{"id":277,"date":"2020-02-13T07:26:28","date_gmt":"2020-02-13T15:26:28","guid":{"rendered":"https:\/\/elizabetholdham.com\/wpd\/?p=277"},"modified":"2020-02-16T17:07:19","modified_gmt":"2020-02-17T01:07:19","slug":"roundandround","status":"publish","type":"post","link":"https:\/\/elizabetholdham.com\/wpd\/2020\/02\/13\/roundandround\/","title":{"rendered":"Round and Round"},"content":{"rendered":"\n
\"\"<\/figure>\n\n\n\n

This was written in 2016, two years before our mother passed away from dementia<\/strong><\/em>.<\/p>\n\n\n\n

Lunches tire me out.  Too intense, too much repetition.<\/p>\n\n\n\n

\u201cThank you,\u201d she says as I set the\ntwo plates down and sit across from her. \nShe looks at last night\u2019s pasta and freshly sliced apples.  <\/p>\n\n\n\n

\u201cYou\u2019re so good to me,\u201d she says.<\/p>\n\n\n\n

I smile perfunctorily as I begin eating.  \u201cYou deserve it,\u201d I say.  It\u2019s true.<\/p>\n\n\n\n

The pasta is steaming slightly but\nquickly drying out from the microwave.  I\nstart eating as she picks up her fork. \nHer movements have recently slowed and become shaky, so I don\u2019t try to\npace myself to match her at meals anymore. \nI simply sit for a while after I\u2019m done until I\u2019ve convinced myself that\nI\u2019ve waited long enough to pick up my plates and take them to the sink.  <\/p>\n\n\n\n

\u201cIs there anything you want me to do\ntoday?\u201d she asks, looking at me.  I honestly\njust want her to continue eating so that I can make her a cup of tea, set her\non the sofa and go back to work in my office downstairs.  <\/p>\n\n\n\n

\u201cNot really,\u201d I reply.  \u201cI\u2019ve got work to do after lunch, so I\nthought I\u2019d put the news on for you this afternoon.\u201d  <\/p>\n\n\n\n

With no actual TV or cable in the\nhouse, we\u2019ve found an internet link to news channels from across the U.S.:\nlivestreams recorded and looped every two hours.  She most enjoys the San Francisco station\nthat regularly repeats tales of woe and the occasional positive feature story\nfrom around the Bay Area.  A lifelong\nCalifornian and a dedicated news watcher, she\u2019s absorbed as the stories fill\nher in on life back home, and then repeat.  She doesn\u2019t notice, and it\u2019s a blessing to us,\nthis repetitious news stream.  We\u2019re all\ntired of the small collection of Wheel of Fortune and Jeopardy episodes that\nwe\u2019ve been replaying for her these past few years.<\/p>\n\n\n\n

\u201cWell that\u2019s ok,\u201d she says as she\nputs down her fork and stares at me. \n\u201cBut I want you to tell me if there\u2019s something I ought to be\ndoing.  It\u2019s just that you do so much for\nme, and I want to do what I can do to help.\u201d <\/p>\n\n\n\n

I nod as I take another bite.  I assure her. \u201cI will.\u201d <\/p>\n\n\n\n

She jumps to another subject.<\/p>\n\n\n\n

\u201cIt\u2019s so beautiful here,\u201d she says as\nshe looks out the window to Kootenay Lake just below the house.  <\/p>\n\n\n\n

\u201cI used to live here,\u201d she continues.  \u201cAnd I had a friend living in this house,\nbefore you were around,\u201d she says.  \u201cA\nfriend of mine moved here, and I used to visit. \nI can\u2019t remember who though.\u201d<\/p>\n\n\n\n

She never lived here.  Born and raised in the San Francisco Bay\nArea, she traveled extensively throughout her life but never had a home in British\nColumbia.  I\u2019ve lived here for nearly\nthree years, however, and she\u2019s spent months with me and my family.  Our home is a rented one. She\u2019d never seen it\nprior to us moving in two years ago, but it\u2019s now a part of her history.<\/p>\n\n\n\n

\u201cThank you for lunch,\u201d she says.\n\u201cYou\u2019re so good to me, and I appreciate you and your husband and your children\nfor treating me so well.\u201d<\/p>\n\n\n\n

