Wednesday, September 25, 2013


This was the week I was supposed to come visit Mom.

Before Mom's fall and illness happened, I had planned to make this trip.  Jonah would be (and is) working this week, so I was going to fly up to Utah and rent and car and stay with the same friend Jonah and I stayed with when Mom was dying.

I was going to take her to see Something's Afoot at Pioneer Theatre Company as well as go see a movie, even though I knew she wouldn't probably remember either after we'd seen them.  I was also going to take her out to eat at one of our favorite restaurants.  And of course, I was going to visit her every day at her assisted living residence and maybe play a game with her if she was up to it.

Instead I am at home missing her.

It's funny, I know her dying now is a blessing compared with having to watch her slowly waste away over the course of several years.  When I think of where Mom was six years ago (or even one year ago), I see how fast things can change.  Even at this exact time last year, I wouldn't have thought Mom would be in assisted living so soon, and her death was far from my mind.  I always imagined Mom would live a long, long time, and I had prepared for how difficult it might be to watch her live so long with a body and mind that could no longer do what they once could.  That's where I thought we'd end up.

So yes, it is a blessing that Mom died before we had to watch her completely waste away and, more so, it is a blessing that she was still relatively independent and active and, above all, happy before she passed.

But this felt so fast.  The Saturday before her fall, she was doing really well under the circumstances.  Yes, her mind was fractured, but she was doing well and was talking and was happy.  Even immediately after the fall, the prognosis was good.  She was going to go to rehab and be back at her home at the assisted living within a couple of weeks, probably.

Then she just took a turn for the worst.  It was like dominoes.  The fall caused tissue damage; the tissue damage caused an infection; the infection caused renal failure; the renal failure and fall caused the muscle in her leg to die; and all of this meant her quality of life would not be very good; and that caused us to make the choice to let her go.

And now she's gone.

It was right to let her go.  We know it's what she would have wanted, and all four of us kids in conjunction with the doctors agreed it was the right way to go.

But no matter how prepared you think you are, it's never easy.

Often I'm doing well.  Often I feel like I'm dealing well with it.

Other days I'm deeply sad and just miss my mom.

Time will heal all wounds.  Dad's been gone for 21 years, and I rarely get sad about his passing the way I once did.  I know the same will happen with day.

It's natural to mourn; it's natural to grieve.  I know that.

And in many ways, we and Mom are better off.

But I miss my mom.  I miss her presence.  I miss talking to her even if our conversation was almost exactly the same every day.  I miss her warmth.  I miss hugging her and kissing her.  I miss her stories and childlike qualities.

People have been so kind and supportive.  People have said such nice things.  I've received cards, Facebook messages, blog comments, and in-person remarks that have really buoyed my spirits.  And I am thankful.  It really does help.

Among my favorite comments have been what a great son I have been, not because they flatter me, but because they only testify that Mom and Dad must have raised me well for people to think that of me.  Someone said the other day, "You and your siblings have done such a great job in how you've cared for your mom."  I replied, "That only goes to show what a great mother she was."

And she was.

Tuesday, September 17, 2013

Funeral and Burial

It's strange how the absence of just one person can make the world seem a much emptier place.

I miss Mom.  She's in a better place and she's better off, but I miss her.  I miss her presence.  I miss her voice.

It's funny, when I was her primary caretaker, I admit there were moments that I kind of wished she would pass.  That's hard for me to admit, but I understand it's a common feeling for caretakers to have.  Her mental decline was just hard to watch, and caring for her could be very stressful at times.

I never thought Mom would go this quickly.  She had the kind of personality and energy where I just thought she'd hang around for years no matter how badly her dementia robbed her of her faculties, independence, and abilities.

In truth, it's a great blessing that she went out the way she did.  Two weeks ago, she was doing well.  Although her mind was continuing to get progressively worse, she still knew all of us and was still able to learn new information.  She was still independent and active.  And most of all, she was happy.

It was only the last week that was difficult, and even then, I never felt she was suffering or in much pain, and I still felt she was very much aware of those who around her and who loved her.  What more can you ask for?

