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This time last year started a life-changing journey for my family and I. My 53-year-old mother was lost for three days in the brutal Illinois winter weather. Leading up to this event, we had noticed changes in her behavior but didn’t know what to attribute it to. She had told the family she would not be at Christmas that year because she didn’t feel her car was reliable enough to get her from Bloomington to the Pekin, IL. On Christmas night, we received a call from her significant-other asking when she had left to head back home. There was instantly a feeling of panic. My uncle and I drove around most of the night looking for her along different routes she could have taken, but there was no sign of her. Detective Jeff Engle of the Bloomington Police Department contacted me the next day to discuss the circumstances and what his plan was to find her. My sister and I also started a Facebook post begging for anyone and everyone to keep a look out for her and to share information about the search. Me, my son and my mom Eventually, she ended up using her credit card which sent the search to Mattoon, Illinois. On December 27th, her car was found abandoned in a residential area of Mattoon. It felt like our worst fears were coming true. My family and I headed for Mattoon to help in the search. Later that day, I received a call from Detective Engle saying my mom was found alive and was with the State Police. We couldn’t get to her fast enough. I will never forget the feeling of being able to hug her again. My family and I say that it truly was a Christmas miracle that she survived. We even got to meet the gentleman that found her and saved her life. We believe he had to have been a guardian angel here on Earth. Turns out, my mother went for a drive and her car had run out of gas. That night, she slept in her car without any heat whatsoever. The gentleman who saved her life found her the next day and gave her a place to stay. Me, my sister and Detective Engle The following handful of months after finding my mother were just as tough. It was hard for her to comprehend that something wasn’t right, and couldn’t really understand why she wasn’t allowed to drive anymore. She was resistant to help find answers and did not like all of the doctor appointments. After enduring many tests, we finally received the diagnosis of Early Onset Alzheimer’s disease. While my family and I were expecting this diagnosis; it was still a punch to the gut. The diagnosis was earthshaking. However, it brought our family closer together. We have a deeper understanding of patience, compassion, “don’t sweat the small stuff” and unconditional love. We don’t know what the future looks but right now my sister and I still have our mom. We want to have good memories and enjoy her company. While this journey is scary and somewhat unknown, we have each other, and we have an opportunity to make the most out a bad hand of cards. At times, this journey feels very lonely and isolating. I do not have any friends that can really relate to what I’m going through. I’m only 32 years old. My younger sister and I are just starting to create our own families, and we need our mom now more than ever. On the other hand, we have met some amazing people along the way. We even participated in our first Walk To End Alzheimer’s in Peoria this year on October 13th. To see that many people come together to support a cause that so quickly became front and center in our lives was a wonderful reminder that we are not alone. For those just starting to navigate through this journey; keep your chin up and try to find the joy. There isn’t a how-to book for this, so do the best you can and lean on those in your support system. And remember, you are not alone! By: Lindsay Edwards

The holiday season is a time when families gather and spend quality time with loved ones. It is also a time that can raise questions about the cognitive health of aging family members. With Alzheimer’s disease in particular, it is important to know what it is and what is not normal aging.  Below is a list of warning signs along with examples of normal aging.  If you notice any of the warning signs in your family members, it is recommended that you see a doctor. Alzheimer’s Association 10 Warning Signs of Alzheimer’s Memory loss that disrupts daily life. One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on one’s own. What’s typical: Sometimes forgetting names or appointments, but remembering them later. Challenges in planning or solving problems. Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What’s typical: Making occasional errors when balancing a checkbook. Difficulty completing familiar tasks at home, at work or at leisure. People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. What’s typical: Occasionally needing help to use the settings on a microwave or to record a television show. Confusion with time or place: People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What’s typical: Getting confused about the day of the week but figuring it out later. Trouble understanding visual images and spatial relationships. For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror. What’s typical: Vision changes related to cataracts. New problems with words in speaking or writing. People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”). What’s typical: Sometimes having trouble finding the right word. Misplacing things and losing the ability to retrace steps. A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time. What’s typical: Misplacing things from time to time, such as a pair of glasses or the remote control. Decreased or poor judgment. People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. What’s typical: Making a bad decision once in a while. Withdrawal from work or social activities. A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. What’s typical: Sometimes feeling weary of work, family and social obligations. Changes in mood and personality. The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. What’s typical: Developing very specific ways of doing things and becoming irritable when a routine is disrupted. Early diagnosis of Alzheimer’s disease or other dementias is an important step in getting appropriate treatment, care and support service. Benefits of an early diagnosis of Alzheimer’s disease: Benefit from treatments that may improve symptoms and help maintain a level of independence longer Have more time to plan for the future Increase chances of successfully finding a clinical drug trial through Alzheimer’s Association TrialMatch, helping advance research Participate in decisions about their care, transportation, living options, financial and legal matters Develop a relationship with doctors and care partners Benefit from care and support services, making it easier for them and their family to manage the disease Anyone with questions about Alzheimer’s disease and/or seeking information should contact the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900.  Experts are available to take calls from individuals concerned with their own cognitive health as well as from family members and friends who may be concerned about a loved one and are seeking resources.

