Jakob Cruezfeldt Disease

January 28, 2015

Stan and Becky Lockhart, and my hub Matt, July 2014

You may have heard about the former Utah Speaker of the House, Becky Lockhart, who just recently passed away from a rare and rapid moving brain degenerative disease called Jakob Cruezfeldt disease.  I guess there are only a few cases of this disease reported in Utah every year and you just don't hear about it much.  This sad story especially peaked my interest and made me gasp a little when I found out what she had died from . . . for a few reasons.  First, I have spoken on the phone a few times with Becky's husband, Stan in the last few years, scheduling Matt (my hub) to speak to the spouses of the legislature, and he's such a nice guy!  I feel bad that he would lose his wife at this stage in his life! Last summer Matt had Stan and Becky on his BYU radio show where they talked about service to family and to the community!  I went back and listened to the show last week.  Here's the link if you're interested in listening.  BYU Radio Show from July 1, 2014

Second, Becky is my age which seems far too young to be dying of such a bizarre brain disease!  

And finally, my Grandma, Dale Tanner, my Mom's Mom, had this very same disease back in 1980 and passed away at the age of 60.  My thoughts and prayers are with the Lockhart family at this time!  

I heard or read an interesting thing lately about this Jakob Cruezfeldt's disease . . . that "it's like Alzheimer's disease on steroids!"  It's Alzheimer's disease condensed into just a couple of months instead of 10-15 years as it sometimes can last!  If you had the choice, what would you choose?  Most people would probably choose the faster moving disease . . . I think I would!  I think my Mom would have even chosen the other if she could . . . but I have to say that I am grateful for the time I have had to spend with her!

In my recent reading of my Mom's journal from the 80's, I came across the entries about when her Mom was dying of this disease . . . which was happening right at the time my youngest brother was born, which I didn't remember was the case!  What a bitter sweet time in my Mom's life! 

April 19, 1980

     I am sitting in LDS Hospital two days post partum after delivering a darling 7lb 4 oz baby boy.     We haven't decided on a name yet - either Stephen Richard, Daniel William, or David Michael . . all possibilities?
     We were thrilled to have another boy.  All of the kids plus Bill and Grandma Cora came up to see him last night.  Michael (age 3) leaned over to the window of the nursery and gave him kisses.  We really feel blessed to have 6 healthy children.
     It's a beautiful spring day as I sit here writing this and I'm enjoying the few days of rest and quiet.

My Granny Tanner and Gram Preece, in the late 70's!

     This has been a difficult time as mother is in the hospital too, suffering (dying) from what we think is a fatal brain degeneration called Jacob Cruezfeldt disease . . a disease similar to the one that Dad died from 13 years ago (Picks Disease).
     Since Christmas, Mother has complained of some vague complaints that I thought were the result of chronic depression . . . complaints of headaches, ringing in ears, tightness in her neck muscles, etc.  I told her I thought she needed to become more involved in other's lives so she would feel more useful and worthwhile, and not so turned inward.  This however was not her problem at all.  In the middle of February I received a call from (brother) Rick saying that Mom had "flipped out".  In talking to her, she described having periods where she lost touch with reality, which I'm sure was very frightening.
     I tried having Mom come to stay with me but it was a very difficult situation. She had to be told what moves to make or she didn't do anything -- "Mom, it's time to go to bed now." 
     We finally worked out a system where a different person would take her everyday and then she would sleep in her own bed where Rob (brother) could watch her. 
     On March 12th, she became paranoid and agitated and too much for me to handle.  Thinking she had had a nervous breakdown, we took her to 3 North at LDS Hospital where she stayed for two weeks.  It was determined by the neurologist (Satovick) and Psychiatrist (Moench) that her illness was not mental but a physical brain degeneration. (Jakob Cruezfeldt disease) 
     She very rapidly deteriorated physically to where she was unable to walk, talk, eat, swallow or respond in any way, but only to open her eyes.  This is how she is right now and it's very difficult for everyone.

