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Home, Sweet Home

Alyce’s 82nd birthday seems like a good time for a long overdue update.  

On July 14, Mom was discharged from the rehab center – her 100 Medicare days were up, and it was JUST TIME!  With Jeff and Brian’s help, we made some home modifications and installed a stair chair, which gently lifts Mom from the garage to a waiting wheelchair and into the house.  

It is beyond wonderful to have her home again. Dad would say that it feels like home again.  After a few weeks of working out all of the logistics and purchasing the necessary equipment and supplies, we’ve settled into something of a routine, although it seems we still learn something new every day.  

Although we expected something of a bounce back, or maybe just a bump, in Mom’s level of alertness and ability to communicate after being back in her familiar surroundings, that hasn’t really happened.  She certainly seems happy to be here, but continues to be very tired and speaks only rarely.  Therapies through home health have begun: occupational, physical, and speech. In fact, if we’re not careful, days become way too busy, and she doesn’t get the needed rest and relief from stimulation.  

Mom is not walking, so she needs to be repositioned every few hours during the day and night to keep her comfortable and avoid skin problems.  We have been fortunate to have found five lovely nurses/care providers with a lot of experience who work several nights a week so Val and Nancy can sleep and at least one day a week to help us focus on our work.  

Dad is in charge of hand-holding, which he is very good at.  You’ll often find the two of them holding hands in the living room or the back deck, looking out over the beautiful woods.  

We don’t have a clear idea of what is ahead, but are working hard to make each day happy and comfy for both Mom and Dad. No matter how tired and sad we might be, we always find something to laugh about.   

Thank you for your love and support.  

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Slow Hope

Thanks for patiently waiting for our post.

As Auntie Mae Rens says, this is a time of “slow hope.”  

Mom continues to make improvements in physical/occupational therapy, and her ability to hold her torso upright and balance herself while sitting is improving.  She occasionally stands with a standing chair and pulley system rigged to the ceiling, and it is heartening to see her upright!   The nurses, nursing aids, therapists, and other residents are kind and encouraging and supportive.  

For some reason, she has chosen to be more quiet for the past two weeks; we’re not sure why, but perhaps she’s conserving energy -- or just frustrated, which is understandable.  A recent MRI will tell us more, possibly later this week.  

Dad has almost completely recovered from his fall and is totally focused on being there for Mom.  They have a comfortable, quiet routine spending time together.  The Pavilions sits on the grounds of a restored Victorian mental asylum with gorgeous grounds, and we enjoy walks with Mom in the sunshine.  There are often dogs around to watch and pet.  

On May 30, Val arrives again, after returning home to New York for daughter Amy’s college graduation.  Dad, Mom, and I are super happy about that!  And Brian just booked a flight to return in June.  

Thank you so much for the comforting and cheerful river of cards and other messages.  We read each to her, and she nods and smiles.  

We send our love back. 

Good News

Thanks for being patient with us -– this update is definitely overdue.  But we have some exciting news!  Two days ago, Mom squeezed Nancy’s hand.  This is the first movement in her right extremities since her surgery and is hugely encouraging. Yesterday she flexed her new super powers by also wriggling her fingers, and therapists also noticed new tone in her right leg. We are all thrilled with this development, and it is consistent with Dr. Elisevich’s expectations, although she kept us in suspense a little too long.  

We needed the positive development, as things got a little hairy last week.  Dad, who apparently was itching to get closer to his sweetie, fell while running (yes, Mr. Slow and Steady Wins the Race ran across a street) and suffered a very small brain bleed, a nasty laceration over his eye, and many large bruises, the worst being his left knee.   It could have been much worse, though, and he came home after staying a few days in the hospital right next door to Mom.  The day of his discharge, Mom’s gastric tube was accidentally pulled out during a transfer from wheelchair to bed, so she the two of them met in the emergency room.  Oy!  

Things have returned to normal now, and we’re focused on encouraging Mom’s progress with her right side.  Her speech is also coming along (still some Spanish), and we’re working on her saying complete sentences and initiating speech versus answering questions.  

