{"id":803,"date":"2018-04-08T13:16:32","date_gmt":"2018-04-08T17:16:32","guid":{"rendered":"https:\/\/www.athenainstitute.com\/ahp\/?p=803"},"modified":"2018-04-11T15:38:22","modified_gmt":"2018-04-11T19:38:22","slug":"seeking-joy","status":"publish","type":"post","link":"https:\/\/www.athenainstitute.com\/ahp\/seeking-joy\/","title":{"rendered":"Seeking Joy"},"content":{"rendered":"

The patient I\u2019ve been visiting for the past 5 months, \u201cElaine<\/em>,\u201d has extremely advanced vascular dementia. During my visits, I usually try to talk or read to her. Since she\u2019s hard of hearing, I\u2019ll get really close to her face and touch her arm. The touch will almost \u201cwake\u201d her up for a few seconds and she\u2019ll look at me. Her speaking ranges from a non-comprehending silence to a short sentence. Most of the time when she\u2019s by herself, she\u2019s lying in bed \u2013 one eye half closed. Occasionally, it\u2019s as if someone deep inside wakes from a deep sleep, for just the briefest moment to open her hand or adjust her glasses, but then can\u2019t help but fall back into slumber mid-movement.<\/p>\n

Every week I visit, I wonder if she recognizes me. Every question I ask, I wonder if I\u2019m reaching her.<\/p>\n

Eating for Elaine<\/em> is a major concern. Rather than forgetting to eat, it\u2019s more like she doesn\u2019t know how to remember to eat. Feeding herself is out of the question, but with a busy hospice staff, there\u2019s no time to make sure she has enough calories when she frequently refuses to open her mouth. It doesn\u2019t help that she will only eat what she likes: fish no other meat, mashed potatoes only with gravy, vegetables with a little bit of salt, or Rice Krispy cereal with milkshake not milk. Even with food in her mouth, sometimes she forgets to chew and swallow. So she only weighs about 70 pounds. Even if she could remember to walk, there are no muscles to support her weight. She\u2019s all skin and bones. So perhaps it\u2019s a blessing she doesn\u2019t realize she has probably been in the same bed for the past year. If it weren\u2019t for \u201cMichael<\/em>,\u201d her husband of several decades, who visits every single day to feed her at least one meal, Elaine<\/em> would probably starve.<\/p>\n

Dementia is ugly and people like Elaine<\/em> are often unlovable \u2026 but Michael\u2019s<\/em> enduring love for her helps me see beauty within the ugliness.<\/p>\n

Elaine<\/em> wears diapers. She has to – she can\u2019t get up and walk to the bathroom, so she simply just goes in her bed. Once I accidentally walked in on Michael<\/em> changing her, and he asked if I wanted to help as if it was the most natural thing in the world. Changing her exposed absolutely everything from the waist down. She was like a sleeping baby \u2013 closed eyes, peacefully oblivious to any shame throughout it all. During this process, Michael<\/em> liberally applied baby powder all over, and matter-of-factly explained why it is better than the diaper cream that the nurses use. I felt incredibly awkward, but Michael<\/em> was obviously used to this; it was normal, and natural and of course Elaine<\/em> should need help. There was nothing wrong with Elaine<\/em> needing help and us giving it; and it is Michael\u2019s<\/em> love for her that makes it possible.<\/p>\n

At the same time there is no romanticizing this; Elaine\u2019s<\/em> condition isn\u2019t pretty. Her life is incomparable to a \u201cnormal\u201d life. She\u2019s not exactly physically dying, but is mentally degenerating very slowly. Yet there\u2019s no question that she is alive. But, because Michael<\/em> loves her, and because we have compassion for her, we can take any of the ugliness and learn to redefine the ordinary as beautiful.<\/p>\n

Being with Elaine<\/em> I have learned to take every moment and comb it for gold. Since she responds so little, I am always hyper-alert for any half phrase, any twitch, any glance, and any furrowed eyebrow that can tell me how she\u2019s feeling and whether or not her mind has surfaced to be Elaine<\/em> again. You would be surprised at how much I\u2019ve learned about her: that touch is comforting to her, that she worries she\u2019s a burden, and that she always misses Michael<\/em>. And when she smiles \u2026 that is like striking the jackpot. Her whole face transforms: the wrinkles on her forehead smooth out and she looks at you with clear eyes like she is truly seeing you, and she is happy. Then it fades, but there\u2019s an after-image of joy that I\u2019ve grown to love and chase after. She is like a newborn baby – fed, changed, and made to smile. Even when she can\u2019t do anything \u201cnormal,\u201d she is loved \u2013 and that is enough for joy.<\/p>\n","protected":false},"excerpt":{"rendered":"

The patient I\u2019ve been visiting for the past 5 months, \u201cElaine,\u201d has extremely advanced vascular dementia. During my visits, I usually try to talk or read to her. Since she\u2019s hard of hearing, I\u2019ll get really close to her face and touch her arm. The touch will almost \u201cwake\u201d her up for a few seconds … Continue reading “Seeking Joy”<\/span><\/a><\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"school":[10],"program_year":[27],"class_list":["post-803","post","type-post","status-publish","format-standard","hentry","category-hospice","school-villanova","program_year-27"],"_links":{"self":[{"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/posts\/803","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/comments?post=803"}],"version-history":[{"count":2,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/posts\/803\/revisions"}],"predecessor-version":[{"id":808,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/posts\/803\/revisions\/808"}],"wp:attachment":[{"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/media?parent=803"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/categories?post=803"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/tags?post=803"},{"taxonomy":"school","embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/school?post=803"},{"taxonomy":"program_year","embeddable":true,"href":"https:\/\/www.athenainstitute.com\/ahp\/wp-json\/wp\/v2\/program_year?post=803"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}