Friday, February 10, 2017

Our Hospice Journey... Is Over

One of the beautiful flower arrangements from Mom's funeral.

It was about 8:20 a.m. on Tuesday, January 31st when the phone rang.  As I scampered to the phone, I was guessing it was either my early-bird mother-in-law... or the nursing home.

Before she even identified herself, I recognized the voice, it was Nicole, a nice young nurse from the nursing home that I had gotten to know during Mom's stay.  I knew by the tone of her voice that it was bad news before she even got the words out.

"I'm sorry, but your Mom passed away at 8:11 this morning."

I immediately broke down for a couple of seconds as I was tired and already emotionally drained from my Mom's declining condition and my early-morning devotional/prayer time of praying for others.  The news came as a slight shock -- yes, we knew Mom's time was short; however, I had just visited Mom the day before
(as I did every day without fail) and she wasn't showing any new signs that would indicate that she was necessarily even in the final "Active Phase of Dying" (see transitioning post) let alone that she had only hours to live.  Sure, she had begun showing some of the signs of the "preactive phase of dying" around January 18th (which on average may last approx. two weeks), but she wasn't showing any of the "active signs of dying (the few signs I did observe had been true of her for over a month and would come and go).  Possibly, if the caregivers had taken her blood pressure that Monday, we probably would have known, but in hospice, the focus is on comfort and vitals are not monitored on a daily basis.  Truly, I was thinking she still might have 1½ - 2 weeks yet... in hindsight, that was probably stretching it.

Amber (22), our oldest daughter wrapped her arm around me as I leaned on the snack bar trying to regain my composure.  She knew, as well as Anna (20), who could hear from upstairs, what was going on.  After a few seconds of silence as I tried to steady my voice, I asked what I needed to do now... did I need to call the funeral home next or what?  Nicole verified with me the name of the funeral home and said they would call and that I could just come if I wished to see Mom.

I called hubby at the office and we decided he didn't need to come home until noon, as I would try to schedule a meeting with the funeral home director for later that day.  Then I made the short drive to the nursing home
(3.7 miles from my house).  I was doing okay, I think a kind of adrenaline rush was now kicking me into action.  Walking into the nursing home and seeing sweet Mary at the reception desk who was giving me "that look" and softly saying, "I'm sorry" (as patients surrounded her... she is always a hub of their social life) caused me to once again fight back the tears.   As I started walking down Mom's hall, I saw Nicole standing in the hallway as usual, as her duties entail administering medications to each of the patients on that wing, but she stopped as soon as she saw me, holding out her arms for a hug... her eyes were red and swollen from crying (I think she was taking it harder than I).  Nicole & I went into Mom's room together as another regular aid was finishing up whatever they do.  The three of us talked a while... Mom looked exactly as she did when I had left her Monday, like she was just sleeping.

Thinking back, Mom really hadn't changed much since my last post 10 days prior to her death; except that beginning on January 27th, 4 days prior to her death, she had pretty much stopped eating, and for perhaps a week or so prior she was aspirating whenever she drank anything [meaning fluid goes into the lungs and she coughs/chokes].  One day, she had ate a whopping 6-baby bites of food
(split between 2 meals), but went most days without eating a single bite.  That Monday, the day prior to her death, I was surprised when the aids told me that she had eaten a couple nibbles of toast for breakfast, as she had quit eating breakfast completely [she almost always use to eat toast every morning if nothing else that day] and then ate 3 small bites of a chicken spaghetti-type lunch that an aid was feeding her shortly after I arrived.  Actually I was pretty perturbed when Mom said she didn't want any more after 2 bites, but the aid snuck in one more spoonful (before I could say anything) and was quite proud of herself (unfortunately the aid doesn't know that "No" means "No" when it comes to hospice patients.. it's not like trying to feed a stubborn toddler... she could have done more harm than good as a dying person's system is shutting down and there are good reasons they say "NO" as their system can't handle it.).  At any rate, Mom swallowed the third bite and thankfully that aid left.  She drank a couple sips from a straw of apple juice for me and said she "just couldn't" (she can only get one or two words out, but manages to get her message across).  I asked Mom if her not wanting any more was because the food hurts going down or makes her feel sick, or is it because it's hard to breathe and she confirmed what I was guessing, she couldn't breathe and swallow at the same time.  Those words confirmed to me too what we had been suspecting --  her lungs were filling with fluid again, as is common with Congestive Heart Failure, and her time was getting short.  Otherwise she didn't seem any different than the previous few days.  I lowered the head of her bed just a little and she once again fell asleep.  I observed her for a while and she had no erratic breathing; she was pale, but no mottling (blue/purple blotches usually on the hands, feet, knees) anywhere, and her nails & lips looked good, not purple! (all indicators that death is near).  Anna was with and we didn't stay too long as we had errands to run and there was no point as she slept; I had no reason to believe anything was different from the day before and I would see here tomorrow.  I woke her gently and let her know we were going and I would see her tomorrow and she said in a rather happy voice, "okay" and I think she even nodded her head slightly (which is better than I get some days).

