Looking back

Looking over my collection of videos and pictures of Mom, I found this short video made on my cell phone.

Mom and I are at the Country Buffet. It's a message to Bill, who had visited her in Asotin earlier in the week.

I shot this video on the Saturday before her first chemotherapy appointment. She and I were to drive up to Spokane the next day, and the day after that, Peg and I would take her to her first infusion session. She was anxious about the chemo, wondering what it would be like.

When I found the video, I was in Mom's Hospice House room with Peg and Bill. I showed it to both of them, and they immediately recognized it as a wonderful example of Mom's great character. If something mattered to one of her children, like a lost sock for example, it mattered to her. Even anticipating her own chemotherapy didn't obliterate her children's concerns from her mind.

What a great woman she was! Enjoy, and I hope you can hear the audio.

Sad News

Our beloved mother, Rita Eileen Williams, passed away last night at about 11:30. She was surrounded by her chidren and in the compassionate care of the Spokane Hospice House staff.

May she rest in peace.

Arrangements are being made for a rosary and funeral mass to be held at Holy Family Catholic Church in Clarkston, WA and for a celebration of Rita's life to be held at her home in Asotin, WA. The dates and times of these events have not yet been finalized, but we are hoping to be able to schedule them for a Saturday sometime in the near future to accommodate out-of-town family.

3 pm Saturday the 17th. The vigil continues.

View from the Serenity Room at the Hospice House

Three weeks ago today, Mom was admitted to Sacred Heart Medical Center with a fever and very low white blood cell count. One week ago today, she seemed to be rebounding, and the doctor was talking about a possible release date. Today, she continues to be in the near-death coma that began last Monday.

At several points this week, death has seemed imminent. Yesterday evening, the suspense seemed to reach a climax. Her breathing began to change again. The hospice workers said that signs suggested it might be in the next few hours or perhaps even minutes, although they always remind us that each individual is different.

Peg, Bill and I, sharing our grief, all spent the night in her hospice room. None of us wanted to be at Peg's home in bed when our dear mother drew her last breath.

Today, she inhales and exhales, and her rapid pulse continues to flutter under the fragile skin of her neck. The body can be tenacious of life, even after the essence, the individuality has all but evaporated.

Only very gradually, and in waves, I realize that she and I won't be making new memories, teaching me the meaning of the word "heartsick." My mother's amazing friendship will continue to sustain me, I know, but only as I treasure the memories we've made. Maybe consolation will come in telling stories of her, as Peg, Bill and I have been doing, especially last night at her bedside.

Right now, even though we know she isn't suffering, we all are wishing she could let go. "Go to those Pearly Gates, Rita. Jim is already in the van with the motor running and is waiting for you to go fishing. Go on now. We'll miss you tremendously, but we will be OK. Go on now."

She is getting the death she wanted--a dignified one. She hasn't endured a long internment in a nursing home. She was active and engaged with life up to the previous few weeks.

But these three weeks have been an eternity. That slow ole' specter death, he is a long, long time a-comin'.

My mom's HEART

Friday, May 16, 2008

She's all Heart
Yesterday I met the Medical Director of the Hospice House, Dr. Soffe. He seemed to be a very kind, compassionate man and I felt very comfortable with him. He wanted to know about our mom- not just about the "patient". I told him what an amazing woman, nurse and mother she has been. He was particularly interested in the part of her nursing career when she taught nursing at Lewis-Clark State College. He asked if he could have the medical student, who was with him, listen to her heart because it was "classic" atrial fibrillation. They both listened to her heart with their stethescopes. Dr. Soffe looked at me and said "See, your mother is still teaching students even now." What a kind thing to say! I asked if I could listen to my mom's heart. He took off his stethescope, handed it to me and placed the end on my mom's heart. I could hear and feel my mom's heart pounding in my head. Her appearance is changing as her body fades, but I was able to feel so close to our mom through this kindness. Everyone who met our mother knew what an amazing heart she has- I have been fortunate enough to not only feel it all of my life, but hear it as well.
Posted by Peg

Mom's heart

The posting about "my Mom's heart" was written by Peg, not Bill.

