w/o a map

without a map.png

by Lisa (wife of Thomas)

_________

notes/quotes:

1 – w/o a map – adjusting to a changing life

4

my travels in the wilderness were rarely about the destination. instead, each trip offered new ways of seeing and learning about the world and my place in it..

wilderness

langer outcome law

5

dad built a storehouse of anxiety, fear an insecurity.. instead of flourishing in the time and space that opened up, he drew the curtain and brought his world even closer.. in retrospect, his coping was quite masterful. he lived alone and managed his shifting abilities fairly well for several years.. .. my bros and i had attributed his increasing reluctance to travel as simply a string of individual choices.. ..

6

on phone calls & mail never having context.. they probably just added to the confusion of his day.. we wanted to believe that dad was living his own life too. in fact, at some point, he had stopped living and had begun surviving..

the details of daily life had become tedious.. eating, dressing.. all consuming..  the ritual and habits that at one point had brought a measure of security became obsessions.. w/o the ability to assimilate new info or stimuli, the only way he could remain comfortable was to repeat previously adopted behaviors.. he was plagued by self doubt and reconsidered everything he did multiple times..  whatever the reason, every aspect of daily living required his painstaking attention..  he was determined to be as independent as he was thorough and he diligently and persistently attended to life’s little details..

7

it wasn’t our place to tell our own father how he should live his life, but surely this was not how he had envisioned enjoying retirement..

retire/ment ness

8

it took a long time for him to get dressed in the morning or make his own breakfast, but he got thru all of the steps eventually..  i stayed out of the way so he could complete as many tasks as possible on his own. i learned to be patient and recognized that there was much greater value in his process than in the eventual outcome..

finally, i was spending enough time w him to stumble upon the laundry situation..

12

this was not a job. i was not earning income for it and had no real job description.. yet i could see and feel clearly that it was hard work.. as a family, we had to confront the cultural norm that devalues family caregiving and declare its importance and prominence in our lives..t

caring labor – it seems to me that caring labor is best conceived as labor that is directed ultimately at maintaining or enhancing another’s freedom. – David Graeber

@LisaSteeleMaley

when i became a parent, i was shocked to realize how little attention and support our communities offer for the critical social function of raising children..  in the early months, i felt indignant about the heft of my new responsibilities and the worlds’ obliviousness..  as time went on, my rage melted away and i bore the responsibilities of family and work quietly along w everyone else.. but here it was again at the other end of the spectrum of life… many older adults require as much physical/emotional care as toddler and newborns..

14

the day arrived when it was crystal clear that it was time to step in..

16

(dad to dr.. i’m fine).. things are not find.. ask a better question.. pay attention..

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these extra appointments and unfamiliar people just added layers of stress and confusion to dad’s life while addressing only symptoms rather than identifying the underlying problems..

huge..

21

it was a close call that left us all very uneasy. we needed to act more quickly

23

he reluctantly agreed, and i breathed a sigh of relief..  his consent was so important (to moving to rosen spgs)..

he was anxious about the step to accomplish it.i reassure him often that i would take care of all the details and be w him every step of the way. i coordinated as much of the logistics as possible out of sight and hearing range so that he simply wouldn’t worry about it..

27

w/o visible physical manifestation (68) of the burdens he bore, many people could not see the challenges he face, but he was the resident most likely to walk out the front door and not be able to get back to his apt

29

w each step i had taken into the woods, i moved closer to appreciation and acceptance of a world beyond my control and understanding..

2 – along the way – peering thru the windows of change

34

eventually, i stopped giving him advance notice.. it seemed that he would remember only that something was going to happen, but not what or when. this made him very anxious..

would think it’s happening.. for weeks after/before.. so one event sucked up tons of energy

36

along w losing his memory, he was losing his identity.. if memory holds our experiences, history, values, challenges, successes, and relationships, it is the guardian of our sense of connection in the world. i suddenly worried for him in a new way… if his window to the world contained only the present.. how would he create meaning in days ahead..

37

he seemed to revive and then release memories from his life one at a time, working backward. by the time i noticed the pattern, adulthood was long gone and the childhood memories that emerged were from every younger ages..

39

though i often felt helpless and in way over my head, retelling these episodes convinced me that simply staying present was enough. it was, in fact, all i could do

40

as time went on, i craved the energetic sharing of the weight of dad’s situation more than the feedback. i envisioned that by distributing what i knew, i would also somehow parcel out the weight of that knowing.. and if we could each hold more, perhaps dad would have less to carry..