She lived a great life and her influence will be forever felt by those she touched.  I'm glad I don't have to watch a slow, painful decline in both mental and physical health.

But I miss her.

Friday morning we went to the funeral home to dress Mom.  Initially, I didn't want to dress her.  I wasn't sure how it would make me feel.  But I had changed my mind after talking with a friend who helped dress her grandmother.  It felt like one final act of service for my mom.

My aunt and cousin had come to help do Mom's makeup.  I had asked them to help because when they did my aunt's mother's makeup when she died, it looked terrific.

It turned out the funeral home had really done a great job with Mom.  Both her hair and makeup looked great, and she truly looked like she was sleeping.  She certainly looked a great deal better than she did when she died.  I had sent the funeral home pictures of Mom with her hair done up, and they really did a good job.  Jonah made a couple of alterations that really made her look like Mom.  My cousin only put some of Mom's lipstick on her, and it really turned out great.  It made Mom look like Mom on her best day.

Dressing Mom was both spiritual and...well, weird.  We put Mom's temple clothes on her.  The mortician was LDS so he knew how she should look.  Mom was very cold.  She'd obviously been in refrigeration.  Parts of her body that had scars from surgery and from her fall had been wrapped with plastic.  Her feet were too swollen to get her temple booties on, so we just laid them beside her feet.  

Mom's dress was of a fabric with not much give, and it was a little tight, so we just cut it down the back so it could breathe.  Flipping her from side to side to get the dress and accessories on and trying to get her stiff fingers through her sleeves was an odd experience, but also gratifying in a way.  By the time she was all dressed and made up, she really looked beautiful.

The mortician said his favorite part of his job was taking people that looked terrible upon death and making them look the way they looked in life.

My cousin's friend had died of cancer the same week Mom died (and in fact, the funeral home was handling her funeral as well) and both funerals were at the same time, so she was feeling very conflicted, although it turns out she went to Mom's.

After the funeral home, Jonah and I went to lunch (eating at the same table Mom and I often ate at, and it made me sad to know there would never be another lunch with her again in this life) and shopping to get him some nicer clothes to wear for the viewing and funeral.  Then we went back to the apartment we were staying at to get dressed.

While out shopping, I received a call from the bishop of Mom's old ward (my old ward as well) informing me that both he and the stake presidency had a problem with the song Jonah was to sing at the funeral.  It was "Embraceable You" by George Gershwin, and because a funeral takes place in the chapel, it must be according to Sacrament Meeting standards.  I guess they felt some of the lyrics to "Embraceable You" were too racy.

I was livid.  "Embraceable You" was one of Mom's favorite songs and also one I had sung with her as she lay dying.  I felt like it was an insult to Mom's memory, and felt that something lascivious and salacious was being attached to a song that was neither.  The bishop passed me on to an old family friend who is in the stake presidency.  He is a dear friend, and I don't think I have ever been angry at him in my life...except for at that moment.  I was mad and at that moment, if I had had the power to move the funeral elsewhere, I would have.

I ended up choosing "Smile" by Charlie Chaplin as its replacement (and that was approved), but I went to the viewing with a lot of anger in my heart, which was unfortunate since I had expected to feel peaceful and contemplative.

The viewing was nice.  Mom looked great.  We had the funeral home put her purse in with her.  In life (and especially as her dementia worsened), Mom was rarely without her purse, and we felt it fitting (and humorous) that she should take it to the grave.

Jonah and my sister-in-law made some flowers to go in the lid of Mom's casket.  They looked beautiful.  My brother-in-law had made a video presentation about Mom.  We had pictures of her, although I regretted that the picture of Jonah, Mom, and me at our commitment ceremony wasn't there due to the funeral home borrowing it for the obituary.

It was good to see old friends and relatives and visit with them.  Among my recollections at both viewings was one sister who talked about Mom being one of her favorite visiting teaching partners; one woman who's husband just died thanked me for a phone message I left for her (her daughter thanked me as well); Mom's childhood friend visiting; my old boss at a theater I used to work at seemed especially grief-stricken; another friend from the same theater made me feel better about the song situation.  Truth is, Mom wouldn't have cared that much.  She liked "Smile," too, and would have been happy to hear Jonah sing anything.  She certainly wouldn't have wanted me to carry a grudge about it.

