Then she noticed the caregivers who waited 90 minutes once a week while their loved ones participated in one of UConn\u2019s six aphasia language support groups. Most of them were women thrown into the job of full-time caregiver for mostly husbands who\u2019d suffered a stroke and now were struggling to communicate.<\/p>\n
\u201cThey would ask me, \u2018Can we have a caregiver group,\u2019 and I kept telling them I\u2019m not trained for that,\u201d Mozeiko says. \u201cI didn\u2019t grasp at the time just how essential caregiver education and the caregiver themselves are to the rehabilitative process. But, of course, it\u2019s not just the person who had the stroke, it\u2019s the entire family who is in crisis mode, and it\u2019s critical that they have a place to vent, swap stories, and strategize because the medical system provides so few answers. Caregivers need to learn from each other.\u201d<\/p>\n
Much the same as a caregiver of someone with any life-changing diagnosis \u2013 like Alzheimer\u2019s, cancer, or mental health issues \u2013 the better equipped an aphasia caregiver is, the better the quality of life for everyone involved, Mozeiko says, and the better the chance for some level of recovery.<\/p>\n
But such holistic treatment isn\u2019t commonplace.<\/p>\n
\u201cI\u2019ve heard from recent graduates that working with the caregiver to help maximize outcomes was not part of their aphasia classes. It\u2019s not even systematized in research. Our field is relatively new – compared to psychology, for example – and there\u2019s so much to do, that researchers tend to prioritize treatment variables or mechanism of recovery versus what\u2019s happening at home and how we might facilitate better recoveries that way,\u201d she says.<\/p>\n
Then Mozeiko noticed the caregivers in the waiting room.<\/p>\n
The trajectory of her research changed. She started to realize that if caregivers and family members felt supported, those in their care would be as well. In 2018, she carved out 90 minutes once a month \u2013 concurrent to one of the language support groups \u2013 solely for caregivers.<\/p>\n
And now, those caregivers have endeavored to spread their reach.<\/p>\n
\u2018You\u2019re in shock and there is no guidance whatsoever\u2019<\/strong><\/p>\n Deborah Yost woke one morning in August 2018 to find that her husband Byron, an attorney in solo practice in Pennsylvania, had a stroke at some point overnight, leaving him unable to walk and talk \u2013 except for the word \u201cright,\u201d which he used to answer whatever question asked of him.<\/p>\n Suddenly, Yost was in the position of medical decisionmaker and head of the household, while mourning the loss of her best friend, or at least the conversations and verbal connection the two once shared.<\/p>\n \u201cWhen your loved one has a stroke, you don\u2019t know what to do. You\u2019re in shock, you\u2019re dealing with medical personnel and they\u2019re telling you all these things about your loved one and there\u2019s no guide, no directory that tells you to look into this or that,\u201d she says. \u201cThere is no guidance whatsoever.\u201d<\/p>\n Books about the physical aspects of a stroke \u2013 what happens in the brain during and after a stroke, the potential effects, and prognosis \u2013 only give caregivers some of the information they need, Yost says.<\/p>\n There\u2019s so much more that goes into caring for someone with aphasia, well beyond the already daunting task of figuring out a way for them to convey basic needs, never mind coping with whatever physical limitations they might be left with.<\/p>\n In Yost\u2019s case, because Byron would say only \u201cright,\u201d she had to deduce log-in information for their personal financial accounts and bills \u2013 things he\u2019d been responsible for and things that needed attention. She moved them to Connecticut to be closer to family, selling their dream home in Pennsylvania and moving into a one-floor abode to accommodate his ongoing mobility issues.<\/p>\n She also had to close out his law practice that included many active clients still wanting his advice and courthouses expecting his attendance for cases. Yost built a career in special education- she has a master\u2019s degree from UConn in 1982 and a Ph.D. in 1996 – and relied on the help of other attorneys to manage.<\/p>\n \u201cI\u2019d visit him every day in the hospital and in rehab, and I watched the therapies they were using with him. The last four days before he was to be discharged, they gave me some training \u2013 how to help him in the bathroom and maneuver a wheelchair,\u201d Yost says, noting the difficulty of moving a 6-foot-tall man when one is only 5 feet tall.<\/p>\n But, she continues, \u201cyou\u2019re all by yourself. Everybody is there caring for my husband, which is appropriate, but there was nobody saying to me, \u2018Let me help you make some of these decisions you have to make,\u2019 like which rehab hospital to go to, which support services he might need.\u201d<\/p>\n Once in Connecticut, she found UConn\u2019s aphasia group, connected Byron with language services there, and met Mozeiko and the caregivers in the waiting room.<\/p>\n \u201cWhen we were meeting in our support group, it was like, \u2018Thank God, someone understands what we are going through.\u2019 The only people who can really understand are the people who are going through it,\u201d she says.