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.

Is your favorite chocolate safe to eat? The good, the bad, and the ugly about chocolate.

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When I was in Mexico I visited a chocolate museum. It’s hard to get through the exhibit without drooling since the rich, sweet odors permeate every room. The last stop before the exit was a large display of chocolate that was for sale. Chocolate made from coarsely ground cacao, sugar, and cinnamon. Chocolate with chile, nuts, and spices, and mole sauce cooked for half a day and filled with more than a dozen spices. The Mexicans know how to make chocolate!

And it’s no wonder. Cacao plants were grown in Mexico 4,000 years ago, and the Olmec, one of the earliest civilizations in Latin America, turned the bitter cacao beans into cocoa, which they drank and used as medicine. Later, the Mayans came up with a brew made of roasted cacao seeds, chilies, water, and cornmeal. The Aztecs used cacao beans as currency and believed that chocolate was a gift from the god Quetzalcoatl. They drank it as a delicious foamy beverage, an aphrodisiac, and as a preparation for war.

When the Spanish arrived, they brought nuts and spices with them. This is where the common practice of adding almonds and cardamom to Mexican chocolate stems from.

So thanks to the Mexicans and Spanish, we have the amazing pleasure of drinking and eating chocolate. In addition to its delectable taste, chocolate offers numerous health benefits. But there’s a big difference between eating dark chocolate and milk chocolate. Dark chocolate has the highest percentage of cocoa solids and cocoa butter, as well as sugar and cocoa bean powder. It also contains flavonoids, plant-based compounds that have anti-inflammatory and antioxidant properties that support immunity. Additionally, it contains magnesium, sulfur, calcium, iron, zinc, copper, potassium, and manganese, which are essential minerals. Dark chocolate also contains epicatechin and gallic acids which support the heart, act as anticarcinogens (anti-cancer), and support brain health and mental clarity.

Milk chocolate contains milk powder, sugar, and a small percentage of cocoa solids and cocoa butter. It has a creamier and sweeter taste. It contains less than 10 percent of cocoa versus the minimum of 35 percent cocoa that dark chocolate contains, which means it doesn’t offer nearly the number of health benefits as dark chocolate.

Nutritionists recommend consuming chocolate products that contain 70% to 80% cocoa. If you just want pure and simple health benefits, forego the chocolate and take raw cacao capsules. Although I definitely wouldn’t recommend giving your sweetheart a bottle of cacao capsules on Valentine’s Day. Indulge in the good-tasting stuff!

If chocolate is so good for you, what’s all the fuss about it containing heavy metals?

Consumer Reports recently created a brouhaha about lead and cadmium found in popular dark chocolate bars. In fact, cadmium and lead were found in all 28 dark chocolate bars that were tested. The levels of both lead and cadmium were highest in: Theo organic pure dark 70% cocoa, Theo organic extra dark pure dark chocolate 85% cocoa, Green & Black’s organic dark chocolate 70% cacao, Trader Joe’s The dark chocolate Lover’s chocolate 85% cacao, and Lily’s extremely dark chocolate 85% cocoa.

The safer choices were: Mast organic dark chocolate 80% cocoa, Ghiradelli intense dark chocolate 86% cacao, Valrhona Albinao dark chocolate 85% cacao, Taza chocolate organic delicious dark chocolate 70% cacao, and Thiradelli intense dark chocolate twilight delight 72% cacao. Click here to find out about other brands and bars: https://www.consumerreports.org/health/food-safety/lead-and-cadmium-in-dark-chocolate-a8480295550/

What’s so terrible about heavy metals?

Regular and long-term exposure to just small amounts of heavy metals can result in a number of health problems. The biggest danger is for pregnant women and young children because the metals can cause developmental problems and even lead to lower IQ. But all adults should be concerned because frequent exposure can result in kidney damage, reproductive problems, hypertension, and immune system suppression.

Dark chocolate contains more heavy metals than milk chocolate because it contains at least 65 percent cacao by weight.

Play it safe.

If you’re addicted to dark chocolate, find a brand that is considered “safer” and contains a lower cacao percentage. Treat dark chocolate as a treat and limit yourself to one ounce, and trade it for milk chocolate half of the days you normally consume it. Don’t assume that organic dark chocolate is safer because it isn’t. Check the Consumer Report list (link is above). And severely limit the amount of dark chocolate that you give young children.

Remind me again why chocolate is good for you.

