Two Get Ups

When Peter was little, my friend Lisa taught him to count down the days in terms of "sleeps." So if we were counting down the days until getting on the plane for the US we would count in terms of how many sleeps until we were to get on the plane.

Tonight my dad is counting "get ups."  When mom was leaving him this evening he asked her if it was Thursday.  She said no it was Sunday.  So he starts counting. "One get up, two get ups and I get to go home. Two more Get ups."

Whatever it takes to get us there!

Two Weeks Later

So it was pointed out that I am a bit of a "crisis blogger." I tend to post often in a crisis.  It is true. We might even say I am a bit of a bi-polar blogger in that I tend to be writing silly stupid stuff OR in a crisis. So as you might guess with my silence this week, there has been no major crisis nor moments of euphoria.

I have had some folks ask about Dad and I do want to give an update.  Dad continues to ride the roller coaster between very reasonably sane and crazy confused.  And even at that, you aren't always sure which is which.  He had some really good days then was sick the early part of last week.  Dad started to feeling better at the end of the week.  He was given the go ahead to go home this coming Tuesday. However Tuesday isn't soon enough and for some reason this weekend seems to have two Saturdays and two Sundays. Currently he is kind of pathetic.  We are hoping that going home will help the roller coaster flatten out towards the reasonably sane side. The Physical therapist say Dad is progressing well regarding his knee replacement. 

Part of my silence this week has to do with not knowing what to say.  Grief is such a weird animal.  I find it hard to put it all into words.  Things are back to the way the were and yet they are not.  Life moves forward.  Truthfully the physical routines of my life have not been highly impacted by Larry's death.  Sundays were my day to visit him.  I checked on him occasionally throughout the week via mom. Yet my life routine did not revolve around him. So there is this thought that goes through my head that my life shouldn't feel so affected. I know that isn't true or reasonable but the thought is there. And  yet with his death, the loss has settled around like a fog.  I am trying to do what needs to be done at work and yet the zeal and passion that usually propel me forward it lacking.  I have lots of projects at home that I want to do yet just can't find the energy.  I have a pretty busy life and well I feel like I have no time for grief.  But since I don't have a choice I guess I will have to figure it out.  I wish that I would grieve in a neat and orderly manner. There are times that seem "appropriate" for crying and yet there are no tears.  Then there are times like when the Charter guy on the phone ask how he can help  and I burst into tears. It isn't the nice and tidy grieving I would like.  I guess grief isn't a nice and tidy animal.

Larry's Send Off

It has been five days since the crisis of death.  Formalities are done for now.  The adrenalin has subsided.  Today I woke up to a to do list that was not about Larry but simply about moving forward with life as it is. Today that sick gut feeling is there.  

Last night I read an e-mail that my mom sent to some of my cousins. I loved what she said so I have decided to let mom be today's guest blogger.  I am going to share excerpts from her letter here.  She describes well what a celebration Larry's "Receiving of Friends" was on Thursday night plus provides information some have requested. Because Thursday's visitation was the only funeral event here in Gainesville, Mom and I wanted it be a celebration of Larry's life.  I got the impression from visitors that it certainly was not the conventional "Receiving of Friends."  However we felt like it was a great way to remember Larry with friends as well as introduce him to those who did not personally know him. We are so grateful for those who came to celebrate his life with us.  

In the words of Mom:

"We wish you could have been with us last night as we had a “visitation”, but really a celebration of Larry’s Life.    Oh, he was so loved by so many people.....we were

amazed at all that came...even over an hours drive for some.    We had a forty picture DVD going the whole time, we had his scrapbooks, art, wood shop pieces, his photo

albums, his sports shirts and school shirts  from age 5 to 19 QUILT on display,  some baseball cards etc set on the tables about the visiting room and refreshments in the

kitchen.  It was from 4 to 7...the last visitor left around 7:15.      One of the amazing things was I wouldn't have been surprised if the Dentist office would send a card, BUT five of the lady workers came as a group to tell us how much they loved Larry!    We were so BLESSED. 

