Progress report and observations

Ps. 139:15-16  (ESV)

My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

The italics are mine in the verse.  When I read these words yesterday I was struck by their meaning.  This book of the Bible is one that is read frequently.  These particular words  have somehow been more obscure to me until now, as I watch and wait in these final days of my Mom’s life.  Before Mom’s life began, God knew about this – about what she would be facing in her final days.  What’s more, He knew about me, about how I would pray for her to be able to go see Jesus and not lay here unable to eat or drink or converse with those who love her.  Does this boggle anyone else’s mind as it does mine?  God knew the prayers of my heart, knew every second of what is happening right now, before either of us were formed!  This gives me an unexpected level of comfort and peace that I didn’t have yesterday morning.  He needed to remind me, speak to my heart and it came through this scripture. 

Saturday, the day following our return from vacation, I had a conversation with someone that threw me into a tailspin of self-doubt and confusion.  It’s “funny” how a well meaning comment can get into one’s head and go to straight to the insecure places and create such turmoil.  When I returned home on Saturday evening after a full day at the nursing home I had a discussion with the family members gathered there.  As we discussed the decisions that we have made concerning these days of Mom’s life, we hit upon an interesting thing.  In our society we are so much about preserving life from disease and injury.  There are medications for all sorts of maladies and a plethora of techniques to bring healing.  When death comes from serious disease or injury, it somehow makes more “sense”.  But, for some reason, when death approaches because of a long life and the body wears out and is tired, people seem to struggle with letting the natural process occur.  When we stop fighting to save that life, it seems as if we are giving up and not trying to help.  And this is something I found myself battling over the weekend.

Following the aforementioned conversation I found myself wondering if I was doing all I was supposed to be doing for Mom.  Sunday night I crawled into bed and my mind wouldn’t stop!  I played things over and over.  Questions raced through my brain like hamsters on a treadmill.  Finally, I got out of bed, went to the file cabinet and retrieved Mom’s advanced directive, my healthcare surrogate paperwork for her.  I read it over so much I almost had it memorized, trying to be double sure that I was following her directives put in place so many years ago.

Monday morning, as providence would have it, I ran into the facility social worker when I arrived to be with Mom.  The floodgates opened as I shared with her my concerns.  First I had her affirmations and then the affirmations of the Hospice nurse.  Later I sat in the chair next to Mom and turned on my Kindle to read.  I had read several portions of Psalms to Mom on Sunday afternoon.  I remembered that Ps. 139 had been one of Dad’s favorites so I turned to that.  There I found the amazing scripture that touched my heart in a very real way.  The reminder that God knew about all of this before either of us were ever formed.  Today, I sit in peace beside Mom with the assurance that we are doing just what we are supposed to be doing!  Sure, I may have to go back and read those verses several times to remind myself, but I know right where to look!  J

Another thing I learned while struggling with the self-doubt and questions is that death has a personality just as life does.  We walked this journey two years ago with Dad.  His journey into the arms of God was unique as is Mom’s.  You see it in how they respond to what is happening around them and the unique circumstances that have brought them to this particular point.  As I left the nursing home on Sunday night I got into my car and said to myself, “I am flying by the seat of my pants!”  One of the things that we, as a family, realized in our conversations over the weekend is that Mom must be allowed to lead this dance.  What she wants, what she refuses are her choices to make right now.  We are on a journey together.  A line from an article on the Hospice website says, “we get through by going through”.  I will continue to keep putting one foot in front of the other and praying for God’s guidance and sustaining power and by basking in the love and prayers of so many dear ones who are a precious part of my life.

The Final Stretch??

Five days ago…

I am sitting at my mother’s bedside in the nursing home.  The past few weeks have been confusing and frustrating.  There are many questions and very few answers.  For instance, why has her level of confusion advanced so quickly?  Why is she in pain?  What are the circumstances of that pain and how do we best address it?  She either can’t poop or she poops too much.  Why is she sleeping all the time?  Why does anything you put in her mouth to hydrate her cause her to grimace like you are putting bitter poison in her mouth?

Today…

When I started this blog entry Mom had been back from the hospital for two days and was dealing with her third bowel impaction in three weeks.  While she is no longer in any pain things have not improved regarding her fluid intake but have continued to be pretty much the same if not increasingly worse.  She seems to have her most energy and wake time in the morning.  The staff dresses her and takes her to the dining room and she eats and drinks a small amount but as soon as she sees a family member she asks to be taken back to her bed and there she remains until the next morning.  We offer her food and drink at lunch and dinner and she barely partakes and often just refuses saying she doesn’t want anything.

One time, while she was still in the hospital we talked about heaven a bit…talking about how she would see Daddy.  She replied that it would be wonderful because I would be there too.  My thought was that I would rather not go with her right now…I’d kind of like to hang around awhile first.  JJ    Earlier this week I told her that I wanted to talk to her about something.  I said, “you know Mom, you are 90 years old”.  She looked at me with a shocked look on her face and replied, “I AM???  I told her that she was closer to heaven than ever been before.  She struggled for a while, trying to formulate her words and finally said, “I just hope he’ll have me.”  I assumed she was talking about Jesus. We talked about the assurance she has because of her acceptance of the gift of Grace and the price that was paid at Calvary.  Even after 70 to 80 years lived for the Lord of her life she seemed to have a concern about being accepted by God.  But then again, maybe she was thinking about Dad and hoping he’d have her back because she cried and said she was thinking about him during that same conversation.  With her dementia, one can never be quite sure during some of these conversations.