By: Dar Lehman I was a caregiver for my husband, William, who was diagnosed with dementia in 2007 at the age of 77.  We began a journey that was totally unexpected. It affected not only him and me but also our children, grandchildren, extended family and friends for nearly 10 years. None of us were acquainted with dementia. No one in our family had ever been diagnosed with this disease. It had started out harmlessly – he had begun to forget names and how to do basic things like balance a checkbook, which he had done all his life. This was quite a surprise given that William had taught thousands of children to work safely in a woodshop, commanded a military post, and served as a deacon. Little things like, misplacing his keys and losing the car in the parking lot were that much more surprising. We began losing the man we knew and loved little by little. I began to notice small things that made me think something was not right with him. He needed help getting dressed, he lost his concept of time, he would get upset with small things, could not recall our phone number, dates, and he would sleep much of the time. I asked our sons to watch their dad carefully when they visited us to see if they noticed anything out of the ordinary. They agreed that something was not right. At a regular doctor appointment, I informed his doctor of my concerns and described some of his behaviors. Instead of finding answers, I was told “Good luck with that,” so I began searching for a neurologist.  He thought my husband was suffering from delirium. I couldn’t understand what that meant, so we found a new doctor who finally confirmed that my husband had dementia. We had also found a new geriatric doctor who understood what we were dealing with. I had begun to attend a support group for caregivers for people with dementia, and that proved to be a great help over the next 10 years. We had all begun to research this disease, getting information on the internet, at the library, through the support groups, and listening to speakers who held discussion groups. We gathered all the information we could find. Even the grandkids were doing research on the subject. We have learned a great deal as we traveled this journey. People need to understand that this disease is not the same for everyone – and it is not something you simply surrender to. Everyone does not follow the same path – there is no timetable. The person you knew and loved is still inside – the disease simply takes over. Getting upset and angry won’t help. You need to cherish the time you have with each other, looking for the good in the midst of all the bad. It is there! Ask for help from others. I cared for my husband at home for five years on my own. Our family was very helpful, but it was mostly me 24/7. After those five years, our sons finally stepped in to say it was time to get outside help. We were lucky to find Senior Helpers who found very compassionate, well-matched, patient caregivers to come three days a week for a few hours. That gave me some time to get away and do the things that I enjoyed. You need to have time away from the stress that is there all the time, physical, emotional, and spiritual, even if you don’t realize it. Finally, when it got more complicated with other medical conditions, we decided it was time to find a facility where he would be able to get the help he needed, which I could no longer provide for him at home. We searched for the nearest, nicest place we could find, and he spent the last three years of his life in a memory care facility. I spent hours with him every day for the entire time he was there. It was like home to him. He never asked about coming home, nor was he ever unhappy there. He had always been very outgoing and happy, and that never changed. Our children and grandchildren also visited with him often. We attended every event they held there – monthly brunches, socials, holiday parties, and arts and crafts events. He and I went out to lunch, visited museums, parks, and anywhere else they arranged for the residents to attend.  They would always invite me to come along, so I did. Even if he wouldn’t remember, I could make memories for both of us. Our faith was always a very important part of our lives. He had even been ordained as a deacon in the Catholic Church. As a result, we had made friends with many wonderful priests over the years. William would get the biggest smile on his face whenever one of them would come to visit. He had lost the ability to have a conversation with them, but his expression said it all. Visits from the grandchildren would cause lots of smiles and laughter as well. Our faith and our many caring friends who supported us all along the way made it possible to complete our journey.

