Dealing
with these last six years of widowhood has also been impacted by my increasing
responsibilities with my mom. Because I am only able to visit about once a
month, I am much more aware of the gradual decline in her activities of daily
living. The nursing staff seems to adjust to incremental changes in her behavior
and memory. I see the cumulative effects and wonder how they could miss her
increasing inabilities to direct her own care. They think she’s brushing her
teeth. I see that she needs to have the toothpaste placed on the toothbrush and
put into her hand then her technique monitored. They think she is cute when she
can wiggle her butt in time to a tune. I see that she needs help walking down
the hall by herself and that she has foot drop in her left foot which has not
been propped when she’s in her bed. They think she understands when they ask
her a question. I find that she has no memory of ever being asked these
questions. Her dementia and hallucinations are increasing, but no one, as far
as I can tell, is aware of her inaccuracies unless I tell a staff member.
When
she wants a staff member to like her, my mom gives away something of her
personal effects. Sometimes these items have had my name on them. When I go to
retrieve the item, it is gone and no one knows where it went.
In
this last year, a situation developed that has me asking the ultimate question,
“Who has the final say?”
A
year ago, my mom stopped being enthused about eating. When I was asked in a
care meeting what I wanted them to do, I answered that I didn’t want them to
force feed her with pureed food or Enfamil or any of the other high protein
drinks. My decision was noted and recorded.
At
the time, my mom was noticeably losing weight and was weakening. Because there
is no other disease process that could cause her to die, I accepted the fact
that she was, in her own way, deciding to let go of this life.
After
about six months (of monthly visits) I realized she had a distended belly and she
no longer had irregular breathing. Her level of energy was still down, and she
was still sleeping 22 hours a day. But her weight had increased. When I ate
with her in the dining room, I noticed that she was served a milk shake. I
asked about that. The dietary workers reported that a special milkshake made
with added ice cream and a packet of Instant Breakfast was being served my mom
at every meal.
The
next day, I had the opportunity to include the dietary advisor in a
conversation with my mom. The woman heard my mom distinctly say that she wanted
to die and join with my dad. The advisor said she was glad she had heard this
request as she hadn’t been aware of my mom’s wishes. I told this woman that my
mother had been requesting this since admission to the floor five years ago.
At
a quarterly care meeting that same day, this advisor was present, along with
other administrators and advisors. My soap-box speech to them went something
like this: “I appreciate your attention to my mom. She seems comfortable and
attended to.
“I
just want to remind you that because my mom has dementia, she is not able to
tell you in a sequential way, which you require of her on certain life-threatening
or affirming issues, that she wants to die. She can tell me she wants to die,
but by the time I get the nurse to come in, she’s forgotten her statement. She
can tell me that she doesn’t want the doctor to do anything to bring her back,
and she does have that listed on her Medical Directive. Yet when she uses the
only method available to her to approach a condition that could help her cross
over, you ignore it. The only thing my mother could do six months ago to change
her circumstances was to stop eating. Despite my direct request, she has been
receiving extra calories, and you have brought her back.
“I
realize that Medicare requires some action be taken when there is a rapid
decrease in weight or when the weight change is more than a certain percentage
in a certain period of time. I also know that our documented agreement at a
previous care meeting is enough to negate that very action which Medicare
requires your facility to take.
“I
just want to know: how can my mother’s wish to die be acknowledged? Who has the
final say?”
At
that meeting, it was agreed to serve my mom a plain milkshake only if she asks
for it. She rarely does, because she doesn’t remember it’s available.
Ironically though, she usually remembers to ask for a beer which the doctor
finally ordered so it would be available for her if she requests one. She asks
for one at lunch and dinner, every day.
