Category Archives: Caregiving

Is Palliative Care Right for Your Loved One?

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Woman comforting her unwell husband

When most people think about palliative care, they visualize someone who is suffering from pain, advanced cancer, COPD (congestive heart failure), or another fatal illness. Palliative care is specialized medical care for people also facing serious illnesses like dementia. The goal is to support the patient and the family on all levels, including physical, psychological, and spiritual.

What’s the difference between palliative care and hospice care?

Palliative care aims to ease pain and discomfort, reduce stress, and help patients —and their families— have the highest quality of life possible. Hospice care comes into play when a cure is no longer viable or when the treatment negatively outweighs the benefits. You can have palliative care at any stage of illness, along with other treatments.

Typically, with hospice curative medications or aggressive treatments for a patient’s illness are stopped. But not all medications are stopped. Medications that help relieve pain, nausea, anxiety and help a person breathe are an important part of hospice care.

In an article that appeared in Alzheimer’s TODAY (Volume 19, Number 1), Ann Wyatt, MSW, a leader in palliative care for people with dementia, says that people with dementia express their comfort and discomfort through their actions. It’s the caregiver’s responsibility to figure out the cause of the discomfort and help the person become more comfortable.

But that’s tough because dementia may prevent a person from communicating the source of distress. It’s usually not dementia that causes the distress, says Wyatt. (Although from my experience with my husband, his dementia caused frustration, anger, and irritability.)

Wyatt, says, “Most of the time it means that somebody is in pain or has some other discomfort. Dementia just means they can’t explain what it is.”

In a care facility, a resident might be given an antipsychotic drug to manage or misdirect behaviors that are perceived as aggressive. But the behavior might be a reaction to the person’s discomfort of being in a setting where schedules are instilled to provide efficiency and ease for the staff without considering the individual needs. For instance, a person who finds it hard to get up in the morning may exhibit “difficult behaviors” because they are woken early for breakfast or a shower, when they’d rather sleep in.

A personal anecdote

In my husband’s case, another resident occasionally, and mistakenly, walked into his room thinking it was his. My husband would shove him, and sometimes they got into a physical altercation. The situation was resolved when the other man was moved to the opposite side of the facility. This was a good example of palliative care. The caregivers removed the source of discomfort and stress for both residents (and families) by simply moving one resident to another area.

Simple ways to provide palliative care

  • 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.
  • Play soothing music, and sing.
  • Speak softly.
  • Read to your loved one.
  • Use dimmed lights and/or battery-operated candles.
  • Beautify the environment with flowers.
  • Massage and/or physical touch is a wonderful way to ease everyone’s tension.

Getting palliative care

A palliative care team helps patients and families find ways to improve their quality of life whether that means moving to a skilled nursing facility or getting good home care. To find palliative care in your area visit https://getpalliativecare.org/howtoget/find-a-palliative-care-team/.

Download the free booklet Palliative Care for People with Dementia at caringkindnyc.org for excellent information about a comfort-focused care approach

For dozens more tools and techniques for reducing stress, uplifting mood, supporting your immune system and finding ways to connect on a spiritual and emotional level with the person you care for, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia.

Keep your cool this holiday season and all year long

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The holiday season is stressful for everyone, but especially for caregivers. Here’s a list of my favorite ways to destress any time of the year.

