Our Hospice Journey, the Beginning

Two weeks ago I was forced to make one of the hardest decisions of my life --

putting Mom in hospice.

Many of you all know of the on-going circumstances with my mother's progressing Congestive Heart Failure (CHF) over the past two years, so as an update, and for those that might be visiting this post and anticipating eldercare in your near future (Welcome!), I would like to share our story in hopes it might be of help to you as I've found reading other family stories have been of great help to me.  This post is a little long, but if you are like me and starting this road, you might find every smidgen detail helpful -- picking up a few tips I've already learnt and learning from my early mistakes.  Everyone's experience is different and there are so many variables, but I have learnt some commonality with most all hospice patients and I'll share that as well.  We are only a couple of weeks into it, but here is what we have experienced and I've learnt so far...

In my small and somewhat older-aged family, I've experienced more funerals than weddings & births and have become very familiar with eldercare and end of life decisions from an early age; however, this was the first time I have been solely responsible in making such a life-decision of my own and I can't say I wish it upon anyone!


Just as a little background...

• I'm an only child and the health care agent for my mother.
• In addition to working full time outside of the home until retirement, Mom has carried the load over the years as caregiver first for her parents, then (my) Dad, and then her sister.
• My beloved daddy passed away September 30, 2000, just 29 days short of his 87th birthday following years of having Parkinson's Disease and "a bad heart", and finally succumbing to ischemic colitis (blood clot to the colon) in which surgery would most assuredly have been fatal considering his age & already poor health.  Dad was in the hospital 18 days when the doctors told Mom that he was dying and it was decided to place Dad on hospice there in the hospital where he passed away 12 days later.
• My Mom's older sister and only sibling passed away in 2003 at the age of 77 following a series of strokes.
• Mom (almost 88 yrs.) has always enjoyed amazing health until two years ago when she experienced her first "heart-event" (near or small heart attack) and a trip to ER.  She was diagnosed with Congestive Heart Failure (CHF) with a heart function then at 30%.
• Mom has had five serious "heart events" in the last 2 years with EMT's rushing her to ER:

  

  Mom, four days after her first heart-
  event, celebrating her 86th birthday.

  Nov. 18, 2014 being the first; then Apr. 5, 2015 (Easter Morning); then she seemed to bounce back like most CHF patients do for a while, until Aug. 6, 2016 (her heart function now down to 20%), then again Oct. 8, 2016, and now Nov. 3, 2016.  CHF is a progressively fatal disease, and her heart is now not keeping up to keep fluid off Mom's lungs, with 3 trips to ER in the last 4 months.   
• Mom is a fiercely independent & stubborn German and insisted on living on her own.  We live over an hour away, but have managed to honor her wishes to live independently, with me calling her nightly to check up on her and making the weekly drive to her one-level townhome to visit, do her grocery shopping, run errands, or when she was up to it, take her on errands or out to eat.

Mom's Fall 

As usual, on Tuesday, Nov. 1, 2016, I made my weekly 1¼ hr. trip to visit my Mom, do her grocery shopping, pick up some lunch for us, eat, and then Mom rallied her energy wanting me to take her to the bank and then asked me to take her back to the grocery store so she could buy a carton of cigarettes (rolling eyes...I know, even with heart failure, Mom refused doctors' warnings to stop smoking... she had cut back, but I suspect she was smoking far more than what she told the doctors).  Mom will be turning 88 years young this month and has experienced a steady decline over the last 6 months; although a small lady to begin with, she is down to 88 lbs. and very weak & unsteady.  Upon returning to her townhouse, she started to "sweep" some of the fall leaves with her feet (not a smart idea when she can barely balance herself), but I grabbed ahold of her and thankfully she didn't fall... this time.

Our week continued as normal with me calling her on Wednesday evening, but when I called Thursday around 6:25 pm, there was no answer, which is very unusual as she doesn't go out after dark, but I waited a bit thinking she might be washing her hair or something and would give her some time (I've learnt over the years with her not to panic too quickly).  I tried calling again around 6:50 pm and a man answered, my first thought was to say, "excuse me, I must have the wrong number", but I didn't and told him who I was calling for.  He then proceeded to tell me that he was Mark, Mom's next door neighbor, and that he had found Mom on the floor of her garage, had called 911, and was awaiting the ambulance.

Mom lives on a quiet cul-de-sac street of mostly 80+ yr. old neighbors.
Here you can see how hard it would have been
to see her way back by her door.

