People living with Alzheimer’s or other dementia sometimes have problems sleeping, or behavioral issues that start at dusk and sometimes last through the night. This is known as sundowning, and there are steps you can take to minimize its effects. The changes in their sleep schedule can lead to more behavioral issues, so it’s important to minimize the difficulties as much as possible. Oftentimes sundowning peaks during the middle stages of Alzheimer’s, though it can surface at any stage.
There are some factors to look out for that can exacerbate sundowning:
Mental and physical exhaustion
Upset in the “internal body clock”, causing a biological mix up between day and night
Shadows due to reduced lighting can cause confusion about what people living with Alzheimer’s are seeing
Inability to separate dreams from reality can cause disorientation
Ways to help reduce effects of sundowning:
Keep a precise schedule. In order to maintain a restful night’s sleep, set times for every meal, bedtime, and waking up. Even working in a timed daily walk or exercise routine can help uphold the day’s structure.
Avoid stimulants. Nicotine, caffeine and alcohol can all affect one’s ability to sleep. Television can also be activating, so turn it off at least an hour before bed and avoid using television during periods of wakefulness during the night.
Be active during the day. Resting most of the day can cause restlessness at night. Discourage late afternoon napping and instead replace afternoons with activities. Puzzles, card games, cooking/baking, looking at family photo albums, reading out loud, or listening to music are all stimulating options to help fill the day.
Stay mindful of your own exhaustion. Sometimes loved ones living with Alzheimer’s can pick up on your stress and become agitated. Caregivers need to get enough rest at night as well to ensure they can stay energized during the day.
Keep the home lit in the evening. Shadows and the dark make for unfamiliar and sometimes disorienting settings. Keep the home well lit until it’s time to sleep.
Create a safe and comfortable sleeping environment. Make sure to keep the room at a comfortable temperature. Install the appropriate door and window locks to avoid wandering- door sensors and motion detectors can be used to alert family members if a person is awake and roaming.
Share your experience and connect. Join ALZConnected, our online support community and message boards. Here you can share your experiences, what did and didn’t work, and hear from others about coping mechanisms or just general support. Join ALZConnected For more information on caregiving and staying safe during COVID-19, visit here.
Mary Sanko is a volunteer support group facilitator for the Alzheimer’s Association Illinois Chapter. A support group is a regularly scheduled in-person or virtual gathering of people with Alzheimer’s disease or another dementia, family, friends or caregivers who interact around issues relating to dementia. Groups can have social, educational and/or support components and are facilitated by individuals who have received training from the Alzheimer’s Association. Find a support group near you here: Illinois Chapter Support Groups.
“In the early 1990’s, my mother lived in a small town in the state of Oregon and I was 2,000 miles away in Illinois. When she began to tell me her memory was failing, I dismissed it and tried to reassure her. However, it soon became obvious that she was right. She had a friend named Eileen, a retired Army nurse, who became her “guardian angel,” helping with her medications and errands. The responsibility became too great for her, and since there were safety concerns, my brother and I decided to move her to Portland near where he lived. She resisted the move, but we knew that we needed to “keep her close.” Becoming her caregiver and doing it with the dignity she deserved was very difficult. She passed away late in 1997.
I attended a local support group during the later stages of her disease and found it reassuring and helpful. Early in 1998, I was asked if I would consider becoming a support group facilitator. I still wonder why I was chosen. After all, I had a mathematics degree and had worked as a computer programmer. No social work education here! The local office staff trained me and I became a co-facilitator for the group I had attended a few months earlier. I found that helping others through their Alzheimer’s journey eased my grief.
It wasn’t long before my co-facilitator moved out of the area and I was on my own. Lurinda, whose mother also had Alzheimer’s and had been a member of the group, joined me in 2004. We have been a team ever since. We have a two-pronged approach to our meetings – education and support. The education segment is usually a DVD, but occasionally, we’ll have a guest speaker.
Twenty years later, I still find the support group meeting to be the most rewarding hours of my month. My mother, in her illness, gave me a wonderful gift, and I hope that through her, I have been able to help others. Facilitating a support group can be very challenging at times; but it is wonderful to see caregivers who come because they are desperate for help eventually begin to help others.
When I was growing up, my mother took sewing classes so she could help me with my 4-H projects. Sewing, and later quilting, became an important part of my life. In 2002, I made a small quilt that still hangs in the local office. It is dedicated to all caregivers with the inscription, “In honor of support group members who help and encourage each other through difficult times.” And it is also a tribute to my mother.”