  1. Breathe! When we are stressed, we tend to hold our breath. Take a 5-minute break and sit down in a comfortable chair. Close your eyes and take a deep breath, in and out. Then focus on your breath and watch how your mind quiets down and your muscles relax. Then remember to breathe throughout the day. Whenever you feel yourself getting anxious or tight, take a deep breath and let it go.
  2. Drink water. We’ve heard it a million times but it’s always good to be reminded. Forget about sodas and limit the wine and alcohol. Staying hydrated, especially at this time of year, is vital to supporting the immune system and reducing inflammation. It’s also important to support healthy cognitive function and memory.
  3. Eat walnuts. A daily dose of about 9 whole walnuts or 1 Tbs. walnut oil helps your blood pressure from spiking during stress. Walnuts contain L-arginine, an amino acid that helps relax blood vessels, which in turn helps reduce hypertension.
  4. Drink green tea. L-Theanine is the main chemical constituent in green tea. It is an ideal nutritional aid for stress because it produces alpha-wave activity that leads to deep relaxation and mental alertness. This is especially important because to mitigate stressful situations, it’s important to remain calm and alert. Theanine also stimulates the release of the neurotransmitters GABA, serotonin, and dopamine, which help us feel happy, motivated, and calm. Green tea extract is available as a nutritional supplement, which might be easier and quicker to take, and it’ll save you a lot of trips to the bathroom.
  5. While we’re on the topic of “green,” be sure to eat green leafy vegetables for vitamin B and magnesium, both of which help your body cope with stress.
  6. Two handfuls of cashews (make that a small handful, please; one ounce of cashews contains 157 calories.) provide the equivalent mood-boosting effect as a therapeutic dose of Prozac because they are one of the highest natural sources of tryptophan, the precursor for serotonin, the feel-good neurotransmitter.
  7. Did someone mention dark chocolate? It reduces cortisol, the stress hormone that causes anxiety symptoms. Just a couple of pieces should do the trick.
  8. Walk around the block. Just getting out into fresh air will instantly relieve stress, and moving your body gets your blood pumping and will clear your mind.
  9. Light candles and play relaxing music while you eat. It will change the mood instantly.
  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.
  11. Music is the universal language, and it is also the universal stress reliever. Whether it’s jazz, classical, or hard rock that makes you feel better, by all means, play it loud, play it soft, dance to it, drive to it, go to sleep to it. It will definitely help.
  12. Getting the proper rest is vital to staying healthy and reducing stress. Prepare yourself for a deep night’s sleep by unplugging from electronics at least an hour before bed, taking an Epsom salt bath (put several drops of lavender oil in the water for added relaxation), and making sure the room temperature isn’t too warm.  Good night, sleep tight!

If you, or someone you care about, tend to suffer from stress, anxiety, or depression, these recommendations might just “take the edge off” and improve your quality of life … without the risk of side effects. May the holiday season begin!

Have a safe, healthy, and fun holiday season, and many blessings for a year filled with ease and peace.

For dozens more tools and techniques for reducing stress, uplifting mood, supporting your immune system and finding ways to connect on a spiritual and emotional level with the person you care for, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia.

The 10 things you must do after getting a dementia diagnosis.

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A walk through the park

It’s a shock to receive a dire prognosis. The day I listened to the doctor tell my husband that he had Alzheimer’s remains as one of those pivotal, earth-shaking moments that changed the course of my family’s life.

I’ve been hearing about more and more people, young and old, who are getting an Alzheimer’s diagnosis. It’s okay to cry, to throw a tantrum, and to feel numb. I remember calling my parents in disbelief and saying that my life wasn’t supposed to turn out this way. I was only 48 years old. I lost my spouse at 58. Now at 71, I look back and see how far I’ve come. Ten years of navigating the Alzheimer’s world, taking care of my husband, having him live in a memory care home, and seeing it through until the end, definitely took a toll on me — physically and emotionally. I still tear up when I think about it.

Whether you are the caregiver or the person who has dementia, the important thing to tell yourself is that you will get through this. But there are things you must do — starting today — to help yourself and your loved one(s).

  • Get in touch with your local Alzheimer’s Association. https://www.alz.org/ They are a godsend and do amazing work helping caregivers and people with dementia, and funding research. Check out their education programs such as “Managing Money: A Caregiver’s Guide to Finances” https://training.alz.org/products/4355/managing-money-a-caregivers-guide-to-finances?_gl=1*ec354i*_ga*MTkxNzM3NzMxOS4xNzAzMDk3NDQ5*_ga_9JTEWVX24V*MTcwMzA5NzQ0OC4xLjEuMTcwMzA5NzU4MS4xOC4wLjA. Or, “Living with Alzheimer’s: For People with Alzheimer’s Disease.”
  • Make an appointment with an elder attorney to figure out how to best plan for the future. (http://National Academy of Elder Law Attorneys). As soon as possible, designate who will be your powers of attorney, including durable general power of attorney and medical power of attorney. Put a lot of thought into it. You want to make sure the people you put your trust in are people you know will have your best interests and wishes in mind.
  • Consult with a professional about long-term care Medicaid to see if you qualify and what you might do to qualify if you currently don’t. Making these plans while you or your loved one are still able to is a great gift.
  • Enlist family members and neighbors who you can count on to be helpful. Designate someone as an emergency contact. Share your contact information with them and let them know you might need their help at some point.
  • Share your feelings with your closest friends and family. Don’t do what I did and try to keep the diagnosis a secret. That became a huge stressor for me.
  • Consider adult daycare programs that provide care, companionship, and supervision during the day. To find out more about centers where you live, contact your local aging information and assistance provider or Area Agency on Aging (AAA). For help connecting to these agencies, contact the Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov.
    The National Adult Day Services Association is a good source for general information about adult daycare centers, programs, and associations. Call 1-877-745-1440 or visit http://www.nadsa.org.
  • Schedule a weekly walk with a friend or neighbor. The exercise and socialization will do you good.
  • Remove area rugs from the house and other items that may pose a fall risk. And make sure there is sufficient lighting in the house.
  • Do everything you can to reduce stress. Have a family meeting in which everyone can participate in the sharing of care. It’s important to divvy up tasks because there will be plenty of them in the long, fraught Alzheimer’s journey. Even if someone lives across the country, that person can share the responsibility of calling in prescription drugs, ordering food to be delivered, setting up appointments, etc.
  • Stay engaged in activities that you’ve always enjoyed. Dance, sing in a choir, play an instrument, garden, play a sport or cards. Alzheimer’s and other dementias are not contagious. Enjoy your life the best way you can by staying engaged in your favorite activities for as long as possible.