By: Brenda Samonds Being my mom’s caregiver was one of the most challenging and rewarding experiences of my life. I noticed her personality changes early on, as well as the forgetfulness Mom’s decline was rapid, and due to my own health issues, I had to make the choice to put her in a memory care center. They had apartments next door and where her husband resided. I spent most of my time taking care of her everyday needs. She did not We eventually built her a ramp at my house so I that could bring her back home. We would bake cookies, talk, nap, watch TV, and go out for car rides. When she could no longer feed herself, I fed her. When she couldn’t walk, I took her for walks in her wheelchair. I kept a daily journal during our time together.  I wrote all about the good and the bad times that we had. My mom, unfortunately, passed away in only two short years, but I will always have the memories of our journey together.

Holidays can be difficult for family, friends as well as the person with dementia. Often as family and friends gather to celebrate symptoms of dementia become clear. Memory loss may be more evident, anxiety The Alzheimer’s Association Illinois Chapter also offers a caregiver holiday guide that shows how, with careful planning, family celebrations can be a meaningful part of the holidays while ensuring safety, comfort and enjoyment for everyone. Its purpose is to help alleviate some of the stress associated with the additional activities and changes in routine at this time of year. If you have a caregiver or a person with Alzheimer’s on your gift-giving list, the Alzheimer’s Association has some suggestions to make your shopping a bit easier. Gifts for those living with Alzheimer’s In the early stages Items to help remember things magnetic reminder refrigerator pads Post-It notes baskets or trays that can be labeled within cabinets or drawers a small pocket-sized diary or notebook erasable whiteboards for key rooms in the house a memorable calendar featuring family photos – write special family occasions such as birthdays and anniversaries Items to help with everyday tasks a memory phone that can store up to eight pictures with the names and contact information of family and friends automatic medication dispenser that can help the person living with Alzheimer’s remember to take their medicine nightlights that come on automatically when it gets dark a clock with the date and time in large type Items to help keep the person engaged favorite musical CDs or CD with a compilation of favorite tunes VHS/DVD collection of favorite movies activities such as scrapbooking or other craft projects In the middle-to-late stages Sensory stimulation gifts. Stimulating the five senses may bring back pleasant memories. Give gifts such as: scented lotions a fluffy bathrobe in a favorite color a soft blanket or afghan to keep warm Clothes. Get comfortable, easy to remove, easily washable clothes such as: sweat suits knits large banded socks shoes with Velcro ties wrinkle-free nightgowns, nightshirts and robes Music. Research shows that music has a positive impact on individuals with Alzheimer’s, bringing them back to good times, increasing stimulation and providing an opportunity to interact with family members. Buy favorite CDs or burn a CD full of musical favorites. MedicAlert® + Alzheimer’s Association Safe Return: Enroll the person in MedicAlert + Safe Return, a 24-hour nationwide emergency response service for wandering and medical emergencies. Gifts for caregivers Gift cards and certificates. Give gift certificates for restaurants, laundry/dry cleaning services, lawn care services, computer/technology support, maid services, and personal pampering services such as massages and pedicures. Books. In addition to giving novels on the caregiver’s “must read” list, there are also a number of books on caring for a loved one with Alzheimer’s disease. Digital Video Recorder (DVR).  Purchase DVR/TiVo and a year’s worth of service so the caregiver can record favorite shows or sports programs he or she may not be able to watch in real time due to care responsibilities. The gift of time. Cost-effective and truly meaningful gifts are self-made coupons for cleaning the house, cooking a meal, mowing the lawn, shoveling the driveway, and giving time off so a caregiver can do something to meet their needs.

