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 aprrox. two weeks, so if you do the numbers, yes, time was drawing near, but I was watching for 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); and just wasn't observing anything that would red flag her final hours. 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, they asked, if possible, whether 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).  Of course, yes, I wanted to be by Mom's side, and now this 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, and that is what the death certificate now reads, "found 8:11 a.m.".  How sad!  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:

11/19/2016: Our Hospice Journey, the Beginning

12/19/2016: Our Hospice Journey - Week 6 Observations

1/21/2017: Our Hospice Journey - Transitioning

2/10/2017: Our Hospice Journey... Is Over

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