Category Archives: dementia

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.

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.

Are you a good candidate for the new Alzheimer’s drug?

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Patient getting an IV infusion

On January 6, 2023, the FDA approved Leqembi, the first drug shown to slow Alzheimer’s. Leqembi (Lecanemab) is manufactured by the Japanese drugmaker Eisai and co-developed by Eisai and Biogen. The drug is for patients with mild or early-stage Alzheimer’s dementia.

How does it work?

Lecanemab is an antibody that removes sticky deposits of the protein amyloid beta from the brain. Leqembi (the brand name in the US) neutralizes the protein and marks it for clearance by the immune system before clumping occurs. The result is fewer beta-amyloid aggregates, or plaques, in the brain, potentially slowing the progress of the disease. Results from a late-stage study showed that the drug reduces the rate of cognitive decline in patients with early Alzheimer’s by 27%.

How is it given?

Leqembi is administered intravenously once every two weeks to patients who have a diagnosis of early or mild Alzheimer’s. During the first 14 weeks of taking the drug, patients must be closely monitored and get brain scans to make sure there is no brain swelling.

What are the risks?

Cerebral edema, also called ARIA-E, is the main risk. It involves the breakdown of the tight endothelial junctions of the blood-brain barrier and results in the accumulation of fluid in the brain. In general, common side effects of ARIA-E include easy bruising/bleeding, numbness/tingling of the hands/feet, unsteadiness, unexplained muscle weakness, vision changes, muscle joint pain, butterfly-shaped rash on the nose and cheeks, symptoms of heart failure (including shortness of breath, swelling ankles/feet, and unusual tiredness. Patients who have chest pain or seizures should get medical help immediately.

Biogen has issued these warnings and precautions: Leqembi can cause amyloid-related imaging abnormalities-edema (ARIA-E) and -hemosiderin deposition (ARIA-H). ARIA-E can be observed with MRI imaging as brain edema or sulcal effusions, and ARIA-H as microhemorrhage and superficial siderosis. ARIA is usually asymptomatic, although serious and life-threatening events, can occur including seizures. They are rare, however.

Reported symptoms associated with ARIA may include headache, confusion, visual changes, dizziness, nausea, and gait difficulty. Focal neurologic deficits may also occur. Symptoms associated with ARIA usually resolve over time.

In one study listed on Biogen’s news release (although it doesn’t say how many patients were treated) 3% of the patients who took the drug had symptomatic ARIA. It resolved itself in 80% of those patients. One patient had a brain hemorrhage after one treatment with the drug. https://investors.biogen.com/news-releases/news-release-details/fda-approves-leqembitm-lecanemab-irmb-under-accelerated-approval

The majority of ARIA-E radiographic events occurred early in treatment (within the first 7 doses), although ARIA can occur at any time and patients can have more than one episode. Other studies have reported that patients taking Leqembi who had brain hemorrhages died. This information is on the Biogen news release, also. https://investors.biogen.com/news-releases/news-release-details/fda-approves-leqembitm-lecanemab-irmb-under-accelerated-approval

Patients who have had a cerebral hemorrhage, aneurysm, brain lesions, stroke, brain contusion, or other brain and vascular pathologies are advised to not take the drug because there is a risk of a brain hemorrhage. Most doctors would not administer the drug in any of these cases.

How much does Leqembi cost?

A year’s treatment will cost about $26,500. Currently, there are few options outside of self-pay. Most of the patients who are potential candidates for the drug are on Medicare, and the Federal program’s coverage is very limited, so far. Patients who can pay out of pocket will be able to start the treatment if they are a good candidate for Leqembi and are able to find a doctor and health care system to work with.

So far, Soleo Health is the sole specialty pharmacy distributor for Leqembi. Soleo Health will distribute Leqembi to provider offices and infusion centers, and administer it across the company’s ambulatory infusion centers nationwide, including those operated by its provider division, Virtis Health. This division offers therapeutic and diagnostic services to people with complex diseases requiring special management.

The company reported that it operates more than 40 infusion centers across the U.S.

