Category Archives: Self care

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.

10 ways for caregivers to reduce holiday stress

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

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

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

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

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

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

One of my favorite soup recipes to enjoy throughout the winter

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

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

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

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

Happy Thanksgiving!

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How would you rate yourself as a caregiver?

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

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

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

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

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

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

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

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, and grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel bad about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15-minute walk every day. Get some respite care. Your local county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate at a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Tips for easing guilt
  • Ask yourself what is bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

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

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

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: TheCaregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

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.

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.

How in the World Will I Pay for Long-term Caregiving?

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Financial planning is an important factor in long-term caregiving.

Having a long-term caregiving plan is a must for family caregivers, especially if their loved one has Alzheimer’s disease or other chronic health conditions. In 2018, the Alzheimer’s Association estimated that the total lifetime cost of care for someone with dementia was  $341,840.

When we placed my husband in a memory care home in 2008, it cost roughly $6,000 a month, which covered a private room and extras like a weekly massage. Everything is more expensive today. The Alzheimer’s Association lists the following median costs for long-term care services in 2021. From what I’ve seen, the costs are typically higher on the East and West Coasts and lower in rural towns, and in the Midwest, the South, and western states.

  • Home care: A paid non-medical home health aide is $24 per hour and $960 per week (40 hours of care).
  • Adult day services: $74 per day.
  • Assisted living facilities: $4,300 per month or $51,600.
  • Private room in a nursing home: $290 per day or $105,850 per year.
  • Semi-private room in a nursing home: $225 per day or $93,075 per year. https://www.genworth.com/aging-and-you/finances/cost-of-care.html

What’s the difference between assisted living and a nursing home?

By the time a person with dementia is ready for a care facility, they need lots of assistance so it’s best to consider a home that offers memory care in a locked-down environment. Locked-down isn’t as bad as it sounds. It just means that the residents can’t leave the facility and wander off and get lost. The exterior doors are locked, but residents are usually free to roam the halls and go in and out of their rooms and living areas.

An assisted living home offers some care such as transportation to doctor appointments and help taking medications. And some offer designated living areas for people with dementia. But generally, residents in assisted living facilities are in fairly good health and are able to take care of their personal needs.

A nursing home provides medical care 24 hours a day. Meals are prepared by the staff, residents usually eat in a dining room, or in their own room, and care is provided ranging from help getting dressed and bathing, to rehabilitation from a fall or bone breakage.

People with dementia and Alzheimer’s disease are usually placed in memory care homes that cater to their particular needs. Memory care homes aren’t exactly nursing homes because not everyone with dementia has another physical illness. But the cost is comparable to that of a nursing home because of the amount of hands-on care that is needed, which includes bathing, brushing teeth and getting dressed, toileting, etc.

Consider respite care

Respite care provides short-term relief for primary caregivers. It can be a life savior when you’re at your wit’s end and “just can’t take it anymore.” There’s no need to feel guilty. All caregivers need a break in order to recharge, destress, and take care of their own needs—which is crucial to staying healthy.

Respite care can be provided at home, in a healthcare facility, or at an adult day center. It can be arranged for a few hours or for several days or weeks. For more information about respite care: https://www.nia.nih.gov/health/what-respite-care, https://archrespite.org/respitelocator

Financial help

As soon as you or a loved one is diagnosed with Alzheimer’s, or other dementia or chronic disease, make an appointment to see an elder attorney. They will inform you of your options and help with long-term planning.

For instance, in Colorado, in 2020, one month in a nursing home costs nearly $9,000. That’s more than $100,000 over the course of a year. Many elderly individuals spend down their life savings on nursing home costs so they can eventually qualify for financial assistance

If both spouses are living, and one of them is healthy, the healthy spouse can be left with little money on which to survive. An elder law attorney can help families avoid this unfortunate, but common, scenario.

The Community Spouse Resource Allowance is useful when there is concern the couple has too many assets to receive financial assistance from Medicaid to pay for long-term care. This particular allowance lets the healthy spouse keep a portion of the joint assets, up to $128,640 in 2020.

