How would you rate yourself as a caregiver?

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Cataract surgery reduces dementia risk

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

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

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

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

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

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

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

Traveling with someone who has dementia (this article first appeared in AAA’s EnCompass magazine)

https://living.acg.aaa.com/travel/15-tips-traveling-someone-dementia

Portrait of a senior couple at sea at sunset

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

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

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

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

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

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

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

20 Tips for traveling with someone with dementia

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

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

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: TheCaregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered 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)

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 AmazonBarnes & NobleBoulder Book StoreTattered 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?

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The memory care home wants to evict my loved one! What should I do?

Caregiver yelling at man in wheel-chair

Sometimes a person with dementia will act out and strike the person who just happens to walk by, or the person who accidentally walks into their room. Or, the aggressor might bite another person. Aggressive behaviors aren’t that unusual, but sometimes they get out of control. If they continue, the director of the memory care home will give the family a warning, and if the behavior isn’t resolved, the patient may be asked to leave.

Before things get out of control, there are modalities that can be used to help calm things down. Please read Chapter 18 “Aromatherapy” in Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia by Barbra Cohn (see below) on how essential oils can immediately diffuse a tense situation. The book contains 19 other healing modalities that really do work.

In our case, the care facility wanted my husband to leave because he became too needy. Even though the director assured me that the facility would be able to take care of him to the end of his Alzheimer’s journey when I signed the contract for him to move in, that’s not what happened.

After Morris had surgery for a kidney stone, he was unable to walk or toilet by himself. He couldn’t do much of anything anymore. He stopped talking and couldn’t feed himself. The facility where he had been for two years refused to accept him back from the hospital. The hospital discharged him on a Friday afternoon and we had to scramble for a facility that would take him. It was stressful and the new facility was awful. I begged the home where he had been to take him back, and they agreed, but with a big caveat. I had to hire a care person to be with Morris one-on-one because the facility didn’t have the staff to give him the extra care that he needed.

We hired extra care, but the cost became prohibitive. I moved Morris for the third time in four weeks to a different facility that specialized in end-stage Alzheimer’s. It was the perfect decision. He died there two weeks later, after having compassionate end-of-life care.

If things hadn’t gotten so crazy, and my husband hadn’t deteriorated as quickly as he did, I would have called my ombudsman to help me communicate with the first memory care home’s director. Her refusal to take Morris back after his hospitalization was virtually the same as kicking him out, and it was contrary to what was promised when I signed the initial contract: that they’d care for him until the end.

Contact your ombudsman

If you have any similar issues, contact your ombudsman. An ombudsman is someone who advocates for the health, safety, and rights of individuals in long-term facilities (LTC), and ensures that the residents are protected by the standards required under the Nursing Home Reform Law of 1987. Under the federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system. 

Unlawful evictions are one of the major complaints that an ombudsman deals with. The ombudsman will

If you can’t resolve a conflict or your concerns with the director of the facility or are uncomfortable, you can contact your ombudsman to:

  • Investigate suspected abuse (mental, physical, and emotional) of your loved one
  • Review inadequate staffing or training that should meet the level of care expected and promised
  • Discuss and resolve grievances that you and the staff have
  • Learn about your options and legal rights

Who can use an Ombudsman?

  • Residents of any nursing home or board and care facility, including assisted living facilities
  • A family member or friend of a nursing home resident
  • A nursing home administrator or employee with a concern about a resident at their facility
  • Any individual or citizen’s group interested in the welfare of residents
  • Individuals and families who are considering long-term care placement

How do I contact my Ombudsman?

Residential care communities must post the area’s ombudsman program contact information and responsibilities. You can also search for your state’s ombudsman by visiting the Elder Care Locator website (eldercare.acl.gov) or contact the Alzheimer’s Foundation of America’s (AFA) Helpline – 866-232-8484.

What if my loved one is asked to leave because of aggressive behavior?

First, try to figure out why your loved one is acting out. Does s/he have a urinary tract infection? Is s/he in pain because of a tooth abscess? Have a physician do a complete physical exam to rule out pain. Your loved one may be unable to articulate what is bothering them.

Be on the lookout for bruises, bedsores, stomach upset, missing personal items such as eyeglasses, or anything else that may be the cause of a change in behavior. Is another resident walking into your loved one’s room accidentally? Is loud music being played in the dining room? What about community TV shows? Are they violent, disturbing, or too loud?

Sadly, residents who have behavior issues are often given medications to control their outbursts. Try everything you can before resorting to those. My husband was given a sedating drug at one point and he became catatonic. As soon as I ordered the doctor to take him off the drug, Morris quickly reverted to his usual, pleasant self. When he would start to show agitation, I’d plug in an aromatherapy diffuser with a blend of oils that immediately calmed him down.

Essential oils can 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 loved one’s collar or pillow. Find a fragrance that is pleasing to them.