When we first signed up with hospice, I let them know, if possible, I'd like to be there when Mom dies -- sometimes the patient wants family there, or one particular person, and sometimes they wait and pass after everyone is gone.  That is one of my regrets, that she died alone, but she took the nursing staff and I by surprise and none of us thought she would pass today.  When I saw Mom after she had passed, she still looked relatively good, no discoloring, no purple.  I really think by the way she looked that she just quietly passed away in her sleep, just the way I prayed she would.

Thank You LORD!

The nursing staff told me later that morning of the events of the previous (Mon) night; that Mom had refused her 4 p.m. medication (about a tablespoon of liquid meds that was in a syringe, squirted under her tongue every 4 hrs), and Mom told them she didn't have any pain.  I'm sure Mom felt that even that little bit of medicine made it hard to breathe.

Who knows exactly when she passed away -- it could have been Monday evening or very early Tuesday morning.  The 8:11 a.m. time given to me was when the nurses pronounced her deceased as she was already gone when they found her.  Sadly, the staff didn't check on her very frequently during her stay, even in the early days of her hospice experience, so for all I know, she could have died at 4:30 p.m. Monday evening and they didn't check on her until the next morning.  Just as a side note, I don't know if this is true everywhere, but here in Minnesota, all that is needed is two nurses to verify a death.  I was told Lois, the hospice nurse, had been in earlier to see Mom (I assume to help verify her death).

So, I stayed with Mom and gathered her few belongings while I waited for their traditional bedside memorial in a few minutes.  Being Mom was bedridden during her whole time there, none of the other residents knew her, but it was more for the sake and closure of the staff that had worked closely with Mom.  The chaplain came and gave a nice little service complete with a bulletin.  They did wheel in one male patient that didn't know Mom, but would always brighten up when I came in and we would exchange greetings as I patted him on the arm or shoulder.  There was also an opportunity for anyone that wanted to eulogize and there were some very nice things said.  Nurse Nicole shared that she remembered when Mom arrived as she choked back tears -- she really seemed to love Mom.

The nursing home always conducts a "walk of honor" as they escort the former patient to the doors for the awaiting hearse, but being the hearse was coming from over an hour away, I decided to return home and start making phone calls.  I made arrangements to meet at the funeral home at 3 p.m. that day; and then called Mom's pastor and set up a date for Mom's service, which wouldn't be until Sunday, Feb. 5th, as that worked best for the pastor who's own wife just entered hospice
(at home) as she is losing her battle with cancer.  [update: the Pastor's wife passed away Feb. 11th]  Once I had a date & time set for the funeral, then I contacted a few key people that I knew could get the word out, bless them.

Jeff (husband) came home at noon and he, I, and Amber
(Anna had to work) made our way to the funeral home (over an hour away) near Mom's place to make the arrangements.  I was glad that I had recently picked out the navy skirt, blazer, and cream top that I thought would be best for Mom's burial and had just picked them up from the dry cleaner the Friday before she died, so I could bring them with.  The funeral director asked me what we wanted to do about music and I told him we had that covered, and started to explain that my daughters would play violin & guitar and my mother-in-law and her sister would sing, and he said, "oh, like the Von Trapp family", haha, not even close.  All went well and with a few more phone calls over the next couple of days, I had everything set.