I had no shame in introducing my partner to many of my former Mormon neighbors, and hardly any of them batted an eye.

 Jonah's Mom and sister-in-law had surprised us Friday night by coming up from Las Vegas.  I was so surprised and touched to see them.  We invited them to have dinner with us at my brother's and sister-in-law's house.

The viewing the next day was good, and we had to to wait a few minutes for my cousins to arrive.  My sister-in-law gave the family prayer, and it was quite nice.

Both of my sisters spoke as did I.  A family friend shared a retrospective of Mom's life.  I think the service was recorded by the funeral home, and if so, perhaps I'll publish my remarks in a future post.  Several people remarked on Mom's quiet service, and that is quite accurate.

I had seen my mom's former coworker (and former boss of mine) in the congregation and had hoped to talk with her, but she left before I got the chance, but she left a card and a plant for my siblings and me.

The weather was cool and rainy, but it didn't rain until after the graveside service.  I guess a marathon was going on on the same route as the funeral caravan, so that caused a bit of delay, but everything went smoothly and on time.

As we were at the graveside service, I couldn't help bu notice the trees showing the very first inklings of fall, and I thought that apropos that things were dying and changing from summer to autumn just as Mom made her departure.  It seemed metaphorically fitting as did the rain that started falling literally as soon as the service had ended.

We had a simple luncheon at the church, and my cousin played a really fitting song that seemed to relate to Mom.  After the luncheon was over, I said goodbye to my siblings, not sure when I'd see them again.  Mom felt like the glue that held us together, and I hope we will still get together even though she has passed.

I spent the rest of the time with Jonah, his mom and sister-in-law.  We took naps and then ate dinner at, coincidentally, the last place Jonah and I took Mom out to eat.

Sunday morning we went to a farmer's market and then to IKEA and then said goodbye to Jonah's mom and sister-in-law.  Then we ate, did some shopping, and then visited Mom's friend Harold at the assisted living facility.  He was so sad and lost.  He asked me to send him a photo of Mom.  I shall.  I also plan on calling him from time to time and will ask my siblings to check in on him if they feel the inkling to do so.

Jonah and I then visited Mom's grave again.  I had also visited it on Saturday after they had buried her, and it looked beautiful with the fresh flowers.  I'm not typically a grave visitor, but I somehow felt the need.  It was very peaceful.

Monday, Jonah and I headed home.  And now here I am trying to go back to normal without Mom.  It's going to take some time to adjust.

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.

Thursday, September 05, 2013

Goodbye, My Dear Mom

I am currently sitting in a hospice room watching my mother die. 

I did not think it would come this soon, but it has.

On Saturday at noon I called Mom like I always do.  She was doing great.  She was happy, lively, and preoccupied with her not-boyfriend, Harold; still her regular dementia-addled self, but doing well.

Sunday morning I had the dream I wrote about here and was woken up from it by my brother, who had called to tell me about Mom's fall.  At that point, her prognosis was good.  She would need physical therapy, but she could return back to her home at the assisted living facility eventually.

What a difference the past four days have made and how quickly Mom has declined.

Monday we were told that Mom had severe muscle degeneration which was exacerbated by the fall and that some muscle tissue had gotten in her blood stream and caused an infection.  The resulting infection spread very quickly and caused Mom's kidneys to shut down, meaning she would need dialysis for the rest of her life, something that typically is counterproductive and not recommended for patients who are in the stage of dementia Mom is.

My siblings and I have known Mom's wishes for some time now and know she would not want to have her life prolonged if it meant further deterioration of her quality of life.  Nor do we particularly want to continue to watch Mom's physical and mental health decline.  All of us seemed ready to let her go if needs be.

