{"id":20740,"date":"2026-03-11T09:52:58","date_gmt":"2026-03-11T09:52:58","guid":{"rendered":"https:\/\/gpbookstore.org\/articles\/uncategorized\/5-lessons-from-a-long-term-alzheimers-caregiver\/"},"modified":"2026-04-10T06:10:41","modified_gmt":"2026-04-10T06:10:41","slug":"5-lessons-from-a-long-term-alzheimers-caregiver","status":"publish","type":"post","link":"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/alzheimers-and-dementia\/everyday-coping-for-caregivers\/5-lessons-from-a-long-term-alzheimers-caregiver\/","title":{"rendered":"5 Lessons from a Long-Term Alzheimer&#8217;s Caregiver"},"content":{"rendered":"<p>A decade ago, Alzheimer\u2019s disease wasn\u2019t on my radar. My husband, Bob, and I were in our fifties, immersed in our careers. He was a local radio and television personality, and together we had built an Emmy Award\u2013winning video production company. Our two boys were working, with our youngest just a year shy of college graduation.<\/p>\n<p>In 2012, Bob received a shocking diagnosis: probable <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/living-longer-living-better\/managing-early-onset-alzheimers-challenges-couple\/\" target=\"_blank\" rel=\"noopener\">Alzheimer\u2019s<\/a>. He was 58. There was no family history of dementia; he\u2019d never had a head injury. I couldn\u2019t fathom how this could happen or how our lives would change.<\/p>\n<p>Nine years later, I can emphatically say that Alzheimer\u2019s has brought us challenges <em>and <\/em>joys. It drew us closer. Even when a spouse has dementia, you can still have a productive and loving life together. Here are the five most important lessons I\u2019ve learned as a long-term caregiver.<\/p>\n<p><strong>Ask for Help<\/strong><\/p>\n<p>Alzheimer\u2019s often causes the person who has it, as well as those who take care of them, to shrink from sight. Friends sometimes pull away too. It can be awkward communicating with someone who has dementia. There\u2019s a loss of shared events or mutual responsibilities, even a fear of facing one\u2019s own mortality.<\/p>\n<p>Because Bob was in the public eye, I knew he would likely lose his jobs if word got out. To give me time to plan, I told almost no one.<\/p>\n<p>We\u2019d just moved into a new home when Bob was diagnosed. My coworkers and friends would ask: \u201cHow\u2019s the new neighborhood?\u201d \u201cFind any new restaurants?\u201d \u201cGot all those boxes unpacked?\u201d I wanted to shout, \u201cOur lives are falling apart, and I don\u2019t know what to do!\u201d<\/p>\n<p>As Bob\u2019s condition worsened, I finally confided in more people. What a relief! I got better at <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/advice-for-caregivers\/how-to-ask-others-for-help-with-caregiving\/\" target=\"_blank\" rel=\"noopener\">asking for help<\/a>. I used social media to find people to show me how to fix blocked drains and reglaze windows. Our church\u2019s women\u2019s group brought us meals. I launched a Facebook page to keep old friends and colleagues informed, which elicited offers to take Bob out. (One friend even took him to the Indy 500!)<\/p>\n<p>Two of Bob\u2019s coworkers began an annual tradition of helping me <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/advice-for-caregivers\/a-caregivers-guide-to-the-holidays\/\" target=\"_blank\" rel=\"noopener\">wrap my Christmas gifts<\/a>. As Bob\u2019s Alzheimer\u2019s progressed, I brought in a volunteer to provide respite care and eventually day centers and paid caregivers. Each stage of dementia requires new knowledge and help, so even if you start alone, build your team around you. That\u2019s how you survive well. You can\u2019t do this alone.<\/p>\n<p><strong>Welcome Something Good into Your Life<\/strong><\/p>\n<p>A terminal disease crowds out everything else. Dreams dissolve. Unknowns loom large. New demands on your time and wallet make leisure activities seem impossible.