It is customary that a luncheon is served following the funeral and being Mom's church has sadly dwindled down to only about a dozen regular attenders, and most, if not all of them in their 70's and 80's, they understandably, were no longer able to put on a luncheon, and the one catering option out there just wouldn't work for our needs, so we decided that I would order several deli trays from our local grocery store and bring them with... arriving early to the church, and 2 or 3 of the church ladies could then get it all set out.  Although I was a bit fearful that I might not have ordered enough food, it all turned out great and I had leftovers to bring home... I found out my home church friends aren't much on eating their raw veggies, haha.

Actually, everything went far smoother than I expected -- knowing that usually there is at least one hiccup in every event.  The funeral home and church, friends & family were so helpful those 6 days between Mom's death and the funeral that I felt I hardly had anything to do, and actually, if it hadn't been for the Pastor's schedule, we could/should have had the funeral sooner (financial-wise, more about that in the next post), but it gave me time to really think things through and get everything ready, like photo boards (I wish I had taken pictures) at a leisurely pace.  One thing didn't go quite as I hoped....

Being we knew Mom's life was drawing near her homecoming, not only had I readied her burial clothes, but I was also starting to work on the funeral bulletin/program.  I decided on a church bulletin that had Psalm 23 on the cover... very nice right?  

I ordered them online from a church supply company on January 23rd (8 days before Mom actually died), thinking I had more time than I did; I didn't consider putting a rush on the order.  In the meantime, I designed all the wording & photos for the interior and just waited to plug in dates.  Unfortunately, Mom did pass away and each day following I hoped & prayed that the bulletins would arrive in the mail, but they weren't coming.  So Friday, when Jeff & I were back in town, I stopped at a Lifeway Bookstore and purchased a "Plan B" bulletin
just in case my bulletins didn't arrive by Saturday's mail; actually I bought 2 designs as I couldn't decide and brought them home for the girls to help; I will return the other set later.  Well, my bulletins didn't arrive in Saturday's mail either, so I had to scramble (which I don't like to do on the Sabbath).  Long story short, being I had some photos in the bulletin, I wanted the copies made at a copy center where they would be a little sharper & clearer than what my home copier was capable, but... there are no copy centers open on weekends for miles around!  So off Anna & I go, a 45 minute drive to get the bulletin copied at Office Max, 24-hrs. before we had to be at the church!  But I'm glad we made the effort as they turned out well.  Oh, and my first-choice bulletins?  They arrived the day after the funeral. (sigh) 

(shown: interior & back of funeral bulletin)

It was a nice old-fashioned, country church funeral service just as Mom would have wanted it.  We don't have many relatives left, but all came and many dear long-time friends.  I held up quite well... I had prayed that morning that I would be a blessing and more focused on others and their hurt, and the LORD carried me through; actually, it seemed more like a church service and as strange as it sounds, I even enjoyed myself -- being in my old home church with those I love dearly.  Oh sure, I did have to fight the tears some; the hardest part was after the interment at the cemetery across the road where much of my extended family is laid to rest, I placed a rose on my beloved Daddy's grave and could have easily lost it (started to).  It was a beautiful sunshiny day, albeit still February in Minnesota, so a bit chilly, but what I really wanted to do was just sit there by Dad's grave (and soon Mom beside him) and be alone with my thoughts & tears, but there were too many there and we had to move along as the burial service was waiting to do their part and I needed to get to the reception back at the church.  I will have to return another day.  

It still seems a bit unreal.  It was just 89 days from the time of Mom's fall until her death... prior to that, although failing, she had been living on her own and baking cookies.  Although it was really hard seeing her waste away, I am grateful for the extra 89 days I could be by Mom's side as many don't get that time to spend with their loved ones.  Truthfully, Mom wasn't the easiest person -- some even at the funeral referred to her as "feisty", and that she was; actually, they don't know the half of it, but I pitied her and those 89 days were dear just the same.

