Mom has been spending a
lot of time sleeping… and not eating or drinking much. Her breakfast intake has
been pretty consistent, until yesterday, but her dinner intake has dropped off
to maybe 6 bites before she pushes her food and drink away and says, “No.” Her
fluid intake is down to about 6 to 8 ounces a day. Yesterday and today, she
really didn’t eat more than a few bites of breakfast either day.
On Sunday night we had a
really rough night. Mom woke up about 4:30 AM and started trying to get out of
her bed. That is something she hasn’t voluntarily done in several months. In
fact, for the most part, she will fight getting up even to do her bath or
toilet routines. Sunday night, however, she was very agitated and every 20
minutes or so would push off her covers and, again, try to get out of bed. She
kept trying to tell me that she needed to get up. I thought at first that she
needed to go to the potty, then I thought maybe she needed to throw up. The
caregiver had been at the house for a couple of days before the doctors figured
out that her daughter had the flu, so we were worried that Mom might have been
exposed. Mom eventually pushed away the basin I brought her and said, “Not
that!” So I stopped worrying about her needing to throw up. I kept reminding
her that she could relax; that she was wearing depends so it was okay for her
to go without getting out of bed. She would relax a bit then start all over
again with her agitated behavior. Her temperature was elevated and, when I
asked her if she hurt, where, she would tell me, “I don’t know, I don’t know.”
At 8:00, when I thought
that my regular Hospice nurse might be at work, I called her and told her what
was going on. I asked her if she thought mom might have the flu or maybe a
urinary tract infection. She asked me about mom’s food and drink intake and her
sleep cycle of the past few days. When I had given her the information she told
me that what she really thought was happening was that mom’s organs are
starting to slowly shut down. That creates a pain sensation to which she is not
accustomed and, with her language skills further impacted by the Alzheimer’s,
she really could explain the pain she was feeling to me. That pain was causing
discomfort and anxiety which manifested itself in the behavior of the night
before. She had me give her an extra dose of her high powered Tylenol and
within about 30 or 40 minutes she was calm and sleeping easily in her bed. As a result, we are now giving her more
frequent doses of her meds and she is much more comfortable and happy.
A dear friend, who was
also a caregiver for us for a time, chewed me out for not calling Hospice at
4:30 when things started. She said that they are there 24/7 just for that
purpose and they could have given me guidance on what to do much earlier, thus alleviating
some of my worries and mom’s discomfort. Lesson learned. She also mentioned
that, in her work as a care giver, she has found the Hospice program that we
are using to be the best and she has worked with the nurse who
is caring for mom and is particularly impressed with her skill. I felt both chastened and comforted when I hung up the phone
from talking to her!
Our Hospice Nurse did tell
me that the process of organ shut down is not a matter of days or hours, per
se. She said it could take a few months or it could move more quickly. Much of
the timeline will depend on what other problems arise and Mom’s responses to
them. Remember that Mom has diabetes and that renal failure is a side effect of
diabetes, one that we have been holding at bay quite successfully to date. A
problem like that could certainly change things, but there is no indication, at
this time, that we are any further down that road than any other. So I am not
going to borrow trouble, but I am going to do as Hospice keeps saying and let
Mom’s body and her needs be our guide as we move on down this path.
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