I nod again, knowing where we\u2019re\ngoing, resigned to it already.<\/p>\n\n\n\n

\u201cRemind me again, is this your second\nhusband?\u201d <\/p>\n\n\n\n

\u201cYes,\u201d I say, pausing before taking\nthe next bite. \u201cHe\u2019s my second husband.\u201d \n<\/p>\n\n\n\n

\u201cAnd is he the father of your\nchildren?\u201d<\/p>\n\n\n\n

I shake my head.  \u201cNo, their father was my first husband. He\nlives in Alaska.\u201d <\/p>\n\n\n\n

\u201cWas he mean?\u201d she asks, trying to\nput some elemental context around the dissolution of my first marriage and the absence\nof any memory of it.  She doesn\u2019t\nremember her visits to Alaska, her many, many trips to see our family amidst\nthe ten-year struggle of my first marriage. \n<\/p>\n\n\n\n

A solid rock in the midst of those years\nof turbulence, I can\u2019t forget her.  Not\nhow she kept me grounded and steady despite the uneven terrain on which my\nmarriage rested.  Not how she kept an\nopen mind and continued to love both my husband and me despite the challenges\nwe faced together.  Not how she accepted\nthe separation, then the divorce, and still loved us all.<\/p>\n\n\n\n

\u201cHe was only mean sometimes,\u201d I reply.\u00a0 \u201cLike we all can be.\u201d <\/p>\n\n\n\n

I glance up and see her nodding.\nDespite her disease, she recognizes the destructive power of alcohol.  Her own marriage was affected by alcohol abuse\non both sides which, though less destructive in the short term than mine,\ncertainly contributed to the downfall of the 23-year union.  <\/p>\n\n\n\n

\u201cI don\u2019t remember my husband at all,\u201d\nshe says.  \u201cDid you ever know my\nhusband?\u201d<\/p>\n\n\n\n

My throat constricts.<\/p>\n\n\n\n

\u201cYes, I did,\u201d I say.  \u201cI still do. \nHe\u2019s my father.\u201d <\/p>\n\n\n\n

She looks at me, scandalized, and\nputs down her fork.  <\/p>\n\n\n\n

\u201cWhat do you mean?\u201d she asks.  \u201cWhy do you say that? That would mean I\u2019m\nyour mother.  I\u2019m not.\u201d<\/p>\n\n\n\n

I look at her and ask the obvious\nquestion.  \u201cWell what am I to you?\u201d<\/p>\n\n\n\n

\u201cMy sister,\u201d she says authoritatively.  <\/p>\n\n\n\n

I nod in agreement.  Dementia has robbed my mother of her own\nhistory, the very memories that make her who she is.  For seven years my mother has been slipping\ninto an altered reality where faces and places are familiar but lack all\ncontext.  According to the Alzheimer\u2019s\nAssociation, Dementia is a general term for a decline in mental ability severe\nenough to interfere with daily life.  Mom\nhas been declining to the point where she\u2019s no longer able to cope with daily\nlife without assistance.  My sister,\nbrother and I provide that assistance, keeping her in our homes for one to two\nmonths each before accompanying her to the next sibling\u2019s house.  <\/p>\n\n\n\n

We are aware, and some have pointed\nout, that these transitions from one house to another may cause her to decline\nmore rapidly, that these transitions may prevent her from establishing a\nroutine, that we may be hastening the decline we so fear.  But there are no easy solutions to caring for\nher.  My sister, who has power of\nattorney over my mother\u2019s finances and who moved my mother into a spare room to\nlive with her and her family almost two years ago, has admitted that it is too\nmuch for her family to keep my mother full time.  So we shuttle her from one home to the next \u2013\ntwo in California, and one in BC \u2013 homes full of children, grandchildren, dogs,\ncats and spouses.  <\/p>\n\n\n\n

It may not be routine, but it\u2019s\nstimulating. And it keeps her in our lives. \nWould it be better for her to have a routine, albeit one in a long term\ncare home?  I can\u2019t believe that the\nanswer is yes.  If we have the ability to\nkeep her out of care, shouldn\u2019t we?<\/p>\n\n\n\n

\u201cMy husband wanted to keep me at\nhome, and I didn\u2019t want to stay at home,\u201d my mother says.  \u201cSo I left him.\u201d  <\/p>\n\n\n\n