Patients treated with Leqembi also can receive support through Soleo Health’s Alzheimer’s disease Therapeutic Care Management Center, or TCMC, whose interdisciplinary staff includes physician specialists, nurse practitioners, registered nurses, therapy-care pharmacists, reimbursement specialists, and patient care ambassadors. The center is supported by the company’s nationwide specialty pharmacies, Soleo Health stated.

More information on Soleo Health’s services for Leqembi and Alzheimer’s disease is available by contacting its Alzheimer’s TCMC at 844-960-9090 or via email at alzheimers@soleohealth.com.

Is it worth the risk?

This is a tough question. If I were in the position of deciding whether to put my loved one on Leqembi I’d have to think long and hard if the risk of their having a brain bleed and possible hemorrhage is worth the possibility of living six months, nine months, or a year or two longer without dementia. On the other hand, it’s too early to know just how beneficial the drug will be. I’d probably not be first in line and would wait a bit to see how much Leqembi is helping and whether Medicare is going to cover at least part of the cost.

Maybe Leqembi will turn out to be the silver bullet we’ve been waiting for, and will totally clear out the amyloid plaques. Now wouldn’t that be fantastic?!

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.

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.

20 ways to make Zooming with a person who has dementia more meaningful

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It’s often difficult to communicate in person with someone who has dementia. If that person lives at a distance, it’s even harder. Using zoom is a great option, especially if someone can assist with the mechanics. But if that person is hard of hearing, seeing, or has aphasia communicating on zoom becomes even more challenging.

Here are some ways that you can connect via zoom so that you feel less guilty about not being there or not being able to communicate the way you wish you could.

Even if your conversation is limited to a minute or two, the person on the other end will appreciate your taking the time to check in with them or to just say “hello.” Your loved one may not be able to speak or hear you, but just seeing your face will provide a bit of comfort.

  • Plan to eat together. Ask the person caring for your loved one to prepare something that you both especially like. Eat together and talk about the flavors, colors, and texture. This may be helpful if your loved one is having eating difficulties. Or, indulge in a special treat such as ice cream. This can be an opportunity to reminisce about going out for ice cream. What are your favorite flavors and where is/was your favorite ice cream parlor?
  • Hold up meaningful photos to the zoom screen. Don’t use words like “remember when. . . .” Instead, talk about the people in the photos and the special events where they were taken. Or talk about what those people are doing now, what they’ve done or where they live, etc.
  • Include your pet, if you have one. Dogs and cats contribute feelings of warmth and may elicit memories that your loved one had if they cared for a pet.
  • If your loved one is still engaged in a hobby such as knitting, fishing, quilting, or woodworking, show some of the items that they used or still use. If they painted a picture that you’ve hung in your house, display it on the screen and talk about how much you like it and why etc. If you both knit, plan a knitting session.
  • Does your loved one enjoy gardening? Bring in a pot of petunias or whatever you have growing in the garden, and talk about the colors, the smells, what you enjoy about gardening, and what they have enjoyed.
  • Do you have a hummingbird feeder hanging on the back porch? Show it on your zoom screen if you have a laptop or tablet.
  • If your loved one played an instrument, or if you play an instrument, use the time to play a recording or the actual instrument.
  • Children love to perform, especially on zoom. Have your child dance, sing or do acrobatics for your loved one. If you don’t have any kids, borrow a neighbor’s. It’ll bring cheer to everyone.
  • If your loved one can hear well, maybe they would enjoy being read to. A poem, an aphorism, a joke, a proverb, a short tale–or even a list of the funny things that kids say–may evoke a smile or chuckle.
  • Do you and your loved one share a love for fashion and jewelry? If they’ve gifted you jewelry, wear it while you’re on zoom and talk about how much you’ve appreciated it throughout the years.
  • If you both like to draw or paint, arrange with the caregiver to provide your loved one with the materials to create something while you’re on zoom together. Choose to create your own piece or not.
  • If you have a second digital device, take your loved one on a tour of a country, city, or art museum.
  • Did your loved one enjoy birding or identifying wildflowers? Find an app on your phone or tablet for birds, flowers, etc., and hold it up to the zoom screen. Some of these apps even contain bird songs.
  • Talk about a trip that you’re planning or have recently gone on. Describe it with sensory images using colors, smells, and sounds. What was the highlight of the trip?
  • Do some simple chair exercises together.
  • Find a copy of their local or hometown newspaper and pick out an event or interesting news item to share.
  • It’s been suggested that instead of looking straight into the camera, it’s better to turn your body sideways to the screen into a supportive stance. Supposedly it opens the other person’s visual field because you’re no longer the dominating object on their screen, and also reduces the otherwise excessive amount of eye contact.https://news.stanford.edu/2021/02/23/four-causes-zoom-fatigue-solutions/
  • Repeat or rephrase the last few words that your loved one says. Their last words can help them keep a fluid conversation. This lets the other person know that you heard what they were saying and helps calm them if they’re in distress.
  • Offer compliments freely. “I like your hair” “You look so good today.” “You’ve always been so good at . . . .” This helps establish the connection and lets the person know they are appreciated.
  • Pray together if your loved one would enjoy that.