<\/p>\n<p>Other than for work and necessities, I barely left the house during the first nine months after Bob\u2019s diagnosis. Finally we went to our first <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/alzheimers-and-dementia\/everyday-coping-for-caregivers\/youre-not-alone-alzheimers-support-groups-can-help\/\" target=\"_blank\" rel=\"noopener\">support group<\/a> meeting of families afflicted with early-onset Alzheimer\u2019s. Month after month we met, sharing invaluable life lessons. Then a novel idea emerged. What if we got together as a group <em>without <\/em>Alzheimer\u2019s as our focus? What if we all just went out and had some fun?<\/p>\n<p>I\u2019ll always remember our group outing to the art museum. Spouses joked and laughed. And, yes, just like when we were young parents, more than once we had to pull our loved ones back from touching the art. (Dementia steals inhibitions as well as memories.) We capped off our group date with a bite to eat at a caf\u00e9. For a few hours, we felt carefree and alive again. No one was surprised at our parting words, \u201cWhen\u2019s our next date?\u201d<\/p>\n<p><strong>Create Your Own Answers<\/strong><\/p>\n<p>How do you keep your loved one engaged while you take some time for yourself? I still needed to work part-time outside the home, plus find a few hours to recharge my batteries.<\/p>\n<p>Conversations with four fellow caregivers about grandchildren led us to a unique solution. \u201cWhat if we created a sort of p<a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/caregiver-stress\/where-to-find-the-right-caregiver-support-group\/\" target=\"_blank\" rel=\"noopener\">laygroup for our guys<\/a>? They already know and like each other.\u201d \u201cOh, I\u2019ve got a house full of craft items. I could come up with a weekly art activity.\u201d \u201cLet\u2019s take turns providing dinner too.\u201d \u201cI\u2019ll bring a movie!\u201d And so our Forget-Me-Not co-op was born, giving us four hours of respite weekly.<\/p>\n<p>Two couples offered their homes, and one spouse (we took turns) stayed with our loved ones each week, assisted by an aide for whom we split the cost. It was heavenly, even when all I did was sit in a coffee shop or take a nap. Later, when our spouses needed more extensive care, facility managers marveled at what we\u2019d done on our own. Don\u2019t let roadblocks send you careening off your caregiving path. Find a way around.<\/p>\n<p><strong>Re-Examine\u2014and Release\u2014Expectations<\/strong><\/p>\n<p>I\u2019ve always been an overachiever. In school. In my work. Even volunteering. I accomplished a lot, but it wasn\u2019t always healthy.<\/p>\n<p>It\u2019s no surprise that I was overwhelmed trying to handle all my new Alzheimer\u2019s caregiver duties. Now, besides my household roles, I took over responsibility for my husband\u2019s duties as he became more confused. There were also new demands: researching the disease and possible treatments, evaluating legal and financial impacts, looking for help. I was working all the time, <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/caregiver-stress\/7-self-care-tips-for-caregivers\/\" target=\"_blank\" rel=\"noopener\">exhausted and on edge<\/a>.<\/p>\n<p>One morning, I woke up to a snow-covered driveway. Ugh. I\u2019d have to shovel it before driving Bob to his day center. I pulled on my coat and gloves, grumbling. Imagine my surprise as Bob came outside to help me! But my joy faded quickly. Each time I shoveled a path across the driveway, Bob came alongside, throwing new snow right on the section I\u2019d cleared.<\/p>\n<p>We were already late. I yelled at him for getting in my way. He yelled back, mirroring my anger but also amplified by hurt. Bob refused to get in the car once the snow was finally cleared. So much for being timely.<\/p>\n<p>Why was I rushing? We could have been late with no major consequences. Why did I admonish Bob instead of appreciating his desire to help? We could have stopped to have a snowball fight or make snow angels. But my expectations of completing the task, of staying on schedule, got in the way of our relationship. They made us both feel worse in that moment.<\/p>\n<p>I learned a <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/caregiver-stress\/5-ways-to-stay-positive-as-a-caregiver\/\" target=\"_blank\" rel=\"noopener\">valuable lesson<\/a>. The next time Bob left the kitchen faucet running after trying to wash a few dishes, I didn\u2019t say a word. Well, actually, I said four: \u201cThank you for helping.