finding a smaller house because ours had become unmanageable, or finding a memory care home for him when I wasn’t able to continue physically caring for him.

Guilt? Yes, I still feel guilt even though my therapist often said to me “If a friend told you what you just told me, what would you say to her?”

“I would tell her ‘you are doing the best that you can.'” And I did do the best I could for my husband. I took him to healers and doctors and gave him nutritional supplements that been shown to help support cognition and memory.

But I still feel guilt about running away every chance I got to dance or have lunch with a friend, even though I know I needed the relief time in order to stay healthy and strong so I could carry out my caregiving duties.

When all is said and done, if you are not exactly thrilled about giving countless hours to someone you love or to someone you are obligated to care for because there is no one else, you might as well learn how to be the best caregiver possible. Because when your caregiving is over, you will have another chance to live the life you chose for yourself. So give it your best shot. Here are some ways to ease the burden and to help you feel good about yourself and the person you are caring for.

Lighten the load of caregiving

  • Take care of yourself first. Carve out time every day to go for a walk, do yoga, dance, sing, whatever it takes to help you feel better.
  • Join a support group. I don’t know how I would have maintained my sanity if I hadn’t joined the younger-onset Alzheimer’s support group offered by the Alzheimer’s Association.
  • See a therapist. Mine was a god-send who listened with compassion and gave excellent advice.
  • Sign up for community services such as day programs, senior centers, Meals on Wheels, hotlines, etc.
  • Hire someone to take your “care partner” (the person you care for) out for lunch, to the movies, for a visit to a museum, etc.
  • Ask your friends and neighbors for help mowing the lawn, retrieving the mail, sitting with your “care partner “so you can do errands, etc.
  • Talk to family members and make a plan to share the responsibilities. (more on this in another blog post)
  • Make an appointment with an elder attorney to draw up a contract for you to receive wages, find out how to get social security withheld, etc.
  • Breathe! After I buried my husband I realized that I hadn’t fully breathed in years. I was tight, my lungs were tight and I was holding my breath waiting for the next next emergency to occur.

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Here’s an excerpt from my book  Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia about breath work, including a simple exercise. Follow the directions for breathing in order to release stress and feel more energized.

by Reverend Shanthi Behl (excerpted from Calmer Waters)

Breath work is the first and easiest to start with. We can deliberately extend, shorten, retain, and otherwise direct the air we breathe in a variety of ways in order to guide the prana. Second, is the mechanism of directed attention, also known as our intention. Where our thoughts go, our prana goes. An integrated pranayama practice utilizes both the breath and our focused attention.

When we say we are tired and have no energy, what we are really saying is that our energy is blocked. We need to breathe to live, and how we breathe can profoundly affect our degree of physical well-being; it can regulate our emotions, and it can deplete, sustain, or increase our experience of aliveness. Prana is constantly fluctuating and moving throughout the universe. According to yoga philosophy, it flows throughout the living body in exquisitely determined whirlpools and currents. The wonderment of the yogic system is asana and pranayama practice which allows our innate energy currents to flow as nature intended.

The following instructions are for sitting, but you can practice this exercise while standing in mountain pose.

• Sit up tall, lengthen the spine, and place the feet flat on the floor. Press the feet into the ground, even as you press the top of the head toward the ceiling.

Relax the hands lightly on the lap and release the shoulders down away from the ears.

• Soften the belly muscles. As you breathe in through the nose, lengthen through the crown of the head.

• As you breathe out through the nose, release the shoulders and press your feet into the floor.

• Continue this practice and turn your awareness to sensations along the spinal column. Feel the upward flow as you breathe in and the downward flow as you breathe out. It is perfectly fine if you feel the opposite movement. The important aspect is to tune into a sense of any movement along the spine. You may not initially feel the movement of your energy. However, by first imagining it, you will later actually feel the upward and downward flows of energy along sushumna, the central core of energy.

 

The Truth about Caregiver Guilt

Concept of accusation guilty unhappy businesswoman personCaregivers can often feel guilty when taking care of a terminally ill family member. Am I doing enough? Did I make the right decision? What if… what if…? Here are ways to recognize your feelings, tips for accepting them, and ways to forgive yourself.


For dozens of tools and techniques to help caregivers feel happier, healthier, more confident, deal with feelings of guilt and find inner peace read “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia”

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Some philosophers and psychologists believe guilt is mental and emotional anguish that is culturally imposed on us. Tibetans and Native Americans don’t even have a word for guilt, which might mean that it isn’t a basic human emotion. Yet, Jews and Christians are very adept at feeling guilty over trivial mistakes, as well as serious blunders.

