Thursday, September 12, 2013

Mom's Death...And Her Beautiful Life

This has been a truly exhausting week.

Mom made her exit on Tuesday, September 10 at 2:23 PM Mountain Standard Time.  She was surrounded by me, my brother, my sister-in-law, my cousin, and my aunt.  Although both of my sisters had been there earlier, neither was there when Mom actually passed, and I think it worked out better for them that they weren't.

Although this has been a very difficult and painful week, it has also been a very spiritual and meaningful one.

I had never actually watched someone die before and certainly not someone as close to me as my mother was.

Jonah and I arrived in Utah on Thursday of last week, and I wrote about that night here.  Friday morning Mom was still pretty coherent, but drugged out a bit.  We had already determined to let her go, so it really was about making her as comfortable and pain-free as possible.  We took her off oxygen.  The tube in her nose was annoying her, and we figured it would only prolong her life anyway.  We also stopped the IV fluids.  Mom had already stopped eating by this point, although she was still drinking water.

She was in renal failure, and we were told it would take anywhere from a day to a week or so for her to pass.

As I said in my last post, I am convinced that we made the right decision on her behalf.  It is what she would have wanted and she would have been pretty miserable and confused otherwise.  She could have gone on dialysis three times a week for a the rest of her life and lived with her right leg missing; but a woman in her mental condition would have been very agitated, confused, and miserable as a result.  It might have been nice to keep her around longer, but I think it also would have been a long and painful road for both her and us.  I just think she would have been very sad, which would have been hard for her after she had finally found happiness again.  I miss her already, but we did the right thing, and now she is with my dad, whom she has been away from for 21 years.

Many of us stayed in the hospital with her on Friday.  I wrote down some of the things she said, which may have been drug inspired, but which I like to believe were her thoughts as she grew closer to the heavenly realm.

Here are some of the things she said, both in the hospital and in the assisted living facility:

"It's different."
"It's weird."
"I'm happy."
"It's great."
"I'm doing great."
"It's funny."
"Somehow I found a place."
"Everything went well."
"Nobody will understand.  Just the people who know."
"Nobody knew but us."
"It's a secret.  Then they'd know."
"Sounds like little children."
"It's so beautiful.  It's so beautiful."
"It's a little trick."
"I think it's fun."
"It's fun to watch it because we already know."
"We find each other.  We find each other somehow."
"Did you see that?"
"I think we have to."
"It's true."
"It was really good." (about Harold's guitar playing when he visited Mom)
"Who's the boy with the monkey?" (my favorite)
"You're welcome." (after I thought she said "Thank you," and repeated it to her to see if that's what she said), and which was the last audible thing she said to me.
the second to the last audible thing she said to me: "I knew you did it right."

When hospice took over, we decided Mom could be moved back to the assisted living facility where she was living, and arrangements were made to move her there in the afternoon on Friday.  We felt Mom would be happier in a familiar place and that way her friend Harold could visit her, and his visit at the hospital really seemed to brighten her spirits.  Plus, Harold was in mourning just as much as we were, and we thought it would be good for both him and Mom.

I spoke with the hospice social worker and signed a bunch of papers and made arrangements.  She was very nice and wanted to make sure Mom was comfortable.  I do somewhat regret remaining with that hospice service rather than dealing with the one that partnered with the assisted living facility, but we made the choice we made, and that service did do some very good things for Mom.  We did have a major snafu with her morphine pump after moving her to the assisted living facility and it seemed the assisted living staff and the hospice staff were not on the same page; the first pump Mom was given was broken; and so Mom was in some pain when first arriving at her home at the assisted living place.  Eventually (although not quickly enough for my brother and me) the problem was resolved, and we gave Mom a large dose of morphine to deal with the pain, and she slept for a very long time.

During the pump snafu time, Mom was able to talk a bit, although it wasn't always coherent.  She seemed aware, but confused, which is how she was in her state of dementia anyway.  I stayed with Mom that first night.  Jonah went back to my friend's, who we are staying with, to get a decent night's sleep.  I slept on a leaky air mattress while Mom slept.  She was out most of the time although occasionally she would open her eyes. 

