{"id":431,"date":"2022-02-07T01:50:16","date_gmt":"2022-02-06T20:50:16","guid":{"rendered":"http:\/\/jessicacurrall.com\/?p=431"},"modified":"2022-02-07T01:50:16","modified_gmt":"2022-02-06T20:50:16","slug":"conversations-with-dementia","status":"publish","type":"post","link":"https:\/\/jessicacurrall.com\/index.php\/2022\/02\/07\/conversations-with-dementia\/","title":{"rendered":"Conversations with Dementia"},"content":{"rendered":"\n<p>When our twins were born, my mom came to stay with us to help.  That&#8217;s when my spouse and I knew with certainty that something unusual was happening with her thinking &#8212; her memory, sense of the world, and problem solving were all unmistakably strange.<\/p>\n\n\n\n<p>We couldn&#8217;t seem to get her to stop drinking my husband&#8217;s coffee, even though he prepared his entirely differently (black, no cream or sugar) and he bought them both different colored mugs with labels written on them (&#8220;Grandma&#8221; and &#8220;Daddy&#8221;).  She made 3 packets of Kool-aid all at once, using a large bowl for one because we didn&#8217;t own that many pitchers.  Her explanation was, &#8220;I didn&#8217;t know what flavor you wanted.&#8221;  There were other, non-beverage examples, but the point is essentially:  I didn&#8217;t understand her thinking, and I didn&#8217;t know how to relate to it meaningfully.<\/p>\n\n\n\n<p>As years went by, talking with her consistently featured many repetitions of stories, some of which were definitely not true.  As the twins got older, I worried they would be confused by these patterns and that the other adults were not reacting.  I reached out to a friend who worked at an elder facility.  He encouraged me to <span class=\"has-inline-color has-dark-brown-color\">use the word &#8220;dementia&#8221;<\/span> and to <span class=\"has-inline-color has-dark-brown-color\">be matter-of-fact<\/span> with the kids:  she did not remember she was asking the same questions again or repeating stories, and there was no point to calling that out because she would not remember that either.<\/p>\n\n\n\n<p>At the time my mom passed away, she still knew my Dad, loved talking with him about their favorite stories (which he also never tired of), and they were a good team together.  He gradually managed almost all of the tasks of living, including helping her shower and dress.  These days I spend time with folks who have dementia to a much more significant degree than she ever did, and I am in a different space of understanding than I was then.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"837\" height=\"472\" src=\"http:\/\/192.241.129.221\/wp-content\/uploads\/2022\/02\/IcyTrees_GreySky_BlueSky.png\" alt=\"\" class=\"wp-image-433\" srcset=\"https:\/\/jessicacurrall.com\/wp-content\/uploads\/2022\/02\/IcyTrees_GreySky_BlueSky.png 837w, https:\/\/jessicacurrall.com\/wp-content\/uploads\/2022\/02\/IcyTrees_GreySky_BlueSky-300x169.png 300w, https:\/\/jessicacurrall.com\/wp-content\/uploads\/2022\/02\/IcyTrees_GreySky_BlueSky-768x433.png 768w\" sizes=\"auto, (max-width: 837px) 100vw, 837px\" \/><figcaption>The view from my front yard (L) of fractal trees covered with ice on a cloudy day.  The view from my back yard (R) of icy trees illuminated by sunshine.  Both have an evocative complexity and many more layers than can be reconciled. <\/figcaption><\/figure>\n\n\n\n<p>About two weeks ago, I went to visit one of the folks I volunteer with and she was in a truly lovely, sweet mood.  She was holding a baby doll, a little larger than a newborn, cuddled to her shoulder.  She tucked her head to it and cooed, patted its back.  She was so happy to be taking care of this baby, giving snuggles and comfort.  I sat next to her and we talked in a sense.   <span class=\"has-inline-color has-dark-brown-color\">There were lucid\/attached to shared reality moments within our exchanges but mostly I sat near her and enjoyed her company.<\/span><\/p>\n\n\n\n<p>Talking with my non-binary teen about it later, they immediately cued into the energy of the moment as being the only important part.  They helped me find the image of a grown-up figure holding a child-sized figure (at the top of this page) and we talked about how strange it is that much of clipart for elderly women feature someone grey-haired with a bun.  There are photographs of seniors holding baby dolls online &#8212; I have since learned this is a known therapeutic activity &#8212; but my teen and I were concerned that those photographed may not have been able to truly give consent.<\/p>\n\n\n\n<p>On Friday, I had a first meeting with someone new.  She was chatty with a nervous energy in her hands, twisting her clothes.  I handed her a set of fidgets and that gave us something shared to do, to look at, to turn over, to sort (with no rule, no right\/wrong).  She speaks in tumbled words and phrases and I respond according to tone:  &#8216;Oh, I see&#8217; works with both enthusiasm and empathy.  <\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"http:\/\/192.241.129.221\/wp-content\/uploads\/2022\/02\/SortingColorfulFidgits2.jpg\" alt=\"\" class=\"wp-image-437\"\/><figcaption>Brightly colored fidgets &#8216;sorted&#8217; into a box and its lid.<\/figcaption><\/figure>\n\n\n\n<p>At the end of my visit I said, &#8220;I am so glad I got to spend time with you.&#8221;  She looked up and said, &#8220;thank you.&#8221;  Telling this to my teen son later, I said there was no way for me to know if that was just a random alignment of what she said with the moment or if the social cues are so practiced as to remain intact\/attached.   He said, &#8220;yeah, that makes sense but it doesn&#8217;t matter.  It was real.&#8221;  <\/p>\n\n\n\n<p>I wanted to share these stories from my mom to these other people&#8217;s moms in part to revisit the experience of not understanding what was happening, and how to relate to it.  I am glad now to spend time talking about these relationships, finding the energy of the moment and being real together.<\/p>\n\n\n\n<p>End blip.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>When our twins were born, my mom came to stay with us to help. That&#8217;s when my spouse and I knew with certainty that something unusual was happening with her thinking &#8212; her memory, sense of the world, and problem solving were all unmistakably strange. We couldn&#8217;t seem to get her to stop drinking my &hellip; <a href=\"https:\/\/jessicacurrall.com\/index.php\/2022\/02\/07\/conversations-with-dementia\/\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">Conversations with Dementia<\/span> <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":432,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3,5,6],"tags":[],"class_list":["post-431","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-conversations","category-grief","category-hospice-experience"],"_links":{"self":[{"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/posts\/431","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/comments?post=431"}],"version-history":[{"count":0,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/posts\/431\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/media\/432"}],"wp:attachment":[{"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/media?parent=431"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/categories?post=431"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jessicacurrall.com\/index.php\/wp-json\/wp\/v2\/tags?post=431"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}