Another allowance, the Minimum Monthly Maintenance Needs Allowance, or MMMNA, lets a healthy spouse retain part of their ill spouse’s monthly income. ps://www.robinsonandhenry.com/colorado/estate-planning/medicaid-planning/?utm_term=&utm_campaign=&utm_source=adwords&utm_medium=ppc&hsa_tgt=&hsa_grp=&hsa_src=x&hsa_net=adwords&hsa_mt=&hsa_ver=3&hsa_ad=&hsa_acc=4376139444&hsa_kw=&hsa_cam=14487629423&gclid=Cj0KCQiAhMOMBhDhARIsAPVml-HXnbFv18MpGCumQd7lKb5xGoJ36cvPNwcdGqRFpgnWq63lYsSAYAkaAnCaEALw_wcB

If you plan to hire an elder attorney, please check reviews and ask for referrals for a competent elder attorney. Unfortunately, the elder attorney I hired made a mess of things for me and my family, and I had to hire an additional attorney to straighten things out.

Other options

• Call 800.827. 1000 or visit http://www.va.gov. In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

• Contact your local family and senior services office. They can provide you with information about help in the home, long-term care options, legal support, Medicare and Medicaid, public assistance benefits, services, and programs, guidance, and tips on accessing services, caregiver support training, and more.

• Contact your local Alzheimer’s Association for information about services and support groups. They offer classes for caregiving on everything ranging from financial planning to how to get your loved one to take a shower. https://www.alz.org/

Taking time for yourself

Caregivers get burned out if they don’t take some time off to recharge. And in the worst-case scenarios, caregivers end up being sick and having to be taken care of. If you don’t take care of yourself, who will take care of the person you were lovingly taking care of?

Here are links to a couple of articles I posted on this blog about ways that caregivers can achieve more peace and less stress. https://archrespite.org/respitelocator, https://barbracohn.com/2020/06/23/20-natural-remedies-for-depressed-caregivers-and-everyone-else/

Have a safe, satisfying, and stress-free (as much as possible) Thanksgiving. And please take a little respite time for yourself, even if that entails just walking around the block for 30 minutes.

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 care partner driving you nuts?

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Stressed caregiver

It’s hard to maintain equanimity and patience when your care recipient is constantly repeating him/herself. Of is following you around the house like a puppy dog. Or is accusing you of “stealing” their wallet, or is getting up several times during the night so you’re unable to get the sleep you need for your own health and in order to take care of them without losing your cool.

When I couldn’t handle my husband’s early stage Alzheimer’s behavior, I’d simply leave the house and walk around the block. But as the disease progresses and it isn’t safe to leave your care partner alone in the house, that’s not always possible.

Here are 16 things that might help you keep your sanity, and your care partner’s too. 

  1.  Simplify communication by asking one question at a time. Break down complex ideas, and give only one choice, i.e. when helping your care partner get dressed simply ask “Do you want to wear the blue or green shirt?” Don’t ask open-ended questions. Ask questions with yes or no answers, if possible.
  2. Before speaking, make sure the television, radio, and music are turned off. Look directly in the eyes of your care partner. Use their name and maintain eye contact.
  3.  Provide a gentle physical touch. Just stroking someone’s arm, shoulders or head can reduce agitation.
  4. Put on soothing music. Or, if your care partner loves dance music (Big Band or Rock n/Roll, Latin), turn up the volume and dance!.
  5. Reduce or avoid use of caffeine, sugar, tobacco and alcohol.
  6. Reduce clutter, noise, and the number of visitors.
  7. Bring out the family photo albums to help the person reminisce about happier times. They may not remember what they ate 30 minutes ago, but chances are they will remember special events from the past.
  8. Go for a walk together, or drive to a park where you can sit together and watch children play, or the ducks swim in a pond.
  9. Schedule a relaxing massage for both of you. It will do you good!
  10. Ice cream works like magic. Go for a drive to your favorite ice cream shop.
  11. If your care partner accuses you of stealing their money, let them keep a small
    amount of money in a wallet. When they make an accusation, simply pull out the
    wallet to show them the money is still in there. In case they hide the wallet
    and you’re unable to find it, have a spare one on hand that looks identical to
    the original one.
  12.  If you need to bring your care partner to an appointment, leave plenty of
    extra time for getting dressed, eating, moving from the house to the car, etc.
    If you feel rushed and stressed, they will pick up on your feelings and start
    mirroring them.
  13. Use essential oils to immediately diffuse feelings of sadness, depression, anxiety, etc. Lavender oil is the most frequently used fragrance. You can also try bergamot, grapefruit,
    lemon, orange, clary sage, geranium, rose, and ylang ylang, frankincense, and myrrh. Put the oil in a diffuser or spray bottle to mist your collar or pillow. Find a fragrance that is pleasing to your care partner. It’ll help him/her also.
  14. It’s important to get at least 6 hours (preferably 7 or 8) of sleep every night. Of course, this isn’t always possible if you are caring for someone and need to get up at night, or are worried about paying the bills, taking care of the car, getting a new stove, etc. If you can’t get in the hours at night, put your feet up for 10 minutes during the day when your care partner naps. Or take a power nap. It really helps.
  15. Get help! Hire someone to come in a couple of times a week so you can get out of the house. If your budget doesn’t allow it, contact your county’s area agency on aging or senior care services agency for information about respite care.
  16.  When all else fails, maintain your sense of humor. Towards the end of my husband’s
    10-year Alzheimer’s journey, for some reason, we both shared a lot of
    meaningless laughs, probably because the whole damn journey was so exhausting
    for both us and what else was there to do? I had already shed more tears than I
    had in all the years leading up to the diagnosis.