\u201d<\/p>\n<p><strong>Overcome Stigma <\/strong>There will be plenty of uncomfortable situations that you\u2019ll have to deal with. Store clerks and restaurant workers may be puzzled by your loved one\u2019s behavior. They might think you\u2019re being bossy or overbearing when you answer or order for the person with dementia. Simply saying your loved one has memory issues can turn the encounter into a positive learning experience.<\/p>\n<p>It might be difficult for your loved one to neatly use the restroom or even remember why they\u2019re in there. There\u2019s a whole world of super-strength incontinence products out there to help. Whenever we went out, I\u2019d ask about the nearest <a href=\"https:\/\/gpbookstore.org\/articles\/positive-living\/health-and-wellness\/caregiving\/family-caregiving\/aging-parents\/how-to-plan-for-your-familys-future-caregiving-needs\/\" target=\"_blank\" rel=\"noopener\">family bathroom<\/a> so we could go in together. If they didn\u2019t have one, I\u2019d ask the manager if they preferred we use the men\u2019s or women\u2019s room, then just announce ourselves loudly upon entering. Crisis averted.<\/p>\n<p>Trips to the grocery store could be an adventure. One time, I was busy surveying the fruit and veggies only to realize Bob was no longer beside me. He had wandered away and was standing alongside two young men who were talking with a young girl, probably a daughter of one of them. I could see looks of confusion\u2014and concern\u2014as they noticed my husband happily listening in.<\/p>\n<p>I didn\u2019t panic. I walked over and explained that this friendly stranger had Alzheimer\u2019s. \u201cHe often seeks out people much more interesting than me!\u201d I said. We all laughed, they learned a bit about Alzheimer\u2019s, and the shopping trip continued without incident. Until the next time someone walked by with an interesting T-shirt or inviting smile!<\/p>\n<p>With <a href=\"https:\/\/gpbookstore.org\/articles\/cat-tell-us-your-story\/celebrity-stories\/marcia-gay-harden-on-coping-with-her-mothers-alzheimers\/\" target=\"_blank\" rel=\"noopener\">Alzheimer\u2019s<\/a>, our lives in our sixties are very different from what we\u2019d once dreamed of. Still I thank God for every moment he has given Bob and me to share. This isn\u2019t the journey we would have chosen, but it\u2019s no less meaningful, because Bob and I are on it together.<\/p>\n<\/p>\n<p><em>For more inspiring stories, subscribe to <\/em><a href=\"https:\/\/www.shopguideposts.org\/magazines\/guideposts-magazine.html\" target=\"_blank\" rel=\"noopener\"><strong>Guideposts<\/strong><\/a> <em>magazine<\/em>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A decade ago, Alzheimer\u2019s disease wasn\u2019t on my radar. My husband, Bob, and I were in our fifties, immersed in our careers. He was a local radio and television personality, and together we had built an Emmy Award\u2013winning video production company. Our two boys were working, with our youngest just a year shy of college [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":29039,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"ep_exclude_from_search":false,"footnotes":""},"categories":[385],"tags":[243,210],"ppma_author":[1190],"class_list":["post-20740","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-everyday-coping-for-caregivers","tag-alzheimers","tag-caregiving"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.6 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>5 Lessons from a Long-Term Alzheimer&#8217;s Caregiver - Guideposts Articles<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"5 Lessons from a Long-Term Alzheimer&#8217;s Caregiver\" \/>\n<meta property=\"og:description\" content=\"A decade ago, Alzheimer\u2019s disease wasn\u2019t on my radar. My husband, Bob, and I were in our fifties, immersed in our careers. He was a local radio and television personality, and together we had built an Emmy Award\u2013winning video production company. 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