Why is wandering a concern during the holidays? Caregivers should be especially alert to the possibility of wandering during the holidays.  If you are traveling with someone with dementia, be aware that the change in routine and environment can increase confusion.  People with dementia trying to go home may become lost if they become separated from their loved on while traveling. Considering bringing an extra person with you if you are traveling with a loved one, so there is always someone accompanying the person with dementia at rest stops.   Also, large celebrations at home may be overwhelming to a person with dementia. Be aware that people might leave when others are busy or distracted. You may want to consider putting alarms on your doors so that you will hear people coming and going. Cold weather always makes wandering especially concerning, as the person with dementia may not dress appropriately for the weather. When do I need to start worrying about wandering? Wandering is a serious concern when you are caring for someone with dementia.  Six out of ten people with dementia will eventually wander. We are often asked when it is time to take measures to prevent wandering.  If you starting to have concerns about this, it is probably time. Why do people wander? Wandering is often a part of dementia because of the disorientation and confusion that come with the disease.  People do not recognize their surroundings or may believe it is an earlier time in their life when they need to go to work or care for young children.  People with dementia have trouble with the time of day and may believe it is time to get up when it is really the middle of the night. People with dementia may become frightened when they no longer recognize the family members who live with them and may leave the home to get away or to try to find their way back to a place they remember. Tips to prevent wandering: Wandering can happen even if you are the most diligent of caregivers. Use the following strategies to help lower the chances. Identify the most likely times of day that wandering may occur. Plan activities at that time. Activities and exercise can reduce anxiety, agitation and restlessness. Reassure the person if he or he feels lost, abandoned or disoriented. If the person with dementia wants to leave to “go home” or “go to work,” reassure the person that they do not need to leave right away.  Try to refrain from arguing or contradicting the person. You might want to say, “Your boss called and you don’t have to go in today.” Or, “we’ll go visit your mother tomorrow.  Right now we’re about to have dinner.” Or, “We are staying here tonight. We are safe and I’ll be with you. We can go home in the morning after a good night’s rest.” Avoid busy places that are confusing and can cause disorientation. This could be at shopping malls, grocery stores or other busy venues.  During the holidays, you may consider scaling back on large celebrations that might be too much for the person with dementia. Place locks out of the line of sight. Install either high or low on exterior doors, and consider placing slide bolts at the top or bottom. Camouflage doors and door knobs. Camouflage doors by painting them the same color as the walls, or cover them with removable curtains or screens. Cover knobs with cloth the same color as the door or use childproof knobs. Use devices that signal when a door or window is opened. This can be as simple as a bell placed above a door or as sophisticated as an electronic home alarm. Keep car keys out of sight. A person with dementia may drive off and be at risk of potential harm to themselves or others. If night wandering is a problem… Make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Also, use night lights throughout the home. Provide supervision. Never lock the person with dementia in at home alone or leave him or If your loved one is missing and is in a vehicle in Illinois, Law Enforcement can enter them in the Silver Search program  You can see information about that here: http://www.silversearchillinois.org/

“I hope that this song- or anthem- is one that will draw out conversation with family members to speak about what may be going on in a family. This four-minute musical piece will wash over the tired, weary caregiver who might be in need of extra encouragement on their way to work,” said Julie Sparks, a Lombard resident who wrote the song titled,“Anymore”, as an anthem for caregivers. Caregiving has always come naturally for Julie. “I am a full-time caregiver for my mom and also helped take care of my dad and my aunt until they both passed away. I have absorbed all the emotions surrounding important medical decisions, the frustration of people that just don’t get the importance of normalcy in an otherwise unpredictable world of person living with Alzheimer’s, the avoidance or denial of a loved one not ready to accept the real facts of what is going on during the diagnosis phase, the