I married the love of my life, Robert Andrew Jordan, on July 29, 1962. He was twenty and I was seventeen. Fifty-five years later our story of love and happiness, good times and bad, ups and downs, twists and turns, from poverty to prosperity had enough guiding light that it was turned into a published book “From Suspenders to Stethoscope…the Dr. Jordan Story.” This story was released June 30, 2017, the day which was the last day of work for my husband, Robert A. Jordan, M.D., the pediatrician, a graduate from Rush Medical College,the first African American Chief Resident at Rush Presbyterian St. Luke’s Hospital, a well known and respected physician who was known for the quality of patient care he gave to thousands of children during his time in practice. He believed that no matter what one’s socioeconomic orientation may be, or ethnicity or gender or religious affiliation – everyone deserved the best of healthcare. Yet this dedicated clinician had been diagnosed with dementia.
It was in January of 2014 that I finally came out of denial and came to terms with what was going on with my husband. I shared with our five children as well as Bob’smother and sisters my fear of what was later confirmed – he had dementia. I became more observant of the changes in his behavior. He would call me from his office two or three times a day to ask how my day was going and I would share with him I was doing or had done but a few minutes later he would call again, and ask the exact same question. When I would say you just called me and asked me that, he would laugh and say, ‘“Oh I was just kidding.” He was an avid golfer and would golf at least two to three times per week with his buddies or on his off days and special occasions. However, I began to notice his buddies stopped calling to include him in their golf outings. I eventually realized it was probably because he would interrupt the game when he couldn’t find his phone or misplaced his keys, everyone would have to go on the hunt only to find that his keys were in his pocket and/or his phone in the compartment of the golf cart. He stopped being excited about our golfing together. His interest in reading the bible, which he loved to do, diminished.
We were a physician pastor team and our dialogue with one another about our passions was slowly coming to a halt. I would ask him to stop by the store on his way home from the office to get a loaf of bread, or pick salad fixings and would come with everything but. Around late 2015 his staff started calling me to ask if Dr. Jordan had come home for lunch because it was way past his lunch hour and he had not returned. He once called me to say he had gone to pick up lunch for the staff but he was confused and couldn’t find his way back to the office. He seemed scared and panicky, but I was able to direct him home using landmarks and street signs after about 30 minutes.
I was taking care of my 86 year old sister who was a double amputee, and he would ask the same questions about her condition over and over. In early 2016 I finally convinced him to let me make him an appointment to see our Primary Care Physician to be evaluated for possible memory loss- he wasn’t happy with the suggestion and went hesitantly. My husband was so crafty that he convinced our doctor that nothing was wrong with him, but rather he was preoccupied. When the doctor suggested that he could do a memory loss assessment just to rule out what we suspected, Bob refused. I can remember leaving the office in dismay, frustrated not knowing what to do.
I began to watch his behavior even more closely. His routine of getting up at 7 am, showering, getting dressed, making and drinking a cup of coffee, stopping by McDonald’s to get some oatmeal before going to the office began to change. He started sleeping later and later. His impeccable dress was a little off and it would take him forever to complete the dressing task; he was constantly misplacing his wallet or his phone or his keys. Every morning was a search for something that he had misplaced. When I located the item he would fuss and say “who put it there?”. I notice that his demeanor was changing and he would get irritated often. He started to get up earlier to get ready for work, sometimes as early as 6 am when office hours weren’t until 9 a.m, leaving him to pace back and forth until it was time to leave. He stopped calling his mother, I would have to remind him. He forgot that our daughter’s fiance had flown in from California to ask him for our daughter’s hand in marriage. They had a long wonderful conversation and he gave his blessing. When the day came that she called to say they were on their way to get married, he became angry and claimed he’d never met the man. He began to take longer and longer to come home. As things got progressively worse, my children and I started preparing for Dr. Jordan’s retirement. We found a psychiatrist who convinced him to do a memory loss test and diagnosed him with Alzheimer’s. A second opinion confirmed this diagnosis. He was placed on medication, which he initially refused to take. We reduced his hours at his office, my oldest daughter immediately pitched in by becoming the office administrator to help prepare for his retirement. He was resistant to retiring but we finally convinced him it was time to enjoy life outside of medicine, he was now 75 years old and God had given him the ability to practice 10 years beyond retirement age.
