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.

7 healing soups to help you get through the cold and flu season

fresh soup 1January is National Soup month, and it’s also the month when people get colds and flues. It’s especially important during these cold winter months to support your immune system, get plenty of sleep, and try to maintain an uplifted mood.

Winter soups can warm us, strengthen us, help heal us and protect us from getting sick.  Home-made soup contains fresh ingredients that have more antioxidants, vitamins, minerals, and protein. Canned soups are typically overcooked, high in sodium, and can have additives and preservatives. A big pot of soup will last several days, saving time in the kitchen. It is also an easy-to-eat, easy-to-digest form of nutrition for patients with a chronic illness such as Alzheimer’s, and for those bed-ridden with the flu.

If you’re lucky, your grandmother or mother gave you their delicious soup recipes. Here are some of my favorites for nourishing the body and soul during the cold winter months.

Immune boosting soups

Tomato Vegetable Soup

  • 2 cans whole tomatoes (organic, chopped)
  • 2 onions (sautéed)
  • 6 cloves garlic (pressed and sautéd)
  • 1⁄2 tsp oregano (dried)
  • 1 medium winter squash (peeled and cut into chunks)
  • 1 medium rutabaga (chopped)
  • 1 bunch turnips (chopped greens and roots)
  • 1 pound zucchini (cut into chunks)

Add water to cover and simmer until done. Serve with brown rice or couscous. 

Minestrone

  • 4 tablespoons extra-virgin olive oil, divided
  • 1 medium yellow onion, chopped
  • 2 medium carrots, peeled and chopped
  • 2 medium ribs celery, chopped
  • 2 cups chopped seasonal vegetables (potatoes, yellow squash, zucchini, butternut squash, green beans or peas; whatever you have)
  • 2 cloves garlic, pressed or minced
  • ½ teaspoon dried oregano
  • ½ teaspoon dried thyme
  • 1 large can (28 ounces) diced tomatoes, with their liquid (or 2 small 15-ounce cans)
  • 4 cups (32 ounces) vegetable broth
  • 2 cups water
  • 1 teaspoon fine sea salt
  • 1 bay leaf
  • Pinch of red pepper flakes
  • Freshly ground black pepper
  • 1 cup whole grain orecchiette, elbow or small shell pasta
  • 1 can (15 ounces) Great Northern beans, cannellini beans, or kidney beans rinsed and drained, or 1 ½ cups cooked beans
  • 2 cups baby spinach or 2 cups chopped and carefully washed spinach.
  • Freshly grated Parmesan cheese, for garnishing (optional)

 Heat the oil in a large pot and add the onion, carrots and celery. When the onion is translucent add the chopped seasonal vegetables, garlic, oregano and thyme and cook for about 2 minutes. Next, add the broth, water, salt, bay leaf, pepper flakes, and pepper. Bring to a boil and then lower to simmer and cook for about 15 minutes. Add the beans, cook for an additional 10 minutes. Add the spinach and cook until wilted. Ladle cooked pasta into each bowl and add the soup on top. Do not cook the pasta in the soup because it will eventually turn to mush. Garnish with Parmesan cheese.

Miso Stew

  • 5 cups water
  • 1/2 cup dried quinoa, rinsed
  • 1 onion chopped
  • 4 cloves garlic
  • 1 tsp-sized chunk minced ginger
  • 2 stalks chopped celery
  • 2 carrots chopped
  • 1 cup chopped kale
  • 1/4 cup torn pieces combo/arame/nori seaweed (your choice)
  • 2 eggs (optional)
  • 1/4 cup organic red or white miso
  • 3 tsp toasted sesame oil
  • 1/2 tsp turmeric
  • 1/4 tsp cayenne

Saute onion until soft in 2 tsp of the sesame oil. Add garlic and cook for a few minutes. Bring water, quinoa and carrots to a boil.  Reduce  to medium and add onion, garlic, ginger, celery and seaweed (if it’s a firm variety). Cook for five minutes. Crack eggs into pot and stir gently. When egg is mostly cooked, remove from heat and add kale and any tender seaweed. In a separate bowl mix miso, the remaining sesame oil, turmeric and cayenne. Add a large spoonful of broth (not boiling) and stir until smooth. When pot of soup has cooled enough to touch, add in miso mixture and serve hot. This soup can be reheated but do not boil the miso because this will kill the beneficial enzymes.