10 reasons to eat chocolate

  1. Chocolate is an aphrodisiac. Legend has it that the Aztec emperor Montezuma was said to consume large amounts of the cocoa bean to fuel his libido. Today, scientists attribute the aphrodisiac qualities of chocolate to two chemicals: 1) tryptophan, which is a building block of serotonin, a brain chemical involved in sexual arousal. And, 2) phenylethylamine, a stimulant related to amphetamine, that is released in the brain when people fall in love. What about you? Do you experience a heightened sense of arousal after eating dark chocolate?
  2. Chocolate contains good-for-you antioxidants Chocolate comes from the cacao bean, which thrives in hot, rainy climates in South America, Africa and Indonesia. Similar to grapes, the local soil and climate affects the taste of the harvested beans. When you buy a chocolate bar that has the percentage number on the bar wrapper, that represents the weight that comes from the cacao bean content, according to Robert L. Wolke, author of What Einstein Told His Cook: Kitchen Science Explained. The higher the number, the lower the percentage of sugar and the more bitter and complex the flavor, he says. And the higher the number the more antioxidants.
  3. Cacao is rich in essential minerals: magnesium, sulfur, calcium, iron, zinc, copper, potassium and manganese, all essential minerals . . . and antioxidants that support immune health.
  4. Chocolate reduces your risk of Type 2 Diabetes Researchers discovered that the flavanols in chocolate have beneficial effects on insulin resistance, a risk factor for Type 2 diabetes. In a 30-year-long study of 953 men and women from the Maine-Syracuse Longitudinal Study (MSLS), researchers found that the individuals who never or rarely ate chocolate had a significantly higher chance of developing Type 2 diabetes after five years when compared to individuals who ate chocolate more than once a week. Habitual chocolate intake and type 2 diabetes mellitus in the Maine-Syracuse Longitudinal Study: (1975-2010): Prospective observations.
  5. Protects you from heart disease A 2012 report published in the American Journal of Clinical Nutrition found that dark chocolate has a beneficial effect on blood pressure, vascular dilation and cholesterol levels, and can play a role in reducing metabolic precursors that lead to diabetes and eventually to heart disease. However, a study published in October 2016 (John Wiley & Sons, Ltd.) found that out of 32 cocoa product samples analyzed, the cocoa flavanol dose must be about 900 mg or above to decrease blood pressure, and contain 100 mg of epicatechin. So if you want to eat chocolate for health benefits, be sure to check the ingredient label. The aim of the study was to review the effect of cocoa flavanols on cardiovascular health, with emphasis on the doses ingested, and to analyze a range of cocoa products for content of these compounds. PubMed was searched from 2010 to locate systematic reviews (SR) on clinical effects of chocolate consumption.
  6. Supports mental function. A recent analysis of several studies on the effects of cocoa polyphenols on cognition in healthy adults found that they enhanced memory and executive function. https://pubmed.ncbi.nlm.nih.gov/31933112/ In an earlier study carried out by the University of L’Aquila in Italy, 90 elderly participants with mild cognitive impairment (MCI) drank cocoa containing high, medium, or low levels of flavonoids. At the end of the eight-week study, researchers found improvements in motor response, working memory, task switching, and verbal memory in the participants who drank cocoa with a higher flavanol content. (Hypertension, Aug. 14, 2012) Alzheimer’s and dementia patients are especially fond of sweets because the taste of sweetness is the last taste to disappear. Another study that evaluated the effect of cocoa flavonoids on cognitive function, blood pressure control and metabolic function in the elderly also found positive results. https://pubmed.ncbi.nlm.nih.gov/25733639/ So if your loved one has Alzheimer’s or dementia, indulge him/her in chocolate. Just remember not to overdo it and make sure to include good dental hygiene in your loved one’s daily regimen.
  7. Helps you think better after a sleepless night. The next time you have a bad night’s sleep, instead of indulging in a cup of Joe drink hot chocolate. Sleep deprivation is a risk factor for cardiovascular disease, and scientists have found that flavanol-rich chocolate counteracted vascular impairment after sleep deprivation and restored working memory performance. Their theory is that the study’s participants had improved cognitive performance because of the effects of cocoa flavonoids on blood pressure and blood flow.Flavanol-rich chocolate acutely improves arterial function and working memory performance counteracting the effects of sleep deprivation in healthy individuals.
  8. Is good for your gut. Cacao stimulates the production of healthy microbes in the colon.  Studies show that the microbes break down the undigested fiber in the cocoa, creating usable short-chained fatty acids, such as butyric, propionic, and acetic acids. These fatty acids promote the growth of healthy gut bacteria, which strengthens the intestinal barrier and prevents harmful microorganisms and antigens from invading the digestive tract.
  9. May help protect you from cancer. Cacao has the biggest concentration of flavonols ( a class of flavonoids) of all foods per weight. Flavonols contain cancer-protective properties. Studies in humans have shown that flavonol-rich diets are associated with a decrease in cancer risk. One gram of cacao contains over 30 mg of flavonols, and 31 mg a day is ideal. But be careful. Don’t use this as an excuse to eat a bar of dark chocolate every day instead of eating fruits and vegetables, because fruits and veggies offer lots of fiber, vitamins, and minerals that aren’t all found in cacao.
  10. Makes you feel gooood Scientists have discovered why chocolate uplifts your mood. Serotonin is the neurotransmitter responsible for keeping us happy, and cacao stops the amino acid tryptophan from breaking down. Since tryptophan is one of the amino acids that make serotonin this, in turn, limits the breakdown of serotonin. https://pubmed.ncbi.nlm.nih.gov/25733639/