July 3, 2017 was the first day of retirement for Dr. Jordan. On that day he got up early,got dressed in his suit and tie, put on his lab jacket, and began searching high and low for his stethoscope and car keys. On that day my duties as a caregiver began. Trying to get him to understand that he no longer had to go to work was a daily struggle. He was concerned with how we were going to survive, eat, and pay bills. This question went on all day practically every day. I eventually had to go write out our income sources and put it in his wallet so that he could visually see the numbers and understand for a short period of time that we were going to be alright. We had to move from our home which was now much to big for me to handle and seemed to be a trigger for his unhappiness. Not being able to drive the car that sat in the garage made him angry, not being able to go to the office to care for the children confused him. I was becoming frustrated, angry and confused. I hadn’t experienced or know anyone suffering from this disease and had no point of reference. I cried daily. My children insisted that I connect with a support group, so I started with the support group at South Suburban Hospital in Hazelcrest, IL, I then reached out to the Alzheimer’s Association of Illinois. After having attended an Alzheimer’s Association forum at Palos Hospital in Palos, Illinois where I shared my story I was asked if I would be interested in volunteering as a caregiver speaker for the Association and I gladly did so. I also- signed up to become a participant in the Emory University Tele-Savvy Caregiver Program which is a training program for caregivers. I needed to know all there was to know about being an informed caregiver, I knew how to be a wife but now I needed to know as a wife how to be a good caregiver for my husband. I’ve learned that I’m more than a caregiver, I am a clinician for my husband.
This journey has touched my heart so deeply that I now have a need and calling to be an advocate, not just for my husband, but for all who are affected by this disease. My husband as well as all who suffer deserve to be cared for with respect, dignity, honor and a deeper kind of love. Even though my plans were to care for him at home till death would separate us, my children and I had to make the dreaded decision in October of 2019 to place Dr. Robert A. Jordan in a long term care facility. He had begun to wander off, once having to be found by the police and brought back home. That was the most frightening day of my life. Then he was becoming aggressive toward me, my daughter and nephew; he was extremely agitated and depressed. In his new community he has become very calm and more social with the other residents. I find solace in sharing what I’m learning and experiencing every day.
One key I have learned is that self-care is most important. If I’m not healthy, I can’t see to it that my husband is cared for properly. During the time I was caring for my husband at home I was anxious, tired, short-fused, crying daily and suffering sleepless nights. I needed to share my feelings with someone who wouldn’t judge or criticize how I was feeling, so my children encouraged me to see a therapist. This was the best decision I could have made because she help me to work through my feelings of fear and frustrations by focusing on self-care. I gave myself permission to enjoy my life through spiritual disciplines, outings with friends, or enjoying free time with recreational activities. I have been blessed with an awesome support team, my daughters, my church family, my Nephew, my God Son together with his daughter and Dr Jordan’s colleagues who visit him often. My two children who live out of state come to surprise their Dad and I as often as they can, but with today’s technology we FaceTime them when we visit.
This support team allows me the flexibility to take trips to see my children and grandchildren who live out of state or to just do a getaway! I’m thankful for my support groups, the friends who have not abandoned us, my children who are the best, my colleagues, Bob’s colleagues, Bob’s agency caregiver, who still visits him, my church family and the support goes on and on. The vows we took 57 years ago have even more meaning to me now, “for better or worse, for richer or poorer, in sickness and in health we’ll be one till death parts us!”
As an unpaid caregiver, you commit time, energy and compassion to the ones you love who are living with Alzheimer’s. Chances are you’ve also had to cover some care costs out-of-pocket. Because you are a caregiver you might qualify for some tax benefits from the IRS. Though tax rules can be complicated and are subject to change, here are some expenses you might be able to write off. Talk to your tax advisor or accountant to learn more.
Medical expenses. Your loved one living with dementia may be considered your dependent for tax purposes. If this is the case you may be able to deduct their medical costs. Typically you can only deduct medical and dental expenses that are more than 10 percent of your adjusted gross income, but if you or your spouse were born before 1952 you maybe able to deduct medical expenses more than 7.5 percent of your adjusted gross income.
Note: Only expenses not reimbursed by insurance can be deducted.
Medical fees from doctors, laboratories, assisted living residences, home health care and hospitals
Cost of prescription drugs
Cost of transportation to receive medical care
Home modifications costs such as grab bars and handrails
Personal care items, such as disposable briefs and food
Dependent Care Credit. If you paid someone to care for the person with dementia so you could work or look for work, you may be able to claim the “Child and Dependent Care Credit” on your federal income tax return. If eligible, you would be allowed a credit of up to 35 percent of your qualifying expenses, depending upon your adjusted gross income.
You must have earned income
The person with dementia must be unable to physically or mentally care for him or herself
The person with dementia must be claimed as a dependent on your tax return
Flexible spending account. If the person with dementia is a dependent under the tax rules, you might be able to use your own workplace flexible spending account (FSA). This money can cover the person’s out-of-pocket medical costs or dependent care expenses in some cases.
For more information on deductible expenses and exemptions for caregivers, visit these links: