Our lost year. Looking back, that\u2019s what I consider it, that first year after my husband was diagnosed with Alzheimer\u2019s. A gerontologist at the Cleveland Clinic broke the news to us one afternoon in January 2012. \u201cBob has what\u2019s known as early-onset Alzheimer\u2019s,\u201d he told us.<\/p>\n
I was stunned. Yes, Bob had been having some memory lapses and uncharacteristic moments of anger\u2014worrisome enough that he\u2019d undergone neurological testing at the clinic\u2014but I thought it was because he was spreading himself too thin with work, volunteering and his Bible study at church. He\u2019d never had major health issues. There was no history of dementia in his family. And he was only 58!<\/p>\n
FOR MORE INSPIRING STORIES, SUBSCRIBE TO GUIDEPOSTS MAGAZINE<\/em><\/a><\/strong><\/p>\n You\u2019ve probably heard people say 60 is the new 50. Bob and I definitely felt that way. We were in the prime of our lives. Our two sons were grown, and this was supposed to be our time to pursue our own interests. There was still so much we wanted to accomplish.<\/p>\n That\u2019s why both of us worked multiple jobs. Bob loved his career in broadcasting. He had a number-one-rated radio talk show on WTAM every Saturday morning. Once a week he hosted the Ohio Lottery drawing on live TV\u2014everyone in Cleveland knew him for that.<\/p>\n I was a manager for a nonprofit organization that served refugees resettling in our area. Then there was the creative work we were proudest of\u2014the videos and award-winning documentaries we made together.<\/p>\n Even though we were partners, we each focused on the aspects of the business that we did best. I handled the research and writing. Bob was the cameraman, editor and all-around tech guy.<\/p>\n Whoever was most passionate about a particular project would take the lead on it. I was in charge of a documentary about the stories in quilts. Bob drove the ones about baseball in Cleveland. Our offices were across the hall from each other, but we got together when we needed to.<\/p>\n That was also the secret to our successful marriage of 37 years: Each of us was able to maintain independence and find fulfillment within our partnership. We weren\u2019t attached to traditional roles in our marriage.<\/p>\n READ MORE: TAKING CARE OF YOURSELF AS YOU CARE FOR OTHERS<\/strong><\/em><\/a><\/p>\n Bob always encouraged me to pursue my professional goals, and he didn\u2019t shy away from housework or taking care of the boys. He was even willing to put my career ahead of his. When I was working with a nonprofit based in Washington, D.C. (and commuting there regularly), our older son was in kindergarten only half days. Bob watched him the rest of the day so I could focus on my job.<\/p>\n Honestly, Bob was more of a natural caregiver than I was. He was that ideal mix of optimistic, dependable and easygoing. Nothing ever seemed to faze him. If the boys acted out, if some glitch happened on air, if I got aggravated, Bob rarely showed a hint of frustration (that\u2019s why I got concerned that he\u2019d started yelling lately when he misplaced something or couldn\u2019t load a program).<\/p>\n I wasn\u2019t even-keeled like that. I was prone to worrying, overthinking things and getting overwhelmed.<\/p>\n Which was exactly what happened after Bob received his diagnosis.<\/p>\n \u201cI can\u2019t say with certainty how quickly his memory and cognitive abilities will decline,\u201d the Cleveland Clinic specialist continued. \u201cEvery patient is different. There are medications that may slow the disease. But there will come a point\u2014sooner rather than later\u2014when Bob won\u2019t be able to work. Eventually he will likely need full-time care.\u201d<\/p>\n Bob nodded, looking pensive. Did he understand the ramifications of what the doctor was saying? I couldn\u2019t tell.<\/p>\n I felt sick. The work Bob loved depended on his verbal fluency and quick thinking. How incredibly cruel that those were the skills Alzheimer\u2019s was already eroding. Even someone as easygoing as Bob would be devastated to lose the career he\u2019d devoted himself to for decades. And if he broke down, that would break me.<\/p>\n The drive home was a blur. It was only mid-afternoon but I went straight to bed. I didn\u2019t want to move. Didn\u2019t want to think about what was going to happen to Bob, to us.<\/p>\n Bob sat beside me and held my hand. \u201cWhat\u2019s wrong?\u201d he asked. There he was, putting me first, trying to take care of me, like always. That made me feel even worse. I pressed my face into my pillow. I wanted to be alone with my tears. But I couldn\u2019t tell Bob that.<\/p>\n Soon after, I told my boss I needed to take an indefinite leave of absence. I felt I had to fill him in on Bob\u2019s diagnosis, but I kept it a secret from everyone else. If Bob\u2019s condition became public knowledge, I was pretty sure he\u2019d be let go. Our health insurance came through his job with the lottery, and we couldn\u2019t afford to lose it or our primary income just yet. I had to come up with a plan.<\/p>\n READ MORE: HOW TO AVOID CAREGIVER BURNOUT<\/strong><\/em><\/a><\/p>\n But I couldn\u2019t. I was paralyzed by anxiety and depression, unable to figure out what to do first. Should we try to work more while Bob was still able, to build a financial cushion? Or less, because of the added stress? What were our medical choices? What were we legally bound to tell Bob\u2019s employers?<\/p>\n Bob was happy most of the time. He never missed his weekly Bible study. He was still going to work at the television studio and the radio station. I was thankful for that. But part of me was waiting for the other shoe to drop. When would he make a mistake on the air? Would he end up being publicly humiliated? I could tell he wasn\u2019t quite on top of everything\u2014could others?<\/p>\n Meanwhile, I was barely functioning. Some days I would lie in bed, replaying what the doctor had told us. Sooner rather than later. <\/em>Those words echoed in my head like a death knell. The death of the future Bob and I had imagined. The death of the wonderful, creative work we did together. It was as if I were grieving an incalculable loss, one that hadn\u2019t happened yet but I knew was inevitable.<\/p>\n I couldn\u2019t talk to Bob about it. Our sons knew about his diagnosis, but I didn\u2019t want to burden them with my issues too. I couldn\u2019t tell our friends what was going on. I\u2019d never felt so alone.<\/p>\n One evening Bob came home from drawing the lottery numbers and found me crying. His cheerful expression collapsed. \u201cYou\u2019re sad all the time, Luanne,\u201d he said. \u201cHow come I can\u2019t make you feel better?\u201d<\/p>\n His distress cut through the haze I\u2019d been living in. These days Bob\u2019s mood was heavily influenced by mine. No matter how sad I felt, I couldn\u2019t let depression overwhelm me. I couldn\u2019t bring him down.<\/p>\n READ MORE: A MOTHER CARING FOR A MOTHER<\/strong><\/em><\/a><\/p>\n My most important job now was to be Bob\u2019s caregiver. Not something that came easily or naturally to me. God, help me to be the kind of partner Bob has always been in our marriage, <\/em>I asked. To put him first. To give him the care, comfort and love he needs.<\/em><\/p>\n I went into research mode. I looked up everything I could online. I called the local chapter of the Alzheimer\u2019s Association. The woman who answered told me Bob could qualify for Social Security through a program that extends benefits to people with chronic diseases. She took down our address to send us some brochures.<\/p>\n \u201cWe also have a support group for people with early-onset Alzheimer\u2019s and their spouses,\u201d she said. \u201cYou could get a lot of good information there.\u201d<\/p>\n A support group? I didn\u2019t think I could handle sitting around talking about our problems. I\u2019d just get more depressed. I needed to be active, to do something.<\/p>\n From what I\u2019d read, activity would be good for Bob too. That became even more imperative when he lost his job at the radio station as part of a companywide downsizing in March 2012. Then the lottery decided not to renew his contract.<\/p>\n That was somewhat of a relief because I didn\u2019t have to worry so much about hiding his condition. I searched for ways to fill Bob\u2019s day productively, especially while I was at work (I had gone back part time).<\/p>\n I looked into an adult day-care program. The people there were in their seventies and eighties. Bob wouldn\u2019t be into playing bingo and singing songs from our parents\u2019 generation. The Alzheimer\u2019s program at a local nursing home was more promising\u2014people took turns reading aloud and doing simple math problems to maintain cognitive function. Unfortunately it was only for nursing-home residents.<\/p>\n I looked for volunteer work Bob could do, like walking dogs at the animal shelter. But it was too complicated for him to learn which dogs were safe to walk and how to record the walks in a log.<\/p>\n READ MORE: BIBLE VERSES FOR ALZHEIMER’S CAREGIVERS<\/span><\/strong><\/em><\/a><\/p>\n We began to tell friends about Bob\u2019s Alzheimer\u2019s. They were really supportive, but it wasn\u2019t as if they were free during the week to spend time with him. They had demanding jobs. They were still in the prime of their lives.