\u201cHuh,\u201d I say, spearing the pasta with\nmy fork and rubbing it through the sauce on the plate. \u201cI didn\u2019t know that.\u201d<\/p>\n\n\n\n

Patients with moderate Alzheimer\u2019s\ndisease forget events and their own personal histories. My mother doesn\u2019t\nremember that she worked throughout my childhood.  My father never asked my mother to stay at\nhome, and while they did separate and divorce when I was 18, it was not\nprecipitated by her leaving him.  She\noften tells people that she started working when her kids were older.  Actually, she started working as soon as my\nsister and I, twins, entered kindergarten. \nWith a master\u2019s degree in history and counseling, she couldn\u2019t wait to\nget out of the stay-at-home mother role.  She was bored as a caregiver, and she eagerly\nentered the workforce as a school teacher and counselor, a job that she kept\nfor thirteen years until a major career change in her forties. <\/p>\n\n\n\n

She doesn\u2019t remember any of her life\nwith my father, or even with us as children. \nI suppose that\u2019s why she considers me her sister.  She knows my face and recognizes me as\nsomeone she\u2019s close to and trusts.  But\nhow can I be her child when she has no memory of birthing me, raising me, or\nsupporting me as I moved through adolescence into adulthood, married life, and\nmotherhood?  <\/p>\n\n\n\n

It\u2019s not just her memories that are\nmissing. Our relationship has shifted entirely. \nThe rock which I clung to during my turbulent first marriage has\ntransformed into a piece of driftwood bouncing around the waves of her failing\nmind.  Now I\u2019ve become the reluctant\ncaregiver, the rock in her topsy turvy world. \n<\/p>\n\n\n\n

\u201cThis meal is wonderful,\u201d she says,\npicking up a slice of apple.  \u201cThank\nyou.  You always give me just the right\namount to eat.\u201d  <\/p>\n\n\n\n

She\u2019s so completely supportive of me\nthat I seem to be immune, so far, to some of the degradations of the disease.  As Alzheimer\u2019s progresses, patients\nexperience personality and behavioral changes, including suspiciousness.  My mother, who had always been easy going and\none of the simplest house guests, now becomes quickly irritated and distrustful\nabout things like portion sizes.  When\nI\u2019m at a meeting or out of the house at dinner time, she never approves of the\namount she\u2019s given, despite the fact that my husband and kids give her the same\namount as I would have.  They tell me\nthat she eyes her plate then eyes their plates and demands to know why she\nhasn\u2019t been given as much as everyone else. \nSo they scramble to fill it with more, and she ends the meal by\nreproaching them for serving her too much. \n<\/p>\n\n\n\n

The overwhelming love and gratitude I\nhave for my mother leads me to a place where I will care for her\nunconditionally. But it\u2019s harder on my family. \nFor my husband, it\u2019s an obligation and the fear of maybe this is where my parents will end up<\/em>.  So he takes it on through a sense of duty with\na touch of compassion. For my children, it\u2019s certainly obligation and hopefully\nalso a respect for the humanity behind the illness.  When they were little, my mother spent hours reading\nto them, playing board games with them or just adoring them as they moved their\nlittle bodies around the room in a whirlwind. \nIn the past few years, the roles have reversed, and I\u2019ve seen my\nchildren attempt to play board games with her (she can\u2019t remember the rules\nanymore, so they invent creative ways to play), take her for walks, and prepare\nher tea when they find her in the kitchen restlessly searching through\ncupboards.  Searching, as if for answers.<\/p>\n\n\n\n

My mother has always been a seeker.  <\/p>\n\n\n\n

After my parents divorced, and in\nspite of warnings from family and friends about stability and security, my\nmother took an early retirement from the school system to become a trainer,\nthen CEO, of an international foundation, seeking more meaning in her life and\ncareer.  For the next 20 years, she\ntraveled all over the world and connected with people throughout the U.S.,\nEngland, New Zealand, and South Africa.  \nShe is still highly respected and loved by many for the type of work she\ndid and the way in which she did it. \nPeople from around the globe contact my sister to check up on her and to\nsee how she\u2019s doing.  It\u2019s hard for them\nto understand the extent to which they have been erased from her life.  <\/p>\n\n\n\n

Her life, and her relationships, have\nbeen waylaid by this disease.  Dementia\nhas interrupted my mother and has attacked or absconded with almost everything\nthat was ever important to her.  <\/p>\n\n\n\n