I didn't sleep too well, mostly because the air mattress was deflating and because the nurse kept coming in every hour to check on Mom.  Mom seemed relatively normal that first night.  Her urine output was almost nil and her fecal output was nil.  She had both a catheter and a fecal tube as well as the morphine pump attached to her.  They had removed her old bed and replaced it with a hospital bed.

We didn't know how much time Mom left; only that it wasn't much.

My siblings and I were in and out, spending hours at a time with Mom and then leaving to get a break while someone else (or many someone elses) stayed with her.  Sometimes we stuck around the assisted living facility on the porch or in the dining room.  Part of me was afraid to leave because I thought she would die while I was gone.

I don't know why it was important to me to be with her when she passed.  I guess I'm a bit of a romantic with a spirit of drama, and I wanted my "movie moment" where Mom took her last breath by my side.  Although I did eventually get my "movie moment," the long week of her dying eventually taught me that I didn't need it.

I think all of us expected Mom die more quickly than she did, although none of us were particularly surprised that she didn't since Mom tended to be very independent, doing things on her own terms, and who was a bit of a hanger-on-er. 

Much of the week is a blur to me.  I remember events and experiences, but not necessarily when they happened.  I know that Saturday morning Jonah and I went out.  Jonah just wanted me to get a break and get away.  He's been such a great support to me during all this, and I haven't always been as kind in return due to stress.  But I have a hard time imagining going through all of this without him.

I know that Saturday there was one point when Jonah, my brother, and I were all with Mom and thought she would die during a half hour period.  Her breathing was very erratic, her pulse was above 100 beats per minute, and there were about 12 seconds in between some of her breaths.  She was aware and communicative, but her voice was weak and sometimes hard to understand.  That was when she told me, "I knew you did it right," and at the moment I thought those would be the last words she ever said to me.  I don't know what she was referring to, but I know it was meant for me specifically.  I hope it refers to my relationship with Jonah or the way in which I helped care for her or the way I'm living my life or the choice we made to not prolong her life.  Whatever it was, I'm glad she's convinced I "did it right."

I remember two specific times when Mom was in the midst of dying, I felt a warmth on my shoulders and neck; not a room temperature sort of thing, but a spiritual presence of some sort.  That's what I believe anyway.  I think there was a being (or beings) there helping Mom prepare for her transition.

I also remember two interesting visions I had.  One happened while I was caressing Mom's hair and stroking her arm wondering how long she would be with us.  While I was doing this, I saw a much younger version of Mom doing the same thing to me just after I was born.  In truth, I don't think Mom actually got to hold me after I was born.  I was born two months early and was in very critical health, and for the first three days of my life, the prognosis was not good.  I spent several weeks in an incubator.  So I don't think Mom held me much, if at all, during the first weeks of my birth.  But the point of the vision, I think, was to show me that at the beginning of my life, Mom was praying for my life and hoping I'd be okay, and here I was at the end of hers praying for a painless and easy death for her and hoping she'd be okay.  It just was a testament to me of the circle of life and it felt very apropos. 

The other vision I had was I was looking at Mom breathing in and out in a deep sleep and suddenly I thought I saw my dad's face in hers and then my own.  I'm not sure exactly what it signified, although I have my theories.

Saturday night my brother stayed with Mom.  I waited for the call that never came; that Mom had finally passed.

Sunday was a day of visitors.  My aunt and uncle came by.  Mom's very close friends who she used to live across the street from came by.  Mom's friend that she's known since she was 16 came by.  My niece and nephew-in-law.

I took a picture of Mom with her old friend and neighbor.  It turned out to be the last photo taken of them together.

At this point, many of us wondered why Mom was hanging on.  Shouldn't she have passed yet?  It just felt like she was dragging it out and, frankly, it was hard to watch at times, wondering if each breath would be her final one.

Mom's friend postulated that maybe it was hard for her to leave while all of us were there, and that sometimes dying people needed time alone.  Jonah wondered if my presence, in particular, might be making it hard for Mom to leave.