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 to get siblings to help with the care of a parent

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Family caregiver meeting

Today, June 20, is the longest day and for families in the throes of Alzheimer’s, it probably won’t seem any different than most days. Every day that you spend caring for a loved one whose needs are demanding is the “longest day.” In order to reduce the burden on yourself, it’s imperative that you carve out some “me time” each day. You’ve heard it before, but it is worth repeating: You need to take care of yourself, because if you get sick who will take care of your loved one?

Sharing the care

If you’re caring for a parent, have you had a conversation with your siblings about sharing the responsibility? Family dynamics and unresolved issues can make it harder to get everyone to pitch in. And of course, location makes a huge difference. An adult child who lives nearby the parent needing help, typically bears the brunt of the responsibility. In fact, a study done by the National Health and Aging Trends (2011-2017) found that three quarters of older adults reported receiving help from only one child.

In order to avoid resentment, divvy up the tasks.

Here’s how

  1. Have a family meeting. If there already is conflict and disagreement among siblings, find a professional to facilitate the meeting in a neutral place, such as a library meeting room, a church, mosque, temple, or synagogue, etc. If the parent being cared for wants to be included and is cognitively aware, include them.
  2. Introduce the purpose of the meeting and have an agenda. Begin with facts such a “Mom or Dad needs full-time care.” Or, “it’s time to move Mom or Dad to a memory care because she/he needs more care than I can provide.” Or, “Mom or Dad is still able to stay at home, but needs assistance. How can each of us help?”
  3. To clarify the situation, maybe include a doctor or nurse explain the medical issues and forecast what the future will look like.
  4. Next, discuss the care plan. Who can provide hands-on care at home? What kind of financial contribution can everyone provide? If the parent can remain at home, split up the day-to-day tasks such as grocery shopping, meal preparation, rides to the doctor, picking up medications, providing companionship, housecleaning, yard-care, etc.
  5. Acknowledge everyone’s feelings. Individuals will be at different places in their own lives. One sibling may be a new parent. Another may have lost their job. Or a sibling may live thousands of miles away. Or a sibling may be angry at a parent and not want to be involved at all. In these cases, ask gently if there is anything they can do to lighten the load for the others.
  6. If your parents have planned for retirement and were proactive about estate planning, your task will be easier than if they haven’t. Have them help you find the appropriate papers and resources as soon as possible while they are capable. Get the names and contact information for their legal professionals and make sure someone has been designated as power of attorney and durable medical power of attorney. If your parents have not done due diligence in sorting out their affairs and they are still able to, you need to stress the importance of doing so immediately. This is extremely important in the care of a parent. A sibling who is not involved in the hands-on care should be assigned this task.
  7. We’ve all become zoom experts in the past year and a half. Schedule monthly caregiver meetings so everyone stays informed about your parent’s needs. If a new care plan is needed, discuss the details.
  8. Make sure there is a point person for emergencies. Connect the family on “WhatsApp.”
  9. Take advantage of local resource such as Meals on Wheels and adult day programs.
  10. If siblings are unwilling to cooperate or if the situation escalates into an unmanageable situation, seek help. Call your local Area Agency on Aging. For more information, call the Family Caregiver Alliance, 800-445-8106 or visit http://www.caregiver.org and click on Family Care Navigator.

Express appreciation for any help your family is able to provide. Accept your siblings for who they are and understand that not everyone will agree with everyone’s opinion. Sharing the care for parents can either drive a wedge between siblings or bring them closer. Hopefully you’ll be able to communicate like adults and understand each other’s needs during the trying and stressful period that requires parenting our parents.

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.

20 Ways to prevent falls in Alzheimer’s patients

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Woman falls on slippery bathroom floor.

People with Alzheimer’s and other types of dementia are four to five times more likely to fall than older people who don’t have cognitive impairment. They are also three times more likely to fracture their hip when they fall, which leads to surgery and immobility. The rate of death following a hip fracture for those with Alzheimer’s is also increased.