pain that is shared the first time a loved one can’t recall who their adult child is, or when someone is having a challenging day and you have tried everything you can think of to soothe a troubled resident who can’t articulate the fear, the longing, or what they need.” When it came time to write “The amount of people that are strangers to them in a place that is now their home, but not their home yet- is so hard for them,” Julie said. “Every person has a story, talents, fears, and hopefully loved ones that want to see their loved one thrive and get settled in. This transition is impossible if they are not surrounded by people with a heart and passion for the senior community.” When asked how the idea of the song came about, Julie claims that it “evolved from the first line as a day in the life of a caregiver, and the cry that sometimes goes unheard of understood by many…that just because someone can’t communicate verbally or physically move as they did in their 40’s or 50’s, and cognitively keep up in card game or conversation. This doesn’t void out who they were or more importantly to where they once belonged.” Though this may seem like only a song to some, Julie hopes caregivers find comfort in her lyrics. “This song is important Julie took her pain to a piano as a way to give hope to caregivers everywhere. “I’m so happy that I was able to poetically paint a picture of a day in the life of a caregiver and the cared for.  I think it when a song can uplift and help families talk about the important topic of the cognitive health of our parents. The circle of life is revealed in a tender way. My mom is all I have left. I dedicate this song to her and hope that I am able to look back on her ending years and know I gave my all to be her advocate, as she was for me when I was growing up.” Julie wants other caregivers to remember one very important thing: “never underestimate the power of touch, talk, and simple gestures of communication to someone living with Alzheimer’s.” To hear Julie Sparks’ song “Anymore” visit http://bit.ly/2qzmVWC.

On Tuesday, November 27, people across the nation will come together to make a difference in the world around them. Giving Tuesday is a special call to action which creates a national “day of giving” around the annual shopping and spending season. We encourage you to take part and do a little big thing for Alzheimer’s care and support in Illinois. Your tax-deductible gift helps fund our free programs and services for the 220,000 Illinois residents living with Alzheimer’s disease and the more than 590,000 Alzheimer’s caregivers. In this article, we feature Mary Jane Davis, whose grandson, Lincoln, gives to the Alzheimer’s Association Illinois Chapter to honor and remember Mary Jane’s father. Our Story My father, Lincoln’s great-grandfather, was a wonderful man.  He was a hard worker, loved his family and loved life in general.  He retired at age 65 but continued to work long into his 70s. He always took care of us and helped others in the community when the need arose and he had the ability to do so. He loved to garden and gave away the extra produce he harvested from his big garden, the “truck patch”, as he called it, and was always willing to help someone change a tire, start their car, clear away snow or whatever the need might have been in our small town. As the disease progressed, he could feed himself most days and walk with some assistance – but other than that he could do nothing for himself. Other than the Alzheimer’s, dad was in pretty good health.  Mom took very good care of him, but we saw the exhaustion and worry very apparent in her.  She was diligent in trying to keep things as normal as possible for him at home and vowed not to put him in long-term care.  In December of 2013, he was hospitalized with pneumonia and congestive heart failure. Even though he recovered, he was very weak and it became clear he would need to go to a facility for rehab.  He entered a long-term care facility on January 3, 2013 and he passed away there on December 10, 2014 at the age of 89.  We visited often and mom was there most days.  In spite of the memory loss, his temperament remained the same. The staff loved him and he came to love them.  Every visit ended with him saying “I don’t know why I can’t go home” and a difficult explanation to try to help him understand.  He knew us most visits but would always greet mom with “There’s my wife, she’s the best wife in the world!” Even though it was so difficult to see this life-altering disease rob dad of so many great memories, we were blessed in many ways.  He was happily confused and remembered mom to the end.  We were also blessed to celebrate their 65th wedding anniversary in June of 2014, and had a holiday celebration with all the family in attendance two weeks before he passed. The nursing center provided wonderful care and transported him to the family events.  