Fortunately, Val was able to extend her stay another 10 days, as she has a knack for assessing situations and diplomatically making the right things happen. She’s the type of person who makes everything better by her very presence.  It will be hard for her to leave (and sad for us!), but she will fly home on Tuesday.  Gordon and Laika have been really patient – thank you!  She plans to return after Amy's college graduation next month, and Brian is planning a return as well.  

It seems that each day we get more lovely cards from friends and family to read to Mom/Alyce, and sometimes she reads them aloud.  We’re collecting them in a scrapbook that she can thumb through when she feels like it.  

Continued gratefulness and thanks for your support.  

Mom sends her love to everyone.  

Sunny in Traverse City

The sun has come out in Northern Michigan, and the light is brighter in Mom's eyes.  

We remain happy with and grateful for the close attention and gentle care she is receiving at The Pavilions, where she was nicknamed "Miss Smiley" her first week.  It is especially sweet that the other residents of the rehab center watch out for one another, and Mom was immediately welcomed to the "Cool Table" in the dining room.  

Most encouraging right now is her speech:  She is answering questions more readily and consistently, and sometimes offering a few additional words.  The most interesting thing is that she has been speaking Spanish!  We don't think she's used it since her nursing days at Serra Memorial, but she is more apt to say "si" than "yes" and to call Rich "mi esposo."  (Jeff also spoke Spanish after coming out of his coma 30+ years ago.) Mom's crowning verbal achievement was coming up with "winklehockey," a term her grandmother used for three-sided fabric tears.

Lots of work yet to be done physically, as she still has no movement on the right side -- although she can feel them.  This deficit is due to the tumor having been primarily located on the left side of her brain.  Physical and occupational therapy 6 days a week will surely start to make an improvement, and Dr. Elisevich is optimistic that she can recover.

Brian returned to California this week but is keeping in close touch daily. Dad is doing well, despite a cute red nose, and his daughters often prescribe guilt-free naps. Jeff and Sandy will visit soon. Special thanks to Aunt Elsie who supplies us with homemade soup, hearty dinners, and other delicacies, and often visits Mom.

Thanks as always for checking back in with us.  We're going to plan to post weekly from here on out.  

Grand Traverse Pavilions – Mom's New Digs

Mom was discharged from Spectrum on the 5^th and transported via ambulance to her new digs: Grand Traverse Pavilions rehab facility in Traverse City – a more manageable 35 minutes from our Glen Arbor home.

We are all very pleased with the facility, including her room and therapy services. She has a nearly private room with the exception of sharing a bathroom. It has a big window next to the bed which looks out onto a courtyard where children under child-care play. It’s so nice to get her into her own clothes and surrounded by objects from home.

Four of those objects – Dad, Val, Nance, and myself  – have been a care-giving, need-fulfilling machine. We are together so infrequently that it’s kind of a thrill to be part of Team Peterson. Managing transportation, meals, visitation shifts, and fitting individual work time is like a Rubik’s Cube with ever-changing colors. Fortunately, we can all work remotely. Brother Jeff was a big help down in Grand Rapids and he hopes to make the 3 hour drive up to see Mom soon. Dad’s unrelenting vigilance of being at Mom’s side is awe-inspiring. On top of it all, he has been dealing with his own medical needs. He just completed a series of radiation treatments for cancer on his nose. Today, he’s off to get a blood transfusion to replenish his oxygen-starved blood cells.

Mom continues her steady but slow progress. She appears much more alert and for longer periods of the day. She loves to watch and listen to everyone and often appears to have something to say resting on the tip of her tongue. She has spoke single words several times now. More or less hugs and kisses? “More”. My eyes? “Blue”. Val’s hair? “Black”. Also, “Okay” and “Good Morning”. She enjoys listening to us tell stories about the family, smiling with her mouth and eyes.

She has begun both physical and speech therapy. It’s going to be a long process but we feel optimistic every day we see her.