 

Our plans are to come to Kansas with his ashes for a Memorial Service at the Hoyt Funeral home at the end of May or June.    When Linda can come and Bob is able to travel.

Larry's obituary can be found at www.memorialparkfuneralhomes.com

(Some) asked about contribution wishes – (Here are the addresses.)  

         

The Guest House   

360 Oak Street                                                                                    

Gainesville GA 30501   

*Where Larry went for 17 years.  

Challenged Child & Friends 

P.O.Box 5758 

Gainesville, GA 30504 

*The Special Needs Preschool Where Linda Works  

*(Larry was a big fan of Linda's "kids." He often asked about them as well as gave Linda things to share with "the kids.")

Dad

I don't know how to explain Dad.  He is confused.  He is clear.   He can't get up and down from the chair while Mom and I are trying to assist him.  He races the nurses in the hall with his walker. He fusses and complains with mom.  He is sweet and compliant with the nurses. This can all happen within a matter of hours.  And well it is exhausting!

Please pray for him. Please pray for us.  Not sure what to ask for.  Dad is challenging and we seek wisdom for dealing with him.  We desire to see him to be physically stronger and less confused.

Thank you

Dying at "home"

One of the things that has been so valuable to us about Larry's death is that he was able to die at "home".  Just a week ago today Larry was still in the hospital.  He returned to the nursing home where he has lived for just a little over a year. We really had no idea that he was returning there to die. I know mom said that when Larry got back to the nursing home last week that he was saying he wanted to go home to their house.  Maybe he knew it was time.  

Yet in God's grace he allowed him to be at the nursing home.  If home is where you are surrounded by people who genuinely care about you, I feel like Larry really was at home in that place.  I often had the impression that Larry was well thought of by staff and residents however I was overwhelmed by the love and care that he received in his last days. Two of mom and Larry's favorite nurses were on duty with him during the last 48 hours.  Interesting that he died just shortly after the last shift change with the second dear nurse.  Stephanie and Lisa were constantly in the room checking on him and working to make him comfortable.  Larry has had a nurse practitioner oversee his care for the last six months or so.  Robin is the one who walked with us during those last couple of days instead of our calling hospice.  How sweet to have someone with us who knew and loved Larry.  In addition to the staff assigned to Larry on Sunday, numerous staff members including those working on other wings and even one who wasn't on duty came by to see Larry. Several of Larry's fellow residents were at his door Sunday morning wanting to see him.  There was this parade of people from the nursing home who came through to say their goodbyes and comfort my family. Larry was not conscience for the last 24 hours of his life but "they" say that he knew.  I don't know if that is true but I do know that the love and care shown him means more to me and my mom than words will allow.

In many ways Larry was isolated because of his physical disabilities.  Yet in this past year Larry's social network increased largely because of living at the nursing home.  He was accepted and enjoyed by many.  Larry was known for being a kidder. Often as we would pass in the halls, someone would look at him with a twinkle in their eye and call him "trouble."   I had a sense of Larry's acceptance as I made my weekly visits,  however I was overwhelmed by the confirmation of it as I watched so many come to see him and leave with tears in their eyes.

I think one of our deepest needs is to be loved.  One of my deep needs is see my family loved and embraced by others.  In Larry's last days I saw that Larry was loved and accepted by the folks at the nursing home.  Larry died "at home" with people who cared about him and that brings me great joy.

The Day After

Death and Grief is such a crazy ride.  One moment there is this giddy energy (so many task) and the next moment the sadness crashes in draining you.  And it all flips so fast that it can make one dizzy.

I stayed at mom's last night.  It is not because either of us said we needed for me to but somehow it just felt right.  Since waking I have written an obituary, selected a memorial picture and verse and began the process for making a memory DVD.  Right now we are listening to Neil Diamond (Larry was a huge fan) in search of background music for the DVD and sorting through pictures.  It actually is a healing process.