Holding vigil

My sister, brother and I are taking turns holding vigil. Sometimes we're all here, and sometimes just one or two. We have been taking turns spending the night.

The night before last, which was Peg's night, my mother began having tremors. Peg called Bill and me, who were asleep at her house, thinking that Mom was about to pass away, so we drove over to the Hospice House to join her, so she wouldn't have to be alone. By the time we got there--this was at 3 am--the medications administered by the Hospice House staff had calmed Mom's tremors. Her breathing was still very labored, and there were long spells of 30-50 seconds when she didn't inhale (apnea), but she continued to hang on.

After a few hours, Peg went back to her house to try to sleep, while Bill and I did the best we could to rest while staying with Mom.

Last night, Bill stayed. Mom's breathing has become more regular and a lot more shallow. The breaths are not as loud as they have been for the past two days. This is a mixed blessing, because holding vigil while Mom's inhalations were so noisy was so, so sad that it made us almost crazy. Now that her inhalations are quieter, it is easier to believe that she is passing on peacefully. To be blunt, it is now easier to conceive of the process of dying as a spiritual transition, while yesterday, death seemed to be a cruel, tortuous mechanical failure.

From one perspective, the perspective of these past three weeks, my mother is not passing away quickly, but from the overview, as my Aunt Rose Van Dyk reminded me on the phone yesterday, Mom has been able to participate actively in life nearly up to the end. In just February, Mom, Peg, I, she and Mom's brother Uncle Adrian were all in Kaui'i, Hawaii, and Mom was pretty much keeping up with her daughters, doing everything that we did.

I think that's pretty much the ending Mom has hoped for herself: live actively, and then stop rather suddenly. She has made for herself a good, good life, I believe.

Such a strong body . . .

. . . that one breath very belatedly follows another.

I know that she is in no discomfort, but

As she lays dying . . .

Yesterday morning Mom was transported to Hospice House of Spokane to receive comfort care during her final hours or days.

Last night, Peg stayed with her and found it to be a very sad experience, for Mom, while still alive, has been unconscious since yesterday morning and is clearly in her final stages of life.

Bill and I joined Peg in the vigil at about 3 this morning because signs suggested that the end was near. But that ole' body that she took such good care of doesn't seem to want to finally wind down, in spite of herself.

Bill, Peg and I are each handling our mom's death in our own ways, but we're continuing to be supportive of one another. Living through this sad, sad time with them as my companions has given me a new level of admiration and love for each of them. Bill's sense of humor has continued to help relieve us of some stress, even as he struggles mightily with his own grief. Peg's wonderful sensitivity and understanding, coupled with her admirable professional expertise from years as a social worker make her the best resource a sister could possibly hope for in such a situation.

Mom has received many kindnesses from her other relatives and friends over these difficult two-and-a-half weeks--visits from Jim's sons and their families, gifts like a beautiful quilt made by a long-time friend and neighbor, and kind assistance with things like collecting the mail. There have been too many to mention.

The vigil continues, sadly, but will soon, we expect, come to an end.

Love to all on Rita's behalf.

On her way

It's Tuesday morning. I spent the night at the hospital, as Bill did the night before and Peg the night before that.

In the mornings, she seems a bit more responsive, and we've been able to exchange "I love yous."

Just now, as I was typing, one of the nurses, Debbie, came in to check on mom as her shift waa beginning. She asked me how Mom was doing. I told her about our exchanges. Debbie agreed, "Yeah, she's still here. She's all here." I responded, "Yeah, and mom is probably thinking, 'Damn!" That made Mom smile.

The Hospice Staff is here completing paperwork for the transfer, which should happen any minute.