Her room is too small for flowers, but cards are welcome! Pictures of familiar faces encouraged. Grand Traverse Pavilions, 1000 Pavilions Circle, Traverse City, MI 49684.

A big thank you for all the kind words and prayers!

No Clever Title, Just Monday

Mom is one of those ladies who always has fresh, perfectly applied lipstick on.  Today she held some chapstick and applied it herself -- a great achievement.  She's making progress all the time, though she still prefers to do things for us and sometimes pretends she is sleeping when the therapists come around.  She was awake a lot today and smiled at girl jokes and the news that her lifelong friend Norma had called.  She listened with wide eyes while we read your lovely cards and her Daily Bread reading.  

Today her nasogastric tube came out, so she will be much more comfortable.  Doctors placed a gastric tube for nutrition and medication until she is more alert and able to eat.  We're looking forward to intervention from a speech therapist tomorrow to determine how well she is swallowing.  

Doctors remain confident that she will continue to improve with time and therapy.  The plan is to discharge her in the next few days to a subacute rehab center, and we are looking at two highly recommended ones in Traverse City.  It will be wonderful to be back in Glen Arbor!  More news to come...  

Mom Says...

We've decided that Brian has the mojo, the Midas touch, the baby of the family magic that makes Mom responsive. Friday night he prompted her to say her first words since surgery: "more" (as in I want more hugs and kisses), "yes" (answering Do you understand me?), "no" (Are you in pain?), and "okay."

Saturday we were treated with "morning," a thumbs-up, and several smiles. Otherwise it was a low key day, and she slept for most of it. On the few occasions when she opened her eyes, they were more clear and focused. 

When dear friend Mae Rens spoke to her over the speakerphone, Mom turned her head toward Mae's familiar voice. 

We are hoping for more progress today, primarily because we'd like for her to qualify for acute rehab. That said, considering what she has endured, we're very happy about all improvements, and those glimpses of Mom are priceless.
Thank you, as always, for your loving support. And a special thanks to Auntie Nan, who is giving us a place to sleep, shower, eat... supplying us with gallons of strong coffee and stellar dog-sitting services. 

Best day ever

It's nearing the end of a long day, but we think you'll agree that our news is worth the wait! Mom spontaneously opened her beautiful eyes several times today, showed recognition, and even smiled in response to a funny family joke. Another sign of progress was her ability to follow commands, such as holding her left arm up or sticking out her tongue.  These small steps wear her out; you can see on her face just hard she's working.  We talk to her a lot about where she is and what progress she's made, always reminding her that she's one day closer to going home.

When we told her that Dad and Brian were on their way back to Grand Rapids, and that Dad was wearing her favorite red shirt of his, she smiled and then made the "oooh" sign with her mouth...so funny and precious!

She will stay in the hospital at least through the weekend and we'll continue to work on plans for the best rehabilitation facility for her continued recovery.

Slow 'n Steady

Thanks for checking back in with us.

Mom is making tiny steps toward waking up.  We've seen a few smiles today, especially when getting her teeth brushed and minty chapstick applied.  The nurses told the ICU doc that, "She likes to do more for her daughters than for us."

The EEG has shown no seizure activity, so the mass of electrodes were just removed -- Yay! This makes her head more comfy and moving her around easier. The plan is to get her up into the chair a few times today. They use a soft sling to lift her out of bed and into the chair...a nice floaty ride. She also needs to be stimulated in other ways so that she interacts more with the world; we talk a lot, move her arms and legs, and make sure she knows how strong she is and how much everyone loves her.

The doctors remain confident that she'll recover with time.  The problem is complex and difficult to understand:  "Aboulia" involves a disruption of communication among parts of the brain, and this includes her emotions and motivation. SO, in addition to the physical aspect of recovery, she needs to regain the will to act in various ways. That will come with healing and a lot of pushiness from us.

Dad and Brian are back in Glen Arbor, where Dad is getting his medical treatment.  He definitely misses Mom's comforting presence in the house and can't wait to get back to Grand Rapids tomorrow. We're researching rehab facilities in the Traverse City area, where she'll be able to get intense physical, occupational, and speech therapy -- all with the goal of getting Mom back home.