It’s always in everyone’s best interest to try to solve things amicably. An attorney can help review your contract with the facility, especially when it comes to involuntary transfers and aggressive behavior. But hopefully, the situation won’t get to that point.

All the best to you in the new year,

Barbra

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


Is your care partner driving you nuts?

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

I’m a little worried about my memory

Woman forgot to pick her granddaughter up from preschool.

Yesterday I had my annual wellness exam. It was the first time that my doctor asked me if I had any memory concerns. It made me sit up straight and realize that I am definitely in the age group of people who start showing signs of mild cognitive impairment. I nodded or shook my head in response to her questions and then said, “When I walked into my bedroom the other door I completely forgot why I had gone in there. My little granddaughters were playing hide and seek and when I said, ‘I don’t know why I came in here,’ they looked up at me confused and wondered why I was acting a little strangely.'”

Was I concerned? Yes, a little. I’ve done that before, but this time I was frozen for a few seconds. And actually, lately I’ve noticed that my spelling isn’t as sharp as it used to be. Neither is my long-term memory.

I’m even more concerned because I took the MindCrowd test, a short memory test in which you need to read and memorize 12 pairs of words. https://mindcrowd.org/?gclid=CjwKCAjwo4mIBhBsEiwAKgzXOEWhBjIHYSm0c42NvHNYAb2HDr6sMLfSCYjOc-zYq4D7-5FkW6mSmBoC-OIQAvD_BwE You’re given one word and asked to complete the pair, before the screen moves rather quickly to the next pair. To be honest, I didn’t do very well, and I was a little nervous while I was taking the test. It was more difficult for me than the Mini Mental Exam, which is given to people who are evaluated for Alzheimer’s disease.

As I said to my doctor, I know I don’t have Alzheimer’s disease. I’m kind of an expert on the disease and symptoms because I cared for my husband who had younger-onset Alzheimer’s disease for 10 years. And I wrote a book about our journey. https://www.amazon.com/Calmer-Waters-Caregivers-Alzheimers-Dementia/dp/1681570149/ref=sr_1_2?dchild=1&gclid=CjwKCAjwo4mIBhBsEiwAKgzXOHgn8mAm0UZQiBHyTLv7S_v_CYHJ-ruG_G0MyWUNV9myn59vmJfbvxoCuFAQAvD_BwE&hvadid=241894911837&hvdev=c&hvlocphy=9028817&hvnetw=g&hvqmt=e&hvrand=18354321622967658254&hvtargid=kwd-23474874821&hydadcr=22532_10344436&keywords=calmer+waters&qid=1627596739&sr=8-2

But I, and lots of my girlfriends, are somewhat concerned that we’re developing mild cognitive impairment. Should we be worried?

Here’s what I know

Approximately 12-18% of people age 60 or older are living with Mild Cognitive Impairment (MCI).

Researchers have found that more people with MCI than those without it go on to develop Alzheimer’s disease or a related dementia. An estimated 10 to 20% of people age 65 or older with MCI develop dementia over a one-year period.

MCI is more common in men (19 percent) than in women (14 percent), according to a 2010 study in the Neurology. https://www.nia.nih.gov/news/mild-cognitive-impairment-more-common-older-men-older-women

  • MCI prevalence was higher among people with the APOE e4 gene, a known risk factor for late-onset Alzheimer’s, a form of the disease that usually occurs at age 65 or older.
  • A greater number of years spent in school was significantly associated with decreased MCI prevalence, from 30 percent among participants with less than nine years of education to just 11 percent in those with more than 16 years of education.
  • MCI prevalence was higher in participants who never married, as opposed to those currently or previously married.

Signs of cognitive decline

  • Forgetting appointments and dates.
  • Forgetting recent conversations and events.
  • Feeling increasingly overwhelmed by making decisions and plans.
  • Having a hard time understanding directions or instructions.
  • Losing your sense of direction.
  • Losing the ability to organize tasks.
  • Becoming more impulsive.

I don’t forget appointments, but I do forget events that occurred in the past decade or so. But then again, I’m good at remembering details about many events that others don’t remember. I typically don’t get overwhelmed about making decisions and plans. But then again, I had tons of work this summer and did get a little overwhelmed. I don’t have a hard time understanding directions, unless it’s something like installing a toilet or putting together a new machine, which I will gladly leave for my handyman. I rarely lose my sense of direction, but then again, it’s not as acute as it once was and I do get turned around while hiking sometimes. I never have trouble organizing tasks. In fact, I often multi-task. I am not typically impulsive.

What happens physically to the normal aging brain?

The brain changes more than any other part of the body. Yes, even more than our complexion that withers and wrinkles. Physically, the frontal lobe and hippocampus, the areas involved in higher cognitive function and encoding new memories starts to shrink around age 60 to 70. Fewer synaptic connections are made, which may contribute to slower cognitive processing. White matter, consisting of myelinated nerve fibers that carry nerve signals between brain cells, shrinks, and neurotransmitters that play a role in cognition and memory deceases.