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.

Aging and Memory Loss: What’s normal, what’s not, and how to seek help (this article appeared in the Daily Camera’s Aging at Altitude Special Section, spring 2022)

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Most of us have had “senior moments” where we’ve run into a friend and momentarily forget their name. Or we search the house for eyeglasses that are perched on our head. Or we walk in circles trying to locate our car in the mall parking lot. Those forgetful moments are fairly typical of being a member of the 21st century with a headful of thoughts and responsibilities.

Putting the car keys in the refrigerator might be something you do if you’re distracted, but storing a dozen cans of pineapple in the dishwasher, or forgetting how to drive home are not normal memory slips. These types of forgetfulness could be a sign of cognitive impairment or a dementia. But the latest research is showing that if you treat early signs of mental decline, you can slow down and possibly reverse cognitive decline.

Ilene Naomi Rusk, Ph.D. is a neuropsychologist, functional brain health coach, and director of The Healthy Brain Program at the Brain and Behavior Clinic (2523 Broadway #200, Boulder, CO, 303-938-9244). Dr. Rusk acts like a detective to fully understand the root causes of a person’s psychological and brain health issues. Then she works with the patient and a functional medicine team with personalized diagnostics, and treatment or interventions, from brain training to nutrition guidance.

“It’s good for everyone to have baseline neuropsychological testing in mid-life even if you have no memory issues,” says Rusk. Most people think cognition is memory, but it’s much more than that. It’s memory, learning, attention and focus, visual and spatial skills, and how we absorb information, retain it and then share it. Cognition is also how we process things visually, auditorily, and spatially.”

There are different categories of cognitive health versus cognitive impairment that can clue me into whether or not someone is headed towards dementia, says Rusk.

“Subjective Cognitive Impairment (SCI) is when you notice a change in your cognition and think ‘I’m a little different than I used to be’, but other people can’t tell and it wouldn’t show up on a memory test.

“The next category is Mild Cognitive Impairment (MCI). This is when you notice changes in your thinking and people around you may or may not notice changes. With MCI you might also have some challenges on neuropsychological tests that show empirical changes. This is a staging system,” says Rusk. “With MCI there’s a great opportunity to intervene, and we want to intervene as early as possible because once you have Mild Cognitive Impairment it’s easier to slip into dementia,” she adds.

The best thing is to tell your doctor if you have concerns and then go to see someone to get properly assessed.

“I recommend that people go directly to a neuropsychologist or neurologist after they’ve spoken to their family physician to look for root causes. There are so many prevention strategies and a new functional medicine methodology to approach cognitive decline. Functional Medicine practitioners look at blood sugar control, blood pressure, gut health, latent, mold, infections, inflammatory markers, stress, sleep patterns, chronic loneliness, and trauma. These are all important things when looking at modifiable root causes of cognitive impairment,” says Rusk.