Jonah, who had really been having a hard time dealing with the unfairness of Mom's early and unexpected demise and her slow death, had a long chat with God about it, and this is what brought him peace:

"I was talking to God right now and asking what lessons are learned from
a slow death ... in all this there are lessons for every one...each one us
takes a different one when we are there or when we leave.  it all about
accepting what you have seen before you.. I have already told you the
secret God says. I accept you for who you are and I love you for who
you are...Just remember acceptance is the key and I am ready to accept anyone when they are ready to be accepted..." (sent to me from Jonah in a text message)

As Jonah and I discussed Mom's impending death, one thing we theorized is that free agency being the eternal principle that it is there is no reason to necessarily doubt that Mom had choice in exactly when she might depart this mortal existence and maybe she wasn't ready or was afraid or was concerned about leaving us or whatever.  I also came to realize that Mom wasn't in pain or suffering that we could tell (in fact, one of the clearest and most audible things she said was "no" when Jonah asked her if she was in pain) and so why should I be in such a hurry to let her go.  Yes, it was hard to watch her slowly die, but I realized that wanting her to die more quickly was more about alleviating my suffering than hers, and once I accepted that I decided to just cherish every moment I still had with her, no matter how painful it might be for me.

During much of the time Mom was dying, we would let Harold come in and see Mom.  The first time he came, Mom was still conscious enough to recognize him and seemed very happy to see him.  He asked if he could give her a kiss and she agreed.

The second time Harold visited, Mom was unresponsive and he asked if he could kiss her, but she couldn't give permission, so he didn't.

The third time Mom was unconscious, his visit was very short, and I told Harold he could go ahead and kiss her.  He was very grateful.

Mom and Harold meant a lot to one another, and even though we all believe Mom and Dad are reunited now and that Dad is Mom's eternal mate, the fact remains that Harold and Mom made each other very, very happy these last couple of months.  Mom's demeanor was such a happy and vibrant one and much of that was due to Harold.

I think my brother, in particular, seemed a bit put out by Harold's visits and that perhaps Harold was overstaying his welcome and taking time away from the family.  Harold's first visit, in particular, was quite long and extended.  I even think perhaps my brother was a little jealous of Mom's relationship with Harold.

When I say what I'm about to say, I am not judging or condemning my brother.  I truly think he has done the best he knew how to do during these past few years in dealing with Mom, but the fact is that of the four of Mom's children, he probably spent the least amount of time with her.  He always had work or church or family obligations and just didn't seem to have time to visit with Mom the way my sisters and I did.  Certainly he visited with her and helped her, but I wondered now that Mom was dying if perhaps he was realizing the lost time he could have had with Mom.  Maybe my brother has no regrets; I'll never know - my brother isn't too vocal about his feelings nor does he wear his heart on his sleeve the way perhaps my older sister and I do.

But it's like Jonah said in his text message in another part:

"I look at your Facebook page and saw Harold and mom
picture...and yes I too hear the same stories over and over from you as Harold
heard from mom but not once have I left you .. I have sent all of you a
special someone like that ..Harold once again I tell you loved and
accepted mom for who every bit of who she is .like I do you .acceptance
is the you accept death for what it is or do you fear it..."

I know all of us at one time or another got impatient with Mom's memory loss and hearing the same thing over and over.  I eventually reached a place where it no longer mattered.  My phone conversations with Mom these last few months rarely varied.  It was the same conversation over and over; but I didn't care; I was just happy to talk with my mom.

Harold accepted Mom for exactly who she was and not only listened to her repeat the same things over and over again, but delighted in it.  Just like our Father in Heaven, who hears us pray and ask for the same things over and over, Harold didn't say, "I'm sick of this; you're wearing me out."  He accepted and loved Mom just for who she was...and he made her very happy and she, him.  Her death was very hard on him, and I felt he deserved just as much time to mourn her as anyone, whether he knew her as long as we did or not.