\u201cIs there anything going on today\nthat I should know about?\u201d  My mother\nbreaks the short silence with a familiar question.  <\/p>\n\n\n\n

\u201cNo, Mom.  I think I\u2019m going to put on the news for you\nthis afternoon while I get some work done downstairs.\u201d<\/p>\n\n\n\n

She nods then speaks. \u201cNow tell me\nagain, you have two children?\u201d  <\/p>\n\n\n\n

\u201cYes, two children.\u00a0 My son is 18, and my daughter is 15.\u201d\u00a0 <\/p>\n\n\n\n

\u201cAnd your husband, is he their\nfather?\u201d  She looks at me, trying to fit\nthe pieces of my life together in a way that makes sense, a way in which she\u2019ll\nremember them.  It\u2019s useless.<\/p>\n\n\n\n

\u201cNo, Mom. Their father lives in\nAlaska.  He\u2019s a good man but it just\nwasn\u2019t a good marriage.\u201d  I try to\nexplain my failed marriage in a way that will prevent a more detailed and also\nmeaningless discussion.  <\/p>\n\n\n\n

\u201cMy marriage wasn\u2019t good either,\u201d she\nsays.  \u201cI don\u2019t remember my husband, but\nI think he wanted to control me.\u201d <\/p>\n\n\n\n

I\u2019ve stopped trying to defend my\nfather.  It troubles her that she can\u2019t\nremember and that I\u2019m correcting her, and it\u2019s emotionally difficult for me to\ngrapple with the weight of his exclusion from her life.  It also points to a day when I won\u2019t be a\npart of her memories either.  I\u2019m not\nthere yet, at least not totally.  While I\nmay not be her daughter anymore, I\u2019m still recognized and important to\nher.  And that means a lot.<\/p>\n\n\n\n

Living with someone with dementia\nmeans that I relive over and over the events that have shaped my life, and her\nlife.  I\u2019ve given up the rigidity and\nrighteousness of my memories to allow a more flexible, adoptive approach to\nreminiscence, following her lead as she remembers. Or doesn\u2019t.    <\/p>\n\n\n\n

I take a bite of my apple and\nrespond.  <\/p>\n\n\n\n

\u201cYou did pretty well for yourself\nafter you and he divorced,\u201d I say.<\/p>\n\n\n\n

She looks surprised.  \u201cWell, yes, I did. I just went after what I\nwanted and lined it up and did it so that no one could say anything about\nit.\u201d  <\/p>\n\n\n\n

She pauses and I see her struggling\nto find the words she wants to say.  Another\nresult of this awful disease is the loss of vocabulary, the inability of my\nmother to articulate what she\u2019s thinking. Aside from the actual memory loss,\nit\u2019s probably what frustrates her the most.<\/p>\n\n\n\n

\u201cWho would want to say anything?\u201d I\nask her.<\/p>\n\n\n\n

\u201cOh, lots of people who thought I\nshouldn\u2019t do what I was doing.  I was\nteaching swimming, but people thought I shouldn\u2019t be doing that.\u201d She\u2019s\nsimultaneously proud and flustered.  <\/p>\n\n\n\n

During my mother\u2019s university years,\nbefore she was married to my father, she competed as a synchronized swimmer.\nShe was a national duet and team champion. Her team won gold at Nationals and\nthe Pan American games, traveled around Europe and Asia to showcase the sport\nand appeared as back-up swimmers to Esther Williams on the Ed Sullivan\nShow.  Her actual career is murky in her\nmind, but she remembers the swimming. \nAnd she remembers that she travelled a lot. So her mind transforms her\nmemories into the fact that she must have taught swimming.  <\/p>\n\n\n\n

Though she didn\u2019t teach synchronized\nswimming, my mother was<\/em> a teacher.\nShe was also a trainer.  She was a\ncoach.  She was a guide for many people\nthroughout the world.  My mother never\nlet people tell her what she could and couldn\u2019t do, and she helped many, many\npeople gain control over their lives when they felt they\u2019d lost it.<\/p>\n\n\n\n

\u201cI don\u2019t think you\u2019ve let too many\npeople tell you what to do, Mom,\u201d I say in response.<\/p>\n\n\n\n