Winding down slowly

Mom has been less and less responsive as the day has worn on, and her breathing has been more and more erratic. One characteristic of the process of dying is apnea, pauses in breathing that can last 30 seconds or more. These pauses don't necessarily mean that her breathing is about to stop. Nevertheless, it's distressing to hear it.

She is being very sensitively cared for and is medicated for pain. Of course, that may have something to do with the non-responsiveness. It's a difficult balance to strike between pain management and over-medication.

Peg talks with her about how she's just about to be joining Jim and that they're going fishing together again. Peg says she detects a slight smile when she says that. I said to her that I was going to miss her very, very much, and her forehead wrinkled. So at some level, she's still with us, even though her body is failing.

Tomorrow morning, she will be transported to Hospice House in Spokane.

Sorry not to be more informative, but it has been long day. What a long, strange trip it's been!

Winding down slowly

Mom has been less and less responsive as the day has worn on, and her breathing has been more and more erratic. One characteristic of the

Why won't God let me go?

Mom has been asking this question of everyone, nurses, ministers, her kids; all say, "Well, I guess God must not be ready."

"He's stubborn," she says.

"Well, you are, too, Mom," we say back.

From the way she seems today, that stubborn ole' God is relenting.

Bill, who spent the night here in her room at the hospital, said that she slept peacefully, but when she woke up, she seemed to have a fever, her breathing was erratic, and she seemed to be delirious. He texted Peg and me, who were at her house having morning coffee and getting ready to come to the hospital anyway. We got here quickly and saw that

She is definitely weaker today. Hospice organization is sizing up her status to be tranported to the Hospice House.

A musical thanatologist came with her harp and played very soothingly for about a half hour. We warned her not to get confused when the harp music began. It's not angels at the pearly gates.

The fire may be winding down, but there are still some good hot embers

I know everyone is worried about our dear, lovely Rita. She has been very weak. "I just feel so energy-less," she just said to me.

At the same time, she still has that spark of humor that has made her so beloved by us all. When the nurses asked her what she wanted for dinner, she said, "Bud Light."

I didn't even know she liked Bud Light.

Since the level of care being given to her has changed, just today at about noon, they moved her to a different type of room, still on the same floor, but, oh, SO much more comfortable for us.

The previous room was a single hospital room with a lovely big window looking west over Spokane. So it was definitely nice. But it was very crowded. When Peg, Bill and I were all there, two of us had to cram up against the window while one stood at the foot of the bed or on a chair on the other side. And the chairs were wood with no padding.

I didn't really pay that much attention to the situation; it wasn't that important. But now we're in a room meant to include family. There are two soft recliner-like chairs that evidently convert into sleeping surfaces, there's a small table with two chairs for eating at, and a small refrigerator and microwave. Now that the surroundings are so much more comfortable, I am realizing why we were each getting pretty tired as we took a turn at staying with Mom.

It has been a LONG two weeks.

Especially for her.

But even after all this, my brave, wonderful mother has a weak smile for us when we come in the door and manages to make the nurses laugh.

Don't tell anyone, but we're smuggling in some beer a little later. :-)

Final wishes

Yesterday evening, Mom was alert, chipper, and feeling very well. Peg and Bill were able to enjoy a nice evening visit (I was still in Pullman), and her doctor was talking about a release date.

Overnight, her condition changed dramatically.

This morning, when the pulmonary therapist came in to administer a treatment, she heard a lot of "crackling" in Mom's lungs, which is a sign of fluid build up. So the "Rapid Response" team was called in to get Mom stabilized. The members of this team are exceptionally skilled in their areas of expertise. Their efforts were successful.

Peg was called, of course, and she called me. She and Bill, who has been staying here in Spokane ever since last weekend, came to the hospital, and I drove up from Pullman. All four of us conferred as a group. Mom has been saying to many of us over these past two weeks that she is ready to die. She has said this so often, and to so many of us at various points, that we, her children, pursued with her a serious, end-of-life wishes conversation. Although she has been very weak all day, she has been alert and clear-headed, so we felt confident about having this discussion today.