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Why it’s important to engage folks with dementia in fun activities

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My husband lived in a memory care home for the last two years of his life. He loved to walk around with a Walkman and listen to his favorite music. (This was 15 years ago before earbuds were available, or at least before we knew about them.) Morris had a grin on his face as he listened to Nina Simone and his other favorite singers. It made him happy, and it triggered smiles amongst the caregivers to see him sing and sometimes break into a dance.

But when the TV in the common room blasted negative news or violent or scary movies, the residents responded in kind. Some would act out by yelling, squabbling, or arguing. The atmosphere would instantly change from calm to hyper, and sometimes out of control.

People with dementia are sensitive to the environment, so it’s in their best interest not to be exposed to a loud, scary, or violent movie. It’s also best to refrain from bringing them to a place that’s rowdy or filled with cigarette smoke. It may be hard for your loved one to distinguish between fiction and reality. If a movie, TV show, or news broadcast is about someone dying in a car crash or from a disease, the person with Alzheimer’s may think that someone in their own family is the victim. Or if the story is fiction, the person may think it’s real and get upset. The reaction could result in a flood of tears, anxiety, fear, and/or distress.

Boredom can also lead to stress. If your loved one is bored they may tune out or act out. Try to engage your loved one in a stimulating activity or exercise. Walk around the block or in a park, play catch, or put on some music and dance. Whatever you do, try to have fun.

26 activities that provide entertainment

  • Work together on a jigsaw puzzle with bigger rather than smaller pieces
  • Invite friends or family over for tea
  • Watch a football game or opera — whatever your loved one enjoys
  • Have a Zoom meeting with one or two family members or friends. More than that can cause confusion.
  • Watch a sitcom or favorite movie
  • Listen to music
  • Bake a healthy dessert
  • Carve a pumpkin
  • Make a pie
  • Create greeting cards
  • Play an instrument and sing familiar songs
  • Watch family videos
  • Go for a walk in the woods or around a lake
  • Make a snowman
  • Fill a bird feeder and observe the birds
  • Go to a nature preserve
  • Visit a plant nursery, plant a garden
  • Give a manicure and/or foot massage
  • Look through photo albums
  • Rake leaves
  • Sit on the front porch and sip lemonade or hot chocolate and wave or talk to passersby
  • Go to a dog park and enjoy watching the dogs
  • Play checkers or dominoes
  • Read a favorite book aloud
  • Make a collage with pictures cut from a magazine
  • Pain with watercolors

The weather is typically beautiful in the autumn. Get out and enjoy the leaves!

21 Ways to Ease Traveling with Someone who has Dementia 

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My husband, Morris, loved to travel so much that he memorized plane and train schedules for fun. Until he developed Alzheimer’s, that is. When he was unable to convert dollars into the local currency on our 25th anniversary trip through France and Spain, I realized something was very wrong. He followed me like a puppy dog around Barcelona and was afraid to hop on the subway. I was forced to read maps (not something I’m great at) and choose where to go and what to see, without any input. It was like traveling with a young child. My suspicion that he had Alzheimer’s was confirmed when we returned home.

That winter we went to an all-inclusive resort on the Riviera Maya, south of Cancun, to escape from our new reality. The last-minute get-away helped alleviate the stress of worrying about the future. But I couldn’t totally relax because I quickly learned that you can’t trust someone with dementia to find their way back to an unfamiliar hotel room.

Since he had been an avid lap-pool swimmer, I later took Morris on a quick trip to Glenwood Springs for a soak in the mineral pools. I was concerned that he would have trouble getting dressed in the locker room without my help. My first question to the staff was, “Do you have a family changing room?”

They actually have two, complete with toilet, sink, shower, and fold-down bench. There are also three ADA (American Disabilities Act) accessible rooms in the new restroom facility near the kid’s area at the west end of the property. 

