A Year Ago Today My Mother Smiled...

... A Year Ago Tomorrow, My Mother Was Gone (Deceased).

It's been a rough & busy year, yet my last days/year with Mom seem like yesterday.  The last time I visited Mom at her hospice bed in the nursing home was a year ago today.  She hadn't been very cognitive the last couple months of her life, but a year ago this morning she was a bit more alert!  Surprisingly, she had eaten a couple bites of toast for breakfast, and after a relatively short visit, as Mom was now sleeping most of the time, I told her we were leaving and she somewhat excitedly said, "Oh okay" and even nodded her head and gave me a smile -- something I hadn't seen in quite some time.  So as Anna & I left, I felt better about her condition than I had for the last week or two and actually thought she might have more time than I expected; forgetting that often folks have a really good day just prior to their death -- at least that has been our experience with some of our family.  It's hard to say exactly when she passed, it could have been anywhere between 4:30 p.m. that evening and 8 a.m. the next morning as I don't think anyone had really checked on her to notice she was gone until the morning nurse arrived with medications.  I'm sorry I wasn't with her that evening/night.  

Daddy & I love watermelon!    Dad & Mom down south visiting Mom's sister.

I miss both my parents!  I was the apple of my Daddy's eye (an only child) and he was the best Daddy in the whole world to me!  I miss everything about him!  Dad's humor, his love for the LORD and standing singing hymns along side of him in church (some hymns really bring on the tears), or going fishing -- he was my world.  Dad passed away in October of 2000, just a month shy of his 87th birthday.  Mom passed January 31, 2017 at the age of 88.  Mom wasn't the easiest person and she didn't seem to know how to love me or our family so much, yet I hold on to the good memories.

This past week I've been going through my calendar, bank statements, etc., preparing for the tax man, which was like walking down memory lane as my mind played back each "mile marker" of this past year: the daily visits to the nursing home, funeral planning, cleaning Mom's townhouse, the estate sale, hiring a painter & preparing her home to sell, selling her townhouse twice when the first buyer fell through, finally the odd closing, paying bills & closing accounts... still getting mailings from flippers wanting to buy her place!

Thankfully, outside of an occasional mailing to Mom, everything is now completed.  There are good days and hard days emotionally.  I sometimes feel emotionally drained, but it usually doesn't last for a whole day.  Just this past week I was filling out a form that had to do with something of Mom's and for the first time since Mom's passing, I had to give the name/address/phone of my nearest family not living with me.  Hmm, that set me back a little as I'm kind of an orphan now, although an adult with a family of my own, I have no close relatives from my childhood.  I do have one relative, my only cousin who is 11 yrs. older and his family, whom I cherish greatly, but live over an hour away and unfortunately we rarely see each other.  So I had to put down my in-laws!  And although I love and appreciate them, it was rather sad.  

I don't know if there's a day that goes by without thinking of my parents, not that I wish them back in the state they were in -- in poor health; I am happy that they are now resting in the sight of our Saviour.  But I miss them and I miss how it use to be.  I miss having a home base with family.

It's funny how often the less significant things bring on the tears...

for instance, these two pots were my Mom's.  In fact, Mom used these as long as I can remember.  She used them when I was a little girl and I just wonder if they might have been her mom's at one time.  She had a few newer pots too, but these were a constant.  The big one our girls call the mashed potato pot because Mom always made mashed potatoes in it when we were at her place for the holidays.  My Calphalon cookware was wearing out, so now these are my everyday cookware full of good memories, and so I have to fight back the tears almost every time I use them.

This isn't the best example, but Mom had very nice handwriting right up until her fall.  Some days my handwriting looks just like hers, but I'm never consistent.  She had a little ID-type card in her checkbook that she had written "daughter", my name & phone number that somehow I cherish.  While taking care of Mom's bookkeeping over the past 1+ years, I saw her handwriting often and it was like time stood still (more tears).

I miss my home town.  Just last week I returned to close out Mom's bank accounts and for days prior to going (delayed because of a snowstorm), the very thought of doing it brought so many tears.  It was the very last reason where I had to return to the area I grew up in, the area I absolutely love and have so many good memories.  Seriously, I prayed that I could hold it together and wouldn't break down crying in the bank, as silly as that may sound!  But it was good for me to go as so much has changed in the last 25 years with mansions all around.  I found out what I really missed were the memories of how it use to be, which I will always hold close in my heart.  And of course I have a car, I can visit and shop there any time I want.

Yes, it's all the little things that flood our hearts with joy & sorrow

that make up life and love.

That's a good thing.  And I'm thankful that YHWH (God)

has given us a Comforter for just such times.

And now I snap back into the present with much comic relief, like Anna bringing me a beautiful bouquet of flowers in memory of Mom's passing and Inky (cat) knocking them over, breaking the tall vase full of water, half of which poured into my purse.  I now have everything in my purse laying out to dry. :)   

Thanks for that final smile Mom.
I'll remember it forever!
Love, Jane

Moving Forward & Update

Moving Forward
Closing a Chapter & Finding a New Normal 

I guess I feel the need to make one final footnote following our hospice & loss journey.