I did try to make sure my brother got some alone time with Mom because I think he needed it, but I just hope he doesn't live with regret of missing time with her.  I think my brother really made an effort to be with Mom while she was dying, but I sometimes don't feel he made that effort when she was living.  Again, no judgment or condemnation; just an observation.

A really fascinating thing happened on Sunday night.  We had thought Mom was going to die soon due to her irregular breathing and rapid heartbeat.  She hadn't eaten anything in several days, and although we tried, she wasn't taking much water.  Her lips were chapped, although we tried to keep them moist.  Her potassium levels were very high, which meant her heart could give out.  Her kidneys had shut down.  Her oxygen level was 71, and they had told us the 60s was where to expect death. 

For much of her dying period, I had played old standards because Mom loved that kind of music, and it was funny how so many of the songs started to take on double meanings under the circumstances.  "They Can't Take That Away from Me" made me think that even though Mom was dying, her influence really couldn't be taken away; "Que Sera Sera" - what will be, will be; "Unforgettable" - that's what Mom was and is; the "Sentimental Journey" Mom would soon be taking; "I'll Be Seeing You" - knowing that soon everything would remind me of Mom; "Embraceable You" - one of Mom's very favorites (and what Jonah will be singing at her services).

When Mom was conscious, she would move her lips, and I know she was trying to sing.  Her first night at the assisted living before she got worse, we sang it together while we were dealing with the morphine pump fiasco, and that seemed to calm her down.

But on Sunday night Jonah wanted to sing to her.  We started singing "How Great Thou Art" and then Jonah encouraged me to sing some familiar LDS church hymns, which I did.  Even though Mom was asleep, her lips would move, and the most remarkable thing was that her breathing regulated itself.  Whereas her breathing pattern had become sporadic with 9-12 second between breaths and a heart rate of 100 beats per minute, after Jonah and I sang with her, her breathing became normal and her heart rate when down to about 73 beats per minute.  We also learned that her oxygen level, which had been 71, had gone all the way to the mid 80s.  I knew music was powerful, but I was absolutely floored by the change in her.  We told my niece and nephew about it, and they asked me to sing with them to Mom, and it was a wonderful experience.

Jonah and I stayed with Mom a bit that night.  Jonah said after I fell asleep that Mom's breathing and mine had been opposite, but that we eventually started breathing in time together while we were asleep.  I thought that was interesting.  Jonah eventually left and I stayed with Mom that night and actually got a better night's sleep.

Jonah and I actually think the hymn singing may have prolonged her life another day.  Her breathing remained fairly steady for a while.

By Monday night, Mom's fluid build up had gotten worse and her breathing had become gurgled.  I had actually read about the signs of death for someone going through renal failure, and the "death rattle" breath is a sign, so I knew death was getting closer.  And yet I also felt compelled to leave Mom alone for the night.

My brother had asked if I was staying, and I said I wasn't, and he asked if he should come, and I said he didn't have to.  For some reason I felt compelled to follow my neighbor's advice and just let Mom be by herself for a bit.  And in truth, the gurgling breath was hard to watch.  Mom kept gasping for breath, and each breath felt like it would be the last.  It wasn't watching her dying that was the hardest; it was wanting so badly to help her and not being able to.  I also felt that same warmth I'd felt before, and I knew that even if we left, Mom wouldn't be alone at all; there were spirits preparing for her arrival much in the same way my siblings and I were preparing for her departure.  Jonah and I said a very powerful prayer that Mom's transition would be smooth and free of fear and that she would know she wasn't alone.  It was a very powerful and spirit-filled time.  I put my hand on my Mom's head much like I might have if I still held the Priesthood, but simply prayed, and I knew my prayer was heard and being answered.

I told Mom that we were leaving and that I loved her.  She opened her eyes and I know she was trying to say, "I love you, too," but she couldn't speak.  Still, I knew she was aware.

There were times when Mom would open her eyes and they just had a dead look, but I always felt she was very conscious and cognizant of what was going on around her.  I also wonder if her demented mind was filled with clarity as she grew closer to death.