We very carefully and thoroughly discussed what exactly Mom wanted to do at this point. We identified the options for her. These options roughly fall into categories of
• "do not resuscitate if pulse and/or breathing stop";
• do everything medically possible
• do some things but not others (do antibiotics but no artificial feeding, for example)
• do only what will keep her comfortable

After about two hours of talking among ourselves (Bill, Peg, Mom and me), going through the hospital's forms, and getting clarifications from the various medical specialists, Mom has decided to accept only comfort-level treatment and there is a "do not resuscitate" order if her pulse/breathing stops.

Over the course of the afternoon, several specialists who have been involved with her care have come in to talk with her and us. She has confirmed this decision with all of them.

She will continue to accept IV infusions that keep the fluid levels in balance, and she is accepting the pulmonary therapy, a broncho-dialator. She will accept IV antibiotics to address an infection. But that's it. No new medicines, no new treatments, no aggressive measures.

There is a wonderful hospice program in Spokane with a just-recently-built 12-bed facility, Hospice House. She has been accepted to be taken there when a bed becomes available. That will probably be Monday or so.

Peg was particularly comforted to know that a former colleague--a nurse whom Peg admires, respects enormously--is the director of nursing for this hospice organization. Mom could not be going into better hands.

It is very sad news, I know, for all of us who love her so much that we will soon be saying goodbye to this wonderful, wonderful woman. Peg, Bill and I are so grateful to have been graced by such a mother. She has truly taught us what love is. As one expression of our gratitude for her love and motherly care, we want to support her desire, which she has made clear to us many, many times over the years, for a dignified death, not a protracted feeble helplessness. Sad as I, my brother and my sister are right now, we know this is what she wants for herself.

Thank you to everyone for your thoughts and prayers.

Finally some good news! Another update from Bill

Both Peggy and I were in Mom's hospital room yesterday when the cardiologist visited to tell her some good news.

The cardiologist had been called in to help a couple of days ago because Mom had been retaining fluids that had moved into her lungs and had put stress on her heart.

The medical staff has been taking aggressive action to get excess fluids out. Over the last few days, Rita has excreted over 7 pounds--that's more than about a gallon, folks!-of excess fluids.

Rita is getting back into "fighting shape" as a result. Her chest x-rays look clearer, her oxygen levels are greatly improved and near normal, and her blood counts (hemocrete and hemoglobin) are also greatly improved.

The cardiologist actually told Rita he was signing off the lead role he had assumed when the fluid build-up was taxing her heart so much.


Her primary oncology physician has said that Rita will stay in the hosptial through probably Tuesday and then be dismissed to a rehad faciltiy or other nursing location.

This one is from Bill

Sunday was Bloomsday. Over the last several years, I have looked forward to this event as a great time. I’ve also looked forward to it with a bit of anxiety, knowing that I would need to be in shape to try to stay up with my mother.

On Monday, we checked the race statistics. According to their records, Mom has done Bloomsday 27 times. She has walked with many family, friends, kids and grandkids, and she has made a lot more friends along the way.

Mom could have had more fun on most of the walks, but she did Bloomsday just like she has done her life-- not as a race, being concerned with where she placed, but more as a journey to connect with family and friends. To be part of a parade, not to be in front, but just to be with it.

On Sunday, she had visitors from her husband’s side of the family, the Williams family. I haven’t spent much time with Ron, Ingrid and their kids in the recent past, but I got to be there for some time while they visited Mom. They had many fun stories and memories of spending time with Mom and Jim at their Asotin home; it was great to hear about all those good times.

Grandma Rita and Grandpa Jim were legendary for their welcoming, kind treatment of kids and grandkids at their Asotin home. It was a tradition every summer to take the kids across the street to swim in the Snake River, to fish and to have picnics.

Grandma never let the fact that the "fish weren't biting" dampen a kid’s joy of bringing in the big one.