Mom and I are glad that death brings many things to be done as it is helpful to be busy. And well truthfully we are both probably secretely glad to have an excuse to not go visit dad yet today.  He has called and he is grouchy.  Dad has handled this better than I expected but it has increased his moments of confusion.  Please continue to pray for him and well us as we deal with him.

Larry's visitation is Thursday March 19th 4 to7 at Memorial Park North Riverside.  His memorial will be at a later time in Kansas.

Thank you for the prayers and many expressions of love and care for our family.

Finding Yonder

Well today I believe that my brother Larry found Yonder.  Larry died this morning shortly after 8 am. Two weeks ago my mother and I learned that his cancer had returned.  Mom and I were waiting to meet with his cancer doctor to learn of the prognosis before sharing it publicly.  That meeting was scheduled for this week.   Since returning to the nursing home last Wednesday night, Larry had not been doing well.  He was vomiting even with the feeding tube in place. He was quiet as well as sleeping a lot.  None the less it was a bit of a shock to receive the call Sunday morning that we needed to prepare to say good-bye.  From the time we learned of the cancer's return, I have been praying for mercy.  I have prayed that Larry would not suffer long. God has indeed been faithful to answer that prayer.  I have many stories I would love to tell you of God's grace and mercy over the past weeks.  I hope to share them with you at a later time.  

A memorial service will be in Kansas later this spring and we are planning to have visitation here in the next few days.  I will continue to provide updated information as well as stories of God's goodness in the days to come.

Just a quick report.

Larry

• He is quiet today.
• He finally got the needed release to head back to the "Old Folks Home" this evening.

Dad

• Mom and I attended his care meeting at the Oaks today.
• It was very helpful for helping us get an accurate picture
• The staff was kind and informative.
• I think mom and I have a greater understanding of short and long term memory and how the longer term one is used to compensate for the loss of the short. This is helpful for deciphering conversations with dad.  
• Dad is making progress. He will continue therapy at the Oaks at least through the end next week, possibly longer.
• The meeting was encouraging.

Mom

• Hopefully she will get to sleep in her own bed tonight.

Me 

• I came home in the daylight.
• I am headed to bed soon. : )

Crazy Ride

Since Dad went to the hospital for his knee replacement surgery 22 days ago we have been on  a crazy ride.  Mom has spent 15 of the last 22 nights at the hospital. Larry has been poked, suctioned, scanned and tested.  Dad has been on a variety of trips without ever leaving his room. And well my car believes it is to drive to the hospital and/or nursing home before heading home at the end of the day.  There have been some tense moments as fear, fatigue and frustration have taken hold.  

And yet there has been crazy moments of peace and humor.  Mom and I have spent more time and had more meaningful conversations the past three weeks than the three months prior.  Though Dad occasionally gets confused and slightly agitated I have seen a side of him that I have not seen much of in the past.  He can be funny and has taken a lot things (that would have made him crazy in the past) in stride with calm and ease. And Larry well tonight Larry talked to me more than he has in the last month . And I was actually able to understand most of it with little trouble.

Larry had a PEG ( a feeding tube) put in today.  You would have thought something in the brain had been altered by the change following this procedure.  Maybe it was just the relief of finally having the procedure done after all the long long waiting with all its testing and poking that preceded it. When he came out of the anesthesia he told the Anesthesiologist thank you, that he did a good job and he hoped he could do something for him some day. Tonight he was on Morphine and I was told that he would probably fall asleep.  Yeah when mom came back from visiting dad he hadn't slept a wink and I was the one sitting in the chair with my eyes closed and my mouth wide open.  This was after Larry and I talked (mostly at his initiation) about Jesus, Peter, my kids at school, relatives, the folks at "the old folks home" who were probably missing him, why I wasn't running, Dad, and hockey. 

The hope is that Larry will return to the Old Folks Home (his terminology) tomorrow.  Thus far we are told that he will be able to return to his room without issues even though he will have been away more than 7days.  There is a care management meeting for dad tomorrow that will hopefully give us an idea of how much longer he will remain at Rehab.

Thank you for your continued support of our family.