Mom and her 4 siblings: Rick, Rob, Deanne and Mike

     All of us kids spent last Saturday cleaning out closets and drawers of Mom's house so Mike (brother) and Sandy can move in.  We've become closer as brothers and sisters because of the many family meetings and decisions we have made together. 
     She is now on 7 West at LDS and I hope and pray she doesn't linger on much longer.  I'm sure Dad will be glad to see her again!  
. . . . . . . . . 
Stephen (I'm assuming she decided on the name at this time :)) just wet on my bed -- his waterworks are terrific! :) . . . . . 

June 2, 1980

     I'll try to remember all of the events since my last entry in April . . . 
Mother continued to get sicker and sicker until Mike called me at 7:20am from the hospital one morning to tell me of her death.  She took her last gasp as he was in the room making rounds.  I will miss her more and more as time goes by and as the memory of her suffering diminishes.  I did not appreciate her enough while alive (I'm sure a common feeling), but wish I had spent more time with her.  I know she loved me although we were not terribly demonstrative, and I knew or felt no criticism from her.  She relied more on me in the last several years than I did on her.  She was always a witty, concerned and immaculately dressed woman. 
    Her funeral, held on May 8, 1980, was one of the nicest funerals I have ever attended.  It was held in the Yale 2nd Ward with Roger Thompson conducting.  Marvin Ashton and Deanne (sister) were the only two speakers and Terry Summerhays sang two musical numbers.  Bill Tanner (uncle) gave one prayer and Rob (brother) the other.  Rick offered the family prayer before the funeral and Mike (brother) gave the dedicatory prayer at Salt Lake City Cemetery where she was buried next to Grandpa Storrs and Dad.  I felt a sure knowledge of life after death and am sure she is happy with Dad!


January 29, 2015

Hike with Mom, January 23, 2015

This photo on the right is from a small hike we went on last Friday, less than a mile from their house.  I'm so grateful that we can still be walking and hiking and it's the middle of January! It was a little muddy in places but not too bad, and she was a little confused about where we were and what the best ways were to go down, but we had fun anyway!  Here's a little glimpse into our walk/hike:  
Short video of our hike! 

I treasure these times! I do not ever want to repeat the words that she said about her Mom . . . "I did not appreciate her enough while alive, but wish I had spent more time with her."  

Although the disease of Alzheimer's is so long and drawn out and sometimes very difficult, I will forever be grateful for the big chunk of time that I have had to take lots of photos, video, make memories and to really appreciate her and her life while she is still alive!  

Love you forever, Mom! 

"I'm struggling with nothing to do!"

January 26, 2014
 

Mom and cute niece, Ashley 2009
(Steve's daughter)

A little over a week ago I went to my parent's house to spend some time with my Mom and to work on our Photo Organizing Project with my sister Katie -- the task the two of us have taken on where we are going through literally thousands of photos that my Mom has taken throughout the years, and has put into over one hundred albums.  It's a project that might take us a few years to complete (at the rate we are going), but that's ok because we are in no hurry and are having fun in the process.  I love looking through all these priceless photos and traveling down memory lane over and over again!  I know that I definitely got my love of taking photos from my Mom!

There are a few things I observed as I sat there at my parent's kitchen counter, taking photos out of albums and putting them in various piles.  I noticed that my Mom sometimes wanders around their house aimlessly, not knowing what she can or should do.  If there are dishes to do, she will stop at the sink and clean up for a few minutes, but other than that, she really doesn't have any way now of keeping herself busy and entertained.  

My Mom was always a woman on the go . . . going to tennis matches, going to luncheons with friends, making dinners, homemade jam, sweet rolls, volunteering at various places, teaching nursing careers classes, reading books, visiting someone, shopping til she drops, driving kids and grandkids places, preparing talks or lessons for church etc.  This is not the life she is used to with no freedom, nothing to do, and no way to entertain herself.  I could tell that it was bothering her that day.  She even brought it up to me when we went on a walk a little later.  She said to me, "I am really struggling.  I don't have anything to do!"  

