{"id":184165,"date":"2022-04-25T07:30:01","date_gmt":"2022-04-25T11:30:01","guid":{"rendered":"https:\/\/today.uconn.edu\/?p=184165"},"modified":"2022-04-21T13:57:20","modified_gmt":"2022-04-21T17:57:20","slug":"finding-inspiration-in-the-face-of-alzheimers-a-caregivers-journey-looks-at-life-with-the-disease","status":"publish","type":"post","link":"https:\/\/today.uconn.edu\/2022\/04\/finding-inspiration-in-the-face-of-alzheimers-a-caregivers-journey-looks-at-life-with-the-disease\/","title":{"rendered":"Finding Inspiration in the Face of Alzheimer\u2019s: \u2018A Caregiver\u2019s Journey\u2019 Looks at Life With the Disease"},"content":{"rendered":"

Steven G. Smith wrestled with how to portray death in his latest documentary, \u201cA Caregiver\u2019s Journey.\u201d<\/p>\n

Invariably, Alzheimer\u2019s disease ends with the loss of a loved one, but Smith didn\u2019t want his film to dwell on the eventual. He spent the last year capturing footage to commemorate the devotion of a caregiver during a time that\u2019s oftentimes disheartening and discouraging. There are enough raw images from daily life to anticipate the inevitable.<\/p>\n

\u201cI wanted the story to be inspiring because this is a depressing issue, there\u2019s already enough sadness around it,\u201d Smith, a Journalism Department<\/a> professor in the College of Liberal Arts and Sciences<\/a>, says. \u201cI wanted to find somebody who was succeeding to their best and to try to give some people a level of understanding.\u201d<\/p>\n

He found that person in Manchester resident Leandra Manos, who brought her father, George, into her home at the start of the pandemic to care for him as the disease advances. The two agreed to the scope of the project and welcomed Smith into their world with cameras in hand to document daily chores, uplifting moments, and painful realities.<\/p>\n

The resulting project \u2013 for now the photographic essay \u201cA Daughter\u2019s Long Goodbye, A Caregiver\u2019s Journey\u201d while Smith finishes the film\u2019s final cut this spring \u2013 has earned recognition from Pictures of the Year International<\/a> as a finalist<\/a> in the Issue Reporting Picture Story category and in the Northern Short Course Photo & Multimedia Contest<\/a> with a first place<\/a> in News Picture Story.<\/p>\n

\"Leandra
Leandra Manos smiles while showing her \u201cBaba\u201d his shirt for the day. Leandra converted her front room into a living space for her father, George, allowing him to easily access the kitchen and bathroom. She rents out the home\u2019s second story to help her pay the bills. This is one image from Smith’s photo essay, “A Daughter’s Long Goodbye,” which has won several awards this year (Photo courtesy of Steven G. Smith).<\/figcaption><\/figure>\n

\u201cObviously, as a journalist I\u2019m objective, and there are many things I\u2019m trained to do to tell both sides of the story,\u201d Smith says. \u201cBut with a story like this, it\u2019s critical that I\u2019m building a rapport with, and respect for, the subjects I\u2019m working with, all the while trying to do my best to do justice with the story. I feel a high degree of responsibility with that.\u201d<\/p>\n

There\u2019s also the responsibility that comes with being a child of someone with Alzheimer\u2019s.<\/p>\n

Smith\u2019s father was diagnosed five years ago in his home state of Washington, putting 3,000 miles between the two during a time when family ties already are strained as relationships slowly become one-sided.<\/p>\n

Smith\u2019s initial interest in Alzheimer\u2019s came about after his father was diagnosed, and he wanted to learn all he could about what his mother was going through as a caregiver and what was physically happening to his dad. He put aside other film projects and shifted priorities when the idea for this one nagged.<\/p>\n

\u201cWorking on this story, I\u2019ve sat through many hours with social workers and Leandra, who let me in on those discussions,\u201d he says. \u201cYou can imagine I\u2019m taking notes not just for my story, but as a learning process.\u201d<\/p>\n

