1. AMDA > "Caring for the Ages" Selected Articles > December 2002
Caring for the Ages
Selected Articles from
December 2002;
Vol. 3, No. 12
A Daughter's Journal
The Loneliness of the Long-Distance Caregiver
by Ann D. Gross
In this new column, New York City-based health care consultant Ann D. Gross
chronicles her experiences with her mother's move into long-term care.
My elegant, tough, beautiful, classy, feisty 83-year-old, mother, who two months
ago was screaming at me to use the correct plates when my brother and his family
came for dinner in her lovely ocean-view apartment in Florida, is in the fight of her
life. The fight may well be with a CNA at the skilled nursing facility where, to her
dismay, she now finds herself, no matter how many times she falls asleep and
wakes up hoping it's a bad dream.
Her "adjustment" (for lack of a better word) has been nightmarish, even as she
exists in a dreamlike state of disbelief. "How did this ever happen to me?" she asks
over and over again, to anyone who will listen. She needs two people to help her
stand up or transfer to any seat. When they struggle with her, "stand up straight,
now, honey, get your balance first," she replies, "how did this happen to me? You
should have seen me. I was walking just fine on my own." She tries to distract them
with triumphs of not-too-long ago, but together the three of them struggle to get her
dressed, or change her diaper, or get her to the toilet, or not.
The Evil, "Difficult" Visitor
My Mom's descent began when the evil Clostridium Difficile, a spore-based
bacterium (dba "C. Diff") visited itself upon her, several months ago. Living on her
own since January 1999 when my father died (at 94), she had been vehement
about her independence. Ultimately, she gave in to my pleas to install a Lifeline
device in her apartment, and agreed to wear the bracelet constantly. She chose the
bracelet because "the necklace made me look like an old lady," she said. As is true
for so many older adults today, my mother does not consider herself "old," nor did
my father consider himself old. Neither was old in the sociological view. Until the
evil visitor darkened my Mom's doorstep.
For Mom, the C. Diff characteristically started with what seemed to be a benign
stomach ache. Then the diarrhea started, and wouldn't stop. My Mom was at war
with her own body, and tried desperately to take care of herself, even cleaning up
2. A Daughter’s Journal, by Ann D. Gross, “The Loneliness of the Long-Distance Caregiver,”
published in Caring for the Ages, December, 2002
The Loneliness of the Long-Distance Caregiver Page 2
the foul-smelling stool that spilled onto her bathroom floor and eventually onto the
ironed cotton sheets on her king-size bed.
But she knew she was in trouble. She was grossly dehydrated and depleted. Her
heart was racing. She was admitted to the hospital that day for "Clostridium
Difficile and arrhythmia." Little did she know that this was just the beginning of the
harassment from the evil C. Diff.
I immediately flew down to see her while she was hospitalized in the skilled
nursing unit of the local hospital, and was surprised to see that her speech was
slurred and that she could no longer walk or lift herself up in bed. She couldn't
even turn over. When the aides sat her in a chair, she listed to one side, unable to
sit up straight. Her doctor said she had had a transient ischemic attack. But the
operative word is "transient." As time went by, it was evident that she'd had some
kind of cerebrovascular accident when her heart went into arrhythmia, but no one
seemed able or willing to diagnose it exactly.
Initially, my mother embraced the idea of going just for "rehab" to a nearby not-for-
profit nursing home. The SNF had won the state's "gold circle award" (which to me
sounded like an award a condom should win, but it sounded good to Mom and my
brother).
Having recently earned my masters in gerontology, I was uneasy about my Mom's
transfer. I thought of the worst characterizations of the for-profit nursing homes I
had read about. I thought of the horror stories of the worst of them and of how my
beautiful, snobby mother would fare in an institution of almost all elderly, frail
residents. Like many older people, she prefers the company of younger people. She
seemed to me like a lamb going to slaughter; she believed she was going to the
rehab/SNF for a brief time so she could get back home, but no one yet knows what
the outcome will be after her Medicare rehab benefits are exhausted. She hasn't
even seen her home for two months and counting.
A Clean, Well-Lighted Space
But it turns out the SNF itself, supported in part by the community, is beautiful. It
has a long, glass-enclosed corridor on the first floor, with several doors swinging
out into a beautiful garden and patio. The senior staff are delightful and welcoming.
It feels a bit like Mom is going to her first day at sleepover camp. Everyone is edgy,
and smiling their best smiles, wondering how the "new girl" will like it, and
whether she'll cause a fuss and disrupt things for the others.
Because of work and home life, I couldn't get down to see Mom in the SNF for four
weeks or so. When I walked into her room, she cried like a baby. She was quite
overcome seeing me there, entering her little room. I said, "Mom, I'm not that
ugly," just to give us some comic relief and so my heart wouldn't break into pieces
3. A Daughter’s Journal, by Ann D. Gross, “The Loneliness of the Long-Distance Caregiver,”
published in Caring for the Ages, December, 2002
The Loneliness of the Long-Distance Caregiver Page 3
I couldn't put back together. Right then, I thought about how I could ever leave her
there.