In the meantime, thanks to Uncle Glen, we have a boombox in the corner playing Chopin preludes.

Wednesday Morning

All is stable here.  A goal for today is for Mom to wake up more, and in the ICU it is important to maintain the normality of day and night cycles.  So, the blinds are up, and the sun is shining on her sweet face. She did open her eyes a few times this morning and looked at Brian for a good long while (how can you not?).

The staff here (where some time ago Mom worked as a young nurse) is friendly and definitely inspires confidence.  Still, we want to get the heck out of here. Our next step is a neurological rehab center -- likely in Traverse City.  We're hoping that will happen in the next few days.

A few minutes ago, Dad and Brian left to go Up North, as Dad needs to get back to his daily radiation therapy.  He is stoic and very tender with his bride.  It will be hard for him to be away.

Your posts, calls, emails, thoughts and prayers are really helpful.  Thank you!

Taking Time

It was a tremendous boost for Alyce/Mom to have conquered the long surgery yesterday, Her responsiveness after surgery, however, has not been good.  She opens her eyes and follows noises, but is not speaking at all.  She does not follow commands, but does seem to recognize some people, and has even been known to slyly smile when refusing to, for example, open her eyes for a nurse. Her right side is not moving.  It's been scary and upsetting, BUT we are very relieved to learn that the neurosurgeon believes her condition is temporary, and it is not due to a stroke.  There are several possible reasons for her slow "awakening" that have to do with the very large tumors he removed, the area in which he was working, and the duration of surgery.  

Everyone wants Mom to get out of the ICU as soon as possible, and it is likely she will need treatment in a rehab setting for a while.  We don't yet know the timing or location of any of this, but will share this with you as soon as we know. 

At least one of us is always with her, and she knows how much she's loved. We even caught her sweet smile when Dad sang "You are My Sunshine" to her. As always, we are strengthened by your support and share your messages with her -- thank you! 

Great news!

After more than 6 hours of surgery, Mom/Alyce is now in recovery and waking up.  She's amazing! Our hero, Dr. Elisevich, met with us and clearly described the surgery from start to finish. He is quite pleased with how things went and was able to remove over 90% of the large tumors. They are now watching to see how she responds and starts moving.  We'll get to see her within the next hour, and can't wait to see her sparkly eyes and smile.

She'll be spending the night in the intensive care unit and the goal is then to get her up and moving as soon as possible to prevent complications.  We don't know yet how long she'll be in the hospital, but will continue to share updates.

Our heartfelt thanks for your support and kind messages all day -- it really helped us through this long day.  Keep them coming!

Surgery update #2

At hour four, Mom is still stable in surgery.  Tumor removal continues...

Update from the Operating Room

Just received our first update, about two hours after surgery started.  Mom/Alyce is doing fine, and her vital signs are stable.  The surgeon anticipates his work taking about another four hours.  We are all together in a comfortable waiting room and feeling your support -- thank you!

Ready for surgery and surrounded by love

Mom is responding well to steroid therapy, which is doing its job in reducing swelling and allowing her to think a bit more clearly and communicate a little better. We had a nice, calm day.  A highlight was a visit from Dr. Elisevich, her neurosurgeon and our hero.  Mom positively lit up when she saw him, and she clearly melted his heart.  He is reassuring and confident about tomorrow's surgery.  Mom is on the schedule for approximately 9:15 a.m.  We'll have a strong, supportive group of family here for the day.  We treasure your thoughts and prayers and will let you all know when she is safely in recovery.  Thank you for loving Alyce Jean.  

Early trip to the hospital

Hello from Butterworth (Spectrum) Hospital in Grand Rapids.  We've had an eventful and scary couple of days.  While sitting at the kitchen table with Rich, Val, and Nancy on Thursday afternoon, Mom had a big seizure (her first).  Thankfully, we were all there with her and she didn't injure herself.  The ambulance arrived swiftly and drove Mom to Munson Hospital in Traverse City, where a CAT scan of her head showed that the swelling in her brain around the tumors has increased, and is likely to be the cause of the seizure.  We were so relieved to learn that she did not have a stroke and was not bleeding.  The decision was made to send her by ambulance to Butterworth Hospital, where her surgery is still scheduled for around 9:00 Monday AM on March 27.