Jonah was surprised at how quickly we seemed to arrive at this decision and questioned whether we were doing everything we could for Mom and whether we were "giving up" too easily.  I also know because of the recent death of Jonah's father, he is still having a hard time and regrets the lost time that he could have had with his dad.  Jonah also feels very sad for Mom's grandchildren who will never really get a chance to know her.

I must admit there was a part of me who questioned if what we were doing was really to alleviate Mom's suffering or our own.  Were we really trying to help her or ease our own pain?  I confess the thought of watching Mom slowly lose her independence, mind, and ability to feed, dress, bathe, or toilet herself as well as lose her ability to communicate and possibly not remember us at all does not thrill me and, yes, I think it would be better for her to go now while she still has what faculties she has and what independence and dignity she has left rather than die a long and slow death.

Then after her renal failure occurred, we were told that the fluid build up in Mom's body had caused pressure in her leg as well as put liquid in her lungs.  The muscle in her leg had died and her leg would have to be amputated if we kept her alive.  She was having trouble breathing.  She was having balance and walking issues and was confused, in pain, and miserable.  Dialysis three times a week for four hours at a time and a missing limb and an inability to walk is challenging enough for an otherwise healthy individual.  For someone with dementia it is confusing and causes great agitation and often makes the dementia worse.  Mom would not want to live that way.  She will be miserable and confused.  We don't want her to live that way.

All of us were in completely unified agreement: we chose to forego dialysis and amputation.  We chose to let Mom die comfortably and with dignity.  The three doctors who have been caring for her all concur that this is a wise decision, and I know all four of Mom's kids feel at peace with this decision.

My mom has been my greatest champion, supporter, and friend during my whole life.  Losing her is sad,  I have a hard time imagining a life without her and her influence (although, of course, her influence will always be with me).  I will miss her more than words can express.

But this is the right thing to do for her.  I know it.

I am not perfect, but I have been the best son I know how to be to my mother.  I have no regrets in either my relationship with her or in how I've treated her and cared for her.  I know she knows how much I love her, and I know how much she loves me.  She has been the best mother a guy could ask for, and it is now time to let her go.

We are amazed at how quickly this turn of events occurred; we all thought Mom would live much longer than it turns out she will.  But she has left us a great legacy in what she has taught us and how she treated us, and hopefully we are emulating the example she and my dad left for us.

Mom was also very generous with her money.  If one of us needed help paying for school or a temporary loan or a financial lift, she would help without hesitation, but still taught us to earn our own keep and be financially responsible.  I think she would be delighted to know that the money that was originally to go towards her long-term care will be passed on to us, as she and Dad originally intended.

I had planned on coming to Utah in two weeks to visit Mom, but knowing she would die soon, Jonah and I made plans to come to Utah yesterday.  Fortuitously, Jonah already had Thursday through Sunday off, and both of our jobs are on-call positions, and both of our bosses have been extremely understanding and accommodating, so we are both on indefinite leave until this all plays out.

As I stood during a quiet moment at work Wednesday evening, I thought about what I might wish to say at Mom's funeral.  I am still mulling it over, but I have some ideas, and perhaps I'll share them another time.

It was truly weird driving to Utah yesterday knowing that when I return home, Mom will be gone.

I was really happy she was still coherent enough to recognize me, and she was very happy to see me.  Actually, her dementia made her happy to see me three separate times because each time was the "first" time.

Harold, Mom's pseudo-boyfriend, called me this morning.  He's very sad, and we feel very sad for him that he is losing his friend.  He brightened Mom's life at the assisted living facility, and she, his.  I told him if he could arrange it with his family, he was more than welcome to visit Mom.  He was surprised and touched by this offer.  And he took me up on it.  My siblings informed me he visited a few hours before Jonah and I got there.  He had dressed up and played his guitar for Mom, and she brightened up when he was there.  They also gave each other some kisses.  I was glad they were able to see one another.  They probably won't get another chance.

Mom is out of it, but still has moments of coherency.  She could die today or within the week.  The practical part of me is already thinking about things like funeral arrangements and obituaries.  I am in a recliner.  On my left is my younger sister, who is snoring.  On my right is my dear mother, who is also snoring, but more shallowly.  Jonah is probably having a slightly more restful night at a friend's, although he is having a harder time dealing with this than I seem to be.  I am glad to be with Mom and I feel very at peace with how things are playing out.