I fully expected to receive a call in the middle of the night saying that Mom had passed, but it never happened.  She had been so warm and had been gasping her extremities were swollen and she was unable to move herself.  And I realized I might miss my "movie moment" of being with her when she died, but it no longer mattered.  I just wanted her to be free on her own terms.

We had asked the nurse to call if there was any change, and she said she would call at the end of her shift at 6:00 am, which she did.  Mom was still in relatively the same shape.  At about 8 or so, my brother called saying that Mom had grown worse.  Jonah and I got there around nine, and I basically stayed with her until the end.

Mom's breaths were very short and gurgled.  My older sister had gotten there and hadn't expected what she saw and called my aunt, who used to be a nurse.  She picked by aunt up, and they came.  At one point, all four of Mom's children were present with her at the same time.  My great-aunt also visited.  The nurses gave Mom a last bath and changed her from her sweaty hospital gown to her regular clothes.  They also turned the bed so we could gather around it.

A chaplain showed up and talked to us.  Although I didn't necessarily require his services, it was nice to talk to him and share experiences we had had.  Jonah was also very good with my younger sister, who was really having a rough time, and said some things to her that really seemed to help her.  My cousin soon showed up.

Perhaps one of the neatest, most beautiful things that happened was the hospice service had a harpist come in.  She played some of the most beautiful music for about a half hour, and I relished in the peacefulness that was present.  It felt almost like we were in heaven.

And a profound experience occurred: I looked around the room at all the photos on my mom's wall and saw the tapestry of her life.  Here's one of her in 1975 with her husband and kids, my youngest sister just a newborn; here's another of her with my brother and his wife and three of their kids in about 1997 or 1998; here's another of her gay son and his partner at Disneyland; here's another of her youngest daughter with her husband and young children taken just last year; here's another of her as a little girl in a big bow with her mom and baby brother; here's another of her enjoying an activity at the assisted living facility; here's another of her family when Dad was having health problems taken a couple of years before he died; here's another of Mom with her extended family, but this time no Dad - he'd been dead many years by that point; here's one of the whole family shortly after my brother was engaged to the woman who is now his wife (Mom had asked, "Are you sure you're getting married?" before allowing her to be in the photo).  And now I'm looking at the map of the world my sister put on the wall showing all the places Mom had been in her life as well as the places her dementia made her think she'd been.  France, Italy, Greece, Turkey, Belgium, Austria, Canada, Great Britain, Switzerland, Holland, Alaska, Yellowstone Park, Disneyland, Hawaii, Boston, New York, and others.  And I start thing of the wonderful life my mom had had, the experiences she's lived; the family she and my dad have grown and raised; and the influence she will always continue to have after her death. 

And then I look down at this frail, dying woman who's mind and body have been wracked by mortality, but who is now surrounded by people who love her very much and whose lives she has impacted for good through her love, generosity, kindness, faith, and sacrifice.  And I am only sad because this beautiful, lovely woman will certainly leave a void in my life and others' lives when she departs from this world; but I am not sad for the wonderful and very full life she lived.

And I truly believe that although her spirit and her body will be separated, that we will never be without her.  She lives on in us.  Those grandkids and great-grandkids who will never know her in this life will know her because their parents and grandparents knew her and were taught and loved by her.  Her example lives on in all of us, and I know we are never alone or without her.

I don't want the harpist to stop, but eventually she does, and I thank her.  You can tell she loves what she does and that she has likely seen many people die.  But she knows why it's beautiful and spiritual.

Eventually both my sisters have to leave.  My oldest one leaves only minutes before Mom passes.  My sister-in-law has arrived.  I somehow find myself in the seat next to Mom.  I am stroking her hair and arm.  There are these little gurgling, gasping noises, but barely any breath at all, and I know the end is near.  I am happy she will be reunited with my dad and her parents and the loved ones that have gone before, and I am happy she will be whole in mind and spirit again; but I am sad to know I will soon be losing the best mom a guy ever could have had and that I will no longer be able to talk to her on the phone and hear her voice or hug and kiss her.  I know I will dreadfully miss her presence in my life.

