Category Archives: dementia communication

Is Palliative Care Right for Your Loved One?

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Woman comforting her unwell husband

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

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

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

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

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

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

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

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

A personal anecdote

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

Simple ways to provide palliative care

  • Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.
  • Play soothing music, and sing.
  • Speak softly.
  • Read to your loved one.
  • Use dimmed lights and/or battery-operated candles.
  • Beautify the environment with flowers.
  • Massage and/or physical touch is a wonderful way to ease everyone’s tension.

Getting palliative care

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

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

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

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

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A walk through the park

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How would you rate yourself as a caregiver?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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