It seemed that the C. Diff required something on a nuclear scale to eradicate
completely; it's like a bad science fiction movie--with this recurring infection that
slowly takes over my Mom's gut, and brain, and all our lives in the family.
My Mother, Myself
When I visited my Mom at the SNF, my days were filled with remarkable
juxtaposition--in the mornings I got up, had the full run of my Mom's apartment.
The master bedroom has a sliding glass door that leads out to a small balcony,
overlooking the ocean. When my Dad was alive, I only ventured in there to visit
him when he was on his sickbed. After Dad died, it became my Mom's haven. I
didn't dare enter. It had her familiar Mom smell, which still comforts me, although I
am in my late 40s.
But suddenly, there I was. Sleeping in the forbidden king-size bed. My Mom would
ask me questions about her room and tell me how pleased she was that I was
enjoying the apartment. But still it made me feel guilty that I was enjoying her
home while she was fighting for survival and attention in a tiny room off a corridor
with bright lights and the frequent plaintive yelling of the residents.
My day at the SNF visiting Mom turns to finding ways to make Mom's moments
better--make her more comfortable, make her laugh, make her anything, to take her
out of her bodily miseries. But I can't say the juxtaposition is one of fun vs.
drudgery. It's really a matter of focus--in the morning, I am focused on myself and
my needs; in the afternoons and evenings, I am focused on Mom and her needs,
and the needs of anyone else I encounter that I can help, including residents and
staff. I try to give them a chance to vent or talk about how tired they are or
whatever is bothering them.
But I can't say the nursing home is awful or even depressing. The senior staff are
amazing--they seem to take it personally if someone isn't happy, and want to know
what to do to make it better.
Many of the residents are delightful. My favorite, from New York, is going on 92
next month (more like 42 for her wit and charm) and is beautiful and sweet and
hilarious. She is the head counselor and information CEO as far as I'm concerned.
Personally, I think she should be on the payroll. If you want any lowdown, you go
to Rae to get the straight scoop. One night, Rae accidentally on purpose ran over
her oxygen hose, so the machine started making a sound like an ambulance. She
wanted to get undressed and didn't feel like waiting any longer. She got the CNA's
attention all right, and fast (instead of waiting her turn with the other folks on the
floor). He was great with her and we all had a good laugh.
4. A Daughter’s Journal, by Ann D. Gross, “The Loneliness of the Long-Distance Caregiver,”
published in Caring for the Ages, December, 2002
The Loneliness of the Long-Distance Caregiver Page 4
And how is my Mom doing? Well, she's frustrated as hell and angry and some days
feels just plain lousy. When she sees the food at the SNF she is even less interested,
which means she's not eating or drinking enough, which means she risks
dehydration. Although the nursing staff assures me they are monitoring her intake, I
don't see any evidence of it. But I reassure her, when she notices the same lack of
attention, "Mom, there is a lot going on behind the scenes; they're paying close
attention." And I try to believe my words meant to comfort her.
Food & Love
On my last night before flying home to New York, I go around the corner to the
health food store, and get us some vegetarian- based pea soup, and sandwiches. I
bring Mom's favorite placemats from her home--hand-painted wooden laminated
mats, with different scenes of Boston. She prefers the sailboats on the Charles with
the Prudential building in the background. I like the one with the Swan Boats, one
of my favorite memories of growing up outside of Boston. I bring her dishes and
glasses and cloth napkins and stainless steel cutlery, and I cater a meal to her on
the patio. It is about 500% humidity and 85 degrees that night, but she eats!!! And
she drinks! And my heart leaps up in joy to see her do both.
So we sat on the patio and enjoyed the infrequent breezes and were thrilled and
sad to be together there. My time down there with Mom is too long away from my
real life, and too short with her. The hours at the SNF are too long, but the time
with Mom is too short. I tell her I don't want to hear anything more about what's
bad or awful, and she agrees, and says things like, "I just want to get out of myself. I
want to get out of my body, and I want to get out of the way I act." So how angry
can I be at her? It's a mother-daughter dilemma, particularly poignant right now,
given her battle, and my residence far, far away in a distant galaxy called Gotham.
My physician friend in Boston, quoting our native son, JFK, called up the image of
Mom's "twilight struggle." And so Mom and I struggle and love into the twilight,
and hopefully into the next dawn....and the next and the next.
A Daughter’s Wish List
* The incoming resident may have many intense emotions, including anger, fear,
resentment, and loneliness.
* Always screen for depression in the incoming resident: depression can explain
a great deal of an older adult's behavior.
* Listen to family members if they tell you that they observe a change in their
loved one's emotional or physical status.
* Don't slap on an immediate diagnosis of "dementia" for an incoming resident
who shows cognitive impairment. Check with family members and the resident's