41

i imagine that signing his name was a comforting act of self affirmation that made the struggle of the whole check worth while (45 min to pay a phone bill)..

to mom it’s a stress ..’can’t even write my own name’

i was modeling the behavior i hoped he would adopt as his own, still hopeful it would be possible for him to grow more comfortable in his surroundings..

swim, walk, music, ..

graeber model law

the community life at rosen springs was more valuable than any of my efforts thought, providing a routine, a flow of people and daily activities..

mostly the pub.. (mare: she can’t go to al)

after first few weeks, he didn’t ask about the repairs to the condo or returning to connecticut. he was at ease in his apt.. he made friends w residents.. he had visitors..

after 18 months.. wasn’t so angry all the time.. more at ease in apt.. still wondering where everything went.. still talks of backyard.. has no recollection of how bad the last 10 yrs there were.. after 18 months.. started seeing ‘old friends’ on more of a regular basis.. way more than had in last 10 yrs..

43

but then he drove away that night and it was clear i could not really be sure of anything

bin 46 & whole reservation episode

44

he (dr) once descried at length how a person will metabolize alcohol differently as he ages.. *i didn’t want my own father to see me as someone who had taken away his liberty..  but it was time for me to stop hoping some authoritative word form the medical field would save me from initiating this convo..  i knew it was the right thing but i hated having to do it..

our consumerist society made this difficult.. anyone could convince her to .. have a drink.. and another.. eat this expensive meal.. et al

*caring labor – it seems to me that caring labor is best conceived as labor that is directed ultimately at maintaining or enhancing another’s freedom. – David Graeber

45

the nurse described it (his memory loss of night before) as a little black spot on his brain covering up his ability to interpret info and make decisions..

i had not anticipated that giving up the car would worry him more than moving.. ‘but how will i get to the grocery store? it really wasn’t about the mode of transportation: his care was a symbol of independence.. it was in the interest of protecting other that he should give up driving.. .. this line of reasoning resonated w him.. fine.. take them.. he growled.. i quickly put them in my pocket, hoping that by moving them out of sight i could remove his hurt too. i had the keys, but we had both been battered by the exchange.

oi

46

i had read that while someone w dementia may not remember the content o fan experience w someone, they will retain the feeling of it.. as we had forged this new relationship together over the last few years, i had kept this concept in mind day by day.. it was esp important to me that i always left on a positive note..

47

i felt as if i had betrayed him, even though i knew that taking the car as the right thing to do.. my only solace was that he would forget the cause of his sadness soon after i departed and not long after, the sadness would dissipate too.

friend.. had stopped to wrap his slumped body in a hug. i wonder if he would be able to communicate why he was sad.. in some way, maybe it didn’t matter. her hug and companionship would create space for happiness and ease to return.. soon they would be walking/talking together, and the mood of the day would fade as the evening unfolded

lucia.. pub sters

48

two years earlier, dad had begun to say, ‘you’re the boss’ when he deferred a decision to me..  being the boss felt terrible

yes ma’am

so terrible

54

on al.. and him liking activities.. ie: zumba.. i’m sure it would have never occurred to me to take him to a zumba class

mare.. i don’t think she’s go for it.. i don’t know.. and chuck.. would it be offered..

using al.. because she hates those words

when he moved to the al building.. i had his mail forwarded to my house and simply took care of business matters for him..  he mentioned taxes.. he noticed other residents.. when i reminded him we had completed his tax filing a few weeks earlier, he nodded gratefully and never brought up business or financial matters again..

55

from time to time i would dread my visits.. i eventually learned not to anticipate.. my projections were futile and did not support me in being better prepared.. the best way to be w dad was to keep and open mind/heart.. it also helped to remain aware, flexible, and responsive..  dad would follow my mood/cues.. i usually had a few choc chip cookies waiting .. the sweet treat offered a bit of self indulgence

beyond the damaged confines of his body and mind, his essence persisted unscathed

i wish.. maybe the accident.. may the death.. maybe whatever..

57

on feeling untethered but still yearning for something diff.. it (sign: chop wood, carry water before/after enlightenment) seemed to beckon to me to whittle my life down to its most fundamental.. it suggested that here, in the most basic elements i might find what was missing..  i stopped wondering what i was supposed to do..t.. that’s how i got to alaska and how i found thomas along the traile..how we got to maine..  along the way we chopped wood and carried water..

supposed to ness

58

we trusted our instincts and relied on the interconnected wisdom of our hearts, bodies, and minds..  these same skills.. accompanied me while navigating moments of joy/challenge that dad and i met regularly..

3 – the view from here – surprises and gifts in each tender moment

60

we can learn a lot by paying attention to what might not be readily seen or heard..t

quiet enough to see

61

we were careful to set up manageable and successful situation for dad and scheduled our days w ample time to ensure we never felt rushed/stressed.. transitions were the hardest: shower, dressed, ready for bed, ready to leave house..