Normal brain aging

  • Difficulty learning something new: Committing new information to memory can take longer.
  • Multitasking: Slowed processing can make planning parallel tasks more difficult.
  • Recalling names and numbers: Strategic memory, which helps with remembering names and numbers, begins to decline at age 20.
  • Remembering appointments: Without cues to recall the information, the brain may put appointments into “storage” and not access them unless something jogs the person’s memory.

So what do I think? Am I developing MCI? I certainly hope not, and I really don’t think so. I spend a lot of time using my cognitive skills. I’m a writer, and am at my best while sitting at the computer writing words. But my memory is definitely not what it used to be, nor is it as good as my mother’s was when she was well into her 80s. But I take ginkgo, phosphatidylserine, B vitamins, and Lion’s mane mushroom, and I know they help because when I don’t take them, my mind is fuzzy. I’m not going to worry, because worrying does no good but add stress. But I will continue to eat a plant-based Mediterranean diet, which is proven to stave off premature aging, and try to get enough sleep and exercise

P.S. I repeated the MindCrowd test and scored really well!

P.P.S. No, I never forgot to pick up my granddaughter from preschool. 🙂

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

Pets can provide people with Alzheimer’s and dementia companionship, comfort and joy

Man resting in garden with his dog

My next door neighbor got an adorable lap dog that loved him to pieces during his struggle with Alzheimer’s. Now that he has passed away, his wife has a loving companion that gets her outside several times a day for walks. And that animal gazes at her with the love that only a dog can give. This was a success story of dog companionship for an elderly couple immersed in navigating the dark Alzheimer’s journey.

Pets can provide loving companionship, emotional therapy, and an excuse for getting out of the house for a walk and chat with other people on the trail. But pets can also pose a hazard when they get in our way or pull hard on a leash.

I have a friend who tripped this winter while walking her dogs. She fell and broke her collarbone. Another friend tripped over her dog in the kitchen and instinctively put her hand out to brace a fall. Unfortunately, she put her hand on a very hot stovetop and got a second-degree burn.

Pets offer numerous benefits

When people interact with pets the physiological response is a lowering of blood pressure and an increase in the neurochemicals associated with relaxation and bonding. These effects can help ameliorate behavioral and psychological symptoms of dementia. Several small studies suggest that the presence of a dog reduces aggression and agitation, and promotes social behavior in people with dementia. One study showed that having aquariums in the dining rooms of memory care homes stimulates residents to eat more and to maintain a healthier weight.1

When a dog is brought to visit memory impaired individuals (either at home or a facility), unexpected and positive reactions occur. Some patients who have refused to speak will talk to the dog, and others who have refused to move might pet the dog.

My daughter often brought her Miniature Schnauzer, Paco, to the memory care home where my husband lived. Paco always brightened the day for Morris and the other residents. He would run around scrounging for crumbs and sniffing the residents’ feet. Some residents reached out to touch him. One lady liked to hold him like a baby. She’d place a napkin on his head, pretending it was a hat. Paco created a bit of a stir, but he brought a smile to everyone’s face, including mine.

The human-animal bond goes beyond the mind and is centered in the heart. It can nurture us in ways that nothing else can. Sometimes a person with memory loss won’t be able to recognize a spouse, but can recognize a beloved pet. Just three days before Morris died a friend visited him with his trained pet therapy dog. Morris was bedridden, dehydrated, and non-communicative, but he opened his eyes and reached out for the dog.

If your loved one is used to being around animals, has had a pet, or if there is an animal that he or she is familiar with, by all means encourage the interaction to continue. It’s an easy, wonderful way to promote ease and happiness among care partners.

If you’re considering getting an animal companion, consider the following pros and cons.

10 Ways an animal companion or pet can help a person with dementia

Pets can:

  • Offer people with dementia unconditional love
  • Help relieve stress and anxiety
  • Help build confidence
  • Encourage laughter
  • Improve self-esteem
  • Help the person reminisce and recall memories
  • Provide an opportunity to get outside and walk
  • Support social activities, i.e. talking about the animal with neighbors, grandchildren, etc.
  • Bring back a sense of fun
  • Provide an opportunity to care for a living being, which in turn promotes empathy.

Things to consider

  • Does the person have the mental capacity to take care of the animals’ needs?
  • If the person has a caregiver, is that caregiver willing to provide the care for animal, including visits to the veterinarian.
  • Not everyone wants to interact with animal. Make sure the person really wants a pet and/or visit from a therapy dog.
  • A stuffed animal, cuddly toy, or robotic toy animal might provide the comfort that the person would get from having a pet. This might be a good option to explore before making a commitment to getting animal.
  • What happens if the person dies? Consider who will take responsibility for the animal.

In the end, you may find that a lower maintenance animal is a better fit. A fish aquarium can provide gentle stimulation, and quiet, relaxing beauty and grace.

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