Walking selfie with sis, Katie and Mom!

   
It breaks my heart to see her like this and I don't know what to say to her to make her feel better!  What are some activities that people can do at this stage of the disease?  She can't read a book or the newspaper, cook, write a letter, paint, type emails, drive herself places, or do hardly any of the things she has done for the last 50 years! Her ability to play piano is mostly gone, and watching tv shows or movies is no longer fun for her because she doesn't follow what is going on and doesn't seem to hear it very well.  Besides going on walks, I need to find other things that we can do, or that she can do at home.  My older sister Paige just suggested reading short stories with her . . . . and that's not a bad idea!  Any other ideas?  If so, please share! It kills me to watch her pacing her house like that, and to think it is probably what she does every single day!

I also observed that day that my Dad seemed extra mellow and seemingly tired and maybe even a little sad.  No doubt he's tired and I'm sure gets down at times!  He tries to keep his head up and stay positive but I know this is such a difficult time for him!  I don't know quite how to help him more, or how much longer he can go on like this!  I'm sure that he feels the pressure to keep her entertained, and I know that she follows him around for much of the day and talks about crazy ideas all the time like about people stealing her clothes and wanting to go home.  I've watched her do it.  It's almost as if she's also afraid he's going to leave her or something . . . and this is also something that she mentioned on our walk last week.  She said, "I think Mike is going to go back to his wife and I don't know what to do.  What would YOU do?"  Of course I don't know quite how to answer questions like that!  Or she'll make a comment like, "It's so difficult having a boyfriend that is so controlling of me.  I need my freedom!" I honestly don't know whether to laugh or cry sometimes!

The loving and patient Mafi, January 2015    

My last observation during last week's visit was just how kind people can be!  In the few hours that I was hanging out at their house, I watched Mafi and her daughter Salepa, the gals that come in and help for a few hours each day, as they love and serve my Mom and my Dad.  They hug everybody and radiate such love and care.  Yes, it's their job and they are getting paid to help  with my Mom and around the house, but I love how they do their work with seemingly genuine love and concern.  

During those few hours I was over there, two of my parent's neighbors came by bringing treats, showing that they care and were thinking of them.  One cutest neighbor, Liz, came over with a plate of sweet rolls and just said she was just dropping by to say 'hi', and gave my Mom a big fat hug, and my Dad a hug too.  The other neighbor brought a bag of grapefruits . . just because. 

When people serve my parents that way, I feel that they have served me too!  I find that I feel the same happiness as when I see that my kids are being loved and cared for by others.  I so appreciate the kindness of people for my family at this difficult time!  It's amazing what one simple act of kindness can do!  The power of one random act of kindness is amazing and it makes me want to do more for others! 

I am thankful also to my Aunt Sandy (and Uncle Mike too) who take my Mom out every Wednesday for a few hours, and for my parent's good neighbors, ward members and friends who still include them in their social circles and try to help out as much as they can.  There are so many good people in this world, and I am so grateful for that!  Thanks so much for your kindness and love and support!  You lighten our load!         


I found a few fun tidbits from my Mom's journal from the 80's . . .
 
May 1, 1984

"Stephen (my youngest brother who was about 4 at this time) and I went to the zoo today all by ourselves . . in the rain.  We watched the monkeys for 10 whole minutes.  Stephen is very affectionate and stays close by me. 

Mom and the babe of the fam, Steve (as a teen in the 90's!)

Today the phone rang and Stephen answered and said, "My Mom is on the toilet."  I laughed all the way to the toilet . . oops I mean the telephone, wondering who was on the other end.  She was laughing too and thank goodness it was Margo Cook." (neighbor two houses down their street)

Just a note to all of you kids in case your read this someday . . . I LOVE YOU . . remember that!  The church is true -- remember that too!"

