Signs and Symptoms

When we entered hospice care back in January, we received a folder containing a lot of information:  Satomi’s vital information, policies, procedures, limitations, rental contracts, drug information, schedules and the like.  I reviewed it as I would any important document.

But there was one article inside that I just couldn’t bring myself to read.  It was called “Signs and Symptoms”.  That’s a lie; that’s not its full name.  It’s called “Signs and Symptoms of D_ _ _ _”.  I haven’t used the “D-word” in many months so please forgive me; it puts me in a bad place.  By the time you finish this post, the definition of the “D-word” will be painfully obvious.  I’ll call it “SSoD” for short.

There are many signs that the “hospice process” is proceeding.  SSoD is meant to inform so all we know what’s about to happen.  I’m going to paraphrase to save space.

Sleeping

It will increase as the body weakens due to the slowing metabolism.  There are times that we won’t be able to wake her at all.

Eating, Drinking, & Swallowing

She will have no interest in eating or drinking as things progress.  This is also due to the metabolism slowing.  Swallowing will become increasingly difficult.  The SSoD says that liquid intake will become a function of dryness and not dehydration.

Weakness & Confusion

She will be increasingly confused.  This is due to reduced oxygen flow and chemical changes in the body.  Her alert time will decrease and her sleeping will increase.

Breathing

Breathing will become very irregular and sound labored.  There may be periods of no breathing for up to 20 to 30 seconds.  This is a type of sleep apnea.  Initially it will be deep but will progressively become shallower and slower.  At that time, oxygen is appropriate.

Congestion

As she becomes weaker and dehydrated, she may not be able to easily cough up any mucus.  Breathing may sound differently.

Incontinence

Loss of bladder and bowel control will occur.

Pain

This is our primary issue and is to be monitored and controlled using techniques already in place.

Restlessness

It is a sign of oxygen deprivation.  Pulling at linens, moving in bed, trying to sit up, and the like are normal.

Body Temperature & Circulation

The chemical changes could induce temperature swings.  Reduced circulation may result in cold or discolored extremities.  The underside of the body may darken and the pulse may not be perceivable in the limbs.

Urination

Urine output will darken and frequency will reduce as water input decreases.

Unconsciousness

As mentioned in “Sleeping” above, there will be times that she won’t respond to any outside stimuli.

Withdrawal & Socialization

In the later stages, she will withdraw from her surroundings.  It is possible that she won’t want many visitors.

Hallucinations and Gestures

She may start to see and speak with others in the room that are not visible to all of us.  In some instances, she may do or say things out of her nature.

Other Information

The document also contains instructions on what happens next-who to call, etc.-and a lot of information on emotionally supporting the patient during their time of “transition”.  I’m not emotionally stable enough to write about that yet.

When I first got it, I knew what it was and it scared the crap out of me so I actually forgot about it.  Denial is a powerful tool. 

I only read this a couple of weeks ago.  I couldn’t ignore it anymore.  I had to be sure I was best prepared for what was to come. 

Afterward, I was sickened and relieved at the same time.  I’ve learned a few things these past months so this information wasn’t anything really new but to see it in writing gave me cramps. 

Even writing this post is giving me a huge headache.  But I can’t complain though.  I mean, how can I?  Just look at Satomi’s pain.