What a gift! The Lemonade Stand We are blessed to have our three grandchildren visit us for a week during this past summer.  The lemonade stand dates back to the summer of 2011.  Our granddaughters were eight and five at the time. They had lost their paternal grandfather earlier that year to metastatic lung cancer.  Our daughter and son-in-law have a very strong faith as does the entire family and the girls were raised from a very early age to have a servant’s heart.  As a result of their Fast forward seven years and the lemonade stand was resurrected for another great cause.  Our grandson, Lincoln, has seen pictures of the lemonade stand and the lemonade stand itself in storage over the past couple of years. He loved his great-grandfather, calling him grandpa, and visited him with his family whenever he could.  He loved to sit on dad’s lap and they would play with some of the interactive toys and games we had purchased for dad.  When we visited him in the nursing home, Lincoln liked to push him in the wheelchair. Lincoln told us in his own words that he “did it so people who lose their memories could be happy and feel better and remember their memories.  The money will help do things to make people like grandpa feel better.  Other people should do what I did so people like grandpa remember.  I did this because God teaches us to help people and love them and the Bible tells us that.  It makes me feel good to help people.” We donate to the Alzheimer’s Association because we personally witnessed this life draining disease in dad and the battle that mom fought every day to care for him and keep him with us. I also am blessed to volunteer at Apostolic Christian Restmor in Morton and encounter people every day with various stages of this mind-crippling disease.  It is so obvious that the need is great to raise money for care improvement whether that be pharmacologically or personal care and to support research for the development of a cure.  If this By: Mary Jane Davis

Hello, my name is David Myers and I am the primary caregiver for my wife, Cheryl.  Cheryl was diagnosed with Alzheimer’s disease in 2012 after a couple of years of not knowing what was happening to her. The trouble with the diagnosis was that Cheryl was only 47, and dementia wasn’t even considered until things got really bad. I had ADT come in and install alarms if doors or windows were opened and they provided a camera so that I could watch to see what she was doing while I was at work.  I didn’t realize the stress I was carrying until my mom offered to stay with Cheryl.  My parents only live 40 minutes away and I start work at 6:30 a.m., so mom would come over on Sunday night and live with us. She took care of Cheryl during the day while I worked, and then stayed overnight so that she didn’t have to drive back to our house the next day. Mom did this for over a year until we were able to hire personal assistants to take care of Cheryl while I worked. A long time ago, when our children were little (we have two – Kara who is married to Ryan and lives in Indianapolis and Kevin who lives in West Chester, Pennsylvania), we were told that raising a child takes a village. Being a caregiver takes a village as well. We have relied heavily on our church family who has provided over 400 meals, lots of visits and volunteer time to sit with Cheryl – allowing me to get some windshield therapy. (Windshield therapy = going for a motorcycle ride to enjoy the freedom of not having anyone needing you for an hour or two). I would like to say that hiring the assistants solved all of our problems, but in my opinion, nobody could take care of Cheryl like I could. I struggled with allowing someone to come in and care for her, and it took several months for me to let someone else to care for her in ways that I couldn’t. I had no idea that I was a control freak, but the longer we are on this journey the more I realize that I want things a certain way, and I like to have things go my way. Things stopped going my way in July of 2012 when a nurse said to me: “I am so sorry for what you are about to go through”. The nurse was trying to tell me that it was going to get worse before it got better (if it really ever does). You see, I married the woman of my dreams. Cheryl and I met at church camp where we both worked for the summer. Long story short, we fell in love and married after I graduated from college. We truly had the perfect marriage. You may be wondering why this is important… Well, I have had several people tell me that they probably wouldn’t be able to do what I do for her. I don’t understand this way of thinking because I made two promises the day I married her.  