Waiting

Tim_mary_0703

Last couple of days we've been camped out at my parents' house.  People are sleeping on couches or on the floor wherever they can.  My brother Tim (pictured above) has not left the house since he arrived; he wants to stay close to our mom.  His wife Kelly and two boys are flying out tonight which will be good. 

Yesterday I was pretty discouraged.  I managed to go for a run around 10:00 pm for an hour and when I got back I felt normal for the first time all day.  Unfortunately, everyone was asleep. 

It's hard to be here, but its also hard to be away.  We're all just waiting and there's not much we can do at this stage.  Nurses from the hospice are here around the clock and that's been much appreciated.  They are doing the best they can to keep my mother comfortable.  But she's not responding much anymore.  I think she can still hear us and once in a while she will say something, but mostly she is resting. 

Her breathing has become a noisy death rattle  due to retained secretions in the upper respitory area.  Her breathing is also irregular with deep breaths with long pauses, known as Cheyne-Stokes respiration.  I think she is close to the end.


Fading

Zack_illustr

I caught a flight out from San Francisco to Orlando today.  I got to my parents' house around 11:00 pm.  Everyone was asleep except for the nurse and my wife.  Today was the first day that my mom did not get out of bed.  A couple of times she wanted to get up, but she just didn't have the strength. She hasn't been able to swallow food or liquid today.  She has tried to speak a few words, but not too much.

Earlier in the evening, my brother Tim put his ipod headphones in my mother's ears and played some irish songs including Danny Boy.  She responded to the music and moved her feet to the beat. 

The photo above is me, tired and discouraged.


Resilience

Mary_birthday_1

My mother had a resurgence today, perhaps owing to my father's birthday.  Or more likely because she's been sleeping better with the help of Haldol, a new prescription the hospice nurses have put her on.  She is not talking much, but she managed to sing my "Happy Birthday" to my father. 

My wife made a cake for my father and my mom had a couple of bites and a sip of champagne.  Later when she was standing in the kitchen and a Bob Marley song came on, she reached for my father and danced with him.  My parents have been married fifty years and its they love eachother as much now as they when they first met. 

The hospice is now providing round-the-clock nurses, which has been helpful.  The doctor says my mother has been extraordinarily resilient.  I don't know where she gets her strength from.


The Last Goodbye

Mary_graduation

The photo above is from my mom's graduation from St Michael's College nursing school in Toronto when she was twenty-two.  She's seventy-three years old now and won't live much longer. 

I've said a lot of goodbye's to my mom in the last year.  She survived ovarian cancer for more than six years and three different rounds of chemotherapy.  But this past Christmas, I knew she would not last the year.  Chemotherapy wasn't working anymore and so it was just a matter of time.  My parents are very strong and they didn't want to worry anyone.  So they just quietly went down the path, worked through things, made arrangements, accepted what was happening. 

And over the last six months we've all done plenty of the same.  I've flown out to visit my parents, sometimes on red eye flights, sometimes just for a few days, to try to get more time. She outlived the doctor's predictions and and eeked out a few extra months.  But now there is no more time. 

With every trip to see my mother, I've treated it as if its the last time.  I've made sure to say everything that ever needed saying.   But even after doing that, there is always one more thing.  I can't help but think of a million questions that now can never be answered.  If we could string them all together, my mother would live forever.  But she won't and it's tearing me up inside. 

I've told my mother I love her.  I've thanked her for raising me.  I've told her all her kids turned out right.  I've told her my dad is going to be ok.  I've told her she's going to go to heaven. And yesterday I kissed her goodbye for the last time.

As much as you prepare for the last goodbye, it hurts.  It really hurts. 

Day by day you see someone you love dying in front of your very eyes.  Day by day, she is weaker.  She is less focused.  She is less there.  My mother is tiny and fragile.  She is skin and bones.  And the things that made her who she is are rapidly fading away.  Her humor, her smile, her sparkle, they are mostly gone.  She is strong willed which is good to see since that's what has allowed her to survive so long, but even that is fading.  She told me the other day that she wished she could end it.  "Getting sick is a bugger," she said.

I comforted her the best I could.  She cared for all of us over the years; I could never pay her back in a life time, let alone a few days. I showed her pictures and remind her of times when I was growing up. I recalled our camping trips, or when we used to go skiing, or visits with cousins and aunts and uncles.  She remembered them along with me.  Or seemed to.  Sometimes, she was distracted just trying to breathe.  Once in a while she was confused.  But mostly she took it all in.

She can still talk a little, but not much.  Her breathing is labored and I know it will stop at some point.  And then she will be in a better place.   


Helping Hands

Gregg_dad

It's been good to visit with my parents.  I'm glad I've been here able to see my mom and to help take care of her in the final days.  She did better last night, her breathing was easier and she slept until about 3:00 am. We were up for an hour or so, but then I went back to bed. 

Early this morning, my father came to get my wife and I.  My mom was insisting she wanted to get out of the hospital bed and my father made her promise that she would wait until he could get us so we could help her up.  By the time we got back to their bedroom, she had already climbed out of the bed and was standing up on her own.  I'm not sure how she got over the rails on the bed, but she did.  She's always been strong willed!

She wanted to walk a bit, which she shouldn't do too much, but my wife and father (pictured above) helped her walk to the living room so she could have a change of scenery.  I joked with her that she had "broken out of jail."