For those still awake

So it is after 10 pm and I have just returned from the hospital.  I left after Larry finally had his CT Scan of the abdomen and head.  They began prepping him this morning anticipating it to take place early in the day. It was a crazy long day for Mom and Larry waiting for it to happen.  Mom and Larry were looking frazzled when I arrived about 8 pm.

Here is the kicker - I greatly question the competency of tonight's staff working with Larry. At best they are simply slow as molasses and not very friendly.  I told mom to make sure she had their names and wrote down that number you call if you have complaints. Just in case we needed it. So if you are awake and get this before 7 am Monday - please say a prayer for Mom, Larry and their nurses.

As you might guess things have been delayed- not sure when the PEG (stomach feeding tube) will be able to be inserted. Not sure when Larry will be released.  Tomorrow the 7 days for holding his room at the nursing home will be up. 

Mom's favorite doctor will be there yet tomorrow before being off for four days.  So praying for things to progress as needed tomorrow. Praying  for wisdom of doctors.  And please pray for peace and encouragement and whatever other good things you can think of for Mom and Larry who are growing weary of hospital life.

Tales from the Nursing Home

My mother is always telling me that I need to write a book.  I always tell her that there are too many books on the clearance rack as it is.  However I decided today that maybe I should write a book about stories and folks in the nursing home.  

I took Dad lunch today.  He suggested that we take it to a dining room.  With mom and I having limited chance to visit this week, we have not been sure of how much dad is getting out and around.  I was pleased to see him maneuvering himself in and out of his wheelchair and taking himself down the hall. Truthfully it is more than we thought he was doing.  For the most part he seemed pretty aware of life as it is.  I do think there is a difference in seeing him during the day as I did today and in the evening.  I think the evenings cause for a little more confusion.

I took dad's lunch into the dining room and heard this resident shouting at his dining neighbor. He said "what is this?"  "What are we eating?"  His neighbor didn't answer.  Again he said "what is this?  My daughter will call and ask what I had for lunch.  I don't know what to tell her." I was struck with compassion for the daughter who needed to make conversation with her dad.  I felt for this old man who needed to know what he was eating so he could have a conversation with his daughter. So I went over and told him it was Chicken and Rice with green peas.  After repeating it about 7 times he finally heard me.  So as long as he didn't forget, he could tell his daughter what he had for lunch.  I don't know why I found the whole thing so amusing but I did.  

Dad and I were finishing up lunch when a client in a wheel chair knocked his chair alarm off. The chair alarm is intended to alert staff to those at risk clients who are getting up out of their chair.  The man was still seated but because the alarm fell off it started beeping.  The man is wheeling himself away and that alarm is lying on the floor just beeping.  Several of us spectators were trying to figure out what to do. The staff in the vicinity seems oblivious to the beeping. (Yeah that was not real reassuring.) And my dad is sitting there going "some one's getting away! and just a laughing!

Yep maybe somebody needs to write a book about the funny side of nursing homes.  Oh yeah there probably is one on a clearance rack somewhere.

Longing for Dr. Quinn

So there was a time many years ago when I was obsessed with watching Dr. Quinn, Medicine Woman.  Now that I have cable TV I can watch it most nights if I so choose.  I usually choose cooking shows but have realized that Dr. Quinn warped me.  In those shows, Dr Quinn is "the" doctor. She knows her patients personally and handles all aspects of their medical care. She knows the story of her patients and makes decisions accordingly.  She is "the" doctor. That was then.  This is now.

Do you know how many different Doctors, Physician Assistants, Nurse Practitioners, Nurses, Techs, and who knows else are involved in Larry's care?  The doctors in charge of his care at the hospital are not the doctors he sees when he is not at the hospital.  And the doctor today may not be the doctor tomorrow. And if we are talking about one part of his body, the doctor present may not handle that part of the body and we have to wait for another doctor. Today while visiting Larry at the hospital, Mom and I were waiting for "the doctor."  I met several people but "the doctor" did not come until after I left.  I don't remember her title but she had dealt with Larry's case all week, Mom liked her, and she was the one needed to make important decisions today. 