What had happened was Mom went out to get her mail around 1:30 that afternoon and while she was still quite far back in her garage, she again tried to scoot some leaves with her feet and lost her balance, falling on the hard concrete floor, breaking her right hip & right elbow with some additional wounds on her legs & arms; evidently not hitting her head, however she turned instantly numb, was in great pain, and couldn't move.  Unfortunately, no one could see her way back in her garage until her neighbor came home around 6:40 pm, saw her garage door open (unusual), and heard her calling him.  

The ambulance came around 6:55 pm, meaning she had been laying on the cold concrete floor for nearly 5.5 hrs..  Mark agreed to call me back after the ambulance left and then I headed to the hospital (an hr. away from me).

Mom Not Expected to Survive
When I got to ER, Mom could communicate with me in a shivering voice while the ER staff's first priority was warming her then 90.8° body temperature (thankfully it had been an unseasonably warm Minnesota fall day with a high of 64°, but it was expected to drop down to 39° that night) ; we are guessing if Mark had not found her when he did, she would have not made it.  Warming her took quite a while.  Her heart and other organs had suffered quite a trauma and her vitals were very poor.  Tests strongly indicated that she probably had suffered a heart attack sometime during all this.  There were other issues too, perhaps an infection & intestinal problems.  Her vitals were coming up slowly, but her heart remained very unstable and of course, she was in a lot of pain from the broken hip & elbow (significant breaks, not just hairline fractures).  By Friday morning she had been moved to ICU, but was still unstable and the medical staff stated that although she was one tough cookie, they had their doubts that she would make it through the weekend.  Several doctors counselled that I should consider placing Mom on hospice/comfort care; that between her age, the broken bones, her unstable heart, and other issues, she is basically inoperable (to set her broken bones).  Surgery or even the anesthesia alone would most assuredly be fatal, and for her to just lie in bed for 6-8 wks. awaiting for the bones to heal would most likely be fatal to her heart as well.  It's a no-win situation and she will likely not survive either way.

Lessons
Now, there are at least two lessons from this incident:

First something we did right -- at the time of Mom's second heart event, we made out her "Health Care Directives" that I think most every hospital encourages.  It gives the hospital/caregivers clear instruction on what services Mom is okay or not okay with.  It lists who will be her "Health Care Agent" (me) if she cannot communicate her wishes or health care decisions.  Being our family has been down this road several times, it was easy for us to discuss our wishes to each other and Mom knows she can trust me to follow through.  Mom does not want any machinery or invasive procedures keeping her alive in the end; she doesn't want to do anything that involves risk, but rather to die naturally when it's her time.  I'm okay with that as I would want the same.  We also filled out a bright-colored POLST (Provider Orders for Life Sustaining Treatment) form that she kept on her refrigerator that flagged the ambulance drivers whenever she called 911, helping them to know what they should or should not do, including the BIG letters "DNR", meaning "Do Not Resuscitate", should the need arise.  With Mom's frail body, the mere act of this would probably break many of her ribs and may even kill her.  Of course, with her declining all medical procedures, her heart failing, medications ineffective for the most part, and with no curative treatment possible, the only next step is to keep her comfortable and maintain as much of a quality of life as possible until the end (i.e. hospice).

You will also have the option to fill out a "Power of Attorney" form at the same time, which I highly recommend as at least our hospital won't do it later.  The nursing home did recommend it; but then it's a matter of finding a notary, but we had it done in the nursing home ASAP while Mom is still relatively cognitive.   