The first time I felt guilt was when my brother was born. I’m two years older than he, and in 1954 the hospital rules didn’t allow siblings to visit newborns. My Uncle Irv placed me on his shoulders so I could see my mother, who waved to me from the window of her hospital room. I was angry with her for leaving me and I refused to look at her. She waved like the beautiful lady in the fancy red car that passed me by in the Memorial Day parade. But I wouldn’t look at her. The memory is a black and white movie that has replayed itself throughout my life, with the film always breaking at the point when I sullenly turn my head away.

For years afterwards, I would awaken in the night feeling guilty that I didn’t look at her. When I was four years old, I fell out of bed onto the wooden floor of the bedroom I shared with my brother because I was having a bad dream. I don’t recall the dream, but I  remember the ache inside my chest that has always been associated with not doing what my mother wanted me, or expected me, to do.

Over the years, up until my early fifties, I’d have a physical sensation that felt like sand paper or grains of sand inside the skin of my hands that would migrate to the skin and muscles of my arms and torso. Sometimes it felt like my arms and hands were paralyzed or had grown in size. It was hard to move, and the uneasiness of guilt was always associated with the sensation. I recently realized that I haven’t felt those sensations in a very long time.

Maybe I lost those sensations because the guilt of my childhood was replaced by the guilt I felt over placing my husband in a memory care home. I could have taken care of him until the end of his life, but I was drowning in misery and I promised myself I wouldn’t sacrifice everything for this illness. I prayed for his release and my relief, and knew that if I had taken care of him until the end, my own health would have suffered.

I tried to help my husband fight Alzheimer’s by bringing him to healers, holy people, and complementary medicine practitioners. I fed him an organic, whole-foods diet and gave him nutritional supplements, in addition to the prescribed pharmaceutical drugs. I ordered Memantine from Europe before it was FDA approved and prescribed as part of the Alzheimer’s drug protocol by U.S. physicians.

I did all this until I finally realized that my husband needed to take the solitary journey of being a victim of Alzheimer’s disease. Some call it fate and others call it karma. Whatever we name it, no matter how much we are loved and in close communion with family and friends, we have to travel the delicate path of life on our own. When we succumb to illness and disease, it becomes especially painful for others to helplessly stand by and watch, after doing everything humanly possible to assist.

There was always one more “magic bullet” for my husband Morris to try, and yet when I felt the possibility of divine intervention weaken, I began to give up hope and let destiny take its course. The first couple of years after Morris’s passing, the guilt—and grief—would unexpectedly grab me, wrapping its tentacles around my chest. It would twist the insides of my stomach, making it impossible to eat. It would swell into a lump in my throat or tighten a band  around my head, destroying my serenity for an hour or two —or an entire day.

Guilt came in layers, piled up like the blankets I tossed from my bed one by one during a cold winter’s night. The blankets came off as my temperature rose and drops of sweat pooled between my breasts. I shook off the feelings of guilt in a similar way when I heard my therapist’s words in the back of my mind reminding me that I did more than I could do; when I remembered that I’m a mere mortal who breaks and cries when I can’t move one more inch beyond the confines of this physical body; when my heart had expanded to the point where it can’t expand anymore, so it has to contract in order to plow through the walls of pain and deal with the guilt.

Why do I still feel guilt? I feel guilt about not being the perfect wife before Morris got sick. This man adored me and I didn’t reciprocate with a passion that matched his. I feel guilt because I’m alive and he’s not. (Survivor’s guilt is commonly felt by those who share in a tragic event in which the cherished partner dies, leaving the other one to live and put back the pieces of the life they once shared.) I feel guilt about the times I could have spent with Morris watching television or taking a walk instead of running out to be with friends or to dance. Feeling guilt for doing anything to get away from his asking me the same question over and over again, or so I wouldn’t have to watch the man who once stood tall and proud, stoop and stumble like a man way beyond his years.

I hear the therapist’s voice in my head asking, “What would you say to someone who just told you all this?” I’d say, “But you did the absolute best that you could do.” And then I feel better. It’s okay. I’m okay. I really did the best I knew how, and Morris lived longer than his prognosis because of it.

Now, almost eight years after his passing, the guilt appears much less frequently. It hovers momentarily like a hummingbird poking its beak into honeysuckle and hollyhock. The guilt is diluted and flavorless like cream that’s been frozen without added fruit or chocolate chips. It’s a color without pigment, a touch without pressure, a sound without notes. The guilt I feel now is background noise; not noticed until I turn off the other sounds in my world or mindlessly drive my car on a dark, damp day, which is unusual in sunny Colorado. The guilt now appears in various shades of dirty white and brown. It doesn’t reach inside my heart with its claw like it used to. The battle is over, and almost, but not quite, won.

Why do you feel guilty?

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel badly about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15 minute walk every day. Get some respite care. Your local  county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate at a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experience, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.

Tips for easing guilt

  • Ask yourself what is bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergy person, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

 

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

 

Lonely? Two easy ways to make meaningful connections that might just help you live longer.

