From 11 December 2013 interview with Sir Terry Pratchett, who had
early-onset Alzheimer’s and who just died: “Care, mostly for
people with dementia, is not as caring as it may seem, by any means.
I think that if someone thought they would have really good care,
possibly end of life care, care, at least, with dementia, it would
lose at least a considerable amount of the fear.”
My mother has dementia. She’s had
symptoms for 8 years. The world our family has inhabited since then,
the world of Alzheimer’s disease, has been so subtly yet
excruciatingly crazy that it’s hard to know how to begin to
describe it. And I don’t like to describe it because I don’t want
to be a whiner and a complainer. Our family is incredibly privileged,
my life is very blessed in almost every way imaginable, everyone
involved is doing the best they can, and billions of people on this
earth have it worse than my mom. Yet, I think I have an important
story to tell. So I am sipping a $9 gin and tonic in the airport
restaurant, hoping that the gin will lubricate my story telling.
I live in Seattle, 800 miles north
of my parents. I fly down monthly to spend a long weekend. I am
writing at the end of one such weekend.
Today at 3:30 I went to my mom’s
dementia care home for a visit. She lives at an Aegis facility. This
is a top of the line facility. Not the tip top, but close to the top.
It is the best facility within a 15 minute drive from my Dad’s
house in the San Francisco Bay Area. If any metropolitan area is
expected to have top of the line stuff, it’s the San Francisco Bay
Area. Aegis is a west coast chain based in Seattle, and Aegis of San
Francisco houses about 85 assisted living residents, including about
18 in the dementia care unit. That unit is called Life’s
Neighborhood.
Life’s Neighborhood occupies most
of the ground floor. It is separated from the rest of the facility by
alarmed doors – anyone can freely enter, but to exit, you need to
punch in a 4-digit code, otherwise the alarm will sound. The insides
of the doors are painted to look like bookshelves.
I entered
Life’s Neighborhood and went directly to the large community room.
This is where most of the residents spend most of their time. I’m
glad about this.
I went to the community room and,
not surprisingly, found Mom sitting with other residents uttering
words of distress. Specifically, she was seated with Bobbie, Bobbie’s
daughter Donna, and her son-in-law Ron. Donna and Ron, bless their
hearts, are kind to my Mom and try to ease her distress, but often
there is little they can do. Bobbie has both dementia and bipolar
disorder. She is fairly lucid and very talkative, and often she gets
on Mom’s nerves.
I approached Mom from behind and put
my hand on her shoulder. “Look, your daughter is here,” said
Donna. Mom looked at me. “Terry! You’re here! What’s happening
to me? Please help me.”
Since Mom moved to Aegis a year ago,
she’s experienced periods of distress almost every single day.
Sometimes these periods last for hours. Often, if I arrive during
such a period, she calms immediately. Today was not one of those
times.
For the next three hours I stayed
with Mom, trying various strategies to soothe her. I held her hand,
sang her familiar songs, and said familiar prayers with her. My sense
is that, when she is distressed, inhabiting her mind is nightmarish.
In this sense, dementia is similar to other mental illnesses.
Dementia (Alzheimer’s being the
most prevalent form) is commonly thought of as a disease that steals
one’s short term memory. This is just the tip of the iceberg. Short
term memory loss is simply the first obvious symptom. Dementia is a
gradual loss of brain function. After the short term memories go, the
long term memories go, along with awareness of one’s own condition
(after the initial stages of dementia, people lose the understanding
that they have dementia) and the abilities to reason and converse.
Then, abilities such as bladder and bowel control, the ability to
walk, and the ability to eat and drink go away. Finally, the ability
to breathe goes away, and the person dies.
It is not surprising that the person
with dementia experiences distress along the way. Coping mechanisms
that they have relied upon over a lifetime no longer work. Situations
no longer appear as they once did.
For unknown reasons, distress often
intensifies at the end of the day. This is called sundowning,
and Mom has experienced sundowning for years. Today she sundowned
hard.