Don't worry, more pictures below. :)

I told my family a week or so ago that I finally feel like I can put the past (mostly) behind me and move on.  It's nearing six months since Mom passed away; the events of the last 9 months (actually since Nov. 2014 with Mom's first heart episode) have been draining to say the least.  I still occasionally have tearful days, but I can see a light at the end of this tunnel.  My attention is finally shifting back to our home front; my wonderful family has been so very, very gracious & helpful as I work through all this, and I'm so thankful for them, now if I can just extend that same grace to myself as I feel so very behind on everything.

~~~~~

Just as a quick update as to some of what has transpired regarding the aftermath of Mom's death:

We sold Mom's townhouse in 5 days (Lovin' that it's a seller's market!!!), but the 1st buyer backed out of the deal a week before closing (AUGH, no reason given), so then we sold it again in 6 days.  Then at the 11th hour, a week before the scheduled closing, the buyer finally has their inspector come out and wants us to do 4 fix-ups prior to closing, which didn't seem all that big of a deal -- one was just plugging in all the appliances and making sure they work (they do, we just unplugged them to reduce utility costs on a vacant home).  Jeff easily did two more -- (2) adjusting a setting on the garage door opener & (3) replacing the dryer vent with a non-flexible tube, but the fourth item  

Mom's Townhouse

was a new electrical box -- did I mention this was the 11th hour?!.  So without the luxury of having time to get estimates, we hurriedly got an electrician out there and a new box was installed ($3,000+); we are ready to close!  But wait, there's more...  so immediately after we bend over backward and get everything ready for a July 13th close, we are informed that evidently the buyer's lender had dropped the ball and didn't get an appraiser out soon enough, thus the closing would have to be pushed back another 2 weeks.  Oh man, I couldn't believe it!  Yes I cried!  Hope deferred makes the heart sick (Prov. 13:12a)  Additionally, all the delays cost me more money since I still have to pay utilities, association fees, and property tax.  Now the closing is set to happen in less than a week...[Update: The townhome closed June 26th, yeah!  The lady agent for the buyer was quite rude and she made sure the buyer was in one conference room and us in another -- passing papers back & forth between rooms (I've never been in such a situation).  I never did get to meet the buyer or even get a good look at her, which makes me sad; I was all prepared to give her information on the place, answer any questions, and wish her the very best.  Instead the agent grabbed the folder and cut me off in an unpleasant tone & hurried me in trying to explain the folder I had for the buyer.  I wonder whether the agent had a very false preconceived idea of me or whether she's that rude to all sellers, but I found it very hurtful.]        

The few final utility bills are coming in and being paid; it feels amazingly freeing!   I will be free of all those additional expenses and almost done with everything, everything that is except...

I am still nervously awaiting for the medical bills to arrive.  I've only received a couple relatively minor bills, but I expect to see at least one very substantial hospital bill.  And unfortunately it looks like I might be forced into a battle as Mom's supplemental health insurance has all of the sudden decided not to pay any of Mom's 6-day hospital bill that included ER and ICU. (What?)  In doing some research, I am now finding out that Mom's choice of supplemental medical insurance is notorious for stalling and not wanting to pay, so as if dealing with a loss isn't enough, now I have to rally myself & fight them.  Their reason for not paying is fishy to say the least, and now they are stalling -- their dishonesty may work on some, but they don't know who they are dealing with here.  Getting tough with them is the last thing I feel like doing, but we are talking a lot of money, so if I'm unable to get anywhere with them soon, I'll be reporting them to the State Ins. Regulatory Department. (sigh)  Hopefully they will change their mind.

So in closing on all that I've shared about caring for the elderly and our hospice & funeral experience, I guess my top two words of advice are:

1. Make sure your loved one has really, really good life & health insurance.

2. Document, document, document everything!  Even on what might seem insignificant, like cancelling satellite tv or auto insurance.  Make sure to write down everything and keep it on file -- when you called (record date & time, who you talked with, make good notes after each call), keep copies of correspondence, etc. because some of it might unexpectedly drag on or come back to haunt you, and you want a paper trail to look back on that gives you an upper hand when dealing with unsavory individuals/companies.  You might think you are doing alright, but it's surprising how grief/loss can really fog one's thinking & memory, and as hard as it is to comprehend, some people take advantage of that.

All in all,  I think I was/am doing pretty good.  It takes an unbelievable amount to time to make closure on a person's life -- closing accounts, sending out letters with "proof" that you are the qualified representative/executor, phone calls, emails, organizing, etc..  The stress and emotions of it all can leave one in a fog; I went through the motions of just getting things done on an as-needed bases with little else accomplished, interspersed with periods of just staring out the window while thoughts drift to replaying recent events or recounting memories of the past.  Not only my life, but that of our entire family was somewhat on hold for a very long time, always "on call" not only during Mom's declining health & impending death, but pretty much for the last 24 years -- between Daddy's and my aunt's decline/death, and my Mom's reviling ways, it's been a long season.

Finally my thoughts are really beginning to switch over to the here and now -- back to my beloved family and farmette, and finding a new norm without the constant worry over my extended family.

 So, with that said, boy do I feel behind!  I can't believe it's already mid-July -- I feel like I'm just getting started and already school supplies are filling the store shelves and fall fashions are starting to appear.  So, when we are not consumed with estate matters, here is a little of what we are squeezing in during our fleeting Minnesota summer:

  

Garden

