Our Hospice Journey - Transitioning

So, here we are at the 2½-month mark since Mom's fall and being admitted into hospice and the bottom line is,
Mom's condition is deteriorating relatively fast.

Mom & Dad 1954 Wedding Day

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Note: If you haven't had a chance to read my two previous posts that explain how we got to this point, you might want to take a peek:

Our Hospice Journey, the Beginning, and

Our Hospice Journey - Week 6 Observations

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I stayed a little longer at the nursing home Wednesday hoping to catch our hospice nurse on her usual visit... it's been three weeks since I last saw her as she went on vacation and while other nurses filled in, it just wasn't the same -- I really like Mom's hospice nurse!  Well, she did come... after I left, but thankfully she called me right after she saw Mom.  She was stunned to see how much Mom had declined in three weeks time.  In fact, Lois, our nurse, couldn't even wake Mom!

Nurse Lois asked me to tell her every new development I had noticed, and being I am pretty well read on what to watch for, I was able to give her the information that would be pertinent.  I also knew Mom had just received her midday pain meds., so I wasn't too surprised that Lois couldn't awaken Mom as she has been a little more difficult to arouse at times.

 Lois and I agreed that Mom definitely seems to be "transitioning", that is, entering a stage within the hospice experience where the patient shows signs and symptoms of transitioning from life to death -- more actively dying.

Mom, a work photo
1980's-ish?

  Now the big question always is, how long does Mom (or anyone) have to live?  And although it may seem rather impertinent to inquire or even think; let's face it, deep down, that's what we all wonder; not that we want to appear uncaring or hoping they would die; but there is a natural curiosity, as well as wondering when to say our last good-byes and of course, on the pragmatic side, whether we should be tending to the affairs of a funeral now & adjusting our schedules - or do we have time.

So getting back to "transitioning"... of course everyone is different and there are so many personal dynamics, but on average,

   "There are two phases which arise prior to the actual time of death: the "preactive phase of dying," and the "active phase of dying." On average, the preactive phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days." .
[from "Signs and Symptoms of Approaching Death"/www.hospicepatients.org] 

Below is Hospicepatients.org's list of signs in each phase, which most all hospice sites agree upon.  Not all patients show all of these signs, but many of these signs will be seen in most patients.

Signs of the preactive phase of dying:

• increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
• withdrawal from active participation in social activities
• increased periods of sleep, lethargy
• decreased intake of food and liquids
• beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
• patient reports seeing persons who had already died
• patient states that he or she is dying
• patient requests family visit to settle "unfinished business" and tie up "loose ends"
• inability to heal or recover from wounds or infections
• increased swelling (edema) of either the extremities or the entire body

Signs of the Active Phase of Dying

• inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma)
• severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or personality
• much longer periods of pausing in the breathing (apnea)
• dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
• other very abnormal breathing patterns
• severely increased respiratory congestion or fluid buildup in lungs
• inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
• patient states that he or she is going to die
• patient breathing through wide open mouth continuously and no longer can speak even if awake
• urinary or bowel incontinence in a patient who was not incontinent before
• marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown)
• blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30 point drop)
• systolic blood pressure below 70, diastolic blood pressure below 50
• patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
• patient complains that his or her legs/feet are numb and cannot be felt at all
• cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet, knees, and hands)
• patient's body is held in rigid unchanging position
• jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards

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 Of course, with my Mom having Congestive Heart Failure (CHF),  who knows?  CHF doesn't play by the same end-of-life rules -- in contrast to patients who have cancer and other diseases with a clearer trajectory, CHF does not have an identifiable terminal phase.  This is due, in part, because there are so many variables with CHF; most notably, CHF's typical roller coaster pattern of exacerbations & remission with patients bouncing back from the brink of death (for a while) that often fosters a false sense of perpetual recovery; a denial that CHF is terminal, and then "surprised" by death due to sudden cardiac arrest -- before they reach the hospice stage.  Sadly, most heart patients don't make it to where Mom is now, so life-expectancy prognostications for heart patients is still a rather unknown territory and often inaccurate.  Mom's condition has already shown almost every sign of nearing death to one degree or another, but she still manages to pull out of it ever so slightly for a few days (or minutes).

Congestive Heart Failure
Life Expectancy Data & Terms:

"While advancements have been made, 50% of patients will have an average life expectancy of five years. For those with advanced heart failure, up to 90% will pass away within one year. When asking how long can you live with congestive heart failure, those at a moderate stage will average ten years".Feb 17, 2015 ~ Griswold

(some have been known to live much longer)


At the time of Mom's diagnosis, she was already considered having "advanced heart failure", but seemed to live relatively well for a year and a half on her roller coaster pattern, always bouncing back, but not quite as well with each subsequent cardiac event.  However over the last six months prior to her fall, she started a steady decline with ever-increasing weakness, unsteady heart, and loss of appetite which seemed to be the start of the end-of-life process for her.  Then, her fall this past November 3rd with breaking her hip & elbow, became the final catalyst to sealing her demise.