I promised her that we would be together in sickness and in health until death do us part. When I made that promise, I meant it. I may have only been 22 years old, but I knew what it meant to make a promise – and that is what I am doing. The second promise I made was to a man that loved Cheryl more than a father could. He leaned into my ear in the receiving line and said: “you better take care of her.” I remember that day like it was yesterday, and I am doing everything I can to keep that promise to him. I have done many things to keep Cheryl comfortable and happy through this journey we’re on together. If you told me before the kinds of things I’d have to do for her, I would have said I couldn’t do it. But I did do them, and I have overcome things that I would’ve struggled to do for anyone else. After 31 years, I truly believe that there is nothing I wouldn’t do for her. For those people who are on the front end of the diagnosis, let me share a few things that I have learned both through my experiences and from others observations of our journey. Laughter truly is the best medicine.  Find the things that make you smile because there will be several things that make you sad, angry, confused, emotional and lonely. People will always ask “How are you?”  You will have about five seconds to determine if this is a generic question where “fine” will work or if they want to know how you are really doing.  You need to be ready to answer people when they ask the question. If you are not prepared you might tell an executive about Cheryl’s bowel movements before you realize what you are saying because that is what is on your mind and end up sharing way too much. Friends will ask “what can we do for you?”, “what do you need?”, and “are you taking care of yourself?” I struggle with these questions. I am the one that takes care of my family, and now that I am on this journey. I have realized that I can’t do this on my own. Asking for help is a problem I have. I believe it is called pride. You know when this started happening; I truly believed I had so many tokens of help.  Each time someone gave me help one of the tokens was taken out of the jar. Since I don’t know how long this journey is I was afraid I would run out of tokens. Guess what?  We are in year six and there are still tokens in the jar and our church, friends and family are still asking these questions. I still struggle with asking for help, but there is a website that the Alzheimer’s Association provides called “Lotsa Helping Hands” that allows me to post things I need help with and it goes out to everyone who at one time or another has asked one of these questions. We named our page Cheryl’s Helping Hands. Everyone (including myself) wants to know what the prognosis is. This is the answer I seek every day. When I talk to others who have been on this journey or are on this journey now, I compare their story with mine and try and figure out just where Cheryl is and how much time we still have together. Hospice came in three months ago and her decline is more obvious now. Hospice has been awesome at taking some of the caring responsibility away and tracking her progression. They are the partner I was looking for during this journey.  They can’t tell me what I want to know because no one can, but they are now on this journey with me and are helping me make the decisions that I was putting off because no one was holding me accountable. When will she stop knowing who you are?  This is what everyone thinks about when they hear about Alzheimer’s.  I was so afraid of the day when she would not know who I was.  That day came and went so quickly, but people still ask. My answer has always been: “I don’t know if she knows me or not but she trusts me.”  And I know that this is still true to this day because she allows me to do everything for her without any pushback. Crying is ok! Purging your emotions is better than keeping them inside. What will this do to you financially?  I don’t know. I prepared for the worst and hoped for the best.  There are not a lot of options for someone her age that has Alzheimer’s.  It is extremely difficult because I have to work full time, but I have found help. Early on, I worried about the financials, now I worry how to say goodbye. Why Cheryl?  Why Us? Why Me?   I don’t know, but I have a feeling that I am supposed to take what I am learning and share with others.  My Lord promises in 2 Corinthians 1:3-5 that He will come alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. I will close my story with the things I wish I knew about at the beginning of the Alzheimer’s journey: The medication will cause weight gain and does not cure Alzheimer’s.  Nothing does. Tell people what is happening. The Alzheimer’s Association is a huge help. Get involved in a support group as soon as you can. Don’t keep it in; tell people what is going on. Be honest with yourself and your friends. This is not about you, but it affects you in every aspect. Your friends want to help but don’t know how.  Allow them to help and think of ways to allow them to support you.  You will need them. It is going to get worse. There is no cure. (Yet!) Find something you love to do and find time to do it. Most everybody has been touched by Alzheimer’s. Let them tell you their story.