Bringing Back MemoriesBarbraCohn__

“Calmer Waters” contains more great information on how to stay connected, improve your immunity, and reduce stress. Available wherever fine books are sold and on Amazon.

I’m no stranger to loneliness. When I moved cross-country as a college student to a place  that was as foreign to me as if I had time-traveled to a different century, I didn’t know a soul. It didn’t help that I had transferred my second semester sophomore year after everyone had established their group of friends. I’ll never forget the feeling of being alone in the world, not having a friend to confide in or hang out with. Having moved from my hometown where I grew up surrounded by many relatives and a strong support network, I felt like an alien who didn’t know which foods would sustain or poison me. That experience has allowed me to understand what loneliness is and how it can trigger a downward spiral to depression. Now we are hearing from the medical community how devastating this “aloneness” can be.

Studies are showing that loneliness might be a bigger health risk than smoking or obesity. In fact, loneliness and social isolation is considered not just a psychological issue but a medical one that can actually kill you. According to a far-reaching study (meta-analysis of scientific literature on the subject January 1980 to February 2014) conducted by Brigham Young University, social isolation and loneliness is as dangerous to health as smoking 15 cigarettes and drinking six ounces of alcohol a day, and increases one’s likelihood of death by 32%.

Isolation and feeling alone has also been shown to contribute to depression, cognitive decline, the risk of developing Alzheimer’s disease, and poor recovery from illness and surgery.

Two programs that help seniors and caregivers connect on a personal level

Senior Center Without Walls

Senior Center Without Walls is a telephone-based national program that offers free weekly activities, education, friendly conversation, classes, support groups, and presentations  to individuals 60 years or older anywhere in the United States. There are activities occurring throughout the day, every day.

Play a game, write a poem, go on a virtual tour, meditate, share a gratitude, get support, and most importantly, connect and engage with others every day. SCWW is a community consisting of participants, staff, facilitators, presenters, and other volunteers who care about each other and who value being connected. All groups are accessible by phone and many are acessible online.

Katie Wade, program manager, says SCWW offers 75 options. People can join a particular group, call in the same time each week, hear the same voices on a regular basis and make friends. This has a positive impact on their emotional and physical life. “The gratitude activity, which is offered twice a day, is especially popular and well attended,” says Wade. “Participants share something they are grateful for. This allows for an increase in social connectedness. We also have fun and intellectual programs that help individuals feel valued, stimulated and engaged, and sometimes we invite presenters from the outside in.”

Wade points out that Senior Center Without Walls is not just for people with mobility concerns. We get folks who are active, people who are married and individuals in a co-housing situation. Anyone can feel lonely, she says. “We take a survey every year and the results indicate that 85% of our participants feel more intellectually stimulated and  socially connected. And on a daily basis, we get calls of gratitude from participants who say, ‘this program saved my live,'” says Wade.

Senior Center Without Walls is an award-winning program of Episcopal Senior Communities. For more information: SCWW@jtm-esc.org 1-877-797-7299 (also known as 1-877-797-SCWW)

Circle Talk

CircleTalk is a structured conversation program guided by leaders trained to inspire sharing among the participants. It follows a customized curriculum that engages older adults in meaningful conversations through creative activities. Director Deborah Skovron explains that the program is modeled on Rachael Kessler’s Passage Works Institute which works with school districts throughout the United States to teach teacher how to create safe, positive environments in which students are free to experience deep connection to themselves, others, and the world around them.

“Rachael asked me to take the principles of her model and create a program for seniors,” explains Skovron. Now, after eight years of development and refinement, Circle Talk has six programs running at any given time in senior living communities in Boulder, Colorado. A trained leader guides the one-hour circle following the same six steps, says Skovran.

  1. 10-12 people sit in a circle and get name tags.
  2. The group settles down by being led in a brief meditation.
  3. The leader does a warm-up activity asking simple questions such as, “What was your favorite game as a kid?”
  4. Next, the leader connects to the previous week by saying, “Last week we talked about . . .”
  5. The main focus of the week is introduced. A topic might be something like “What’s an important moment in history that helped inform who you are today? i.e. the first man on the moon, the Depression. How did it impact your life?” This leads to questions and conversation.
  6. The leader ends with a ritual such as asking each person to pass a message to the person sitting next to him/her, passing a squeeze, giving a “word” for the week, etc.

“My favorite thing is finding out no matter what age people are, they still require connections to other people and to themselves to remember who they have been. Circle Talk really allows for that opportunity,” says Skovron.

Skovron’s goal is to make Circle Talk available nation-wide. For information about volunteering, becoming a certified leader, donating, or participating in Circle Talk, visit CircleTalk. Circle Talk programs are thoughtfully designed conversation groups. They make it possible to form new relationships, providing a chance for reflection and self expression that many thought were lost to them forever.

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.”

 

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).