Changing was easy. But Morris was afraid to get into the pool. I later learned that people with Alzheimer’s have difficulty with depth perception and peripheral vision. Their eyes might be healthy, but changes in the brain affect the way they process visual information and alters their perception of the world and how they understand it.

I wish I had known this before our family took a trip to Arches National Park. Morris was terrified as we slowly made our way through the Devil’s Garden. And I became impatient with him, not realizing that he probably felt as though he was about to fall off a cliff.

The good news is that you can travel with someone who has dementia. It’s a bit of a challenge, but it’s doable in the early stages. It just takes more planning, patience, and time. Our family took several fun trips to Hawaii with Morris after his diagnosis. They were even more special than our previous trips because we wanted to enjoy every precious moment together.

21 Tips for Traveling with Someone who has Dementia

It’s inevitable that routines will be disrupted while traveling. Here’s how to make it easier on yourself and the person you are caring for.

  1. Don’t leave home without an ID bracelet or wearable GPS unit that can’t be easily removed by your traveling companion. List the person’s name and your cell number on the ID. If the person can still use a cell phone, make sure your number is the emergency contact.
  2. Keep a current photo of your care recipient with you in case you get separated. And carry a laminated card that briefly explains that they have dementia. Showing this to service people helps to avoid frustration, impatience, confusion, and embarrassment.
  3. Consider staying in a hotel rather than with relatives who may be alarmed by or unfamiliar with dementia symptoms. If there’s any sort of drama in the household, this will only add to everyone’s confusion and frustration.
  4. Let the hotel staff know ahead of time of special needs. Ask for a vase of flowers to be placed in your room. They always seem to freshen up the environment.
  5. Bring an aromatherapy diffuser that plugs into the wall. I like the Vivitest Aromatherapy Diffuser because it diffuses for 6 to 8 hours, and turns off automatically. It’s available here: https://www.amazon.com/dp/B08TQPC4VZ?th=1
  6. Aromatherapy works like magic to allay anxiety. Put a few drops of lavender oil, sage, geranium, rose, or ylang ylang oil on a pillowcase, or handkerchief that you can stick in a shirt pocket, or in a diffuser. Try out different blends before your trip to see what your traveling companion prefers. Essential oils and diffusers are available at natural food stores and online.
  7. Try to avoid noisy, crowded situations that might provoke anxiety, fear, or confusion. Instead, visit tranquil environments such as art museums and galleries, botanical gardens, and special interest museums. If you’re meeting friends or family, picnic in a beautiful park. If children are included, choose a park with a playground.
  8. Have afternoon tea, cookies, and fruit in your hotel room, and allow time for a nap.
  9. Ice cream treats always work when the going gets rough!
  10. If you’re flying, book a direct flight and limit flight time to under four hours.
  11. Pack everything in a light backpack to carry on board, if possible, to avoid waiting at baggage claim. Carry documents and medications with you.
  12. Leave the lace-up shoes at home. Velcro shoes or slip-on shoes are a must.
  13. Most airports have a seating area a few feet from where you pick up your belongings, where you can put yourselves back together.
  14. Just beyond that is a handicapped seating area where you can hitch a ride on an electric cart that brings you to your gate.
  15. Use the family restrooms, rather than the public restrooms. Your traveling companion will appreciate the help.
  16. Take advantage of early boarding.
  17. Bring your own food, snacks, and water. Make sure you don’t bring anything that qualifies as a liquid. That includes yogurt.
  18. Let flight attendants know about special needs. They are more than willing to help.
  19. Don’t worry about your companion getting locked inside the cabin restroom. It is possible to open the door from the outside.
  20. Bring an iPad or headphones for entertainment and relaxation.
  21. Sit back and try to relax!

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: TheCaregiver’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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

15 Ways to Help You Deal with Caregiver Guilt

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You spend countless hours taking care of your loved one and have given up so many things. So why do you still feel guilty about not doing enough? Why do you continue to second-guess yourself?

You may ask yourself 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.

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, and 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 bad 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 as 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 experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Do you resent losing personal time for meeting with friends, exercising, painting, playing an instrument, or traveling? It’s normal and natural to feel like you’re missing out on the things that bring you enjoyment. Try to carve out at least an hour or two a week where you can do whatever you want to do.
  • Do you have unresolved issues that stem from your childhood that get in the way of your feelings for the person you’re caring for now?
  • Are you comparing yourself to other caregivers? For instance, if you’re in a caregiver group you may be in awe of the amount of time another caregiver spends taking care of a spouse or how many hours she sits next to her husband in a memory care home. You are YOU, you’re unique and have different needs, a different history, and a different relationship with the person you’re caring for. Don’t compare yourself with anyone.
  • Do you have past unresolved issues with the person you’re caring for?