So in using hospice terminology, I believe Mom has already been in the "End-of-Life Phase" for about 9 months, as this phase can mean a patient can live for years to months; meaning the patient is dying, but death is not necessarily imminent.  However, now the hospice doctor & nurse, as well as I & my husband, agree that Mom is beginning to transition and we are no longer talking months, but weeks until her passing.  Sometimes it seems like she could have only a couple more weeks at best, and at other times it seems like maybe six to eight weeks, but we all agree that it's a mystery that Mom is still with us and we wonder how she can keep on going... surely it can't be much longer.

Here are my latest observations:
(after rereading my last post, I was shocked at how "good" she was doing then compared to now) 

1. Sleeps most all the time; Mom now prefers sleep over anything/anyone.  I'm doing good if I can keep her awake for 5 minutes.  It is sometimes difficult to arouse her or takes a while.  Sometimes she seems to realize that I'm there, but not Jeff & the girls.  Sometimes I'm not sure if she even knows me.     

2. Withdrawn/Unresponsive; she will just barely answer questions or often doesn't answer at all; and rarely says something on her own, or if she does it might be confused or makes no sense.  If she does respond, it's a delayed response and usually just a quiet "uh ha".  Talking is hard work.

3. Confusion; A week ago she had a rare chatty visit with me, unfortunately, about 99% of what she said was nonsensical.  I always like to see the humor in things, and I must admit, sometimes it's hard not to laugh, but she speaks of her reality, and I don't blink an eye.  Sometimes she is more agitated.  Not only is speech confused, but so is everything else. 

4. Lack of Movement: Mom is extremely weak and her limbs are stiffening.  She usually doesn't turn her head now, so if they have her turned more toward her window, I have to go around to that side of her bed so she can see me.  She doesn't even nod her head yes or no.  On her good days she is able to move her arms a bit, but she is weak & shaky.  She use to insist on feeding herself and did okay -- for a while.  Now her elbows, arms, and fingers are pretty stiff and she can't get the spoon near her mouth.  If she does eat, I or an aid must feed her.

  4. Decreased Food/Water (aka Wasting); Mom now eats little to nothing and only on good days moments is she able to pick up a cup if she uses both hands.  On her good days, she might eat 100 calories; on a very rare very good day she might consume nearly 300 calories (much of those calories are from grape or apple juice), but most of the time she eats nothing.   Sometimes I (or the nurse) have to walk her through how to eat or drink and say "you will have to open your mouth" (for a straw), "okay, now you can close your mouth", "okay, now try to ...".  Swallowing is slow & difficult.  [Update: 1/29/17, We are now on Day 3 where Mom has pretty much stopped eating.  On a good day she will eat maybe 6 bites of food (3 small bites divided in two meals).  She still asks for juice or water, and if I put the straw in her mouth she might drink up to 3 oz., which takes a while to drink even that little, but will also aspirate (fluid goes into the lungs & she coughs).  Breathing is more labored & shallow and she barely has enough breath to be able to suck anything through a straw.  After a swallow, she must rest to breathe.]  

5. More Pain.  Another end-of-life thing, full-body pain, not just in her legs.  And despite being turned and having an air bed that is meant to alternate pressure and help circulation, she is getting bed sores that are not healing.  We upped her pain meds a while back, and still she is needing some additional meds between her normal doses (she can have meds every hr. if needed).  And now she has been switched to her meds in liquid form since she is having difficulty swallowing.

6. Other typical signs I am noticing are swelling in the hands & feet, eyes half open, sleeping with mouth open, some mottling (purple blotches on hands/feet), & blurred vision -- I think she can see very little now.

7. The signs that I am most closely observing now are occasional respiratory congestion; off & on nasal congestion (her lungs may be filling with fluid again); shallow breathing; nurses unable to hear her heart through her chest &/or heart irregularities; the significant jump in her heart rate & a significantly lower blood pressure... these seem to come & go, some days her vitals are relatively good and others, not; like her body is rehearsing her final days but not quite there yet.  Of course, she could have sudden cardiac arrest any time.