What Mom did wrong was adamantly refuse to get one of those medical alert necklaces in which she could have pressed a button and got an ambulance to her home right away.  The doctors & I had tried repeatedly to convince her that this would be a good thing, but she just wouldn't hear of it.  In hindsight, Mom now sees where it would have been of great value, but now it's sadly too late -- feel free to share our story with your loved ones so they don't make the same mistake.

~~~~~~

Getting back to my story, so Friday afternoon with Mom still in ICU, I had to make the hard decision to start her on hospice.  IF she survived the weekend, perhaps she could be moved to a nursing home near our home (if there was room).

When I came to visit Saturday morning, she had been moved to a temporary hospice-like private room within the hospital (the hospital no longer provides full hospice care, so it is just a temporary room until she can be moved to a nursing home, hospice facility, or my home).  Not only had she survived the night, but seemed relatively alert and happy (must have been the meds) and ate almost a whole bowl of hearty chicken noodle soup for me.  I was very encouraged and feeling much better about my decision to place her in hospice.  You see, ever since Mom & I had decided to place Dad on hospice 16 years ago, it has always bothered me that they seemed to just let him starve to death.  That was certainly not our intent, but no one ever explained hospice to us as I understand it now, so let me just take a couple of minutes to explain.

 Hospice vs. Palliative Care
When Mom was in ICU, both terms were thrown at me quite a bit, and being I'm no expert in medical-ese, quite frankly, I had no idea what "palliative care" meant, nor the difference between the two terms, Hospice and Palliative Care, until I looked it up.  Both Hospice & Palliative Care are known as "Comfort Care", but there is a difference.  Basically anyone with a serious illness can receive Palliative Care, making the patient as comfortable as possible, usually with painkillers, with or without curative intent.  Hospice differs in that patients must meet certain Medicare eligibility requirements that Palliative Care patients do not meet.  With hospice eligibility, two physicians certify that the patient has less than six months to live, and in which the patient has received curative treatment (if possible) and is no longer benefiting from it nor is there evidence that further treatment would be effective.  (Some hospice patients do live beyond the 6-month life expectancy, which just means they are reevaluated at that time and the doctor can place them on another 6-month hospice cycle... or, they may stabilize for a while and be taken off hospice for a time).  In either case, the patient is not "starved to death" by their caregivers.  They are offered as much food and beverage of their choice as they want; in my Dad's case, he was already semi-unconscious and in the dying process.  Barbara Karnes RN gives a very good explanation of this in her post, "eating or not eating".  On the other had, my Mom is relatively cognitive and can still eat some, yet her heart is very unstable and she unknowingly is showing all the signs of entering the dying process...

The three biggest signs of the dying process
(and typical of most hospice patients) being:

1. A person gradually stops eating.  This is something I didn't understand with my Dad, that a person naturally begins to stop eating and that's okay, as God designed.  Mom was already down to 88 lbs. before her fall and I've learnt not to push or nag about eating, just make food available, even bringing in things she likes, but if she eats only 2 bird-size bites or doesn't feel like eating any, it's okay -- always offer food, but don't push it.  During the dying process, the patient's inactivity doesn't call for as much food; additionally, internals (kidneys, liver, etc.) are gradually shutting down and their ability to swallow diminishes, so they just naturally stop eating.  "Beginning months before death a person will stop eating meat, then it becomes fruits and vegetables, then soft food.  By the weeks before death a person is barely eating anything.  Ice cream and liquids are often the best they can do."  Usually Mom can somewhat manipulate the spoon or fork as long as someone gets her meal all set up in front of her (occasionally I or the nurse will feed her).  She is still doing relatively well with drinking fluids, but as an educated guess from all my years of counting calories (rolling eyes), I'm guessing she is only taking in about 200 calories a day, at best.

2. A person begins sleeping more than they are awake.  This is very much the case with Mom; she is rarely awake more than 15 minutes at a time.  She has managed to stay awake for 45 minutes to 1 hr. while I was there the last couple of days, but it varies.  Mom was already napping quite a bit before her fall and now the pain meds. make her sleepy as well.

3. A person begins withdrawing from the world about them, not interested in activities, news, socializing, and eventually family.  This one has been true of Mom, coming on gradually over the last six months or so.  Mom basically became a shut-in a month or so prior to her fall as she was too weak and her heart too unstable to go anywhere.  For the most part, she had become interested only in her own world.  When talking to her, she cared only about what she was going to say next, often interrupting me as if I weren't talking -- very one-sided conversations, and not replying to anything I said.  Now, however, outside of asking about the weather, she seems to have lost interest in almost everything.  She is no longer interested in her favorite tv shows, although she wants tv on continually; words and interaction have dwindled.  Sometimes she has an empty stare or sleeps with her eyes open (often a sign of dehydration).

additional points:

4. A fall, broken bones, or additional illness such as an infection or pneumonia act as catalysts in the dying process.  Even if an elderly person is only showing negligible signs of the onset of the dying process, a broken hip such as my Mom's will act as a catalyst towards a rapid decline.