When we returned home from the funeral that evening and had put the food and much away, I was finally ready to settle down in my chair... but in the worst way, I wanted to call Mom and tell her of all the long-time friends and family that were able to come... she, more than anyone, would have been so pleased, for there are just some things that only family members, with shared experiences and memories, can understand and appreciate. ♥ 


On behalf of our entire family, THANK YOU for the outpouring of your love and prayers these past three months and your condolences and more prayers for us upon her passing.  We are so humbled by your love.  I cherish you all!


   If there are any reading this post that would like to hear more of our hospice journey leading up to now, I have journalled our whole story:

There is at least one more post I would like to do regarding our whole experience, and that is, knowing what I know now, what I would have done differently and the COST of a traditional funeral.  Although not a pleasant subject, as none of my latest posts have been, death is what all of us will experience -- in handling the arrangements for a beloved family member and/or preparing for our own, and there are some things everyone can do now to make it easier (and less expensive) on ourselves and others.  So check back!  For now, my days are mostly filled with writing thank yous and paying bills, and starting a new chapter in our lives.

Much Love, Jane

Saturday, January 21, 2017

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
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:


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
  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"/] 

Below is'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

 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.       
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).  

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.


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.


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!

Monday, December 19, 2016

Our Hospice Journey - Week 6 Observations

The following is an update on my Mom
and our
Journey through Hospice.

If you missed my first installment on our Hospice Journey and the drama that brought us to this point,
please take a lookie see at my previous post:
Our Hospice Journey, the Beginning


Dad & Mom on their 40th Wedding Anniv. in 1994.
(Dad was 15 yrs. older than Mom & didn't make it to their 50th)

So, I know all our family & friends have been wanting an update and I really feel I owe it to everyone, but the truth is, I'm not sure what to say (but I'm sure I'll think of something)...

It's been 6 weeks (46 days to be exact) since Mom's dramatic fall that led to me placing her in hospice and I have to say, my Mom is one tough cookie -- far exceeding the initial survival expectations of the doctors; however, in my daily visits I am seeing quite the conflicting mix of slight improvement vs. end-of-life (EOL) failings.  So I think with this post, I'll just list a few of my observations...

First, the Small Improvements:

1. A slight increase in appetite.  Mom has gone from consuming 100-200 calories a day at first, to now perhaps 200-400± calories a day; yet still not enough to sustain one in the long-term. Her desire to eat varies greatly from meal to meal and she often skips meals. The increase is most likely due to a change in medication that can increase appetite.  [Update:  I knew the minute I said she was doing better at eating, things would go the other way... scratch the eating part.  she has consumed maybe 400 calories in the last 4 days.]  

2. Staying awake/alert for up to an hour at a time.  Again, this varies greatly -- at first she was staying awake for 15 minutes at a time, but now she sometimes stays awake and converses with me for up to an hour, but those days are still pretty rare.  Some visits she is only able to stay awake for 10 minutes.  One of the hospice reps. shared with me that during one of her visits, Mom never opened her eyes while she was there, just talking with her eyes shut.

3. Helps herself more.  Well, yes & no, good & bad.  She is able to use her right/broken arm that is still in a stint more to feed herself, however, the nurse & I kept harping at Mom that she needed to press her button if she needed something (like pain meds) and she wouldn't do it.  But now, perhaps we have created a monster and she presses it for anything and everything... fresh coffee, a cookie (at 2 a.m.), and she gets agitated if they don't come fast enough, like they are her personal room service.

And Now the Signs of Failing (all typical end-of-life (EOL) symptoms):

1.  Confusion!  Here I'm not speaking of just not knowing what day it is... that would be expected considering she is sleeping more than she is awake (one of the Big 3 EOL/Dying Process symptoms), but now we have to take with a grain of salt EVERYTHING she says as it is a mixture of cognitive & confused.  Mom tells me one thing and says the opposite to the aids -- there's always 4 versions to her stories and sometimes she comes up with some real zingers -- extremely irrational!