I’m making strawberries dipped in chocolate this Valentine’s Day.

I might even make Chocolate souffle if I’m really feeling indulgent. Substitute coconut sugar or raw sugar, if you like. This recipe is easier than you’d think, so don’t let the word souffle scare you off. It’s well worth the time and little effort it takes.

Chocolate Souffle

Ingredients

  • 1⁄3 cup sugar, plus additional for sprinkling
  • 5 ounces bittersweet chocolate chips
  • 3 large egg yolks, at room temperature
  • 6 large egg whites
  • 1⁄8 tablespoon butter

Directions

  • Preheat oven to 375°F.
  • Measure out sugar, chocolate and separate eggs.
  • Butter soufflé dish entirely and then add sugar (additional) coating the entire dish.
  • Melt chocolate in a double boiler, or directly on the stove.
  • Add yolks to chocolate (this will harden the chocolate so don’t be alarmed).
  • Beat egg whites with a pinch of salt. Slowly add sugar, a little at a time. Beat until egg whites hold stiff peaks.
  • Fold white mixture into chocolate slowly and stir until smooth.
  • Pour into large soufflé dish or 4 ramekins and run the end of your thumb around inside to remove any extra batter.
  • Bake until puffed and crusted on top but still jiggly in center, 20 to 25 minutes.
  • Serve immediately with whipped cream or ice cream.

This recipe has become one of my new favorites.

Chocolate zucchini bread

Ingredients

  • 2 cups grated zucchini
  • 2 eggs
  • 1/2 cup unsweetened applesauce
  • 1/2 cup maple syrup (add 3/4 cup if you like it sweet, I don’t)
  • 1 tsp baking soda
  • 1 tsp baking powder
  • 1/2 tsp salt
  • 1/3 cup unsweetened cocoa or cacao powder
  • 2 cups flour of your choice. I use 1 cup almond meal and 1 cup whole wheat
  • 1/2 cup semi-sweet chocolate chips

Directions

  • Preheat oven to 350 degrees. Spray loaf pan with oil or rub with butter.
  • In a large bowl mix egg, applesauce, maple syrup, baking soda and baking powder, and salt.
  • Add cocoa powder and whisk until well combined.
  • Add flour and mix until combined. Add 1/4 cup of chocolate chips.
  • Pour batter into pan and sprinkle remaining chips on top.
  • Bake 40-50 minutes or until an inserted toothpick comes out clean. Be careful not to hit a melted chocolate chip.
  • Let cool before slicing.

Yay chocolate! Have a very happy Valentine’s Day!

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.

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.

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.

The Benefits of Music Therapy for Dementia (This article appeared in the Daily Camera’s “Aging at Altitude” special insert Oct 2022.)

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Seniors in nursing home making music with rhythm instruments as musical therapy

Years ago, I attended a drumming circle with my husband at the memory care home where he lived. Music therapist John Crowder had the group mimic his rhythmic conga drum-playing as the residents shook gourds.

“You know, we all have a drum right here,” Crowder said, pointing to his heart. Although some of the members of the group were non-verbal, at least half of them seemed to understand exactly what he meant. Throughout the forty-five minute session, several people broke into song, which he used to simultaneously lead the group in singing and music playing.

Music therapy is becoming more widely understood as a valid healthcare profession and method for working with memory care patients and neurologically impaired individuals. Hundreds of studies and documented cases illustrate how music has a positive effect on people with dementia and Alzheimer’s. It’s not unusual for the communication veils to lift after a person with dementia is exposed to a guided music therapy session. Family members find this limited, albeit temporary, period to be extremely meaningful and precious.