64

(returning after family vacation).. he cried entire 2 hr drive.. when i opened door to his apt.. he spun in a circle.. recognition crept in .. at first he was glad for the familiarity.. then his face fell as he remembered more. i can only guess that it was some uncomfortable and unhappy feeling of being there.. maybe he recalled frustration, isolation, loneliness, or confusion.. he began to weep.. ‘am i going to stay here agin? but it was so nice to be w everyone.. that’s the way it should be all the time.. why can’t it be that way always”

it was  great question w/o any good answers..  there was no way to explain that the weekend we had just experience together was a vacations…

there was no way to explain that he couldn’t live w his sister or his children.. he would be miserable in our homes w the gentle chaos and unpredictability that accompany the lives of young families..

that was the closest he got to mourning the life no longer possible for him..

i unpacked.. maybe once it was all out of sight, he would forget about it.. i wanted him to retain the joy of our trip and not the sorrow of returning home..

66

i struggled w the paradox of mourning the loss of a person who was still living..  i wondered anew if we could have done it all *another way.. **i cursed the busy lives and fragmented culture that keep us from honoring and integrating each generations’ contribution in the fabric of our days..  i would not touch this place of deep grief in myself again until the final weeks of dads’ life.. (he never went back to that place of acute awareness of all he had lost.. or if he did.. it was not something he shared w me again.. as his disease progressed and he withdrew deeper into himself, his waning self awareness seemed to rob him of any further capacity to mourn his lost life)

*a nother way

**kierkegaard busy ness law

67

another move.. from al to memory care.. we began our convo in car on way to beach.. the car was confining and mirrored the restriction he worried were coming his way in th other building. he was already wearing a wander guard: and electronic bracelet that caused external doors to lock when he approached..  the doors in the memory care were locked for everyone..  my explanation did not address the worry/fear that accompanied  a step into a new unknown.. dad of course, could not see he was already dwelling in the unknown of his changing self..

69

while i had been busy being offended by the dr’s dismissive bedside manner, dad had heard what he needed to hear. his awareness that something was wrong had been validated by someone he deemed a respected authority.. he has not wanted to hear it then.. stuffed it away.. now, he was relieved to be reminded there was a reality beyond his control that was the cause of his struggle.. he was living w dementia..  he thanked me genuinely for bringing it up and naming it again..  his renewed awareness seemed to relieve him of the need to hold all the fragments of his world together by himself..

70

the move to memory care was almost w/o transition.. settling into his first apt at rosen a year and a half earlier had been so full of stress/effort.. at that time, he was still relying on his faltering memory and trying to create routines that would guide him thru daily functions.. by the time we moved to al and then memory care, he did not – and could not – rely on his memory at all. he looked to the world around him for clues every minute of every day.. .. at any time of day/night, he could open his door, walk into the hallway and keep walking until he found a person/activity..  his ability to orient himself in time/place seemed to renew a sense of safety/security..

i hated confronting dad’s declining abilities by imposing  a ‘solution’.. yet each new setting proved to meet his current needs better than his previous environ had and, importantly, left room for inevitable upcoming changes..

71

there was a quality of being w dad during this time that fostered a deepening connection. knowing that each moment was only itself – no more /less than a blink in time – liberated it in profound ways..

72

w/o the pretense of creating memory or paving path to the future, each moment could simply be..

imagine 7 bn living that way.. as it could be..

ie: hlb via 2 convos that io dance.. as the day..[aka: not part\ial.. for (blank)’s sake…]..  a nother way

our convos became very simple and topical.. ‘what have you been up to.. i would answer.. then silence.. then ‘what have you been up to.. .. each time he asked, i would answer w something new.. as i answered each time, it became like a peeling away of the layers of my life. i would share the most topical mundane life events first: ‘i drove carpool yesterday.. eating asparagus.. reading book’.. w each repetition i would offer an answer that progressively dug into the roots of something more important to me.. if he asked enough times, i would often offer up an unresovled problem ‘have an interesting new project.. i’ve been wondering about..’

sometimes.. he’d respond  w relevant insight/observation..  i found myself baiting our convos to see if he would grant me another nugget of wisdom..

this happened at 1119.. but so exhausting (ie: next day start all over again from scratch).. carried a bit over to rp.. but not w the same intensity

73

i was attentive to observing and learning from him

indeed

when i offered him my vulnerability, a room opened for him to offer me his competence and care again..

again.. 1119.. but couldn’t/can’t anymore.. thinking this piece has already come/gone w mom.. while others yet to happen

eventually, interpreting my words became too much work. instead of bringing us closer, convo began to frustrate dad..

yeah.. that.. that is what happened.. i could see she wasn’t even hearing in the moment.. let alone remembering the next day.. i could see/sense her fake congenial responses

74

as dad expressed himself less verbally, i began to seek ways to keep him happy/healthy in his body..he seemed to be getting slower ans stiffer by the day.. i wondered if massage would help.. his body seemed to recognize and respond to the peace and connection in that space.. allowed him to find moments of comfort and peace not otherwise attainable..  he could no longer reason or walk his way to contentment but, during each visit, the massage therapist ushered his body, mind and heart into alignment and he could rest there..