“We no longer think that Alzheimer’s is only a disease of the brain. That’s definitely an endpoint,” she says. “Everything from dental health to herpes is being looked at, and the amyloid theory of Alzheimer’s is even being questioned by some people. I see trauma healing and stress reduction as important interventions. Chronic stress affects so much in our physiology and unhealed trauma leaves physiologic imprints.

 It’s also important to know,” she adds, “that 70% of dementias are of the Alzheimer’s type and 30% of dementias fall into other categories such as Frontal Temporal Dementia, Parkinson’s, Lewy Bodies, etc. getting properly diagnosed is very important.

The brain pathology of Alzheimer’s often starts 20 years before there are clinical signs. “A person goes from no dementia to SCI, MCI, early stages of dementia, mild, moderate, and severe stages,” says Rusk. “My goal is prevention, and my favorite thing to do is talk to young people about brain health. If we can intervene early, the decline can be delayed and even sometimes prevented.”

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.

Should you move your loved one to a memory care home?

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Forgetful senior with dementia

Moving my husband to a memory care home was the hardest thing I’ve ever done. But I knew that if I didn’t, I’d pay dearly with my own deteriorating health. After caring for Morris for 8 years, I was stressed and diagnosed with a serious disease. When I asked my doctor what he would do in my situation, he paused before saying “You need to take care of yourself.”

Morris was mostly able to take care of his personal hygiene, with some help in the shower, etc. But he wasn’t able to drive, and he needed help getting dressed. He could feed himself if I put the food in front of him. He still enjoyed watching movies, although I’m sure he couldn’t follow the plot. He liked being taken out to lunch, but he couldn’t read a menu. In other words, he needed a lot of help. I didn’t feel that he was a danger to himself or to me, but I didn’t leave him alone in the house for more than a quick trip to the grocery store. However, I was burned out and had received a diagnosis that no one ever wants to hear — the kind that requires a lot of self-care, rest, and good nutrition.

So I was relieved to learn that our spot on the waiting list at my chosen memory care home was towards the top of the list. And I was especially glad, thanks to my therapist’s advice, that I had looked for a place the previous year so that in case of an emergency I didn’t have to frantically scramble to find a home for my husband . . . a place where I felt confident that the caregivers would treat him with kindness, compassion, and respect.

How do you know when it’s time to move someone to a long-term facility?

Of course, every situation is unique, especially since no two dementia patients or families are alike. Some families consist of an elderly couple who live by themselves with no family nearby. A person with dementia may live on their own. Or an older parent may be looked after by an adult child or grandchild who lives nearby or in another state. But in every case, it’s vital to have safety measures in place. That may involve moving the person with dementia into a family member’s home or into a long-term care facility. Families that have several siblings — adult children of the affected parent — share the caring responsibility by having the parent rotate throughout the year, staying with each child for a few months at a time.

Here are some indications of when it’s time to make that move

  • The caregiver is burned out and stress is affecting his/her mental, emotional, and physical health.
  • When it becomes obvious that the person being cared for is unable to take care of their basic needs.
  • S/he wanders off and doesn’t know how to get back home.
  • S/he is isolated, lonely, and depressed.
  • Your loved one is angry and verbally or physically abusive.
  • S/he has mobility issues and tends to fall.
  • The person with dementia has Sundowner’s syndrome and gets agitated at the end of the day. This is a sign that they are becoming unable to live alone.

Making the decision to move a loved one into a memory care home is one of the hardest decisions you will ever make. Just remember that when you’re a caregiver for someone with dementia, it’s important to take care of yourself, too. Because if you don’t and you get sick, then who will take care of you?

Take the advice of my therapist and start looking for a home where your loved one will be well cared for. Or have a family meeting and make a caregiving plan that suits everyone. Here are a couple of other blogs that may be helpful. https://barbracohn.com/2019/08/03/the-20-most-important-things-to-consider-when-looking-for-a-memory-care-home/

https://barbracohn.com/2013/04/03/is-it-is-it-time-to-move-your-loved-one-to-a-memory-care-home/

Please be gentle with yourself.

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.