<\/p>\n Aphasia: Getting the Brain to Rewire is Key to Some Level of Recovery<\/strong><\/p>\n Aphasia is a common outcome from a stroke, with a third of people ending up with the communicative disorder that varies by person in degree and expression.<\/p>\n Mozeiko says some people seem unaware they\u2019re speaking unintelligibly, while others know they have only a few words and phrases at their disposal. Still others appear to speak normally, although their sentences might be shorter and their cadence slower.<\/p>\n Some symptoms can abate once swelling from the stroke goes down, but neural death and damage cause lasting effects for life, if only subtly after intense therapy, she adds. That doesn\u2019t mean, however, that quality of life is forever degraded.<\/p>\n Mozeiko\u2019s previous research looked at intensive therapies \u2013 three hours a day of intervention, every day for two weeks \u2013 and noted significant gains among patients: \u201cIt\u2019s not like they\u2019re fixed. You wouldn\u2019t say, \u2018Wow, he\u2019s all better.\u2019 We had one client who could not keep track of a conversation. His family felt like he never had any idea what was going on. After treatment, they remarked that he seemed to be plugged in. His verbal language wasn\u2019t much better, but he was enjoying being part of his family and his church again.\u201d<\/p>\n Yost loves the word neuroplasticity because it refers to the way the brain can rewire itself with the right interventions and work. Four years after his stroke, Byron still gets speech and language services \u2013 a remarkable amount of time because some people get as few as six weeks and others even less.<\/p>\n A neurologist once said Byron would never walk or talk again. Yet, Yost tells the story that recently he indicated he wanted to stay up late one night and in telling her so started the sentence \u201cI want to\u2026\u201d \u201cWhat verb goes along with TV,\u201d she says she asked. \u201cIt took him awhile but then he said, \u2018I want to watch TV.\u2019 That was a big win.\u201d<\/p>\n And that is four years after the stroke left him with the ability to use only the word \u201cright.\u201d<\/p>\n \u201cJust as disappointing are doctors who say the opposite and tell patients, \u2018You\u2019ll be fine in a year,’\u201d Mozeiko says. \u201cI had someone come to me a year after her stroke to ask what was going on. The doctor had told her she would be fine in a year. That\u2019s just unrealistic. Everybody is different. Some people make unbelievable gains despite huge lesions in their left hemisphere and some with small, discrete lesions make very slow progress and don\u2019t make the recoveries you might expect.\u201d<\/p>\n Mozeiko and her graduate students in the aphasia lab tend to work with those who have stroke-induced aphasia. That\u2019s different than primary progressive aphasia, she explains, which falls into the same category as dementia because those with it tend to continually decline.<\/p>\n Stroke-induced aphasia can be described simply as a loss of communicative abilities, whereas primary progressive aphasia might start with aphasia-like symptoms but often goes on to affect cognition, like Alzheimer\u2019s disease.<\/p>\n One stroke-induced patient, a 23-year-old who\u2019d just gotten his dream job as a police officer when he had a cerebral hemorrhage, had a grim prognosis, Mozeiko says. But he\u2019s made so much progress over the two decades he\u2019s been in therapy that he now volunteers, socializes, and drives with adaptive technology.<\/p>\n \u201cAphasia is a lifetime diagnosis, but it can get much better,\u201d Mozeiko says. \u201cOne of the big misconceptions out there is that after three months or a year, you can\u2019t make any more progress. There are still neurologists telling their patients that and that leaves people with the fear they\u2019re going to be like this for the rest of their lives.<\/p>\n \u201cThey can continue to make quite a bit of progress for many years,\u201d she continues. \u201cBut everybody\u2019s different in how they get there and how quickly they improve. Those who do best tend to be the most motivated. They need to want it. They also often have a family support system behind them.\u201d<\/p>\n That\u2019s where support groups come in.<\/p>\n Yost says Byron loves to go to his aphasia group and comes out laughing and happy. For her, the caregiver group, which now meets weekly, is just as beneficial.<\/p>\n \u201cIf it wasn\u2019t for these aphasia groups and the little tips you learn along the way about how to help your spouse or loved one at home with aphasia, I don\u2019t know if I\u2019d be doing these little tricks. I don\u2019t think I would know enough to do them,\u201d she says.<\/p>\n \u201cIt\u2019s so valuable for people with aphasia to come in and see lots of other people with aphasia,\u201d Mozeiko adds. \u201cMost never heard the word until they were diagnosed, so I think that\u2019s the No. 1 thing. They\u2019ve lost the ability to communicate but not to think intelligently. These are people who had amazing jobs and, because language is how our intelligence is judged, suddenly they\u2019re being perceived differently, maybe as dumb. That\u2019s a horrible feeling. To come into a room and see people with varying degrees of severity is really affirming.\u201d<\/p>\n Personal Stories Become Book Project<\/strong><\/p>\n The caregiver support group has given those in the waiting room a place to drop the fa\u00e7ade that many feel needs to go up to be supportive and on pointe around their loved one.