76

whenever i felt regret after a visit w dad, i wrote him letters that i knew he would never read.. 

they bridged the gap between what i had said and what i wished i could say..

sometimes the words remained unspoken because i simply didn’t think fast enough in each moment to be both present and reflective. sometimes the words hadn’t been spoken because i knew he wouldn’t understand the meaning in them. the letters lightened the regret and sadness i carried and gave me back the adaptability required to be fully present w/in the time we had together

hosting-life-bits/document-everything ness..self-talk as data

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(in one of her letters): the confusion that has fallen upon ou and caused the world to shift is only a cloak tha masks your true intentions and creates an obstacle to clear seeing and easy motion

that could be written to everyone in the world.. no..?

krishnamurti measure law.. we’re all sick.. we all need a nother way to live.. (has to be all of us)

78

we had hit the point that the neurologist had descried as ‘falling off a cliff’.. he had described the likely progression of dementia as slow and methodical for a time until, inevitably, there would be this steep decline..

of course, anxiety will increase if each new moment arises as a surprise.. if there is an awareness of declining capacity, esp if it *cannot be articulated or understood..

again.. *that’s all of us.. no..? who’s hearing us..? begs a mech/means.. as it could be

79

dad would never wish to hurt anyone, and i desperately wanted to protect him from the possibility he could violate his own values..

81

his emotional state mirrored mine.. i learned to still my mind and energy when i was with im in order to protect the sanctity of our time together.. i learned to be quiet and to be in communion w him in that hush. when we were at the beach, he would follow my gaze to the horizon..

following a gaze.. dang..

81

these days taught me to protect space for unspoken meaning and the beauty that could arise at any moment..t

unspoken meaning.. beyond words.. ness

82

there was a quality of deep intention in our time together that not only enriched our relationship but also showed me a vision of my best self. all of my relationships and activities were worthy of this level of attention

exactly.. all of them/us..

attention

83

(while in alaska.. camp).. frail and unsure about how to live in a world that changes in an instant over and over again.. tomorrow will never be the same as today..t

taleb antifragile law

84

we are not in charge. our comfort rests in our ability to give and receive support and care.. our strength builds from our willingness to adapt to changing circumstances and the ever changing landscape

(at this point.. 2 continent split – t and t in dubai.. d at boarding school in ne)

4 – journey’s end – settling in and bearing witness

86

i leaned into the security of our land more fully as dad neared the end of his life. i remained determined to keep him company on this unknown and lonely path, , but while dementia had completely uprooted dad, i felt literally grounded..

88

the hospices’ focus on providing comfort rather than seeking to id and treat pathology was  huge relief

palliative care

91

when dad had started to decline we never discussed the inevitable progression of disease.. nobody had explained his condition was terminal and his body’s systems would close down one at a time until he died..  we never discussed other abilities we take for granted would fade away too (besides memory..verbal capacity.. et al).. standing up, walking, chewing, and swallowing would become challenging and then impossible..  none of the drs along the way had prep’d him/me for this..pehraps it would have been too much for him to process..  yet.. felt unfair .. he should arrive at his dying w/o an opp for spiritual or emotional prep..

97

(one of letters to fam): i am less sure than ever how much detail is useful. it seems the most important thing right now is to send our love and energy to dad and trust that he will use it as he needs..

98

i was graced w an indescribable feeling and awareness of the infinite..this intuition settle into me as truth. it was not something i could see, touch, or prove. i can still barely find words to describe it, but i knew it..

description ness

5 – reemergence – honoring the wilderness and the journey ahead

105

it is powerful and humbling to bear witness to another being’s passage into or out of life, and it is a sharp reminder that our own life is both finite and infinite too..

107

w/o careful attention, it would be easy to fall back into proceeding thru life as if contributions to the econ are more important than contributions to family and society..  i have seen, though, that there is nothing more important than simply showing up for one another.. t

i no longer expect or hope for a map.. t.. i am prepared to move forward one step at a time, trusting in the process and living deeply into each moment as it comes and as it goes..

as it could be..

2 convos .. as the day..

_________

rp ness

retire/ment ness

w/o a master plan

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