A person with dementia may have trouble recognizing sight, sound or touch. Their vision may be distorted, not because of an actual eye problem but because of how the brain interprets what it is seeing. They may have problems with depth perception, get confused by patterns or light intensity, and they may lose coordination of movement and physical strength.

Some of these changes are inevitable and irreversible. However, movement and physical activity can go a long way toward fall prevention.

Scott Salus, occupational therapist and co-owner with physical therapist Daniel Basta, of Kind Rehabilitation says, “One of the main things that helps prevent falls is understanding that a fear of falling is one of the best predictors that someone will eventually fall.

“It’s really important to address falls before they happen. Caregivers need to come from an honest and firm place, because the moment someone has their first fall that can be the moment they lose their independence,” he says.

When Salus’ then-65-year-old, physically-fit mother and her boyfriend were moving, he insisted they look into the future to think about mobility issues. Would it be more prudent to live in a ranch than a multi-level home? “You can start the conversation early and plan for an eventuality that may never take place,” he says.

Salus, who specializes in working with patients with dementia and Parkinson’s, says, “The process of fall reduction is a delicate one that includes practicing every-day activities. We

reassure patients that it’s safe to practice pulling up their pants, or going into a shower fully clothed.”

He evaluates if the patient has vertigo when bending to tie their shoes or getting up from a seated position. Have they had a recent surgery or new diagnosis? How do they manage pain? Do they need a commode, or learn to reposition their arms, feet, and legs when toileting or getting out of a chair?

A physical therapy program might include exercises for strength, flexibility, good posture, and gait training. Learning to maintain balance while you’re walking and distracted or multi-tasking is also important, Salus adds.

The Feldenkrais Method® (Awareness Through Movement® and Functional Integration® developed by Moshe Feldenkrais) is another modality that helps prevent falls by teaching individuals to pay closer attention to the way they move.

Al Wadleigh, a Feldenkrais practitioner who teaches privately and at the Longmont Senior Center, starts a chair class by asking the participants to begin with a scan by turning the awareness inward. “Get a sense of how you’re making contact with the chair and with your feet on the floor. How is your weight distributed on the pelvis? Now roll back and forward to sense how your lower back is in relationship to the chair,” he says.

“We go through the lessons—and there are 2,000 of them—to fill out the idea of exploring and sensing what feels good. It’s to figure out, when given a better opportunity and choice, what the nervous system prefers. It’s development learning in order to change habits from old injuries, surgeries, emotions, work, and thoughts that don’t serve us.”

The aim of Feldenkrais is to invigorate your brain and nervous system with new ways of organizing and sensing your movement in the world. “Around age 50 the brain says ‘we’re not using all our neuro-pathways.’ We have fewer to rely on, so we have to neutralize the old habits in order to live life with more vitality,” Wadleigh adds.

He ends the class by asking participants to do a self-inquiry. One person says, “I’ve done the pelvis rock many times but sitting on a chair made it clearer.”

Wadleigh responds that the smaller the movement the more precise it can be. Once you’re aware of what you’re not aware of, you can fill in those parts.”

Another person with Multiple Sclerosis says that one of his feet was dragging that morning. “Now I can lift it up.” He adds, “I feel a centered-ness since doing Feldenkrais, and have better structure. Now when I stand and I’m reaching for something I’m able to move easier. That’s big for me.”

20 Tips for preventing falls

  1. Have adequate lighting throughout the house; place night lights in the bedroom and bathroom.
  2. Limit liquids after dinner to reduce night-time toileting.
  3. Get adequate sleep.
  4. Remove loose area rugs.
  5. Wear gripping socks, sturdy slippers, or shoes in the house.
  6. Avoid unsafe shoes, i.e. flip flops and high-heels.
  7. Place guardrails where needed.
  8. Stand up slowly.
  9. Use a walker or cane for steadiness.
  10. Declutter and remove excess furniture.
  11. Implement an exercise program to support muscle strength, stability, and balance.
  12. Use a “reach stick” to grab out-of-reach items.
  13. Do not use a step ladder.
  14. Eliminate or reduce alcohol and smoking.
  15. Be wary of medications that cause dizziness, sleepiness, and unsteadiness.
  16. Be attentive to pain management.
  17. Be aware of where your pet is to avoid tripping.
  18. Get adequate calcium and vitamin D to maintain bone health.
  19. Maintain a healthy weight.
  20. Get regular vision and hearing check-ups.
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.