I stayed with my Mom as she
repeatedly and plaintively said things like, “I’m afraid. Help
me. What should I do now? What was that noise? Who is that man? Why
are there so many people here?” I patiently replied to all her
questions, but usually, as soon as a reassurance was offered, a new
concern arose. It appeared to me that she was simply ill at ease, and
that no reassurance was going to work. Mom has been a fearful person
her whole life. She was good at hiding it, but those of us close to
her could see it.
Mom’s short term memory is now
extremely short. Generally, she can remember something for about 15
seconds. Some impressions last longer. For example, after she has had
a visit from her husband or children, she will ask staff, “Where is
my husband?” or “Where is my daughter?” with greater frequency
than usual. She won’t consciously remember that she’d had a
visit, but some part of her being knows she has.
One of the 17 or more crazy things
that happened this past weekend was that Genalynn, the assistant
director of Life’s Neighborhood, said to me, “I really can’t
say this to families, but it’s almost better if they don’t visit
very often. Better if they visit just once a week. Because after they
leave, the resident is usually agitated. They ask for their family
members and sometimes they try to exit Life’s Neighborhood.”
Why is this crazy? Because visits
from family, for some residents, are the most joyful times of their
day to day lives. There is little joy in Life’s Neighborhood. There
are indeed joyful moments during activities, especially during
singing, dancing, ball tossing, or art projects. But this joy is
experienced by only a fraction of the residents—those that have the
capacity to participate in such activities. Many residents spend
nearly the entire day sitting in a chair, doing nothing, and
interacting with nobody.
During my last visit I asked Ralph,
the LN director, about a particular resident: “Look at Mr. N over
there, sitting alone at that table. It seems that he doesn’t get
any interaction with anybody all day, except during personal care. I
can’t help but wish,” I said as diplomatically as I could, “that
every resident, even Mr. N, could have at least 30 minutes or an hour
of 1:1 time with your staff.” Ralph said, “We’ve tried
interacting with Mr. N. He says he doesn’t want any company.”
“I am not convinced that he
doesn’t want company,” I said. “Perhaps he just needs to be
approached more gently.”
The staff at Aegis is nearly 100%
Philipino immigrants. It’s not politically correct to generalize
about people of particular ethnic origins, but that’s a pity,
because generalizations are often both accurate and useful. What I
greatly value about the Philipina and Pilipino caregivers I have
observed is a patient, accepting, generous, and humorous nature.
However, I don’t see a lot of sensitivity and finesse. Perhaps
finesse is in short supply in the human race. But most of the care
staff of Aegis, with the exception of the medication technician Lulu
and perhaps the head nurse Josephine, approach the residents somewhat
abruptly. “Mr. N, would you like to play with the bouncing ball
now? Come over here. We would really like you to join us.”
I have little training in dementia
care, but I know from working with my own mother that Mr. N probably
needs someone to sit with him quietly for 15 minutes and gently
engage him before bringing up the idea of tossing around a bouncing
ball.
Even then, Mr. N likely would not
enjoy the ball activity. That doesn’t mean he doesn’t have the
capacity for enjoyment. There are more subdued activities that have
been found to be engaging for people with dementia, especially those
in the later stages. But it does not appear that the staff at Aegis
provides that kind of engagement. One must hire additional help to
get this kind of thing. Our family hires an Activity Specialist from
Sage Eldercare, a geriatric care management consulting firm, to
provide this to Mom. Twice a week, Miyoko comes and shares scent and
tactile experiences with Mom. She will also gently, and with finesse,
engage Mom in creative activities such as coloring with colored
pencils. For this, we pay Sage $65/hr, including the time Miyoko
spends traveling to/from Aegis and writing up a report of her
session. All told this is about $200/session. We have the means to
pay for this. I imagine we are among the top 1% of families in this
regard. We are incredibly fortunate because Mom has nearly $1 million
of her very own, inherited from her parents and her sister who died
young. We can spend all of this on Mom’s care. I wish Mr. N could
have Miyoko visit him twice a week. I wish that he and Mom and all
Aegis residents could have Miyoko twice a day, all days of the week.
Talking to Aegis management about
this makes me feel like I’m in a bizarro world. These people would
not have the jobs they have if they did not have a passion for
eldercare. But either they do not have great sensitivity for the
needs of people with dementia, or working in the industry has created
a numbness. Because when I ask them, “Don’t you wish you had more
staff so that your residents could have more 1:1 attention?” their
answer is not an immediate yes. How can it not be?