2.  More Pain.  Her hip, leg, and arm pain seems to have increased just this past week and she is asking for more meds.  Mom is currently taking a hydromorphone called "dilaudid" which is a typical opioid (narcotic) given for pain relief at EOL.  Dilaudid is a derivative of morphine that Mom is given with acetaminophen four times a day + she can have more pain medication up to every hour if needed.  The tricky thing with dilaudid & morphine is that they can also mess with breathing and actually end their life quicker -- there's a fine line.  [Update: They have upped her dilaudid to every 4 hrs. around the clock.  This will help with pain, but she will sleep more and no-doubt eat less.  It's a no-win situation.]

HERE is good link on hospice meds. and end-of-life symptoms.

3.  Shortness of Breath. I haven't noticed this, but Mom told the hospice RN that she is experiencing shortness of breath quite often. The nurse did offer to order her oxygen, but Mom is refusing it, which is her right.  Mom said she thinks shortness of breath just comes with old age -- Mom is pretty set on her ideas.

4.  Vivid Dreams & Conversing with the Dead.  Mom sometimes tells me about her dreams as this has become her new reality with sleeping so much.  Recently she told me how her and Dad (who passed away 16 yrs. ago) were talking & picking over the food, but she didn't say it was a dream.  Her dreams are now becoming a problem in that she imagines she is more capable than she is and she thinks she can actually do what she is dreaming up.  Recently she has wanted me to buy her a cane (she will never walk again), and bring her sewing machines & mixer.  The reality is that she is too weak to do anything and I often have to physically bring her hands out from under her blankets just so she can eat.

5. Sleeps more.  Sleeps with her eyes half open.  Mom has been falling asleep while in the middle of eating a meal, sitting (raised up) in bed holding her spoon or coffee cup half way to her mouth ready to take a bite/sip, but is out like a light... rather mannequin-like. Additionally, she often sleeps with her eyes half open which is an end-of-life thing.

6. Withdrawing/Staying in Bed.  Although the aids offer to get Mom up, Mom says she is happy snuggled down in bed.  Sometimes she has big ideas that she wants to do something, but then when the aids offer to put her in a recliner or wheelchair, she refuses.


So, as you can see, the failings out-number any small improvements.  And although Mom can sometimes put on a good front with others, I see all the little red-flag signs that she is failing.  It's not that death is imminent, it could be months to weeks, or she could have a heart attack any minute... in her frail condition, it wouldn't take much.

 How am I doing?  Well, okay.  Stressed.  To tell you the truth, I went into this knowing nothing about Social Security or Medicare and Mom kept very poor records (throwing out more than what she should have), so organizing her records and paying bills has been a maze.  Just making a change of mailing address or discontinuing her satellite service seems to take an act of Congress. (rolling eyes)  I also find it hard to not be in control of everything -- there have been times where I believe some of the nursing staff is negligent and I have to take a deep breath and walk away.  I really do appreciate the good nurses!!  I feel my own life is in a holding pattern right now (which I have read is typical); my mind is elsewhere and I'm just going through the motion of everyday life, afraid to plan anything in case I get "the call" (and I do tense up every time the phone rings).  I've decided that some day this week I'm going to visit Mom early and then treat myself to a day at the mall -- I need the mental break!
I'm still learning to relax, but I'm okay.

  From all my research and my own experience, it seems like the one BIG question is always, "how long?".  How long does the hospice patient have to live?  There are end-stage indicators, but it's impossible to say for certain.  Life expectancy percentages are vague in the few studies that I have seen and are really of no value.

One thing that we know for certain is that God has ordered our steps and our days and herein we can find great peace.

Seeing his days are determined, the number of his months are with thee, thou hast appointed his bounds that he cannot pass;
~ Job 14:5


"You have decided the length of our lives. You know how many months we will live, and we are not given a minute longer." Job 14:5 NLT    I found this incredibly comforting! I need to cling to this truth and focus my mind on God's sovereignty in it all.:

Thanks for Visiting!
Until next time. 
Blessings, Jane

Saturday, November 19, 2016

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.

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.   

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 ♥