Yesterday (Friday) I had a very rare and very sweet visit with Mom.  She was having some pain and I had to ask the nurse to bring some more pain medication, and the nurse informed me that they had a hard time waking her that morning, but, she woke right up for me.  My "awake" time with her is short now days, but she was exceptionally cogent for the time she was awake.  I was able to feed her about 6 tiny bites of her lunch (fish) and she drank a couple sips of each: water, coffee, and apple juice (that's a big meal for her).  And although her ability to talk is rather slow and takes some effort, we had a lovely visit while she ate.  I asked her several questions about her past -- when she first attended her home church, her first jobs, and the one-room grade school she attended, and her memory and voice were relatively clear & strong.  Mind you, she's not jabbery and couldn't articulate everything.  She couldn't remember the school name, but she told me it was District 81. (wow)   She dozed off a couple of times in the middle of her sentences, but then would suddenly pop back awake and finish her sentence where she left off -- amazing.  When she was done eating I asked if she wanted the head of her bed lowered and within seconds she was asleep again.  I usually stay for an hour or so even if she is sleeping (watching HG and her) and then I woke her ever so gently and let her know I was going and she said, "okay, see you tomorrow" (usually she can't say that).  It was a visit to cherish as we may not have too many more of these sweet times left.       
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Today (Saturday) she was less able to talk, more confused, and did not respond when I said good-bye.  She perhaps was having some dyspnea (shortness of breath) which would account for her being more restless.  Restlessness in a person that is immobile is rather interesting... she had me raise & lower the head of her bed four times within about 15 minutes (as odd as that sounds, it too is something common to those approaching death).  
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The hospice doctor, nurse, and chaplain have been great.  The nursing home staff varies, some are very good, others lack common sense, I guess.  Although I had read the nursing home was highly rated and better than most; and the girls & I had volunteered there for a few years, we are surprised to be very disappointed by some of what we have experienced now that we have family there and I have now read some very poor reviews; equal to what we are experiencing.   I would love to see some kind of hospice training or informative video shown to each and every person that works & volunteers in a nursing home, as I've had encountered activity coordinators, the beautician, volunteers, and even some staff (esp. on weekends) do/say all the wrong things.  For instance, you don't walk into a patient's room and say, "So when are you going home?" (Augh)  Some aids don't realize that you can't just ask most patients "if" they want lunch as the patient can change their mind every 30 seconds... just bring the tray, get them all set up, and let the patient choose (they are paying for it!).  Oh, and there has been at least twice that they have completely forgotten Mom at mealtime and I've been right there, so I know it happens.  It makes me wonder how many meals they forget when I'm not there.  If she rejects a particular meal, well then so be it, but at least bring her a meal and get her set up.  Additionally, if the patient is bedridden & immobile like Mom, you have to leave their water/food and call button within reach! ...And I won't even get into them being slow at answering the call button and/or getting her pain meds. (Errr) (sorry, just venting) 

Now, how am I? 

I'm doing fine most of the time (although my heart still skips a beat every time the phone rings); I'm tired, I sometimes don't sleep as well as I keep thinking about stuff pertaining to Mom.

I continue to visit Mom daily without fail, an hour or two, some days a bit shorter as Mom just sleeps now.  Every day there is something new that I face when I enter her room, either having to do with her declining condition or with her care.  It's difficult to see her like this as I know she wouldn't have chosen this gradual decline.

Oddly enough, I still catch myself thinking I have to call Mom each evening, just as I did nightly for the past two years to check up on her.  Even though I see her every day, it's hard to believe she is not in the same townhome that she has lived for the past 26 yrs..

I recently had a rough morning emotionally -- I wrote thank you

Mom's/My Home Church 1967 (75th Anniv. Photo)

notes on behalf of Mom & I to her neighbor, her church, and to her church luncheon ladies group -- ladies that I know and of whom I hold dear.  Mom's church is the church I grew up in and it's like saying good-bye to an era in my life, to family.  The next time I walk into that church, it will be for Mom's funeral.

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Oh my, this is a long post (aren't they all), time to finish up.

So, this week I began a few of the final arrangements; not to rush things of course, but just knowing that I probably won't be as clear-thinking later and it gives me some time to put more thought into such things as the funeral bulletin, as I want it nice in honor of Mom and not something just thrown together at the last minute.  Being an only child, it's not like I can delegate, there is much to do and I'd rather not be rushed with such emotion-filled details.

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Additionally, it's been an emotional week as my only cousin lost his dear wife to a very sudden and unexpected heart attack last Saturday... I think we are all in shock.  The memorial service will be this next week.  My side of the family has been dwindling down to next to nothing over the past few months -- I'm really feeling a sense of loss of connection to my past.

My cousin & his wife, Katie
Katie was such a kind & humble lady -- she will be missed. ♥

God Bless!

Thank you for your kind words and prayers!