Help­lessly watch­ing as a neu­rol­o­gist’s brain un­rav­els.

The Washington Post Sunday - - OUTLOOK - Reeve Lind­bergh has writ­ten a num­ber of books for chil­dren and adults, in­clud­ing “For­ward From Here: Leav­ing Mid­dle Age and Other Un­ex­pected Ad­ven­tures.” RE­VIEW BY REEVE LIND­BERGH bookworld@wash­post.com

Harry Ko­zol, a bril­liant Bos­ton neu­rol­o­gist and psy­chi­a­trist, was di­ag­nosed with Alzheimer’s dis­ease in 1994. “It was one of the doc­tors he had trained who made the for­mal di­ag­no­sis of his ill­ness,” writes Ko­zol’s son, Jonathan, in his mov­ing and thought­ful new book, “The Theft of Mem­ory.” The younger Ko­zol is a Na­tional Book Award-win­ning au­thor best known for his 50 years of work with vul­ner­a­ble, un­der­served school­child­ren and their fam­i­lies. Here, he turns his at­ten­tion, along with his pro­foundly hu­mane in­sights, to­ward his own par­ents at the end of their lives.

One of the most un­usual as­pects of the el­der Ko­zol’s med­i­cal con­di­tion was his abil­ity to un­der­stand and di­ag­nose it him­self. “I can pin­point this as a neu­rol­o­gist,” he told his son early on, say­ing that his “amnes­tic spells” were “clear-cut in­di­ca­tions of de­gen­er­a­tion of the cells in the cor­tex of the brain and in the hip­pocam­pus.” Un­will­ing at first to seek med­i­cal at­ten­tion from an­other doc­tor or even to dis­cuss his sit­u­a­tion with his wife, Ruth, Ko­zol con­tin­ued to live in their apart­ment in Bos­ton un­til a fall and re­sult­ing hip-dis­place­ment in­jury led to surgery and the fur­ther de­te­ri­o­ra­tion of his cog­ni­tive abil­i­ties. He had to be moved to a nurs­ing home.

At this point, Ruth asked her son to come to the apart­ment and sort out some of his fa­ther’s pa­pers. At 92, Ruth Ko­zol was two years older than the doc­tor, “still a rel­a­tively healthy woman and still sharp and lu­cid in her think­ing,” but she seemed sad­dened and “lost” when her hus­band went into the nurs­ing home.

Although both par­ents ex­pe­ri­enced de­creas­ing phys­i­cal and cog­ni­tive abil­i­ties through­out this pe­riod, Jonathan’s love and re­spect for them did not di­min­ish; nor did his in­ter­est in their lives in the present, day to day. Jonathan was shocked, in fact, to learn that very el­derly peo­ple com­monly have oth­ers “talk­ing across them, rather than di­rectly to them,” as if they were not phys­i­cally present or as if they were un­con­scious.

Con­vinced that his fa­ther con­tin­ued to have “an in­ner life of cere­bral ac­tiv­ity — ‘a life be­neath the life’ is the way I imag­ined this,” the au­thor made ev­ery ef­fort to stim­u­late mem­o­ries, pro­mote con­ver­sa­tion and re­main in­ti­mately con­nected to him in the mo­ment. He was dis­ap­pointed at an at­ti­tude he per­ceived in one or two of the physi­cians he en­coun­tered: an as­sump­tion that frag­ile el­derly in­di­vid­u­als had lit­tle to con­trib­ute to so­ci­ety and a “will­ing­ness to rel­e­gate a per­son in my fa­ther’s sit­u­a­tion to a lower and less vig­i­lant de­gree of med­i­cal at­ten­tion.” Ko­zol could not help think­ing of the way school­child­ren in at-risk ur­ban neigh­bor­hoods, an­other pop­u­la­tion un­able to of­fer eco­nomic ben­e­fit to the greater com­mu­nity, were so of­ten de­nied the at­ten­tion that they, too, acutely needed.

By con­trast, Ko­zol cites his fa­ther’s un­stint­ing care of his pa­tients at all lev­els of so­ci­ety over the decades, from play­wright Eu­gene O’Neill to low-in­come and in­di­gent pa­tients in the wards and clin­ics of Bos­ton. Strik­ingly, the el­der Ko­zol con­tin­ued to see him­self as a physi­cian, and he per­sis­tently re­tained “the ter­mi­nol­ogy of neu­ro­log­i­cal eval­u­a­tion” in notes and memos he kept about his con­di­tion for as long as he was able to write them.

Like many other res­i­dents of nurs­ing homes, the el­der Ko­zol of­ten ex­pressed his de­sire to leave. The au­thor writes, “Daddy kept on ask­ing whether it was time yet for me to take him home.” Un­like most nurs­ing home res­i­dents, the el­der Ko­zol fi­nally did have the op­por­tu­nity to re­turn to the apart­ment he shared with his wife. Ruth, now phys­i­cally frail, drifted off into fan­tasies at times and had in-home care­givers of her own. Her son was not sure that the doc­tor’s re­turn to the apart­ment would be the best so­lu­tion, but when ques­tioned, Ruth made it very clear that she wanted her hus­band to come home.

Partly for fi­nan­cial rea­sons, the de­ci­sion was made. The cost of the nurs­ing home for Ko­zol and in-home care for Ruth, even with in­sur­ance, had dramatically de­pleted their as­sets.

The prospect of a frail cou­ple in their late 90s living to­gether at home would have been daunt­ing were it not for their three re­mark­able care­givers — Sylvia, Ju­lia and Lucinda — and the close­ness of their son, who writes that dur­ing this pe­riod he “prob­a­bly spent more hours with [my fa­ther] than I’d done at any time since I was a boy.” He found him­self un­able “to look upon him now with a de­gree of dis­tance, and through a lens of pathos, as if he were no longer the fa­ther I had known.”

His mother, too, came into sharp fo­cus for him dur­ing the last years of her life, emerg­ing “in greater full­ness and com­plex­ity.” At the age of 100, she told sto­ries about her child­hood and about trav­el­ing to Europe with her hus­band, even about his love af­fairs and her own. She some­times in­ter­rupted th­ese to in­sist that Jonathan or a care­giver “check up on the baby,” as she now re­ferred to her hus­band in the other room.

In­evitably, first Ruth and then Harry Ko­zol died, sur­ren­der­ing at last to what the au­thor called their “ter­mi­nal fragility.” Their son’s will­ing, determined in­ti­macy with his par­ents all the way to the end of their old age gives this book its power. Among Jonathan Ko­zol’s gifts as a writer is his abil­ity to en­ter the world of his sub­jects, to live in the coun­try of their ex­pe­ri­ence and to tell their sto­ries with clar­ity and com­pas­sion. This beau­ti­fully told per­sonal ac­count is fur­ther en­riched by an abid­ing fam­ily love.

THE THEFT OF MEM­ORY Los­ing My Fa­ther, One Day at a Time By Jonathan Ko­zol Crown. 302 pp. $26

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