<\/p>\n That might have been the biggest challenge\u2014transitioning from a very busy, work-focused lifestyle to a much slower one with little stimulation. I couldn\u2019t come up with enough activities to keep Bob occupied. Sometimes I felt trapped at home, and then I felt guilty, as if I was failing as a caregiver. His Bible study was the one respite I got each week.<\/p>\n Going through the materials the woman at the Alzheimer\u2019s Association had sent I came across a note about the support group she\u2019d mentioned. Bob was a people person. He might enjoy the social interaction. At least it was something new we could try.<\/p>\n The group met at a senior center. \u201cI\u2019m so glad you\u2019re here,\u201d Sally, the coordinator, said. \u201cLet me introduce you to everyone.\u201d<\/p>\n Bob was way ahead of her. He went up to a man sitting at a table and stuck out his hand. \u201cI\u2019m Bob Becker,\u201d he said. \u201cNice to meet you.\u201d<\/p>\n The man\u2019s eyes widened. \u201cI know that voice,\u201d he said. \u201cYou\u2019re really him! Bob Becker. I can\u2019t believe it. I\u2019ve been listening to you for years.\u201d<\/p>\n Bob sat down next to him. His whole persona seemed to brighten. We hadn\u2019t been here two minutes and already he\u2019d connected with someone.<\/p>\n There were about 15 of us. Sally asked those with Alzheimer\u2019s, almost all men, to sit in a circle with their spouses behind them. She made eye contact with each of the men and asked, \u201cTell me something funny you\u2019ve heard.\u201d<\/p>\n \u201cMy doctor said, \u2018If you\u2019re going to write that novel, now\u2019s the time,\u2019\u201d one man said, chuckling.<\/p>\n \u201cYou have to laugh,\u201d another man said. \u201cThere\u2019s just so much great material.\u201d<\/p>\n Bob leaned forward, listening, engaged in the conversation.<\/p>\n I looked on in wonder. These men weren\u2019t being ignored, talked down to or pitied. The focus was on them, and they were responding. They felt accepted. Valued.<\/p>\n We moved on to how we could better communicate with our spouses. Tips like speaking in a calm, soothing voice. Going slowly, using simple sentences, not paragraphs. Asking what they wanted to do instead of deciding for them. It was so freeing to let down my guard and discuss my struggles openly.<\/p>\n The other couples talked about activities they did together, trips they were taking. Of course there was frustration. Heartache, even. But their lives weren\u2019t over. Far from it.<\/p>\n Hope surged through me for the first time since Bob\u2019s diagnosis. We weren\u2019t alone in this. I could learn from the others in our group and be the caregiver my husband needed. We could live again.<\/p>\n And we have. Just a few days after that meeting, Bob and I went to the zoo. We hadn\u2019t been there since our boys were little. We took our time, strolling hand in hand, like teenagers on a date. Bob took it all in, laughing at the monkeys\u2019 antics, counting the penguins, reading aloud the fun facts that were posted. <\/p>\n At each fork in the path, I asked him what he wanted to see next. It was a wonderful day. I didn\u2019t feel like a caregiver. I felt like a wife.<\/p>\n We\u2019ve gone so many places since then, sometimes with friends from our support group, sometimes just the two of us. The art museum. The Rock and Roll Hall of Fame. Bowling. Bob and I even took our dream trip to Alaska.<\/p>\n We\u2019re more active now than before the diagnosis. We volunteer together, delivering meals to the elderly. Once a week, we visit that nursing home with the innovative Alzheimer\u2019s program, where I work with two residents and pick up techniques I use with Bob at home.<\/p>\n I no longer feel trapped, even as Alzheimer\u2019s takes its inexorable toll. Bob rarely speaks now. He\u2019s more easily agitated. We rely on our faith even more to bring us peace. Before breakfast, we read from God Still Remembers Me, a book of devotions written by Paul Hornback after he was diagnosed with early-onset Alzheimer\u2019s.<\/p>\n We listen to music: the Beatles, the Who, Peter Gabriel. Sometimes we hold each other and sway to the beat. These little moments are when I feel closest to Bob, as close to him as I have ever felt.<\/p>\n \u201cYou two seem more like a married couple now than before,\u201d a friend said recently.<\/p>\n I know what she means. Bob and I have lost so much to Alzheimer\u2019s. It truly is a devastating disease. Yet it has also been an unexpected blessing. Instead of each of us running off on our individual pursuits, we have had this time together to discover a new way to love. And to live.<\/p>\n Learn how to capture and preserve memories for your loved one.<\/strong><\/em><\/a><\/p>\n