Board-certified music therapist Mikayla Findley uses music as a tool to engage the residents at Alta Vita Living in Longmont in drum circles, creative music-making, songwriting, and singing.  “Overtime, in brain diseases there is a degradation of brain matter. Much more than an emotional device, when we listen to music it can become a special neurological tool that enlivens multiple areas of the brain. The physical, emotional, intellectual, physical, and communication centers of the brain become engaged,” she said.

“Depending on the person who is participating in the music, the sense of touch can also be stimulated,” Findley said. “Vibrations can be felt and music can provide not just aural, but a tactile stimulation.”

Since the auditory system is the first system in the brain to fully function before birth, we are exposed to music right from the start. Since people with dementia are often able to retrieve memories from long ago, music is often the catalyst for the emotions that arise, and can sometimes stimulate conversation.

Findley said, “I had a one-to-one experience with a person at a nursing home who was non-verbal and apathetic. She’d babble and vocalize sounds but didn’t speak. I’d use music to communicate with her because we couldn’t communicate verbally. I discovered that she loved drums and in the majority of our sessions, we had a musical call and response on the drums.

“Sometimes I would play the guitar. Eventually, I’d put it down and sing and she would sing the words to “You Are My Sunshine” and “Que Sera Sera.” The woman was extremely vocal and awake with an upright posture during our sessions. She’d say ‘good-bye’ and was more alert for hours afterwards.”

Leonard Bernstein once said, “Music can name the un-nameable and communicate the unknowable.” Music can evoke memories, increase social interaction in people with dementia, and help them form trust with their caregivers. It can act as a stress diffuser, up-lifter, and natural medicine.

Music stirs memories and allows people within a group to enjoy something together. It’s a wonderful way to help people interact, communicate, have fun together, and reduce feelings of loneliness and depression. Soothing music can reduce sundowning in people with Alzheimer’s who experience anxiety, restlessness, and confusion in the evening.

Findley added, “As we outline all these areas of function, we see that music can engage the whole person, which is what makes it such an effective tool.”

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.

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.

How to create a caregiving plan and a personal care agreement

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Estate Plan, Living Will, and Healthcare Power of Attorney documents

Whether your loved one is newly diagnosed or at the end of their life, having a caregiver plan is crucial for determining what needs to be done in order to manage the health and well-being of the patient. It helps reduce panic and stress when a crisis occurs and helps get the patient the help they need in a timely manner. It also gives the caregiver peace of mind knowing that you are in control of things.

What does a caregiver plan look like?

A care plan is a form that summarizes a person’s health conditions and current treatments for their care. A care plan can help reduce emergency room visits, and hospitalizations, and improve medical management for people with chronic health conditions. Care plans also offer supportive resources for the caregiver, helping to reduce your stress. It includes information about:

  • Health conditions
  • Medications
  • Healthcare providers
  • Emergency contacts
  • Caregiver resources

Here’s a template for you to print and fill out. https://www.cdc.gov/aging/caregiving/pdf/Complete-Care-Plan-Form-508.pdf

If you prefer to create your own care plan, be sure to include the following and put it in a folder or 3-ring notebook so you can update it as needed. It’s also a good idea to keep copies of the important documents in your car glove compartment in case you need to get to the hospital quickly.

  • Emergency contacts: name, relationship, and phone numbers
  • A medical power of attorney: name and phone number, including documentation
  • Medical history
  • Family medical history
  • Allergies
  • Current prescription medicines, supplements, and over-the-counter medications including name, dosage, and schedule of administration
  • Physicians: primary care and all specialists listing the name and phone number
  • Advance directives copy
  • DO NOT RESUSCITATE order, if the patient has one
  • Medical insurance cards – private, Medicare and secondary, or Medicaid copies
  • Driver’s license or government-issued ID – copy

What is a personal care agreement?

This is actually an agreement between the person who needs care and the person who is providing care for compensation. It’s typically used in a relationship between the person who needs care and a family member, friend, or professional care person. Here’s a template that you can use. https://www.agingcare.com/documents/personal_care_agreement_agingcare.pdf

The following is adapted from a piece written by K. Gabriel Heiser on the AgingCare website. https://www.agingcare.com/articles/personal-care-agreements-compensate-family-caregivers-181562.htm

Personal care agreements are required to include the following in order to avoid the transfer of money which would be considered a gift by Medicaid:

  • The agreement must be put in writing before the personal care services are provided.
  • The agreement must detail which services are included and which are excluded for the purposes of compensation (e.g. non-medical care only, food shopping and meal preparation, light housekeeping, assistance with daily living activities, transportation to dental, adult day care and medical appointments).
  • The agreement must be signed by the care recipient and the person agreeing to perform the services. If the recipient is unable to sign due to mental or physical incapacity, their power of attorney may sign on their behalf.
  • All signatures on the contractual agreement must be notarized at the time of signing.
  • The agreement must include a contract date.
  • It must specify rates for services that are comparable to the rates charged by commercial care providers located in the same vicinity.
  • How much and when the caregiver will be compensated should be included.