November 9, 1984

We had a "poor taste" party at Karen and Leon P.'s house with our dinner group and it was hilarious!  We all got an invitation on scratch paper that had her grocery list on the side -- tampax, jello etc.  When we arrived, the Petersons were not even there -- they were late.  And there was a large glob of dog poo on the front porch.  The Larsens brought all of their kids, Liz H. wore a white sheer blouse with a black bra, I wore a tennis dress with my garments on and wedge tennis shoes, and then I put ketchup on the back of my dress, and Mike wore a tux with his fly open.  For dinner we had tuna casserole, generic green beans and jello, and a twinkie with strawberries and whip cream was our dessert.  We went swimming in their pool, after watching deer hunt slides and home movies.  (What a great idea!  I'm sure there was a lot of laughter that night!) 


February 8, 1985
 
Stephen, age 4.75, has had a bad month . . . a broken collar bone, cut cheek from falling off his scooter, and a cut eye.  He looks like a battered child and I will probably be reported for child abuse.  Since Michael (my other brother) was responsible  indirectly for all of Stephen's injuries, he took Stephen to school for show and tell.  It really was funny! 

(Reading these journals reminds me of just how full a life my Mom has lived!  She was one busy woman who lived a life of service to us, her kids, and to many many others!  I love to read about her joys, her normal frustrations and her strong testimony!  She is one great lady and I am lucky to have her as my great role model and Mom!)

"Please take me home!"

January 9, 2015

"I want to go home!" seems to be the main theme of the month with my Mom!  She keeps collecting her coat and a pile of blankets and clothes in her arms and telling my Dad she wants to go home . . and even when she IS home! What is this home she is talking about?  We're not exactly sure, but we believe it's her home that she lived in with her parents and brothers and sister fifty plus years ago!  

This disease is the most interesting disease!  Have I said that enough?  It's almost as if all of her current memories - her memories from the last 50 years - are slowly being erased . . . and she is now back in her twenties when she was looking for jobs and living amongst her grandparents and parents and siblings.  She's not remembering many of the people in her current life from the last 50 years, but talks about her parents and siblings as if it's 50 years ago! So strange!   

My older sister Paige and my Dad are the ones that see my Mom the very most.  They are with her daily.  And also Mafi and her daughters are there most days of the week to help keep her entertained and to help keep the house in order.  Both my sister and Dad tell me that my Mom seems to have taken a pretty big turn for the worse since Christmas.  "She is getting bad!" they say.  

Have you heard of the term, "sundowning"?  I think I've mentioned it before on this blog, but it is defined as "a psychological phenomenon associated with increased confusion and restlessness in patients with some form of dementia.  Most commonly associated with Alzheimer's disease, this term was coined due to the timing of the patient's confusion.  A multitude of behavioral problems begin to occur in the evening or while the sun is setting. Research shows that 20-45% of Alzheimer's patients will experience some sort of sundowning confusion." (From Wikipedia)

My Mom has been "sundowning" for quite some time now, but my Dad says that it is no longer occurring just at night, but now seems to be on and off all throughout the days too.  "I'm not sure what to do about it," he says. "She is getting so hard to handle sometimes . . . she is so confused . . and gets so angry and agitated . .  "  I think my Dad is going to look into getting some meds that might help her to settle down a bit. My fear is that she will get to the point of being too hard to handle at home and will have to go into a home at some point. I really hope and pray it doesn't get to that point because I remember conversations with my Mom when she would tell me that she knows what can go on at those care centers . . . I'm assuming she was talking about abuse of some kind . . and she doesn't want to go to there!  My Dad is in a hard spot too because he doesn't want to feel the guilt of abandoning her, but doesn't know how much longer he can do this every day!   

This is the time in the disease that I have been dreading the very most . . . when she is forgetting all her friends and family and when she is getting hard for my Dad and caregivers to handle.  I pray daily for tender mercies . . . for my Mom and for my Dad.  I hope that her wishes to "go home" are granted to her sooner than later!  That's what she desires . . I know it is!    