She chuckles and smiles at me.  \u201cYou\u2019re so good to me.\u201d  <\/p>\n\n\n\n

I hear this many times a day, and I always\ngive her the same weary reply.  <\/p>\n\n\n\n

\u201cYou deserve it, Mom.\u201d <\/p>\n\n\n\n

\u201cDo I?  Well thank you.  I don\u2019t always think so.  I think sometimes I\u2019m just a pain in the\nass.  My brain doesn\u2019t work so well now,\u201d\nshe says. \u201cAnd people get frustrated with me.\u201d <\/p>\n\n\n\n

It\u2019s true.  All of it. \nTo say that my brother, sister and I, and our families, don\u2019t get\nfrustrated with my mother is a lie.  Her\nbrain doesn\u2019t work so well.  We get\nexhausted and frustrated and angry and fearful and depressed.  Dementia is a slow motion tragedy that\nwaylays innocent people from their normal aging trajectory and wreaks havoc on\nthem and their loved ones.  <\/p>\n\n\n\n

As a genetic disease, my siblings and\nI know that we are at risk.  My husband,\nwhose grandmother fell to this disease, dreads it as much as we do. None of us\nwants this.  None of us wants our kids to\nbe burdened by caring for us.  <\/p>\n\n\n\n

Yet as I sit with my mother, eating\nlunch and discussing the same faulty memories over and over, I can\u2019t help but\nfeel as if my world has been blessed just a little by this.  Maybe it\u2019s the opportunity to recognize that\nI\u2019m not in control, not as much as I think I am.  Maybe it\u2019s that I\u2019ve learned a new level of\ncompassion as I face bed wetting or arguments about personal hygiene.  Maybe it\u2019s the opportunity to care for my\nmother as she cared for me.  To ensure\nthat she\u2019s got what she needs to leave this world in the same way that she\nprepared me to enter it.  <\/p>\n\n\n\n

My mother still has a great sense of\nhumor. She loves to sing and dance.  She\nloves to accompany me on dog walks.  She\nloves the news.  She loves living.  <\/p>\n\n\n\n

I eat my last apple slice and tell my\nmother that I\u2019m going to head downstairs soon to work.  <\/p>\n\n\n\n

\u201cIs there anything planned for this\nafternoon?\u201d She looks at me as she asks, and I shake my head.<\/p>\n\n\n\n

\u201cNope, nothing planned.  We\u2019ll probably take a walk with the dog after\nI\u2019m done working though.\u201d<\/p>\n\n\n\n

Her face brightens. <\/p>\n\n\n\n

\u201cThat\u2019s terrific,\u201d she says. \u201cJust\ngive me some warning so that I can get ready when it\u2019s time to go.\u201d<\/p>\n\n\n\n

I will.  I always do. \n<\/p>\n\n\n\n

I stand up, pick up my plate and cup\nand move to the counter.  Her plate is\nstill half full.<\/p>\n\n\n\n

\u201cOf course.  I\u2019ll let you know when it\u2019s time,\u201d I say.<\/p>\n\n\n\n

I start the electric water kettle for\nMom\u2019s tea then move into the living room where I turn on the news stream. <\/p>\n\n\n\n

Lunch is over.  The cycle will repeat itself tomorrow.<\/p>\n","protected":false},"excerpt":{"rendered":"

This was written in 2016, two years before our mother passed away from dementia. Lunches tire me out.  Too intense, too much repetition. \u201cThank you,\u201d she says as I set the two plates down and sit across from her.  She looks at last night\u2019s pasta and freshly sliced apples.  \u201cYou\u2019re so good to me,\u201d she says. I smile perfunctorily as … Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19],"tags":[78,81,82,80,77,79],"class_list":["post-277","post","type-post","status-publish","format-standard","hentry","category-musings","tag-dementia","tag-laughter","tag-love","tag-memories","tag-mother","tag-siblings","no-post-thumbnail"],"acf":[],"_links":{"self":[{"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/posts\/277","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/comments?post=277"}],"version-history":[{"count":3,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/posts\/277\/revisions"}],"predecessor-version":[{"id":283,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/posts\/277\/revisions\/283"}],"wp:attachment":[{"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/media?parent=277"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/categories?post=277"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/elizabetholdham.com\/wpd\/wp-json\/wp\/v2\/tags?post=277"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}