Mom takes a breath, but does not exhale.  I know without knowing that it is her last.  I have never actually seen anyone die in the flesh before.  It is profound and spiritual.  It really is as if you can see the spirit leaving the body.  The color goes out of Mom's face and although there are still involuntary muscle twitches, I know she is gone.

I continue to stroke her hair.  I put my hand on her forehead and face because I know soon she will grow cold, and I want to hold on to her warmth as long as I can.  We all cry except my brother and cousin.  I go into work mode.  I tell the staff that she's gone; I call the funeral home (who we met with a couple of days before while Mom was dying) and the cemetery.  I schedule a meeting with the cemetery in just an hour or so.

We are given time to be with Mom, although we don't necessarily need it.  We've been with her the last week.  I find Jonah, who's been with Harold.  I let Harold have one last visit with Mom.  The funeral director comes and we go through some logistical stuff.

I give Mom one last kiss on the forehead and then the lips.  She is colder now, but I do not want to forget the way that kiss feels.  The funeral director moves the body and Jonah and I head off to the cemetery.  Fortunately Mom and Dad prepaid for their plots, vaults, and burials, so that has made it easier and less stressful.  It just so happens that every day I pass the cemetery where Mom will be buried because my friend we're staying with lives only a couple of blocks away.  Jonah and I look over the grave site.  We are charged an extra $250 because it will be a Saturday service.  Fortunately, we have all the money we were going to use to care for Mom; now she's using it to take care of us.

I have already pre-written Mom's obituary and funeral program, so I send those off.

Monday is spent doing activities unrelated to Mom.  Jonah is trying to distract me from my grief, God bless him, but all I can seem to think of is Mom.  Even when you think you're prepared for a loved ones death, you really aren't.  Everything reminds me of her ("I'll never be able to take her to this restaurant again;" "Mom would have loved this movie;" "normally I would have been calling Mom right now;" etc.).

I feel lost.  So much of these past few years has been devoted to Mom's care that now I feel like I've lost part of my purpose.  True, this will enable me to devote more energy to Jonah and my career and my own life, but I miss living for Mom.  I miss her.

Today was spent cleaning Mom's room at the assisted living facility, meeting with her lawyer about her estate, helping my brother-in-law with a photo presentation for the funeral, picking out a program cover, lashing out at Jonah when we was only trying to relieve my stress; and having dinner with my sister and brother-in-law.  Tomorrow will be spent getting Mom dressed, made up, and having her hair done and getting things ready for the viewing.

Saturday will be the funeral.  I'm giving a talk, and I wrote this blog entry to help me organize some of my thoughts.  After the funeral will be the burial and a small dinner.

Jonah and I may stay Sunday or go back home.  We definitely must leave by Monday because we both have to get back on Tuesday for work.  It's been a long week.

I wonder when I will come back to Utah.  My family is here, so I know I will be back, but not having Mom here will be weird.

I have absolutely no regrets about my relationship with Mom or my love for her, her love for me, or they way I treated her and cared for her.  That is a peaceful feeling indeed.  I miss Mom, but I know she's in a great place.

The day after she died, when I was feeling especially down, I saw this:

Today I saw a beautiful double rainbow.  I think those are Mom's way of saying, "Hey, I got here all right."

See you later, Mom.


Trev said...

This is so beautiful. God bless you and your family. You do your mom such honor through these posts; your love for and devotion to each other is apparent and I am certain she is very proud of you.

Heather said...

Beautiful, beautiful post. Thank you for sharing such tender moments. I reminds me of the beauty of life, the amazingness of your family, and (strangely) the beauty of death. Sending you and yours lots of love.

LCannon said...

sent this to uncle Bruce as I fully doubt that he blogs
As always, very BEAUTIFUL post.
I think the picture looks more awesome on your blog than it did on fb.

Beck said...

What a great son you have been! I believe in inspiring sunsets and double rainbows as signs from the other side. May you keep looking for those celestial signs as a reminder that your Mom is still with you and always will be!

Gay LDS Actor said...

Now that things have calmed down a bit, I just wanted to thank each and every one of you for your kind words and thoughts. They have meant a lot during this challenging time.