Chicken soup (Jewish penicillin)

  • 1 large whole chicken
  • 4 carrots chopped
  • 3 stalks celery chopped
  • 2 medium parsnips chopped
  • 2 medium rutabagas
  • 1 large onion chopped
  • small bunch of fresh dill
  • 2 Tbs salt, or salt to taste

Wash the chicken inside and out, remove any feathers and place in a large pot. Cover the chicken with water. Bring the liquid to a boil, lower the heat, and for the next several minutes, remove any scum that rises to the surface. Add the vegetables and salt.

Cover the pan partially and simmer the soup for 2-1/2 hours or until the chicken meat is very soft when pierced with the tip of a sharp knife. Pour the soup through a strainer or colander into a large bowl or a second pot. Set the chicken and vegetables aside. Remove the fat from the surface of the liquid with a spoon or fat-skimming tool.

For best results, refrigerate the strained soup; when it is cold, the fat will rise to the surface and harden and you can scoop it off. (Refrigerate the vegetables and the chicken separately.) Serve the soup plain or with the vegetables and boned, cut-up chicken.

Ward off the negative effects of stress

Mineral Broth

This broth helps to alkalize the body and warm the system. It also helps counter the negative effects of stress. Have it as a bowl of soup, or sip it throughout the day.

Wash with a scrub brush and cut into 1-inch chunks:

  • 1 medium potato (any variety, raw with skin)
  • 1 cup zucchini
  • 1 cup cabbage
  • 1 cup green beans
  • 2 cups celery cut into strips:
  • 1 cup kale or collard greens
  • 1 cup onion 

Coarsely chop:

  • a small bunch of dill weed
  • 1 clove garlic

Place ingredients in a large pot with a lid. Cover with  water, just to the level of the vegetables and add:

  • 6 slices fresh ginger root
  • 1/4 cup or more seaweed (dulse, nori, wakame, hiziki, kombu)
  • Seasonal greens (kale, mustard, spinach, broccoli)

Bring the water to a boil, then turn down to a simmer, and cover for three to ve hours. Strain the broth with a colander. Let cool before refrigerating or freezing. Will keep in fridge for five to seven days or in the freezer for four months.

Variations:

  • Add cubed sweet potato to soup mix in the beginning of cooking time.
  • Add 1⁄2 tsp. curry 10 minutes before serving for a zesty flavor.

Alleviate joint and inflammation

Bone broth

  • 6 pounds of any kind of bones (beef, chicken, etc.)
  • 3 cups of your favorite vegetables, chopped (carrots, celery, onion, potatoes, etc.)
  • 1 bunch flat parsley
  • 1 bunch fresh thyme
  • 1 head garlic, halved crosswise
  • 2 Bay leaves
  • 1 Tbs vinegar*
  • pepper and salt to taste

Rinse the bones in a large pot with cold water. Drain the water and place the bones back in the pot. Cover with at least 4 inches of cold water and cook over medium-high heat for about 45 minutes until the liquid boils. Reduce heat to medium.

Simmer until broth looks clear, about 1 hour. Skim the fat off occasionally using a ladle. Add the rest of the ingredients and simmer for 2 hours. Skim off fat and discard bits of meat. Then pour the broth through a fine-mesh strainer. Discard the solids. Cool before storing. This broth can be sipped throughout the day. It will keep in the refrigerator for 3 days. It can also be frozen in BPA-free bags, glass jars and BPA-free plastic containers.

* You must add some vinegar to the pot of soup in order to force the calcium in the bones to dissolve from the bones into the soup juice. Just 1 pint of soup can give you as much as 1,000 milligrams of calcium.

Ayurvedic healing soup

This traditional soup is wonderful during times of stress, stomach upset, and any time the appetite is diminished due to sickness or stress.

