A Man Named Peter: Living in Long-Term Care as a Younger Adult

Imagine you are 55 years old and moving to a different city new “home.” The only time you’ve lived anywhere but your lifelong family home was when went college; even then, older brother roommate, all courses were together! You notice there is lot of hustle bustle going on in family’s home. People don’t know furniture out trucks, packing away books boxes, touching most cherished personal possessions, into room without asking permission. start pacing back forth the long living room, from wall wall; pulling hair. Suddenly hear loud roar — once, twice, three times each getting louder. Where that sound coming from? realize it you. Everyone has stopped their work looking at hate be stared at, bang head forcefully plaster wall. Bang! One movers rushes over stop hurting yourself; he grabs one arms tries pull toward center screaming, flailing fists, knocking mover wooden floor where hits his head. being touched! understand why these strangers home! Can envision this scenario? What if had more information? Would help understanding individual situation?Resources•Clarissa Kripke, “Adults with developmental disabilities: comprehensive approach medical care.” Am Fam Physician 2018;97:649–657A. https://pubmed.ncbi.nlm.nih.gov/29763271/•Jane Lindahl et al., “Domains planning for future long-term care adults intellectual disorders: Parent sibling perspectives.” J Appl Res Intellect Disabil 2019;32:1103–1115. https://doi.org/10.1111/jar.12600•Donna C. Lougheed, “Approach providing aging disabilities.” 2019;65(Suppl 1):514–518. https://ncbi.nlm.nih.gov/pmc/articles/PMC6501716/•Sarah Ruiz “Care coordination models improve quality Policy Stud 2020;30:191–201. https://doi.org/10.1177/1044207319835195•Kathryn Service Christine J. Clifford. “What do I really need? Assessment caregiver support people disabilities (IDD) dementia.” Alzheimers Dement (N Y) 2020;16(Suppl 7):e047106. https://doi.org/10.1002/alz.047106 •Clarissa Peter single white male who an disability since birth, although condition not accurately diagnosed decades. He raised by parents along four siblings. sheltered curiosity community, never met others like himself. home-schooled gift music. His college experience strengthen gift: played seven instruments (which taught himself), wrote music, mainly marches. Songs John Philip Sousa favorites. loved entertaining own way time. particular about whom honored gift. Individuals generally have below average cognitive abilities, ability independently perform activities daily may also compromised. Their adaptive behaviors such as speaking, communicating, socializing often limited. With encouragement family, able some assistance. However, putting clothes, which included donning two pairs underwear socks every morning. That whole other part Peter’s story! When born 1955, little known autism or disabilities. incredible musical skills labeled savant; fact, 17% individuals extraordinary (World Psychiatry 2018; 17:280–281). siblings graduated college. patriarch died myocardial infarction age 50. Over years, mother began variety health issues including chronic comorbid conditions. 50 old, mother, 90, her first stroke many. During mother’s stroke, became so distraught severe vascular changes, eventually leading diagnosis dementia. paid help, she continue cardiac disease after infarctions, becoming dependent. Also, brain changed due violent mood swings lost interest music instruments: offered instruments, would look what it. caregivers difficult handling impatience unpredictability. time, several strokes developed pressure ulcers confined bed. decided both hospitalized, they need go care. After discharged before move LTC, nephews stayed him. Although happy environment recognized, missed acting out. transferred LTC hospital, admitted same facility unit. Because staff been provided any information Peter, list mishaps ensued. These difficulties could avoided story trained how communicate younger adult IDD. day disaster It started nursing assistants tried him get dressed laying clothes. Of course, pair socks. Then, dress, touch telling resulting ruckus brought unit nurse, listen apical rate because digoxin med pass sent verbal physical tirade. idea drums activity This wasn’t good idea: ended up thrown roommate’s bed while roommate it! As mistake led another, frustrated truly wits’ end. himself fearful, confused, extremely upset, locking bathroom. IDD universal component many individuals’ experience. In past, did extended life expectancy, well reaching 50th year. reality now outliving entering years. 2019, expectancy high 50s low 70s (Scaife 2019; https://bit.ly/2QOKYS1). true adults. They longer unique needs goals. significant limitations reasoning, learning, problem solving, behavior related everyday social practical skills. Staff learn engage therapeutic manner population. lacking curricula education Many providers report lack knowledge confidence managing complex situation must change accepting admissions We culture welcoming our facilities ensuring lives enjoyable possible. we outlived recently behavior: singing! makes him, residents, staff, visitors just plain wonderful!