I had told my family and the doctors not to keep her alive on my account as I made my voyage back to Utah, but I am glad she is still alive for me to see her one last time before she passes.  She was very glad to see me and I, her.  I do not know when she will go, but it won't be too much longer.  I am reminded of when Mom did the very same thing with her own mother.

I will miss Mom.  Anyone who reads this blog knows how much I adore her.  But while we will be sad to see her go, it is also a great blessing that she will be released from the tribulations of mortality.  I'm glad she will be leaving with as much of her faculties and independence as she had before the fall.  I also imagine Dad, who has been away from her for 21 years, will be delighted to be reunited with her again.  And Mom will be glad to be with him again as well as her parents and brother and in-laws and all those loved ones who have gone before.  I am grateful for the time I have had with her and for the influence she has had on my life, and I am equally excited for her to have her next adventure. 

Death takes us all eventually, so I take comfort in the fact that Mom and I will only be separated for a season, and then we will be together again one day along with our other loved ones.

I'm just grateful for Mom and that I can be with her both now and forever.

Wednesday, September 04, 2013

Thanks, Nameless Security Guard

Actually he does have a name.  He must.  I just don't know what it is.

Every day I work to work I park in the employee parking lot.  There is always a security guard there to check your ID.  They rotate between 3 or 4 of them, so there is usually a different guard there every day.  My favorite is this guy, and I'll tell you why; the other three guards often seem bored and uninterested.  I don't blame them; it's not the most fascinating job in the world sitting in a parking attendant booth and waving people in.

But this guy is different.  Every time I show my badge, he says "Thank you."  Every time.  But it's not just what he says, it's how he says it.  I can tell he's sincere; that he genuinely means it.  It's an example to me of a guy taking what is probably a mundane job and making the most of it.

And he brightens my day.  And probably doesn't even know it.  It just proves to me that doing your job and doing it well and with a good attitude can really make a positive difference.

Tuesday, September 03, 2013

Don't Pull Me Down, Bro!

I like my job.  I do.  But it's not without it's challenges.  One is that our manager is not very strong.  This creates an environment where many workers just kind of do their own thing.  While theoretically there is a uniform way of doing things, in practice, many employees just do things their own way.  There's no sense of discipline.

Some workers work really hard and do their jobs very well.  Others slack off and put forth as little effort as possible.  There seem to be no consequences for doing so.

The other day I was talking to one of the "slackers" and another worker who is a good worker.  I mentioned to the good worker that I liked the job and was talking about some of the positive aspects of it.  The slacker said, "Let's see if you feel that way in a year."

I refuse.  I refuse to let the cynics and pessimists pull me down.  I will continue to do the best job I am capable of doing and have the best attitude I can.  If I can, I want to raise people up rather than let others drag me down.  If others want to slack off and complain, that's their prerogative; but that doesn't mean I have to be that way.

Attitude is everything.  It is sometimes frustrating to work with others who don't pull their weight or who hate their job, but that doesn't mean I have to be like them.  I just refuse to do so.

There, I've said it!

It's like Jonah often says, "You can either choose to wallow in the mud or you can get up, grab some water, and wash yourself off."

Monday, September 02, 2013

Of Dreams And Dementia

I had an odd dream yesterday morning.  I was outside my childhood home, the one we just sold a few months ago.  The lawn was not well kept and the garbage cans were out for collection, but not in the place where my family normally put them.

Taped to one of the garbage cans was a note from our nosy neighbors telling the people that now lived in Mom's old house that they needed to do a better job maintaining their yard.  I tore the note off the can because I was angry because this is the sort of thing my neighbor might have done when we lived there, and I always found his obtrusiveness annoying.