The hands-on staff, the ones who do
dressing and bathing and toileting, and serving of meals, and
cleaning up poop that has gotten on the floor, the ones who separate
residents who are getting on each other’s nerves and wake people
for breakfast and entreaty them to throw the bouncing ball and
respond when they set off the alarm by trying to exit—at Aegis,l
these people have the job title Care Manager. The reason behind this
apparently inflated job title is, according to Ralph, because these
people manage the care of the residents. The care managers have a
tough and often distasteful job, and their pay is very low. My guess
is that it’s about $13.50/hour plus benefits.
I never see Care Managers engaging
with residents unless it is for the purpose of keeping them groomed,
fed, toileted, medicated, uninjured, and calm. The sense I get in
Life’s Neighborhood is that the primary goals are order and calm.
When that is achieved, Care Managers congregate in the kitchen area.
It’s not like they have a ton of down time, and I fully support
them getting a break when they can. But I never observe them just
chilling with the residents. They don’t seem bonded to them; they
don’t seem to experience deep affection for them.
I wish that the Care Managers had,
as part of their job, being friends with the residents. Maybe people
with dementia aren’t everyone’s favorite for social interaction.
But wouldn’t it be more fun to spend 6 hours a day changing diapers
and 2 hours a day hanging out with people, than to spend a full 8
hours a day changing diapers? Sure, Aegis would have to hire more
staff, but at that rate of pay, and the 1:6 staff:resident ratio, I
figure this would end up costing each resident about $20/day or
$600/month. Given that it already costs $5000 to $10,000/month to
live there, the added $600 is only about a 10% increase. And maybe it
would end up costing less, because maybe if the Care Managers were
more bonded to the residents, the rest of their job might become more
fun and thus easier. OK, I don’t really know anything about this,
but it seems to kind of make sense, right?
Instead, if the family of any
resident wants more personal attention for their loved one, they have
to hire from outside at a rate of $30/hour minimum. Most such help
requires a 4 hour shift minimum, so a family pays a minimum of
$120/session for such help. It is possible to get help for half that
rate by hiring under the table and paying cash; Aegis discourages
this but allowed us an exemption. Still, we must pay a minimum of
$60/day for Mom to have 1:1 attention.
The obvious person to give Mom 1:1
attention would seem to be her husband. Dad is healthy, vigorous
even, and lives just a 10 minute drive away. Mom is constantly asking
for him. But Dad visits Mom only twice a week, when Mom’s private
caregiver Liza is there. Why is this? In broad terms, it is because
Mom is no longer the woman Dad married. He doesn’t know how to
interact with her. He still tries to interact with her as though she
did not have dementia. “Joe, I’m scared. Help me.” “Emily,
why are you afraid? There is nothing to be afraid of.” He likes to
visit when Liza is there because Liza provides a buffer. Lately I
have seen Dad rub Mom’s hands and shoulders. It is a joy to see
this, because it is something that Mom very much enjoys (when she is
not already distressed) and Dad was initially reluctant to do it. I
would like Dad to be there more to rub Mom; perhaps I will try to
find a way to make this happen.
When Mom lived at home, she would
become afraid of her husband nearly every evening. As much as she
asks for him now, when she was living at home she would call me
several times a week to tell me that she really was afraid for her
life and she didn’t want to live with Dad anymore. This no doubt
got under Dad’s skin.
Health care is fragmented for
everyone in the U.S. For Mom, it is doubly so. Mom has three doctors:
her primary care physician, the one she’s had for decades; her
oncologist (she has breast cancer), and a geriatrician.
Each of them has prescribed multiple
medications. The geriatrician’s primary responsibility is to manage
Mom’s psychoactive meds, the ones that are supposed to ease her
agitation. But when the geriatrician visits, she only sees Mom for a
brief time. Then, the meds she prescribes are not ingested with any
precise timing. Mom resists taking medication. The staff says that
she will resist even if it is offered in jam or ice cream. Sometimes
she gets her meds at 4:30 and sometimes at 8:30 or even in the middle
of the night. I have no idea what her mood cycles would be like if
her meds could be delivered more regularly.