Tips for easing guilt

  • Ask yourself what’s bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, 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.
  • Join a support group. Caregivers share many of the same problems and issues. A support group meeting can be a safe place where you will not be judged.
  • 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.

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Online therapeutic activities for people with Alzheimer’s and their caregivers

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Elderly woman and a younger woman work on a jigsaw puzzle.

Are you at your wit’s end trying to find something that your loved one can do that doesn’t require driving to an ice cream parlor or sitting through a movie that you’ve both watched a dozen times?

The Alzheimer’s Federation of America’s Teal Room is a godsend for those who need therapeutic activities that you can enjoy in your own space via a computer or other electronic device.

Developed in 2021 as a free online classroom, the AFA Teal Room offers on-demand recordings of creative arts therapies, musical performances, participatory music sessions and sing-alongs, fitness and movement classes, and art, gardening, and nature programs.

Music videos

  • Sundays with Suzanne is a fun music program that includes songs from Broadway Musicals. In one 30-minute performance, Suzanne sang “Take Me Back to New York” from the musical The New Yorkers by Cole Porter, and “Where or When” written by Rodgers and Hart from the musical Babes in Arms.
  • A brief energetic dance performance by The New York Studio of Irish Step Dance will have everyone in the room tapping their feet.
  • Steven Carl McCasland plays the piano for half-hour concerts including tunes from The Golden Age of Broadway, and Gershwin hits.
  • Anthony Ferrara plays jazz classics such as “Smoke Gets in Your Eyes” on the clarinet.

Art Therapy

Marnie is an art therapist who leads a class starting with a breathing exercise to induce relaxation. She follows this with “scratch word art.” Materials required: black tempera paint, oil pastels or crayons, masking tape, a paintbrush, popsicle sticks, or the back of a paintbrush used for scratching the design. https://vimeo.com/showcase/8568757

A therapeutic activity of the day is also offered such as an art appreciation tour of The Ermitage in Russia.

Tovertafel is an online interactive game company that has games specifically designed for seniors living with dementia. The games can be played individually or in a larger group. Their games are meant to provide cognitive, physical, social, and sensory stimulation for both elderly people and those living with dementia, and to those who care for them.

One of their games called “Leaves” activates players to swipe the swirling leaves off the table and enjoy the rustling sounds. It gives the feeling of being outside and keeps the players’ attention by having them look for lady bugs. https://www.tover.care/us/tovertafel/seniors-dementia?gclid=EAIaIQobChMIwP-Rx6jA_AIVSilMCh3FIAwzEAAYASAAEgJnsfD_BwE

Other one-one-activities

  • Look at family photo albums and pictures of art and nature to prompt conversation.
  • Read a picture book together. Children’s stories can trigger childhood memories.
  • Visit the humane society and play with a dog or cat, if you don’t have one.
  • Plant starter seeds and have your loved one water them and watch them grow into plants that can be put into pots or an in-ground garden in the spring.
  • Make a family tree poster.
    • Work on a jigsaw puzzle.
  • Put some favorite music on and dance together.

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

When surgery is recommended for a person with Alzheimer’s

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Caregiver holding elderly patient’s hand in hospital bed

Surgery is scary for everyone. But when the patient has Alzheimer’s it can be traumatic. Someone with Alzheimer’s may feel frightened and confused by a new environment and by people they don’t know. They may not understand what is happening to them. Their normal routine will inevitably change, as well as their diet. The list goes on and on.

If your loved one’s doctor is recommending surgery, you’ll want to ask a lot of questions because being in a strange environment will likely cause anxiety (although some patients with dementia might enjoy the special attention). And getting general anesthesia can cause dementia to worsen.

A study published on the Fishman Center for Alzheimer’s Research Foundation’s website found that about half of the patients undergoing surgery at the Marques de Valdecilla-IDAL University Hospital in Spain showed declines in cognitive skills after their hospital stays. https://content.iospress.com/articles/journal-of-alzheimers-disease/jad191229 But those who had high levels of beta-amyloid, consistent with an increased risk for Alzheimer’s disease, fared the worst on measures of memory. All the patients were older than 65, and none had dementia before their surgery. https://www.alzinfo.org/articles/prevention/major-surgery-may-accelerate-the-slide-into-alzheimers-disease/