Kicheree

  • 4 Tbs organic Basmati rice
  • 4 Tbs mung dal or red lentils
  • 4 1/2 cups water (more or less, depending on whether you like it soupy or thick)
  • 2 tsp grated fresh ginger
  • 2 Tbs fresh lemon juice
  • 1 cup assorted veggies cut bite-sized (zucchini, yam, carrot, cauliflower, broccoli, etc.)
  • 1 tsp ground coriander seed
  • 1 tsp ground cumin seed
  • 1/4 tsp turmeric
  • salt and pepper to taste

Combine the rice, dal ginger, veggies and water in pot. Add the spices. Bring to a boil over medium heat; then lower to a simmer for 45-50 minutes. Add water if it gets too thick. Remove from the stove. Add the lemon juice, salt and pepper.

Enjoy!


For more great information about how you can reduce stress, feel happier, more energetic, healthier, deal with issues of grief and depression, and ultimately experience inner peace, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia.   Available on Amazon and at all bookstores that sell quality books.

BarbraCohn__

10 New year requirements for all caregivers

You’re tired, you’re stressed–You and 45 million or so American caregivers. So what are you going to do about it? Don’t say that “I don’t have time to take care of myself.” I’ve been there and done that. But I always promised myself that I was not going to be a martyr and sacrifice my health for my husband’s illness. Because if both of us went done that wasn’t going to serve any purpose, least of all our children. They were barely adults when my husband was in the throes of Alzheimer’s disease. They needed at least one healthy parent. And whether you are taking care of a spouse, parent or child, there are other people in your life who love and need you, not necessarily to take care of them, but to love and support them emotionally.

When you are a caregiver, it’s hard to find the time to go to the gym or even take a shower, somedays. But it’s absolutely vital that you take care of yourself or you will end up getting sick and then who will take care of your loved one? Who will take care of YOU?

Here are 10 easy ways to take the edge off your stress and fatigue so you feel some relief.

  • Say a positive affirmation before you get out of bed. “This day is going to be a good one.” “I am grateful for my friends and family.” “I am healthy and full of energy.” “I am strong and competent.” Say something positive to set the tone of the day.
  • Before you reach for a cup of coffee, drink a glass of hot water with lemon. It hydrates your body and brain, the lemon helps to alkalize the system (yes, it’s counter intuitive), which is usually too acidic, and it helps with regularity.
  • Ask for help! You don’t have to do it all by yourself. No one is going to think badly of you if you take some time for yourself. If your loved one resents your going out, it’s okay. Don’t become a slave to their wishes and rants. If you can’t leave your loved one alone, please ask a neighbor, friend or home care professional to help at least a couple hours a week. Some social service programs provide free respite care.
  • Many cities throughout the U.S. offer volunteer snowbusters (volunteers who will shovel your walk and driveway), fix-it volunteers who will help with easy home repairs, and yard maintenance volunteers.
  • Meet a friend for a chat over coffee. Having a good chat and/or laugh, either via telephone or in person does wonders.
  • Find a walking partner in your neighborhood and try to walk at least once a week (preferably 3 times a week).
  • Put on a CD, vinyl record or the radio and listen to your favorite music. If your care partner is mobile, ask him/her to dance. There is nothing like music or dance to uplift the spirit.
  • Use essential oils to immediately diffuse feelings of sadness, depression, anxiety, etc. Lavender oil is the most frequently used fragrance. You can also try bergamot, grapefruit, lemon, orange, clary sage, geranium, rose, and ylang ylang, frankincense, and myrrh. Put the oil in a diffuser or spray bottle to mist your collar or pillow. Find a fragrance that is pleasing to your care partner. It’ll help him/her also.
  • Take a multi-vitamin mineral supplement to support your overall health, well-being, and immunity.
  • It’s important to get at least 6 hours (preferably 7 or 8) of sleep every night. Of course, this isn’t always possible if you are caring for someone and need to get up at night, or are worried about paying the bills, taking care of the car, getting a new stove, etc. If you can’t get in the hours at night, put your feet up for 10 minutes during the day when your care partner naps. Or take a power nap. It really helps.

Wishing you and your loved ones a healthy, happy New Year! And remember that “this too shall pass.”

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.