Later today I will be heading back to California.  My brother Tim will be coming in and then around midnight, my sister Karen will arrive.  It's been a bit of a scramble for them to get flights so I'm glad things have worked out.

My mom's been getting lots of cards and emails.  And plenty of people have brought over food, for which we are thankful. My parents' friend Marie has been over helping out and she is a saint.  My mom said "she'd give you the shirt of her back."  This morning when Marie came over my mom had a great big smile. 

Today I'll help my dad finalize the funeral arrangements so there's one less thing to worry about later on.  It's good to get out of the house once in a while and still be helping. 


Taking a Trip

My mother is in the final stages of dying.  When we were first putting her to bed last night she was saying she needed to get ready to take a trip.  She wanted to get her shoes and be ready to go.  My father asked where she was going and she said "Arizona," where my brother Tim lives.  My father told her it was very hot there and we would go later.  She seemed ok with that.  Later we learned from the hospice literature that it's normal for someone in the final stages of dying to feel they are making a journey.  Which of course, they are.

My wife and I stayed up most of last night with my mom.  She slept a couple of hours but was coughing and had trouble breathing most of the night, so none of us got much sleep.  We gave her water and helped her get to the bathroom when she needed to.  She is still coherant and knows what's going on.  "I'm sorry to be a nuisance," she said at one point.  And later on, "I hope you don't get what I've got."  She also told me "You've got a real gem there," referring to my wife.  Yes, I do. 

He breathing was troubled; there is a lot of fluid build up in her lungs and it creates a haunting "death rattle" or wheezing sound.  This has been going on for a few nights now.  I understand better how hard this has been for my father; he stayed up three nights in a row tending to my mother.  He's been very appreciative of having the help. 

Around 7:00 am, my father got up and I crashed in the guest room for a couple of hours.  I'm glad that my wife and I have been able to come out and help and provide comfort to my mother.  It is not easy by any means, but it feels right.

I'd like to ask everyone to keep my mom in their thoughts and prayers during this final stage.  If you want to post comments on the blog, please do so and I will read them to her.  You can do this by clicking on the link below any posting that says "Comments".

For anyone who is going through a similar process, I encourage you to read through the document below or materials from Hospice to understand the "arc" of dying.  I found it very comforting to know what will happen at each stage and that there is a normal sequence to things.  There is very practical information that will make things easier and more comfortable for everyone.


Night Crew

Mike_dad

My brother Mike has been visiting my parents for the last few days, helping out my father.  Things have been difficult.  I don't think my father has slept much in the last three days.  Last night my father slept in the spare bedroom and Mike took care of my mom.  She woke up a lot during the night and Mike said it was pretty rough.  But better to share the load. 

I will try to get my dad out of the house today and go to a movie or the gym or something, just to get his mind of things.  "I try to be strong," he told me, "but sometimes I just break down."


The Beginning of the End

Mom_0624_1

My wife and I finally got to my parents around 7:30 pm after driving from Tampa.  My mom was asleep for a while, but she was up later.  Even though I was here less than 3 weeks ago, it was a bit of a shock to see how much she has changed.  She's not eating very much, so she is noticeably thinner.  She had a can of Ensure protein drink, but otherwise nothing else.  It's hard to tell from the photo, but her skin color is grey and her eyes are milky and no longer have the sparkle they've always had.  She has trouble breathing and it's hard for her to talk or relax.

My father says she started to deteriorate about a week ago and she is getting weaker every day.  She still has strength to get up and walk around, but she is not as steady, so she needs some assistance to make sure she doesn't fall.  She gets restless and she'll want to walk around the house, which makes it harder to breathe. 

Later in the day, she has more trouble breathing (known as Dyspnea) and she gets a bit panicky.  She was asking my father to take her to the hospital.  "They must be able to do something for me," she said.  My father is making sure she gets her pain killers on schedule.  But at this point, there's nothing a hospital can do for her.  Most of the time she knows this, but when she has trouble breathing she gets scared.  I can see the fear in her eyes and hear it in her voice. 

It's hard to say how much time she has, but I suspect it's days or maybe a week at at most.  My father, Mike and I have talked to our brothers and sisters so everyone understands the situation.

My mother is on morphine to keep her comfortable and she is taking a sedative to sleep at night.  She is lucid and knows what's going on.  She told my father she is ready to go.

Update:
Below is a photo from last year with two of her grandkids and a photo from April this year.  The difference in the last six months or even the last sixty days is shocking.

Mom_grandkids_2005_med  Mary_palm_sunday_1


Flights from Heck

In_n_out

Unfortunately, our red eye flight last night to Chicago was canceled.  It was somewhat of a panic situation at the airport.  There were no other options to go east last night due to weather problems.  And no good options to get to Orlando even on Saturday.  The woman from United was quite helpful though and we managed to get a flight from Oakland 6:00 am connecting through Chicago and then to Tampa Bay.  Hey, at least it's in Florida.

We drove to Oakland, stopped at In-N-Out Burger and stayed in a sleezy motel.  Four hours sleep, two cups of coffee and we are ready to roll.

Update:
There was a further panic when we were changing planes in Chicago and Gregg realized that her checked bag was tagged to go out on a later flight to Tampa.  Luckily we were able to speak to an agent in Chicago and they got her bag on the right flight.  I guess the prayers from the nuns from St Clare's Retreat were starting to kick in!