The caregiver must keep an accurate record of which and when services they provide, and a log of payments they receive. This documentation is very important if the care recipient ever needs to file a Medicaid application because it proves that they have given this money in exchange for care services and not given it away to obtain financial eligibility for long-term care covered by Medicaid.

It’s important to check on the payment requirements in your state. These contracts typically require that the care provider are paid on a weekly basis, or a more flexible pay-as-you-go basis. Some states permit lump sum payments to cover future care for the remainder of a care recipient’s lifetime. If you decide on this arrangement, it’s advised that you consult an elder law attorney or legal professional with Medicaid planning expertise.

Resources

Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org
FCA CareNav: https://fca.cacrc.org/login
Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues, and provides assistance in the development of public and private programs for caregivers.

Medicaid
www.medicaid.gov

National Care Planning Council
www.longtermcarelink.net

National Academy of Elder Law Attorneys (NAELA)
For a low-cost 30-minute consultation, contact your local city or county Bar Association.
www.naela.org

Paperwork and related information

101 Law Forms for Personal Use (10th ed., 2016)
Elder Care Agreement
www.nolo.com

Long Term Care Personal Support Services Agreement
Department of Health and Human Services, Office for Family Independence (2011)
www.maine.gov/dhhs/ofi/documents/LTC-Personal-Support-Agreement.pdf

And don’t forget your own needs. Caregivers deal with an enormous amount of stress. Be sure to have a plan to take care of yourself because if you get sick, who will take care of your loved one?

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: 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.

Cataract surgery reduces dementia risk

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It seems that almost all my friends are needing cataract surgery. And that’s probably a good thing. Because studies are indicating that cataracts increase your risk of developing dementia.

What is cataract surgery?

Nine in ten people develop cataracts by the time they’re 65, and an estimated 2 million (mostly older) Americans get cataract surgery every year.

A cataract is an opacification or clouding of the natural lens of the eye. The surgery involves the removal of the lens and replacement with an intraocular lens or artificial replacement for the lens of your eye. It’s considered one of the safest, most effective, and most common procedures performed today.

Research shows a link between vision loss and dementia

A recent study in JAMA Internal Medicine analyzed the relationship between cataract surgery and the risk of developing dementia. The researchers discovered that people who had cataract surgery had a 29 percent lower risk of developing dementia when compared to people who didn’t have the surgery. https://pubmed.ncbi.nlm.nih.gov/34870676/

The research also found that glaucoma did not affect the risk of dementia.

How does cataract removal protect brain health?

  • Cataracts can reduce vision, which may lead to depression. Depression is a risk factor for dementia.
  • One study found that the integrity of the eye is essential for the structure and function of the brain. “Cataract patients often present with accelerated age-related decreases in brain function, but the underlying mechanisms are still unclear.” https://pubmed.ncbi.nlm.nih.gov/29548900/ Vision impairment can lead to reduced sensory input to the brain, and this leads to less brain stimulation and loss of brain function.
  • People who have vision loss may be less engaged in physical activity and social interaction. This can lead to an increased risk of dementia.

Ways to help prevent cataracts

  • Eat a Mediterranean-based diet including foods that are high in vitamin C, vitamin E, lutein and zeaxanthin. Low levels of lutein and zeaxanthin are associated with cataracts, whereas higher levels help to reduce the risk of developing cataracts.
  • Lutein and zeaxanthin are carotenoids and are found in spinach, Swiss chard, kale, parsley, pistachios, green peas, egg yolks, sweet corn, and red grapes. They are best absorbed when eaten with a healthy fat such as olive oil or avocado.
  • Wear sunglasses to protect your eyes from UV rays.
  • Quit smoking. Smoking increases the free radicals superoxide and hydroxyl radicals that damage the lipids and proteins in the eyes. This causes deposits to form on the lens of the eyes and leads to cataract formation.
  • Maintain healthy blood sugar levels. People with diabetes are more likely to develop cataracts.
  • Restrict consumption of alcohol, which can increase the risk of cataracts by increasing the body’s inflammatory response, free radical production in the eyes, and dehydration. Dehydration affects the proteins in the lens of your eyes.
  • Get regular eye exams.

Get more bang for your buck

If your eye doctor is suggesting that you have surgery to remove cataracts, do it sooner than later. Because cataract surgery will not only sharpen your vision, it may very well sharpen your mind.

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.