Just as I tore the note off the can, the current owner of the house came out.  I've never met him in a real life, so I don't know what he really looks like, but in my dream he was kind of stocky.  Not wanting him to think I had taken something from his property, I handed him the note and told him I had found it nearby and it must be his.  I also extended my hand and told him who I was and that I used to live there.  He shook my hand reluctantly, as if he thought I was some kind of stalker.  Not wanting to bother him further, I said goodbye and headed next door to our former neighbors house.

I knocked on their door and could hear my sister-in-law laughing inside, but no one answered.  At this moment a phone call from my brother woke me up from my dream.

It was about 6:00 a.m. so I knew it must be an emergency of some sort.  My brother rarely calls me and he doesn't call me that early.  I knew it was probably about Mom.

Sure enough, Mom had been taken to the hospital after one of the caregivers at the assisted living facility found her on the floor on her knees in a crouched position resting on her elbows.  She was sweating profusely, was very disoriented, and had wet herself.  Mom had last been checked at 4:00 am and was fine.  They check the residents every two hours.  Some time between 4 and 6 a.m. Mom had fallen, probably on her way to the bathroom.

Her blood sugar was through the roof.  At the hospital it was determined that she had a skin infection, which may explain the rise in blood sugar and was also diagnosed with rhabdomyolysis, a breakdown of muscle tissue that can get in the blood stream and cause kidney damage.  Mom complained of knee soreness (presumably from her fall).

Anyway, she's still in the hospital, but her prognosis is good and she is expected to be released to the assisted living facility in a couple of days.

I must confess that my first thought (before I knew how serious or not serious her condition was) was "If it's her time to go, I hope she goes and goes quickly."  I had thought it strange that I was just dreaming about her house when I got the call and wondered if it was a sign of some sort.

The truth is that Mom's condition will only continue to deteriorate while she's living, and I am not exactly thrilled to watch that happen.  I am not eager to see the day when she forgets who I am or can no longer control her bowels or feed herself or communicate.  I'd rather remember my mom as happy, functioning, and independent, which she still is, than see her become even more of a shell of her former self.

Whenever it is Mom's time, I feel ready.  I can honestly say that I have no regrets when it comes to Mom.  I have cared for her the best way I know how and I know she knows how much I love her, and I feel the same from her.  I do not feel I could have done any more regarding Mom's care than I have done.  Our last conversation before I received the phone call from my brother was a good one.  She was happy.

I have since talked to her.  She seems a bit out of it, but still seems fairly coherent.  She is eager to go back to her home at the assisted living facility.  It evidently isn't her time right now, and as I have long suspected, she will likely live a while.

I have spoken to Mom every day but three since she went into the assisted living facility in January.  I have watched her go from hating the place she lives to really enjoying it and making friends.

The dream about Mom's house made me remember again how unfair it sometimes seems that Mom's destined path is one of a loss of independence and mental faculties.  I wish she could have lived in her own home on her own terms for the rest of her life.  Obviously that wasn't meant to be, and both she and her children are better off now that she is in the assisted living facility.  We are less stressed and worried, and she is far healthier and seems happier in many ways.  But it is not what I would have wished for her nor is it what she would have wished for herself.  But what is, is, and we have all come to terms with that.  I only know that when it is Mom's time to go, whether it be tomorrow or 15 years from now, I am ready to let her go.  I am ready for her to be free of the shackles that mortality can bring and for her to be reunited with loved ones who have already passed, including my dad.

The other interesting thing about my dream was that I found out that the neighbor next door to Mom, who didn't answer his door in the dream and who also suffered from dementia in real life, had passed away on Friday (but I did not find this out until after I had had the dream).  I am sad for his widow, but I also know his deterioration has been hard on her.  Both of them have lived next to my mom (and dad) as long as my parents lived in that house.  While I don't necessarily feel we had a lot in common with them or their family, they were valued friends and neighbors whom I have know my entire life.  I left a phone message with the wife expressing my condolences.

I thought it interesting that the Lord would take one person suffering from this disease and leave another to continue experiencing it.  Such is the way of life, I suppose.

Anyway, this entry seems a bit rambling to me.  I'm not even sure what my point has been.  Hopefully you who read it will get something out of it.