Saturday, May 30, 2009

Who Have You Been (and who are you now) (Carrie Newcomer)

A major update to follow later today or, more likely tomorrow - we were told a nurse/home health aide/caregiver would be coming today so I've waited to discuss yesterday's happenings...

In the meantime, I've been thinking how much caregiving for mom this past week and a half reminds me of the early stages of motherhood - I remember back to those days when my life revolved around someone else and how I needed to approach it with joy rather than resentment in order to maximize action and minimize frustration...

My day now consists of waking up about 8... and listening out for mom to stir (during which time I turn off the front porch light, unlock the front door, bring in the newspaper, unlock and open the back door and make myself a cup of chai) - I sometimes stand in her doorway to see if she's awake... although, when she does wake, she usually turns on the TV (The Today Show) to get herself ready to start her day.

At that point, I start a pot of coffee (she was drinking hot tea before I got here because it was easier) and go back to the bedroom to supervise her first walker-assisted trip of the day to the bathroom - mom spends as much time in there as she needs, slowly changing from her nightgown into the knee-length cotton T-shirts she likes to wear during the day (after I've applied the topical antibiotic to the lesions on her back and upper arms).

Again, when she's ready, I follow her walker-assisted trip into the living room, where mom settles herself into the left-side corner of the couch, remaining most of the day, with the TV on... at full volume - I then make her breakfast (an English muffin with butter and apricot preserves or a bowl of oatmeal or two blueberry waffles with butter and syrup), put it on a tray and bring it to her. I might do an e-mail check at that time, but usually I make up her bed and mine, as well as anything else that might need attending, and sit and chat with her a few minutes to see how she's feeling - when she's finished eating, I take the tray into the kitchen, clean up, make sure the distilled water in the humidifier of the oxygen machine is properly filled and check the flow gauge...

By that time, mom has laid her head down on the arm of the couch for a nap - I might get a few e-mails answered, but I'm constantly prepared for an interruption, whether by phone, front door or her waking. We chat off and on during the morning as I do laundry, prepare our To Do list and generally make myself accessible to follow through however she needs me (find specific paperwork, bring her summer pocketbook to switch over to, help sort through her medication, etc.) - we talk about what she wants for lunch and dinner...

Lunch can be a sandwich or salad, always with fruit since she remains constipated - she will rest again after eating. When she sleeps, she moans... and it scares me - I might try to work at the computer again, but I can never really concentrate because I'm worried and therefore constantly attentive to any slight change in breathing. I try to get a shower in then, but it's not always possible - I recall, when my children were infants, that I would put them in their rocker seat and set them on the bathroom floor so I could see them, taking the quickest shower in history and talking to them throughout. I wish I could do that with mom but instead have to leave her on the couch - when the water's running, I hallucinate that I hear her calling me, only to find that, after I've rushed through my hygiene process, she's still asleep, or at least perfectly fine...

At this point, I might run an errand to the grocery store or for some other necessity, making sure one of the neighbors knows I'm going... and that mom has the phone right next to her - I'm never gone more than an hour, and usually less than that. My sister and brother always call during the course of the day, as well as various friends and neighbors - it wears mom out to chat, but it's wonderful to know so many people are thinking of her...

Afternoons roll over into evenings and sometimes we do "Happy Hour"... after which I fix and serve dinner, usually about 7 p.m. - we watch Wheel of Fortune and then Jeopardy... and then mom goes on a three-hour jag of crime drama shows (continuing at full volume). NCIS/CSI:NameThatCity/Criminal Minds/Forensic Files/The Mentalist/Without a Trace all look alike to me... but she loves them - I'm over the blood and guts and gore, oh my!... and sometimes miss Jon & Kate (without the recent brouhaha), Antiques Roadshow and InTreatment...

Mom will usually watch the first 30 minutes of Murder, She Wrote and then head back to bed - I help her back to the bathroom and then switch on the fan and light in her bedroom, as well as turn back her covers and put her water glass on the bedside table. I wait for her to come in, kiss her goodnight (with emotion) and head back into the living room to get whatever I can get done at the computer (fingers crossed the Internet connection prevails) or some reading until exhaustion/sleepiness take over - I've found that if I stay up late, I pay for it the next day...

The worst part is the hours between 2 and 6 a.m., when it's still dark and I can hear mom breathing and moaning - then sometimes she gets quiet... and I sneak in there to make sure she's okay (remember those middle of the night visits standing by our infant's crib to make sure they're still alive?). Sometimes she gets up in the middle of the night to go to the bathroom... which wakes me (I'm back in parent mode these days) - I yell out that I'm there if she needs me... and sometimes she does and sometimes she doesn't...

Before we know it, it's 8 a.m. again... and time to wash/rinse/repeat - I'm hanging in there... and some days are easier than others...

P.S. Speaking of children... my dear daughter Sarah just made arrangements to fly up next Friday to spend a long weekend with mom (my kids call her Mimi) - when I told mom, she cried with joy...

SONG: Who Have You Been (and who are you now) by Carrie Newcomer (scroll down to page 14)

Unwrapping the Sandwich Generation: Life Vignettes about Seniors & Their Adult Boomer Children by Susan Cunningham

POEM: Sometimes by David Whyte

if you move carefully
through the forest

like the ones
in the old stories

who could cross
a shimmering bed of dry leaves
without a sound,

you come
to a place
whose only task

is to trouble you
with tiny
but frightening requests

conceived out of nowhere
but in this place
beginning to lead everywhere.

Requests to stop what
you are doing right now,
and to stop what you

are becoming
while you do it,

that can make
or unmake
a life,

that have patiently
waited for you,

that have no right
to go away.

QUOTE: "In youth the days are short and the years are long; in old age the years are short and the days long." ~ Nikita Ivanovich Panin


  1. dear Susan - thinking of you this morning - just as the sun is rising. Remembering the same one eye/ear awakeness - glad that your daughter will be coming to visit - hugs and strength


  2. Hey, Catherine ~

    Thanks for checking in... and for thinking of me - it's frightening/comforting how similar this process is to infancy: the unconditional giving, the choices ("sleep when the baby sleeps" - ha!... when there's so much to be done) and the intuition that kicks in...

    It will be so good to see Sarah - I really miss my family (and friends) back home...

  3. Hi, Susan.
    This post takes me back to the months I spent caring for my father, who was wasting away with lung cancer.
    For some reason (trying to have some control?) I felt compelled to log every half hour of every day ... I wrote longhand on yellow legal pads ... what Dad ate, when he ate, how much he ate, what pills Dad took, when he took them, how much he took ... when Dad slept, where he slept ... and how he slept ... what his blood pressure was, his oxygen levels, his resting pulse.
    I too slept with one eye and one ear open, which all hearkened back to my baby days.
    Hang in there, Susan. I'm thinking of you.
    You seem like a wonderful daughter.
    Many blessings ...

  4. Hey, Kate ~

    It is a joy to be able to do this for my mother... and it is a nightmare that she's in this position - to witness her fear and helplessness is heartbreaking...

    Good point about control - I realized yesterday that there are so many things we *can't* control about the disease that I've become doggedly focused on the things we *can*...

    These last few days have brought peace, in the form of additional caregivers and increased information - we're trying not to get too wrapped up in the numbers (which we were doing previously) and to embrace the feelings...

    I really thank you for your continued blessings and check-in - it means much when I sometimes feel very alone...