She is safe, comfortable, and getting medicines to help prevent more seizures and decrease the brain swelling.  She is still sharing her beautiful smile with everyone who walks in the door, yet has much difficulty finding the words to express herself. She tries hard though!  We are all keeping a close eye on her, with the goal of keeping her healthy and as comfy as possible while in the hospital so that she can heal quickly after her surgery.

The other day, I stumbled upstairs for coffee, and Mom was already dressed (looking "spinorty" with lipstick and everything). I asked, "Oh! Are you going somewhere?"  And she answered, "Well, you never do know."  So, I had to take her out, of course.  We went to Light of Day Organics (on 72), where they had a tea tasting -- just like wine tasting, but you don't get loopy.  We learned a lot more about tea than I ever knew was possible and had a really nice time.

A letter from Alyce

This is Nancy, writing for Alyce.  Mom has always been a great correspondent. I think, if she could, she would be keeping up with her hand-written cards and notes to her dear friends and family.  So this letter is written as if she's speaking to you so you can get a feel for her life these days (she did OK it!).  

                                                                                                                      March 17, 2017

It is a cozy afternoon after a little snowstorm.  It’s been a different winter, not as severe as usual and not as much snow to shovel.  The lake has frozen over, thawed, frozen over again – weird!

I have this funny business going on in my head that makes it hard to express myself and makes me confused much of the time.  The tumor that the doctor removed (most of) three years ago has grown back and is causing these troubles in my thinking.  I don’t like it!  If we had a phone conversation recently, and I didn't say much, that's why.  I want to make sense again, and I want to have nice long chats with you again, so I am going to have surgery. 

My surgery will be on March 27 in Grand Rapids.  We all really love my surgeon, Dr. Elisevich.  The girls say he treats me as though I were his own mother or a beloved aunt.  I am a little scared about the surgery, but also anxious to get better, so that’s what we are going to do!  Brian is coming all the way from California, Val is coming again from New York, and of course Jeff will be there as well. Just like last time.  And we are all positive that, just like last time, I’ll be able to come home after just a few days. I’ve been doing exercises and building my strength in other ways to be in good shape for this surgery. 

In the meantime, I am doing my usual thing.  You know me, I like to be busy – always doing something.  I still enjoy reading – the newspaper every day, and I always have a novel going.  I keep up with housework and really like to keep everything tidy.  We joke that I’m always trying to take Rich’s plate or bowl before he’s done eating to put it in the dishwasher!  Grocery shopping is still one of my favorite activities, and I always watch for sales in the newspaper.  I have been working for some time now on a project looking at old photos and sorting them into boxes for each “kid.”  Fun!  Sometimes I am amazed at how much we have done and how many interesting places we have been.  So many terrific friends and relatives.  Rich and Nancy don’t let me get rid of anything, as they are both too sentimental.  One more thing I’ve done recently is finish the fringe on an afghan that I began when Jeff had his accident over 30 years ago. I’ll even admit that it’s beautiful!  

I still go to church and really enjoy it – I may have trouble saying sentences, but I can sing hymns with no problem. I have so many good, caring friends there.  I also have Companions, a women’s Bible study group, twice a month.  My sister-in-law and dear friend Elsie is just a few doors down, and we enjoy time together, too. 

Rich is being so attentive and sweet.  He watches me all the time and makes sure I’m safe and happy.  He always wants to hold my hand!   But I have to take care of him, too, because his myelofibrosis makes him “tippy” and tired sometimes, and he is also getting radiation for skin cancer on his nose.  Phew, too much! 

I would like to hear about you and your life as well.  I think about you and love you. Please be thinking about me on March 27. I appreciate your prayers and look forward to writing you myself soon!  

Rich and Alyce, July 2016