We are seeing some further symptoms of decline in the
last 24 hours, and, at one point we even feared we had lost Mom last night as
she didn’t seem to be breathing. When she started up again, my sister and I
looked at each other and said the apnea has begun. The Hospice information on
the end of life symptoms indicated that apnea would likely start occurring, so
we didn’t panic… once she started breathing again.
She is in much more consistent pain now. We have been
giving her 0.5ml of morphine for the pain and lorazepam for the anxiety that
accompanies the pain. We have now been instructed to increase the morphine to
1ml and to give her 2 Lorazepam tablets for now. One of my aunts asked me what
kind of pain she is experiencing and I realized that it might be helpful for
others if I clarified that here.
All of her organs are shutting down, slowly, and that
causes a generalized pain that, per the nurse, even a person who doesn’t suffer
from a brain with a thinking and processing problem can’t quite define. It is a
pain that we don’t experience in our lives and so it is unfamiliar to us. You
know what a stomach ache or a cut finger feels like because you have had it
before. This is a pain that is unfamiliar and seems to be coming from
everywhere. Additionally, the remaining muscles that she has are beginning to
cramp and jerk. That jerking motion causes stiff, sore joints and limbs to
twist and move in ways that are painful, as well. The last pain source that I
can think of is the low steady fever that she seems to have. As her body’s
ability to regulate its temperature breaks down she sometimes slips into a
fever like state. I’m sure that comes with all the aches and discomfort of a
normal fever, but she can’t tell me that, so I’m guessing on that one. We do
give her a Tylenol suppository for the fever and it usually stays at bay for a
while then with a bit of attention to details like covering or uncovering the
parts of her body that are getting too hot or too cold.
If you are a caregiver, you will find, as I and my family
members who are visiting did, that you struggle with the timing of the pain
medication. Do you give her a few more moments of wakefulness and risk the
onset of real pain or do you sacrifice a few more moments of loving interface
to keep the pain at a tolerable level. It is very hard for anyone who has not
seen the full onset of that pain to understand why you will not delay in giving
the medicines a bit longer. One of my sisters was spending the night last night
to help me and early this morning she got to see the full impact of that delay
on my mother. Mom had been sleeping hard all night after a long day of loving
good-byes from my other sisters and then her bath. Because she was so deeply
asleep she did not show signs of pain coming on. When I covered her with a
light blanket because her face was feeling chilly, that small change in weight
on her body caused her to begin crying out and twitching or jerking with the
pain. We got the medicines into her as quickly as we could, but she continued
to cry out and be in pain for 5 or 10 minutes until the medicines really kicked
in. That 5 or 10 minutes felt like an eternity to her watching daughters. You
don’t see a loved one suffer like that and willingly allow it to happen again,
I assure you.
One thing we did notice though, was that once the pain
and anxiety medicines took effect, then Mom was able to wake back up and
actually interface with us again. Prior to that point she had been glassy-eyed and
staring past our faces at nothing. Where I had thought that the morphine made
her sleepy and less communicative, I began to realize that it was the pain
doing that and I remembered, in the morning good-byes my other sisters had made,
she woke up, after first falling asleep, and was able to call them back for one
more kiss and an “I Love You”. I guess I still have a lot to learn about this
dying thing.
Some of the other symptoms that we are seeing now would
include the fact that her head tends to turn to one side and, at this point, it
is very painful for her if we try to turn it back in the other direction for
her. She can’t do it, as the muscles in her neck must have atrophied enough to
prevent it, or the pain of moving that much is overwhelming, because, when she
tried it herself one time, she cried out and stopped turning. So we try to sit
on that side of her bed if we are talking to her.
She is also continuing to have some pigmentation shifts
in her skin. The yellowing is picking up and doesn’t seem to be going away this
time. The blue tint that shows up in her hands now and then is not yet staying,
though.
Her mouth is so dry that we have to swab it several times
during the day because she is not making saliva any more. We keep putting lip
balm on her lips to prevent them from cracking and, as often as we can get her
to take some, we still give her “sips” of water on a sponge. She is getting to
a point where she bites down on the sponge and won’t let us take it out of her
mouth. We have to cajole and wheedle and sometimes even pry open her teeth a
bit to get the sponge back out.
I will say, though, this morning, when the medicine hit
her system, we got the wonderful loving smile that is my mother’s trademark.
When I kissed her cheek and told her I loved her, she was able to say, “I love…”.
I told her I knew she loved me too and she smiled before going back to sleep.
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