The holidays can be a challenging time for families coping with dementia. Planning ahead and knowing what to expect can make this time less stressful. It’s also important to adjust your expectations—don’t try to put too much on yourself or on the person with dementia. Planning ahead  Communication is key here. If you have people coming in from out of town you may need to clearly communicate with them regarding your caregiving situation, and what the person with dementia is and is not capable of. In the early stages of dementia, your loved one may seem to not have changed very If the person with dementia is in the later or middle stages, there may be significant changes since the last time the visitors saw him or her. These changes can be difficult to accept, and it can be helpful to prepare the visitors in advance so that they know what to expect. For example, if the person with dementia might not recognize them it can be less hurtful if they understand in advance that this is a part of the disease process. Don’t take on too much  Holidays can be stressful even without the added responsibility of being a caregiver. Do not be afraid of scaling back your celebration, and delegate, delegate, delegate. Clear communication is key here, as well. Consider scheduling a conference call with other family members to divide up responsibilities, and to set appropriate boundaries on what you can and cannot do. Consider scaling back to a smaller celebration to avoid overwhelming yourself and the person with dementia. Focus on meaning  Look for ways to involve your loved one in meaningful Celebrating in a facility  When a family member is in a residential facility, people often want to know if it is a good idea to bring them home for the holidays. Consider carefully if this is wise for you and for the person with dementia. Sometimes changes in routine can be upsetting for the person with dementia, and they may not do well in a crowd of noisy people. Think about joining your loved one at the facility in their holiday celebration. Take care of yourself  Be realistic about what you can and cannot do during this stressful time. Caregivers often feel guilty that they are not “doing enough” for the person with dementia and for their families. Holidays can make these feelings even harder to deal with when we have so many expectations about how things are supposed to be. Try to let go of these expectations, and give yourself some quiet time to grieve if you need to. As much as you can, focus on the moments

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. We want to honor the 15 million family and friends currently providing care for someone living with Alzheimer’s disease in the United States, including the nearly 590,000 Alzheimer’s caregivers right here in Illinois. In this article, we feature Verda Gochee, who is a caregiver for her husband who was recently diagnosed with the disease. We live with our 25-year-old son in rural DeKalb County in a century-old farmhouse that my husband’s family has owned for more than 100 years.  Our son is the 6th generation to live in that house.  We added a first-floor bedroom, bathroom with a shower, laundry and attached garage with an inside ramp to the house last year with the hopes of keeping my husband at home, where he would like to stay as long as possible. Darren is usually awake by 2 a.m. every day and wanting to see if the newspaper had been delivered yet.  He still looks at the paper but does not really comprehend as much of the information as he used to.  He is able to dress and shower by himself but, I can see him getting more anxious about these activities.  His day revolves around getting the newspaper, which is delivered at about 4:00 a.m. and the mail, which is delivered about 2:00 p.m. He has lost most of his concept of time, so he is frequently asking if it is time to get the newspaper or the mail. We have an elderly dog that we frequently take for walks, sometimes both of us and sometimes by ourselves.  We generally shop for groceries once a week and sometimes just go for a drive. We play “Sequence” most evenings.  Sequence is a board game played with two decks of playing cards. He usually matches the correct number and color, black or red, but often mixes up the suits, club for spade or heart for diamond.  Darren does fairly well when playing Mexican Train dominos with a small group of family. The Mexican Train dominos not only have spots but the spots are color coded to make it easier to match the number.  We play dominos with all train lines open. I try to do Suduko and Celebrity Decipher from the newspaper daily.  I read magazines but have found I fall asleep too easily to read novels anymore. Currently, I am managing the caregiving responsibilities without hired help.  When help becomes necessary, I’m afraid it is going to be difficult to keep paid help, especially in the wintertime because of our rural location.  The probability of being able to keep him at home through the course of this disease now seems very slim.  It will cost several thousand dollars a month to place him in a long-term care facility plus maintain our home. Our savings, which seemed like an adequate nest egg a few years ago, now seems to be waving goodbye as it will disappear quickly when Darren has to be placed in a care facility.”

17-year old Hinsdale Central High School Senior Arya Chawla tells us why she participates in Team Up. “I wanted to collaborate with my peers and other student leaders to create more awareness for Alzheimer’s disease, and also help in the Team Up is a student-focused fundraiser designed to promote brain health, spread awareness and raise funds through student-coordinated events or activities. It is flexible enough to be an on-going effort or a one-time occurrence and aims to motivate young people to get involved in the fight against Alzheimer’s disease. For More: http://www.alzheimers-illinois.org/teamup/ For more on Arya’s Music Uplifts program: https://aryachawla.com/music-uplifts