When Mom first moved into Aegis, her
1:1 caregiver Aleli was telling me the horror of the place over the
phone. “This place is no good for your Mom,” she said. “Everyone
is worse off than her. One man keeps yelling, ‘Help! Help!’ all
day.” I could hear him over the phone.
How could a resident be calling for
help without someone coming to comfort him right away?
Later, when I was able to visit
Aegis, a staff person told me that Mr. Gerbaldi used to be a fire
fighter. He says “Help me! Help me!” because that is what he used
to hear from people at the site of a fire, and he says it as sort of
a nervous tick. He doesn’t really want any help and if you ask him,
he’ll say he’s fine. That made me feel more at ease about the
situation.
Over the months I began to interact
with Mr. Geribaldi. If I was walking down the hall and passed him as
he was calling for help, I would pause, kneel beside him, and say
hello. He would stop calling for help and we would chat for a while.
Every time I did that, he said, “I really appreciate you taking the
time to stop and say hello. Most people don’t stop.”
I saw sometimes that Ralph would
stop briefly with Mr. G and say, “What’s the matter?” Mr. G
would say, “The same thing.” Ralph would say, “Remember what I
told you--you should pray.” “It doesn’t help.” “Pray
harder,” Ralph said, as he proceeded down the hall to
wherever he was needed.
That gave me the idea to ask Mr. G
if he’d like to pray together. We began saying the Lord’s Prayer
several times at a go. Mr. G would smile at me, and it would melt my
heart. I knew that he appreciated my brief visits and worried a
little that it would make the alone time more painful for him.
This past weekend I spent even more
time with Mr. G. Specifically, on Saturday afternoon Dad and Liza
took Mom into the Aegis parlor (outside Life’s Neighborhood) for
so-called Happy Hour, a time with live music and refreshments. I
don’t care for Happy Hour so I decided to spend that time in Life’s
Neighborhood visiting with the other residents. Yesterday I spent
that time with Mr. G, at least 30 minutes. We had quite a
conversation. I learned where his fire station was located, that he
likes to dance foxtrot, that he has no children and his siblings have
passed away. He asked me about my family, where I live, and what I do
for a living. He was far less impaired than my mother.
Finally, this exchange:
Mr. Geribaldi: “I wish we could
have met under better circumstances. I’m not well. I’m not right
in my mind. I’m miserable. I keep thinking about the same thing.
The same thought is stuck in my mind.”
“Do you mind if I ask – what is
that thought?”
<pause>
“I keep thinking about a certain
person.”
“And that makes you miserable.”
“Yes. I feel miserable, and then I
feel like crying out. I feel like crying out, ‘Help me. Help me.’”
Compassion arose for me. Mr. G no
longer seemed like a crazed person nonsensically crying out “Help
me” when nothing was amiss. I had a visceral sense of what it might
be like to be him, to be miserable, to cry out “Help me” if for
no other reason than to interrupt the painful thought cycles.
I don’t like the way personal care
is offered to my mother. I’ve witnessed her evening care a few
times and it is humiliating to her. When she lived in her home, she
was able to get herself ready for bed. She would take off her top and
her bra, slip her flannel Lanz nightgown over her head, then remove
her trousers and socks and contentedly slide into bed. During her
first few months at Aegis, when I visited, I assisted her personally
in her evening care, and it was much the same.
One evening, I asked to be present
while a Care Manager performed her evening care. The Care Manager led
Mom into the bathroom, instructed her to sit on the toilet, and
quickly removed all of her clothes, including her panties. Mom looked
at me with a distressed expression, as though to say, “Why are you
letting this happen to me?” The Care Manager sprayed a wipe with a
solution and cleaned Mom’s genitals, then quickly gave Mom a sponge
bath. Then she put Mom’s night clothes on.
I was speechless. Did it need to be
this way? I could have asked this, but I didn’t. I didn’t want to
tell this woman how to do her job. I was shocked that this is how
she’d been instructed to act. Later I observed other care managers
and they did the same. Bedtime can be a time of gentleness,
reassurance, and bonding, but this is not what I’ve observed.