So based on all those doctors and non doctors it boils down to this.  Larry is recovering well from the pneumonia.  He has been hydrated and looks much better.  His kidney function is where it needs to be.  The various throat test did not reveal a cause for his inability to swallow.  He is still struggling to swallow food, thickened liquids and medication.  This inability to swallow leads to dehydration and lack of nutrition but most importantly the inability to get his needed seizure medication.  Therefore the decision has been made for Larry to receive a stomach feeding tube. Hopefully this can take place tomorrow so that he can return to the nursing home Monday.  Long story short Larry's spot at the nursing home can only be held 7 days.  The seven days are fast approaching. We are praying that he will not lose his spot (and his private room) at the nursing home that has become his home.

Update March 4

I talked with Dad's primary Doctor today.  Prior to Dad's surgery he had a Psych Evaluation to consider his memory loss and occasional confusion.  Dad was diagnosed with some dementia and depression.  Both of these are going to be addressed at the Oaks rehab while he continues his physical therapy.  That felt like progress.  When I stopped in tonight he seemed pretty clear until he began to answer my question about his day. He began this long long story about the "courthouse" and how he thought he had to go to this one and that one. He told me about the lady who helped him discover it was all in one courthouse.  I was confused until I realized Dad really was telling me about his day. The assistance one of the therapist gave him in organizing and labeling his things was just disguised in memories of his working for the county and going to the court house. Once I pieced it all together it made sense and he sounded a little less crazy. He seemed peaceful this evening when I left.

Larry remains at the hospital and continues to be treated for pneumonia as well as undergo a variety of test.   Mom is staying with him at the hospital.

That's today's update.

On and On and On

So I stole the title from a favorite ABBA song.  It just seemed to fit the mood of the day.

Mom received a call early this morning that Larry had been unable to keep down his meds for the past 24 hours.  This is a concern because of his imperative need for the seizure meds. (So I threw in the word imperative because Peter recently used that word with me and it made me laugh.  That's what a high dollar Military school will get you, a kid with a vocabulary greater than your own.) So off Mom went to the ER with Larry.  Larry was diagnosed with Pneumonia and he was admitted to the hospital.  So 12 hours after getting dad out the hospital mom was back at the hospital with Larry.

I spent the evening with Larry so mom could visit Dad and do some laundry. He was already better this evening than when I was with him last night at the nursing home. Larry was talking to me where last night he just kept falling asleep. He seems to be getting good care. In addition to dealing with the pneumonia, they are checking into his kidney function and swallowing issues which are significant issues at this time

I visited with Dad for a bit this afternoon and he was fairly emotional about Larry going into the hospital.  I think he also was not liking that Mom was not quite as available to him today. It wasn't a great day for Dad.

So the journey continues.  Thank you for your prayers.

Praise and Petition

Dad
The things I am thankful for include:

• Good doctors during Dad's weekend hospital stay
• Dad was content and calm for the most part.
• Dad was provided with IV meds to begin breaking down the blood clots.
• Dad was switched to oral meds this evening and moved back to the Rehab center.

The things I am concerned about:

• Dad will have a peaceful night.
• Dad will get appropriate therapy that meets his needs and considers the blood clots.
• All those financial and logistical details of dad being in and out of Rehab
• Dad will physically be able to return home.

Larry

The things I am thankful for include:

• The good care of the staff at the nursing home
• Larry is thought highly of by staff  (a CNA who was on a different hall this evening heard he wasn't well and came to check on him.)
• The nursing home staff is being proactive about Larry's care.

The things I am concerned about:

• Larry has been unable to keep food and liquid down for almost a week.
• Larry has become lethargic and is currently remaining in bed.
• The cause of all of this is currently unknown.

Mom

The things I am thankful for include:

• She did get some sleep in the hospital.
• She keeps going just like the energizer bunny.

The things that I am concerned about:

• She wont wear out.
• Her ability to handle all the paperwork and details that she has to deal with.