One such summer day when grandson Chris was disappointed at catching nothing as he, Mom and Jim fished in the river across from the house, Grandma Rita snuck back across the street to the house and pulled one of Jim’s fish from their freezer. While little Chris wasn't looking, she slipped it on his fishing line, threw it back in the water, and then yelled with joy, "fish on, fish on!"

Even a young kid knows that you don't pull fish from the Snake River frozen, gutted and all ready for the pan. But it was fun, and the memory of Mom’s kind joke still lives. Just like the Bloomsday race, it wasn't about the race or the finish, it was about the experience.

Hearing this fish tale recounted again with Rita in her hospital bed brought laughter from everyone in the room. And there was a gleam in mom's eye, knowing that she was able to impact us in those ways throughout her life.

From a medical standpoint, the last few days have been tough. Fluid has started to build up in her lungs, which is somewhat common during chemotherapy. Mom’s heart is not pumping as rhythmically as it should, while the demands on her heart are greater than normal for an 88-year person’s heart.

She remains in the hospital. Her blood statistics, which were the medical issue that first brought her in, are in decent shape. The priority now is to deal with the fluid build-up and retention.

She is noticeably weaker physically as she fights the fluid retention.

Her spirits are guarded. When family and friends join, she smiles and jokes with what energy she has, but she is easily tired. Her room is well decorated with cards, scrapbook pages, and mementoes and memories from family and friends. And she continues to harass and hassle family and friends with the glow and smiles she is famous for, even though the glow is dimmer and the smile is not quite as big.

Rita sends her thanks and love to all those who have reached out, and she gratefully accepts your faith and prayers as she walks a tough section of life’s "Bloomsday."

Two steps forward, one back.

The Bloomsday weekend has come and gone. This was one of the few Bloomsdays in the past 28 years that Mom has had to miss. But Bill and I carried her banner. Bill even managed to get a t-shirt for her. She’s hiding behind it in this photo.

Over the weekend, her son-in-law and daughter-in-law Ron and Ingrid Williams, along with her grandson Chris and his bride visited Mom. Surprisingly, they managed to get hotel rooms even though the town was full of Bloomsday participants and volunteers. They visited with Mom Saturday night and watched the live coverage of the race’s start and finish on Sunday.

Since Bill and I were not featured runners enjoying live television coverage, we kept Mom up-to-date on our progress on the Bloomsday route by calling Ron on his cell phone and having him relay the information to her. Her hearing isn’t working well enough nowadays to get on the regular telephone, much less those silly cellphones.

I must say, though, that this past week has converted me from cellphone-resistance to cellphone enthusiasm. I’m sure that Peg and Bill would agree that we all would have gone abso-freaking-lutely insane if we hadn’t been able to speak with one another at a moment’s notice.

Note: the following may fall into the category of too much information. If the details of medical treatment don’t sit well with you, you can skip this paragraph. About Mom’s physical condition: the weekend has her continuing to improve. Her blood count and blood oxygen levels have gradually gotten back to near normal, her temp frequently has gone below 100, and her infection has almost cleared up. She has been retaining water, though. The heart and the lungs have been working extra hard as a result. The diuretic they’ve administered really kicked in yesterday, though. She’s probably lucky that she’s on a catheter. The water retention has also included pulmonary edema, so they’re tweaking the treatment plan for that, too.

Although she has definitely improved since she was admitted, it has been a case of two steps forward, one step back.

Recently, since the fever has gone down so much, she hasn’t been delirious, but she has been very sleepy. I stayed with her for three hours Sunday afternoon; she was awake for only 10 minutes. I packed a lot of news into that little bit of time, let me tell you, before she told me that she wanted to go back to sleep. Bill has been staying with her at times over the weekend and then all yesterday and today. When he told her that he had to go back to Wenatchee and asked whether Peg or I should come back in and hang out with her, she said, “Please, no!” She’s really tired and just wants to be left alone to sleep.