However, Duke University researchers recently found that “in over 100 patients undergoing a wide variety of major surgery types under general anesthesia, we found no correlation between post-operative changes in thinking/memory and in Alzheimer’s disease-related biomarkers in the fluid surrounding the brain and spine . . . This should be a reassuring message to anesthesiologists, surgeons, older surgical patients and their family members,” said lead author of the study Miles Berger, M.D. https://corporate.dukehealth.org/news/no-link-between-cognitive-changes-alzheimers-markers-after-major-surgery

Things to consider

  • Plan a consultation with the doctor to discuss the specifics, and have an honest discussion. Is the surgery absolutely necessary? What might happen if your loved one does not undergo surgery? Will the surgery provide a better quality of life, i.e. reduce pain and increase mobility? Prolong the person’s life? What is the worst-case scenario if they do not undergo surgery? Is there an alternative solution to the problem, i.e. complementary medicines and/or modalities such as acupuncture or biofeedback? Ask if you can record the discussion in order to review it later. Consider getting a second opinion.
  • If your family member plans to go ahead with the surgery, look for a hospital that has adopted the ACS Geriatric Surgery Verification Program. The medical community is starting to recognize that a routine surgery for an adult may be very different for an older patient, especially one who has dementia. The Geriatric Surgery Verification (GSV) Program has 32 surgical standards (two of which are optional) designed to improve surgical care and outcomes for older adults. Optimizing surgical care for older adults is critical, as patients 65 years and older account for more than 40% of all inpatient operations (and increasing).https://www.facs.org/quality-programs/accreditation-and-verification/geriatric-surgery-verification/
  • Before surgery make sure all the legal papers are signed and in order such as a DNR (do not resuscitate), POA (power of attorney), etc., and that you hand over the appropriate signed documents to the medical facility or doctor.
  • If your loved one falls and breaks a hip, or is injured in an accident, you will have to make swift decisions. Keep a copy of the important documents mentioned above in your glove compartment. Be prepared for the patient to experience “delirium” afterward. This is common among people with Alzheimer’s who need general anesthesia. Stay calm. There’s a good chance the patient will recover and revert back to their usual state. However, as mentioned above, 50% of older patients who undergo surgery show cognitive decline afterward.
  • If the surgery is pre-scheduled do everything you can to make the hospital experience as easy as possible. Bring favorite “toys”, music, clothing, foods, etc. Have someone who is comfortable with the patient, and whom the patient is comfortable with, stay overnight, if possible.

Patient delirium

Delirium after surgery is common for older people and those with Alzheimer’s disease. It’s a byproduct of anesthesia and the stress of being in an unfamiliar environment where there’s a steady flow of nurses and care providers coming in and out of the room. Remind the nurses to introduce themselves when they come in to care for your loved one. This will help make the experience less stressful.

Your loved one may not remember that they had surgery. Let them know what it was for and that they’ll get better. Tell them where they are, who will visit or already visited, and how long they will be in the hospital.

Try to distract your loved one if they don’t understand what is going on, and if they try to get out of bed. If they normally watch TV, watch it together. Put on their favorite music, or read to them. Aromatherapy essential oils are wonderful for calming down someone with anxiety and agitation.

Aromatherapy

Aromatherapy can be a resource of comfort to you and your care partner by providing an easy, natural way to reduce stress and anxiety and uplift mood. To make sure you are buying a pure essential oil and not synthetic fragrance oil, look for the botanical name of the plant and the phrase “pure essential oil” on the label. Essential oils can be used in a wide variety of ways, but the most common methods are by inhalation or topical use, such as lotion, body oil, or in a bath. My favorite method which I used for my husband is an electric micro-mist diffuser, and available by mail order or at health food stores. These disperse essential oils into the air in a cool mist or can be gently warmed in a candle-heated aroma lamp that releases the aroma into the air. Another easy way is to add 30-40 drops of essential oils to a 4-ounce water spritz bottle. Favorite oils for reducing stress and anxiety include: lavender, Holy basil, clary sage, geranium, rose, and ylang ylang. Citrus oils uplift the mind and emotions, relieve stress and anxiety, and are useful for appetite support: bergamot, grapefruit, lemon, and orange.

Aromatherapy is also great for caregivers!

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

10 ways for caregivers to reduce holiday stress

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Happy holidays! Thanksgiving is almost here! It’s almost inevitable that most of us feel more stressed during the holiday season. There’s always so much to do if you’re planning to get together with friends and family. And for those who are grieving or alone, the stress can be debilitating. If you’re a caregiver, you’re undoubtedly even more stressed.

The most important thing is to take care of YOU. If you get stressed and exhibit anxiety, those around you are going to feel it. It becomes a vicious cycle. You get stressed, and then the person you care for may get irritable, nervous, or anxious.