A "selfie" on my 46th birthday . . . January, 2015

Yesterday was my birthday and I drove in to go to lunch and spend some time with my parents and a few of my sisters.  After lunch, just my Mom and I went on a little walk down and around the park by their house.  It is so strange . . . in one sentence she will be talking about how worried she is that "Mike" (my Dad) is going to be leaving her and going back to his wife . . . "What would you do if you were in my position?" she asks me . . . and then in the next sentence she will tell me how glad she is when I come to spend time with her.  She said to me about three times, "I am so glad that you will come and do fun things with me!"  I knew when she said that, that she clearly knew who she was talking to! One minute she seems so with it and then the next minute she is clearly so confused! 

Yesterday, back at their house, one minute my Mom will be nuzzling up to my Dad with her nose in his cheek, and joking around with all of us, just like a wife and Mom would do, and then the next minute she is asking my Dad when he will take her home, as if he is a perfect stranger to her.  It's so crazy!  

I am so happy that I get to spend these precious moments with my Mom!  I will forever treasure them!  And I know the good times will continue even after this life.  I've mentioned before that my Mom and I have always joked that we are going to dance and sing together in the next life, and of course hike and bike together too!  We may joke about it, but I'm really seriously looking forward to that!  

The thought also occurred to me the other day that my Dad is not going to be around forever either and I can't forget to make just as much effort to spend time with him too!  I love them both to pieces! 

NO REGRETS is my motto!      

 
In my Mom's journal, I found the story of how my parents met and got together, and so I thought I would share the fun story here . . . as written by my Mom.  Interestingly, my story with my husband is pretty similar to theirs, as we also met and started dating our junior year in high school, and I also wrote him on his mission!  Here's the story . . .  

Mom and Dad in the early 60's!

     "During my Junior year at East High School, I took an American history class from Rose Santi.  She announced one day that she was going to take two people from each of her four classes to be on a special committee to write a group report on capital punishment.  She mentioned that we would need to meet together out of class since we were not all taking history the same period.
     The committee met one evening at the home of Carter Jones to discuss how we should proceed.  After a bit of discussion on the topic, we divided up the responsibilities.  I noticed one of our team members, Mike Preece, was on the phone trying to get a date for that weekend.  When the girl wasn't home, I teasingly said, 'Oh, don't worry, I'll go with you.'  We both laughed, but as I was leaving, he followed me out to my car and asked me if I would go to the movie, "Ben Hur" with him that Saturday night.  So that was our first date!

Cheerleading days at East High School in the late 50's!

     Mike and I always had a joking relationship, but sometimes it turned a bit sour. One night when I was asked by another boy to a dance, Mike found his car in the parking lot and hooked his blinker lights up to his headlights.  The results were blinking headlights all the way home.  The boy found out who played the joke and presented Mike with a bill to have the wiring on his headlights fixed.  (My Dad was a little mischievous fella! :)) 
     On another occasion when I was on another date, Mike talked my sister into helping him play another prank.  She left a note on the front door saying, 'Why don't you two come in and have a bowl of icecream?'  Then he and my sister were going to spy on us from the backyard.  Realizing that I was being set up, I hurried to the door and destroyed the note before my date could read it.  It's a wonder that I ever had a date! 

Wedding day, July 31st, 1964

     We continued to write while Mike was on his mission in the Northeast British Mission.  The summer after he arrived home, my Dad and Mom were called to preside over the Melbourne, Australia Mission.  At the time of the call, I was attending a sorority convention in Greenbrier, West Virginia.  While away, my father called Mike over to our home and told him that he had been called as a mission president, and would he marry me and live in their home?!!
     Mike agreed to the proposal from my Dad :), and then wrote me a telegram in West Virginia to see if I would marry him.  He had played so many jokes on me that I didn't answer either telegram. 
     When I flew home, he met me at the airport with a ring and asked me to marry him (for real!) We were married a month later, and my parents left the day after for Australia." 

I guess I have the American history teacher, Rose Santi, to thank for helping my parents get together . . . and the girl that turned my Dad down to go to "Ben Hur" that weekend long ago.  I love these stories!!