She may not realize that we hang around as much for our own peace of mind as for her wellbeing. But I guess it’s time to stop hovering and let her be taken care of by her wonderful nurses, nursing assistants and docs. So thanks Evelyn, Patti, Sandy, Linda, Amanda, all the other nurses and aides whose names I can’t remember, and thanks Dr. Rosales. We're counting on you!

When Rita Smiles . . .

How happy I was this morning when I entered the hospital room and saw Mom smile!  She actually seemed somewhat cheerful!  It seems as if her personality is normalizing as her health gets better.  She sat up for both breakfast and lunch today, feeding herself well and eating better than I've seen so far.  That's not to say, though, that she is happy about this enfeebled state she's in.  

Mom has always been so engaged with people and her surroundings.  She seems unwilling to become old, a senior whose feeble physical condition and waning senses force her into observing more than participating in life's activities.  

I suppose I should celebrate Mom's rebelliousness against the inevitability of aging.  Dylan Thomas wrote his magnificent poem "Do Not Go Gentle Into That Good Night" at his father's deathbed, begging him to do something other than sink peacefully into the eternal sleep.   He would be glad if he could see my mom.  

  

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height

Curse, bless me now with your fierce tears, I pray

Do not go gentle into that good night

Rage, rage against the dying of the light.

  

 

Juiced up!

They pumped Mom full of stuff yesterday.  At one point, they had two IV pumps going at the same time.  She got antibiotics, two units of blood, and potassium.  Her face has filled back out; it was looking gaunt for a while. 

For those interested in her vitals: her temperature this afternoon at 4:00 is 100, blood oxygen is 91%, blood pressure 117/61.   Her white blood count this morning was .7, up from .3 yesterday.  The goal is 1.0.  So she's definitely not as sick as she was. 

Sometimes the better you feel, the harder it is to be sick.  I asked her if she was getting bored.  She said, "Yes."  We always said that Mom was not likely to be a happy camper as a patient, when and if she ever got really sick.  And that is indeed the way it has turned out.  Nurses generally make unwilling patients, though, don't they?

This morning when her doctor came around, she told him that she was mad at him for making her feel better.  He took it well.  I think he even was glad that she was getting sassy with him.  

Although she mainly just briefly asks and answers question, she is interacting more lucidly now that her vitals are starting to pick up again.   She's just still too weak for conversation.  

Sometimes when you're sick, life doesn't seem worth living

I've been with Mom in Spokane's Sacred Heart Medical Center since Wednesday morning. 

When I got here Wednesday, she seemed to be getting on top of the infection and even was able to sit up and feed herself.  Then Wednesday night, her fever spiked again, and it was like starting over. She is weak, shaky and somewhat out of it, although that comes and goes depending, Peg thinks, on the fever.

On Wednesday, her brother Adrian and sister-in-law Rose came to Spokane from Lewiston, where they have been visiting for the past week.  Adrian and Rita had intended to have a nice long visit together, but this medical crisis deep-sixed those plans.  They're having to go back to their home in California with the image of Mom at her sickest in their minds.  Distressing for them, I know.

Peg and I have been tag teaming so that Mom has one of us by her most of the time.  The nursing staff and other caregivers have been wonderful, but both Peg and I want to be around to make sure that she gets water or coffee when she wants it, that she eats as much as she is willing to eat, and that she is kept entertained or at least distracted.  

Because she has been out of it as much as she has, they did an MRI yesterday, just to ensure that the CAT scan on Saturday hadn't misled them about the state of her brain. Thankfully, it showed no problems.

Her spirits are low--she has NEVER been this sick physically in her life--and she is saying, "what's the use?" But we know that once her white blood cell count improves, she will feel more positive. We hope so, at least. Poor thing.

White blood cell count was at .1; this morning it is at .3; it needs to get to 1.0.     

At least we're going in the right direction. We who are not sick as dogs, as she is, cling to this hope.