Make this your mantra: eat healthily, drink water, take a daily walk, and sleep well. It sounds easy, but how do you do that when your time is limited and you feel stretched in every which way.

Or how do you take care of yourself when you’re so depressed it’s hard to get out of bed? (This is a huge topic that I won’t address here, but you might want to read: Have you tried any of these natural ways to combat depression? https://barbracohn.2018/10/03/have-you-tried-any-of-these-natural-ways-to-combat-depression/

  1. Make a pot of soup that will last several days. Lentil, split pea, vegetable, chicken, butternut squash, and tomato soups are chockful of goodness. See below for a yummy recipe.
  2. Do you really need to drink 8 glasses of water each day? According to an article that recently appeared in the New York Times, the answer is no. It depends on a lot of things: how big you are, how active you are, and how much liquid you’re getting through foods and other drinks such as tea and coffee. I had always thought that caffeinated tea and coffee dehydrate you. But according to this article they don’t. Juicy fruits such as oranges, melons, and pears (not to mention summer fruits), contribute water to your total intake. Just make sure that you’re drinking enough so that you don’t get to the point where you feel thirsty or where your lips feel dry.
  3. Exercise is vital to overall health and stress reduction. Whether you live in a cold or hot climate, dress appropriately and find at least 15 minutes a day to get outside and walk.
  4. Show your care partner (the person you care for) a bit of extra attention if you’re able to. Take them for a drive to see holiday lights. Have an afternoon tea in a charming café. Visit your care partner’s best friend, or have them come for a visit. Buy a new CD of their favorite music and play it for them. Light candles at dinnertime. Have them help you with decorations, if possible.
  5. Plan a visit from a music therapist or animal-assisted (AAT)therapist, or find out where you might find them visiting facilities.
  6. Aromatherapy can be a resource of comfort to you and your care partner by providing an easy, natural way to reduce stress and anxiety and uplift mood. To make sure you are buying a pure essential oil and not synthetic fragrance oil, look for the botanical name of the plant and the phrase “pure essential oil” on the label. Essential oils can be used in a wide variety of ways, but the most common methods are by inhalation or topical use, such as lotion, body oil, or in a bath. My favorite method which I used for my husband is an electric micro-mist diffuser, and available by mail order or at health food stores. These disperse essential oils into the air in a cool mist or can be gently warmed in a candle-heated aroma lamp that releases the aroma into the air. Another easy way is to add 30-40 drops of essential oils to a 4-ounce water spritz bottle. Favorite oils for reducing stress and anxiety include: lavender, Holy basil, clary sage, geranium, rose, and ylang ylang. Citrus oils uplift the mind and emotions, relieve stress and anxiety, and are useful for appetite support: bergamot, grapefruit, lemon, and orange.
  7. Making art can help you regain a sense of balance. If you’re feeling out of control, and are inclined to create art, set aside a table just for art and make it sacred. Gather your materials and have them easily accessible so that the space is prepared for you to focus on the “now” without a lot of distraction. It’s amazing how making art can melt stress once you get into the creative zone. The same goes for playing an instrument. It doesn’t matter what is going on in the world or how I feel, when I sit down at the piano, everything becomes part of the past and I’m able to enjoy the moment. It actually becomes a meditation.
  8. Speaking of meditation, the buzzword these days is “mindfulness.” There are numerous apps and classes that can teach you how to stay present and act with kindness and compassion. You can also take a meditation class such as Transcendental Meditation, where you learn how to meditate twice a day for 20 minutes. TM has been proven to reduce blood pressure, and help the body recharge by reducing stress. It’s easy and anyone who can think a thought can do it.
  9. Keep it simple. You don’t have to make an elaborate feast (unless you’re a cook and love to do that) to make the holidays special. If you want to make it really easy on yourself, order a meal for the number of people at your table. Grocery stores like Whole Foods provide dinners that are yummy and healthy (and yes, a little expensive). Or make the essentials and buy a pie.
  10. This holiday season stop and smell the flavors and enjoy the little things: a walk in the woods, a new baby’s smile, a toddler’s romp, a new sweater, or a pair of socks. Get out the photo albums and reminisce. Watch funny YouTube videos of animals and children. Watch a comedy together. Borrow your neighbor’s dog to take on a walk. Walk in the snow (please wear treaded boots so you don’t fall). Enjoy the moment because time passes quickly and what’s here this year may not be here next year.