5. Significant Cognitive Impairment or Dementia: "Senior Moments" are a normal part of aging, however, with the combination of an advanced life-threatening illness and medication; memory, judgment, decisional capacity, verbal fluency, understanding, reasoning, and orientation in time and place can decline substantially.

This has become huge with Mom over the last couple of weeks.  At times she seems mentally alert & sharp, relatively aware in conversation for brief moments, but often she will start saying something but unable to finish her sentence (and I never do find out what she was going to say), or her thought process has slowed and it takes her forever quite a while to finish a sentence.  She has a hard time thinking of words and I have to guess what she is trying to say.  She is unable to recall when or if she ate anything.  Sometimes she will talk of returning home or wanting to start trying to stand up, not understanding that that is not possible. 

6. The dying process doesn't necessarily change a person's personality, it intensifies it.  If a patient was a critical person before their illness, they may become a real grouch as life draws to a close; if they had a calm personality, they will most likely withdraw more and be mellower yet.   

Resources:
Palliative Care vs. Hospice Care by VITAS Healthcare  
Barbara Karnes RN (30-yr. hospice nurse, SUPER blog)
Three Signs of Approaching Death From Disease or Old Age by Barbara Karnes RN
If They Would Just Eat, Everything Would Be Better, by Barbara Karnes RN

So again, getting back to my story, I did get Mom into a nursing home that is less than four miles from our home (yeah!).  It's the same nursing home that the girls & I have volunteered at, so I knew it was a relatively good one; actually, we volunteered in one of their other buildings that is newer and nicer decor-wise, but with Mom bed-ridden, I guess it doesn't matter, the staff is good!  Mom had stated a few years back that if she ever had to go to a nursing home, she wanted to come to the one up by me, so that is good.  It's not the Shangri-La Mom would have really wanted, but we don't have such a thing up here in farmland. 

In Mom's more lucid moments, she questions how she ever got to this point and firmly believes she will go home again; and currently there are some brief moments where Mom seems to be her ole self again and I wonder too; however, the doctors state that even in the best case scenario, she will never walk again and even if she could take a few unstable steps, she would be too weak to pull herself up to a walker and could never live on her own.  When Mom starts talking like she will go home, I take her dear hospice doctor's advice and just say we will take one step at a time and that seems to satisfy her.

Having to Make Quick Decisions

It all happened so fast -- the somewhat unexpected fall, Mom's near death, the hospital wanting me to make relatively quick decisions, Mom's brief moments of seemingly quick recovery, and the hospital wanting to move Mom outside of the hospital ASAP makes one's head spin.  I found myself pondering & questioning everything that had just taken place, what various doctors & medical staff were telling me, and any and all options; it seemed like non-stop day & night replay going on in my head.  We were fully aware that this time was coming sooner than later, but not in such a dramatic fashion.  Was I making the right decision?  For us, the reality is that this was our only option, and I did the right thing.  Some people are superstars when it comes to nursing and compassionate caregiving and are able to take on the care of someone in such a situation, I/we are not.  Not that I don't feel compassion and pity for my Mom, but some of us are not cut out for nursing and personally, I have a very weak stomach/strong gag reflex at the sight & odor of some of the care involved.  Additionally, our home is just not very accessible, it's too open-concept for a peaceful corner for Mom, and we have several pester-y indoor pets.  It's good that Mom is so close and in good hands.  I visit her daily, keep close tabs on her care, and get her anything she wants or needs, but I leave the rest to those that are gifted in that area.

Oh, and one more word of advice (from my mistakes), if you are facing having the hospital transport a loved one to a care facility or your home (we had to because of Mom's broken hip), make sure you are signed up with a "hospice agent" (company) BEFORE the transport.  Being new to this and on a big learning curve of the way nursing homes & insurance/Medicare operate, I didn't know, and although the hospital called it hospice care there, it's not the same as signing up with an actual hospice company, which I did 22 hours after Mom arrived at the nursing home, putting the nursing home finance lady into a real tizzy, haha, but I asked her to pull some strings and she got it all worked out.  She was all worried and I was clueless. :)  If applicable, check with the nursing facility and find out which hospice companies usually service their patients (the hospital social worker can do this for you if you prefer) and then go online and check each company's website, maybe meet the reps if you have time (I didn't), and make your choice.   

It's all been pretty stressful with such life and death decisions; meeting with numerous medical people, but I'm finding the stress lessens a bit over time.  I visit Mom daily, usually around her lunchtime so I can see for myself how much she is eating and how well she is doing, or not.  I am thankful that I was able to get Mom into a Christian nursing home and signed her up with a Christian hospice service.  I met her hospice nurse recently and she took so much time with Mom, talked so kindly, and at the end quoted Psalm 23 and prayed with Mom, all while holding Mom's hand.  It was beautiful!

It's only been a little over two weeks since Mom's fall, so I'm sure I'll  have much to share in the days, weeks, and perhaps months to come.  Mom is one tough lady and if anyone can make it through this recent major setback, it's her.  However, she is declining, CHF is incurable, and her heart could fail at any time.  Only God knows the number of her days.

Our faith is strong in the God Who Sees

and our hope is secure in Whom we find great peace.

Until next time, God Bless ♥