Despite a late planting because of caring for Mom's estate, our garden is doing well.  God has blessed us with some amazing successes and unusual failures.  I'll give more detail about that in my next blog post.

Farm & Ranch

Earlier this spring we ran out of hay for the horses and Grandpa had to come to the rescue with a couple big round bales -- it was fun to try the rounds, but I guess I like the square bales best.  Last year we bought most of our hay from my in-laws, not realizing the bales are a bit smaller, they just didn't suffice -- this year we will get more.  Here Jeff & the girls are gathering the first cutting at the in-laws, working fast as a thunderstorm draws in.  

Horses

 Our silly horses are doing just fine, but are underworked.  Our beloved farrier keeps asking if they will be getting off of welfare this year, haha.  I wish.  But between the weather, the girls work schedules, and again, Mom's stuff, this year isn't looking good either.  I spent an hour combing out Sundance's mane and the dreadlocks he seems to twist; I hated to cut his beautiful long mane, but it wasn't looking very beautiful the way it was either.  On hot summer days, we go out every 2-3 hrs. and mist (hose) down the horses to cool their body temperature.

Rodeo Days in Isanti, MN

Rodeo

Of course, the local rodeos are a highlight of our summer.  I think Anna & I have been to only 4 rodeos so far this year - we're slipping.

Bison at Sunset on Snake River Farms

Meat

Our freezers are FULL of meat!  I order beef, bison, lamb, and last year, chicken, from a farmer/rancher who operates much like famed farmer/author/lecturer Joel Salatin of Polyface Farm.  It's an hour drive just to pick up the harvested cuts, but well worth the lovely drive. 

Fit & Healthy, not really

Hubby works for a major medical device corporation and as part of our corporate medical insurance, we have to earn 15,000 points each by the end of the year in order to receive a discount on our medical insurance.  Of course, my Mr. Sporty has long surpassed that goal, whereas I didn't even start until mid-June, but I'm happy to say I already have over 11,000 points.  We were given these cheapie fitbit-like activity trackers, but I must confess, mine seems a bit off and I can rack up the steps much faster then Jeff by doing practically nothing.  That's okay, I need the advantage -- a little friendly competition. :)

Chalkboard-looking Calendar

One Crafty Project

Haven't had time for much home projects, but I recently finished this 20"x16" framed calendar.  I painted the frame, left over from the funeral photo display, and ordered the jpeg calendar on Etsy.  The girls can write their schedules on the glass with wet erase markers so we know when they work and I can easily tell Gma when she calls and asks -- she likes to stop in at their work to visit.

    

That's about it for now.  There's always something.

The girls are working a lot and so we really enjoy a rare day/evening when we all four of us can be together, but we are sorely behind in having people over because of work schedules -- meanwhile summer is flying by.

I am feeling like I'm finally ready to start tackling home projects again.  Besides the house needing a good thorough cleaning and the garden & flowers needing constant weeding, here are my top to-dos:

• Changing up paint colors on the walls
• We are badly in need of a new sofa, but I can't find anything I like -- the search continues.
• We have 3 clocks that need service; after calling to inquire about house calls & the sticker shock, I'm going to watch (no pun intended) some online videos and see if I can do it myself. (scary)
• I love looking at real estate and for the past couple of years Jeff & I have been talking about the future, retirement, and what that will look like.  Now that we know what we want, I'm on constant lookout for the "perfect" land to build our retirement cottage.  I would like to be on a lake, Jeff wants lots of land, we both want a one-story walkout.  So with real estate tight, if I find something, we will jump on it, which could be tomorrow, or it could be years from now.  At any rate, although we love our location now, we know this 3-level home will eventually not work for us -- too big, too many stairs!

That's all!

Next post I'll give a little photo journal of our garden, so far.

See you Soon!

Until then,

Happy Summer!!

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

Our Hospice Journey - Transitioning

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

Mom & Dad 1954 Wedding Day

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

Our Hospice Journey, the Beginning, and

Our Hospice Journey - Week 6 Observations

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

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

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

Mom, a work photo
1980's-ish?

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

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

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

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

Signs of the preactive phase of dying:

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

Signs of the Active Phase of Dying

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

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

Congestive Heart Failure
Life Expectancy Data & Terms:

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

(some have been known to live much longer)


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

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

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

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

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

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

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

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

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

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

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

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

Now, how am I? 

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

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

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

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

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

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

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

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

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

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

God Bless!

Thank you for your kind words and prayers!