While most families are hoping to get together for the first time in a couple of years due to COVID, it’s important to keep abreast of the latest health and safety directives in your area. The number of COVID cases is on the rise again. Please wear a mask when flying, traveling by train or bus, and when you’re in crowded places such as a grocery store. Get a COVID booster and seasonal flu shot. If you feel sick, please stay home! There’s nothing like exposing your loved ones to an illness and having them get sick to make you feel guilty and everyone stressed.

One of my favorite soup recipes to enjoy throughout the winter

Pasta y Fagioli—a one-pot meal, 4 servings

  • 2 tbsp olive oil
  • 1 large onion, chopped
  • 3 carrots cut into 1/4 inch pieces
  • 2 stalks of celery, cut into 1/4-inch pieces
  • 1 leek, peeled and cut into 1/4-inch pieces (discard the top, tough stalk or keep to use when making vegetable broth)
  • 1 zucchini, cut into 1/4-inch pieces
  • 1 yellow squash, cut into 1/4-inch pieces
  • 2 large garlic cloves, finely chopped
  • Herbs of your choice: basil or thyme
  • 1 28-ounce can of chopped tomatoes
  • 1 quart of stock –vegetable or chicken. Add water if needed to cover the veggies
  • 2 cans of white beans (navy, butter, or cannellini)
  • 8 oz of pasta of your choice
  • salt and pepper to taste
  • Grated parmesan cheese

Heat the oil in a soup pot on medium. Add the onion and cook for about 5 mins., occasionally stirring. Add the other vegetables, until they begin to soften, about 8 minutes. Stir in the garlic, and cook for 2 minutes. Add the broth and tomatoes and their juice.

Separately, cook the amount of pasta you want to put in the soup. Keep the pasta separate or it will turn to mush. Add a serving of pasta to the soup and top with grated cheese. Serve with bread and salad. Delicious!

Happy Thanksgiving!

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How would you rate yourself as a caregiver?

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It’s been 12 years since my husband passed away from younger-onset Alzheimer’s disease. Even now ask myself if I could have done more for him. I still have guilt, even though I saw a therapist for the last three years of his life who said to me, “If a friend were telling you what you’re telling me, what would you say to her?”

I’d tell her, “You’re doing the best that you can.” My therapist nodded his head and reminded me that I was doing the very best that I knew how, and physically was able to.

I was pragmatic and philosophical about my husband’s Alzheimer’s. I was really good about taking him to his doctor appointments and utilizing every complementary healing modality that was available, such as acupuncture, massage, and even some pretty far-out techniques which I don’t even remember the name of. We hired gentle-touch practitioners, psychic healers, and astrologers. You name it. We tried them all. I even bought an expensive stress-reducing massage bed that emits infrared light and has jade balls that massage the spine by riding from the neck to the ankles.

Did these modalities help? I think so. They certainly helped reduce the stress that we both felt. Did they delay the symptoms of Alzheimer’s? Probably not, but my husband outlived his prognosis by two years, according to his doctor, so I have to believe that a good diet, nutritional supplements, and the support of loving friends and family played a huge role.

Yet, still, I think there were a few things I could have done better. I could have worked harder to acknowledge Morris’s reality. By that I mean I could have done a better job of redirecting him when he got anxious or worried. I realize that it’s easier to say this now, more than a decade after he died. But I wish I had more skill and practice in switching the topic from his obsession about having his car keys taken away, or his discomfort when I’d take him for a ride in the car and he’d complain about every bump in the road.

I wish I had shown him more affection by holding his hand or rubbing his shoulders. I actually told him one day at the breakfast table that I could not have an intimate physical relationship with him anymore because I felt more like his mother than his wife. This is a hard thing for me to admit, and I feel so sad that I said this to him. The reason I’m writing it here is to tell you that you don’t have to be 100% honest with what you express to the loved one you are caring for. It’s okay to withhold things because if your loved one has dementia s/he is already having difficulties processing normal everyday activities. There’s no need to get into a deep philosophical discussion or one in which you have to express what you are going through. Create a time and space for that to happen with a dear friend or a therapist.

If you feel guilty or are unsure of whether you’re doing enough ask yourself these questions:

  • 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, and 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 bad 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 experiencing, 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, clergyperson, 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.

I’m still working–on forgiving myself for not being the perfect caregiver. I’m not overwhelmed by it, and I’ve recreated a wonderful, fulfilling life for myself. But I remember my therapist’s words, “You’re doing the best that you can.” I know I did, and that just has to be good enough.

The Alzheimer’s Association offers programs especially designed to benefit people caring for a family member or friend living with dementia by providing more understanding and tools to help navigate the journey. For more information contact 800-272-3900, alz.org.

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: TheCaregiver’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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.