Manos and Smith connected online in a forum for caregivers where he proposed the project and put out a call to work with someone nearby. Back then, George Manos still had long periods of rational thought and agreed on his own to participate. Leandra Manos has an interest in writing, and thought she might contribute an essay to the full project someday.<\/p>\n

\u201cI sat down for probably several hours, maybe as many as three hours before I even brought a camera, just talking to Leandra, outside in the early spring last year, about the story and her circumstances and her dad\u2019s circumstances,\u201d Smith says. \u201cShe\u2019s made tremendous sacrifices and she\u2019s really an inspiration, her love and her dedication. She\u2019s sacrificed pretty much everything to care for her father. She\u2019s very patient with him, which I find to be very inspiring, because there\u2019s something about this that can be frustrating. It\u2019s not so much you\u2019re frustrated with the human being; you\u2019re frustrated with the disease itself and what it\u2019s doing to them.\u201d<\/p>\n

In one picture from a session together, Smith photographed Leandra and George Manos sitting in a pew at St. Spyridon Greek Orthodox Cathedral in Worcester, Massachusetts. Leandra Manos is connected to her surroundings, eyes fixed on something above her whether spiritual or tangible, while George Manos gazes distantly ahead.<\/p>\n

\u201cThis is their home church, and one of the things dementia does is just steal an awareness of what\u2019s going on,\u201d Smith says of the photograph. \u201cShe\u2019s very engaged, and he\u2019s there but he\u2019s not. He\u2019s not even thinking about his life and raising his children there, all the things that would flood back normally.\u201d<\/p>\n

\"Leandra
Leandra Manos and her father George sit quietly in the sanctuary of St. Spyridon Greek Orthodox Cathedral in Worcester, Mass. George and the family attended the church for many years. This is one image from Smith’s photo essay, “A Daughter’s Long Goodbye,” which has won several awards this year (Photo courtesy of Steven G. Smith).<\/figcaption><\/figure>\n

Other images show just what Manos does for her father and all the routine care a person would need. In captions to the still images, Smith notes that Manos left full-time work, rented out the top floor of her home to earn an income, converted the front room of the first floor into a suitable living space, and plunged in as a 24\/7 caregiver.<\/p>\n

Respite nurses give her time to step away, but being the primary caregiver is an omnipresent responsibility, Smith explains, so much so that Manos has made her bed on the floor beside her father\u2019s to keep him from wandering in the middle of the night.<\/p>\n

\u201cThat\u2019s loving, caring commitment, it says a lot of things there,\u201d Smith says of the image.<\/p>\n

When the three commenced the project, Smith says Manos urged him to portray the harsh realities that come with Alzheimer\u2019s, not gloss over the crudest parts of what the disease brings.<\/p>\n

Eventually, that\u2019s death.<\/p>\n

On Sept. 22, Manos lay on the floor of an exam room at Bolton Veterinary Hospital, curled up for the last time with her 14-year-old dog, Tiki, who had cancer and was to be euthanized. The film shows those last moments together \u2013 caregiver and companion \u2013 wrestling with death.<\/p>\n

It\u2019s a critical scene in the film.<\/p>\n

\u201cI\u2019ve somewhat come to peace with it,\u201d Smith says of his father\u2019s diagnosis. \u201cI can\u2019t tell you I had peace with it before \u2013 and maybe peace isn\u2019t the right word, maybe it\u2019s understanding. Maybe that\u2019s what I was searching for, some level of understanding.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

UConn journalism professor documents Manchester woman’s struggle to provide care for her ailing father<\/p>\n","protected":false},"author":160,"featured_media":184745,"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":[2226,2193,2317,2235,2227],"tags":[],"magazine-issues":[],"coauthors":[2368],"class_list":["post-184165","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clas","category-hartford-county","category-journalism","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 15:53:13","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\/184165","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=184165"}],"version-history":[{"count":4,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/184165\/revisions"}],"predecessor-version":[{"id":184749,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/184165\/revisions\/184749"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media\/184745"}],"wp:attachment":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media?parent=184165"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/categories?post=184165"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/tags?post=184165"},{"taxonomy":"magazine-issue","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/magazine-issues?post=184165"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/coauthors?post=184165"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}