Speaking of her dementia…that, too, is an enigma.  We can have a conversation that makes little sense whatsoever and then she will surprise us with remembering someone or details of some occasion that will leave us scratching our heads.  The human brain is an amazing thing!

A few months ago, we were planning our summer vacation.  We went back and forth trying to decide what we would do.  Last summer Sam and I took a ten-day road trip.  This year we decided to do something that we had done about 3 years ago…rent a cabin in the mountains of North Carolina for a week.   Tomorrow that week begins.  Woah, you say, how can you do that while your Mom may be dying?  I can tell you this, the decision was not an easy one and two days ago I was saying that there was no way that we would be going. 

Let’s back up to Monday of this week.  When I wrote the paragraph at the beginning of this post, I was desperately looking for answers as to how to best care for Mom at this point.  I prayed much for wisdom and sought wise counsel.  I had decided that if Mom was still in the same condition on Monday morning that I would ask for a Hospice consult.  I didn’t want Mom to be pushed beyond her desires if her body was truly beginning to shut down.  (I had already learned through a similar process with Dad that the human body has a way of naturally shutting down and if one is forced to eat or drink when their body is saying “no” it makes the process more painful and difficult.)  Tuesday we met with the appropriate Hospice personnel and Mom was evaluated and accepted into Hospice care.  While she remains in the facility where she has lived for the past two years, Hospice will oversee her care along with the continued care of the nursing home to provide her with comfort and dignity in what we believe to be her last weeks of her life.

Our case manager/nurse was not the same one who evaluated Mom and brought her into the program.  The next day, when the nurse who was to be our overseer came to visit with us, I told her about our vacation and how I was considering cancelling.  We had already paid a substantial deposit that was not refundable at this point, but compared to a human life, the money was unimportant.  While I was talking to the nurse it was apparent to her that I was at an emotional breaking point.  She assured me that barring any unforeseen circumstances Mom’s death was not seemingly imminent.  We agreed that none of us can know when God plans to call us home.  Her advice was that I should continue with our plan and that it was important for me to have the time to refresh and regroup.  Other staff members at the facility also encouraged us to continue with our plans for vacation.  I still didn’t have a peace about going at this point.  My niece, Sherri, who has been my sidekick in caretaking for the past 4 years, had also planned a vacation with her family that overlapped with ours.  She too has had a tough time thinking about leaving.

The following morning I was praying for guidance on the way to the nursing home when it seemed as if God was speaking to my heart.  He reminded me that I had other siblings who were just as much Mom’s children as I was and that they could help and it would give them a chance to minister to their mother if I stepped out of the way.  Since I have been doing the major share of the caretaking, I had begun to think that I was the only one who could do it well.  My younger brother, Rich, had been visiting and working in the area for a couple of weeks.  I asked him if he would be able to stay for another week to help Rosie and Jim, (my big sis and her husband) with visiting with Mom and keeping her company in shifts for the next week so we could continue with our vacation plans.  He was able to work things out so that he could stay in the area.   My older brother, Paul,  was able to fly in from Michigan last night for the weekend.  When I got home from the nursing home last night I saw a familiar car in front of our house.  A friend, who is more like a sister, had just driven in from New York.  I didn’t know that she was coming.  She had “adopted” my parents as hers over 30 years ago and my parents done the same with her.  She had a vacation planned for this week to go on a stateside mission trip and decided to come to Florida instead.  So now there are four family members who will be there, loving on Mom, for the next week as well as Paul for the weekend.  It suddenly occurred to me that they have all been given an opportunity to minister to Mom in a way that will bless them and Mom and this would not have happened if I had stayed home.  God has a divine plan for each of our lives.  He often surprises us with situations that look like complications but are really designed to help us grow and stretch and be refined in the process.

One of Mom’s nurses told me, “Go, go, you need to go and get some rest.  Your Mom will be okay.  We will take good care of her.”  She calls Mom her African Mommy.  The nurse is from Sierra Leone and her mother died there 10 years ago. (She cares for Mom as if she were her own.)  Then next day she came to me and said she had gone home that night and started thinking about what she had said.  She worried that if something happened to Mom while I was away that I would blame the nurse because of what she had said.  I assured her that I truly believed that Mom’s life was in God’s hands.  If God chose to take her home while I was away then that was His plan and I was at peace with that.

Yesterday, I told Mom about our vacation and what we were doing.  She surprised me with the response, “I remember when you did that before”.  She also told me how glad she was that we were going to be able to do it again.

So here we are, Sam and I, on our way to our mountain vacation. We will be joined by our sons, their wives and two-year old Beulah.  Sadly, due to medical school demands, Heather’s family will not be able to join us.  We are keeping in close contact with the family at home and will be getting frequent updates on what is taking place there.   Maybe Mom will surprise us all and rebound.  God only knows.  But in the meantime we will all love and care for her to the best of our abilities.