<\/p>\n There, they can breathe, inadvertently \u2013 or sometimes outright \u2013 giving each other advice on how to handle situations or other ways to cope. Yost, as a retired college professor used to taking command of a group, has taken on the role of its leader.<\/p>\n \u201cWe were all sitting around in March 2020, I remember it so well, Jen was cleaning off the tables because COVID had just started and we weren\u2019t sure what this pandemic was at the time,\u201d Yost says. \u201cWe were just chatting as we usually do about everything \u2013 what we\u2019re doing with our loved ones, problems we\u2019re having. Then one of the women said, \u2018We really should write a book,\u2019 and all of us said, \u2018Yes, we could write a book because there is so much to say.\u2019\u201d<\/p>\n Mozeiko says she contacted a few others who over the years had made the same comment to her and they agreed to participate, suddenly building a roster of seven women who were willing to write essays about their experiences.<\/p>\n \u201cCaring For a Loved One with Aphasia After Stroke\u201d<\/a> (Springer) became their pandemic project.<\/p>\n \u201cMost of the women who contributed had never written anything professionally before writing these beautiful stories about their loved ones,\u201d says Mozeiko, who together with Yost served as the book\u2019s editors. \u201cWe really worked to keep the editing to a minimum to preserve their own voices, their own personalities.\u201d<\/p>\n Chapters tell stories of devotion, fortitude, love, adjustment, stress, hope, sacrifice, and partnership.<\/p>\n \u201cOur caregivers said they were looking for this kind of book and there wasn\u2019t one out there, until now,\u201d Mozeiko says. \u201cThe hope is somebody will read this and maybe they don\u2019t identify with one essayist, but maybe they identify with the next one.\u201d<\/p>\n Some of the tips shared might be as simple as playing the radio to fill the silence of a long quiet car ride without conversation. Others are more creative, like teaching the concept of small, medium, and large by using pieces of old wooden pallets and fitting them together like a puzzle \u2013 do you need a small, medium, or large piece to fill this space.<\/p>\n \u201cIf I had a book like this when Byron had his stroke, I would have really felt like I could manage because other people have,\u201d Yost says. \u201cOur whole purpose in writing this was to provide our stories to people in the same position we were in and remind speech-language pathologists or other professionals of the importance of the caregiver\u2019s state of mind, because nobody really asks the caregiver, \u2018How are you doing today?\u2019 It\u2019s all about the patient and we really felt that we needed to share our stories for those people.\u201d<\/p>\n <\/p>\n All proceeds from the sale of \u201cCaring For a Loved One with Aphasia After Stroke\u201d are given to UConn\u2019s Aphasia Language-Support Program<\/a> via the UConn Foundation<\/a>. Several of the essayists participated in a panel talk before the 2022 American Speech-Language-Hearing Association conference, sharing their stories and impressing on professionals the importance of supporting both the patient and the caregiver<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" ‘The only people who can really understand are the people who are going through it’ <\/p>\n","protected":false},"author":160,"featured_media":200511,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_crdt_document":"","wds_primary_category":0,"wds_primary_series":0,"wds_primary_attribution":0,"footnotes":""},"categories":[2226,1715,2231,2235,2227],"tags":[],"magazine-issues":[],"coauthors":[2368],"class_list":["post-200475","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clas","category-community-impact","category-health-well-being","category-today-homepage","category-uconn-edu-homepage"],"pp_statuses_selecting_workflow":false,"pp_workflow_action":"current","pp_status_selection":"publish","acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-05-30 17:45:19","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/200475","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/users\/160"}],"replies":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/comments?post=200475"}],"version-history":[{"count":16,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/200475\/revisions"}],"predecessor-version":[{"id":200900,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/200475\/revisions\/200900"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media\/200511"}],"wp:attachment":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media?parent=200475"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/categories?post=200475"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/tags?post=200475"},{"taxonomy":"magazine-issue","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/magazine-issues?post=200475"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/coauthors?post=200475"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![\"Photo](\"https:\/\/today.uconn.edu\/wp-content\/uploads\/2023\/06\/deborah-and-byron-yost-225x300.jpg\")
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\nShe told him he needed a verb and asked if it had something to do with TV. He said it did.<\/p>\n![\"Five](\"https:\/\/today.uconn.edu\/wp-content\/uploads\/2023\/06\/Screen-Shot-2023-06-22-at-2.50.08-PM-300x211.png\")