Angie & Jim

A Quiet Sabbathby Jim

Today was a nice quiet sabbath.  This morning Mom was sitting on the couch with her eyes closed and Dad and Jon were having a conversation about parenting.  Both of them thought Mom was asleep, but at one point in the conversation, when Dad said something about some particular point of parenting, Mom emphatically nodded her head in agreement.  Never underestimate the attentiveness of a mother.

After lunch, Mom had a nice long nap on the couch.  She was really sleepy at lunch, so it didn’t surprise us much that she slept for a couple of hours.  She seems to be sleeping more lately.  Mom woke up rather suddenly (on her own) and gave Angie a smile, who had just looked over at her.  We sat her up and sang a sacrament hymn and then administered the sacrament.  Afterwards, we sang a few more of Mom’s favorite hymns (she likes them all, so we can sing just about anything we know and it is one of her favorites).  After the singing, we took Mom out to the backyard to sit in the sunny, beautiful 71° weather.  There was a slight breeze which felt heavenly.  I read a bit to Mom from the book she made for us a couple years ago.  What a great testament of her love to her family is contained in that book.

For dinner, Angie roasted a delicious lamb that she found in the freezer.  When Angie first suggested it to Dad, he said he loved the idea, but only if we “had a full jar of mint jelly on hand.”  They had to dig around a bit, but huzzah, we found one!  She also made mashed potatoes and Mom’s glazed carrots.  Yum.

After dinner, we watched a documentary on the Polynesian Cultural Center that aired on BYU TV back in 2005.  It’s really neat, so if you’ve got some time, you ought to watch it.  Mom has always had a very special place in her heart for Hawai’i.  Before bed, Mom got a massage from Aunt Carol and then we tucked her in and sang to her for about half an hour.  Dad joined us and we all knelt and said a family prayer before saying goodnight to Mom.

I’d like to share a thought I had last week as we flew into Atlanta.  Each day Mom gets a little worse.  She’ll speak less, or eat more slowly, or be less responsive.  I knew it would be like this before coming out here to help, and it scared me to have to face that every day.  But then I had a Pres. Uchtdorf moment and I thought of an airplane analogy.  I thought that this experience is like trying to land a plane.  There are certain things you have to do to land a plane safely like slowing down and lowering the flaps and the landing gear.  Our job right now is to help Mom be as comfortable as possible and surround her with love and support so she can come in and land smoothly.  Thinking about that has given me strength during these last several days.

BYU TV special on the PCC: Beyond the Dream

Yes/No Boardby Jim

I wanted to share a funny story from yesterday.  While we were sitting out on the back porch, Kay had a great idea: since Mom has a hard time speaking, especially when she’s tired, we made her a little board she can use to point to her answer of Yes or No.  I quickly made her this board and brought it out to test it with her.  Angie asked the sample question: “Do you know this guy sitting next to you?”  Referring to Dad, who was on her left.  Mom got a great big grin on her face and pointed to the No side.  That got a good laugh out of all of us outside with her.  Then as a follow-up question, Angie asked, “Do you like this guy next to you?”  And still smiling, she pointed to Yes.

Most of the time Mom is able to say a word or two when we ask her a question, but sometimes she just can’t vocalize, so the Yes/No board had been quite useful.

Mom’s Yes/No Board

A Trip to the Doctorby Jim

We took Mom to see Dr. James Lah (pronounced “law”) today; he’s THE doctor in the greater Atlanta area for Creutzfeldt-Jakob Disease (CJD).  He was very kind, professional, and friendly.  He met Mom and then went over a history of the last six months with Dad.  Then he asked us to stay quiet while he talked to Mom.  He asked her questions, tested her reflexes, etc.  It was very interesting to watch, if a little disheartening at times.  She could say Dad’s name and Jim’s, but not Angie’s, or at least had run out of steam to say it.  She could repeat back a short phrase word for word, but gave the wrong answer for how many children she has.  He examined her muscle tone and eye tracking.  She was obliging and agreeable, but pretty mellow.  He then asked her if she would smile for him and she immediately had a huge grin on her face — that was darling.  He even got her to laugh a few times, which was very nice.

Finally, he asked Mom if she would mind if he stepped out with us for a while.  We left her listening to some quiet music with her lap quilt and Maggie (the sheep Pam gave her), and Dr. Lah led us into another exam room.  He confirmed what we have been anticipating: he is confident that this is sporadic CJD, and believes Mom is in her last weeks.  All her symptoms are classic for CJD.  In most cases the balance is affected first, and slowly becomes worse.  Other symptoms follow and accelerate as the disease progresses, including difficulties with muscle control, memory, and concentration.   He also said that her MRI was “practically a textbook image” of CJD characteristic features.  Looking back to her MRI in November, he said that he could see the very beginning indications, but that it would have been practically impossible to notice if you weren’t looking for it.  He added, though, that he believes it is better we didn’t know yet, so she didn’t find out early enough for it to weigh on her.  In his experience, earlier awareness of the severity this condition is not helpful to the patient because of the way their cognitive processes diminish over the course of the disease.

Dad asked about the possibility of identifying a cause — specifically, if this could have been brought on by stress.  Dr. Lah said that there is a possibility that her busy summer and/or traumatic autumn are completely unrelated to her condition, but he emphatically dismissed the suggestion that stress was the actual “cause.”  He believes the truth most likely lies somewhere in between: that stress may have “provoked or triggered something that has been brewing for a while.”  It’s also possible that stress accelerated the progression of her symptoms, but the disease works so quickly anyway that there’s no way to be sure.

He ordered some blood work (“just for the sake of clinical completeness”) to eliminate any of the possible autoimmune or viral diseases that sometimes mimic CJD, and received Dad’s consent to draw more for research.  Unfortunately, because of Mom’s involuntary movements and low hydration, it took three pokes to get all they needed.  She was a trooper, though, and endured it patiently.

It was a relief to finally head home, and we were delighted to find on our arrival that Kay and Louise had been grocery shopping, bought Mom some flowers, and had dusted and vacuumed the house while we were gone.  Mom was exhausted and said she wanted a nap, but was too restless to actually sleep.  We only got a little dinner and some Ensure into her before we could tell she was pretty much done for the day.  Even the usual after-dinner routine of “Smiles for Life” and Studio C didn’t perk her up much, so she headed to bed early.

Carol arrived this evening, and we’re so glad to have her here.  She has a sweet, calming influence and a lot of insight from her experience as a nurse.  It will be fun to have both her and Kay with us for a while.  We’re sorry to see Louise go tomorrow — her bright personality has a wonderful affect on Mom.

Your posts and videos to this community are very welcome; we keep Mom updated on all that people send.  She also enjoys very short phone calls, so if you have a few minutes you can call Dad and see if it’s a good time.  Your continued prayers are appreciated as well.

Breakfast for Momby Jim

Mom’s friend Louise is here visiting and together they went through Mom’s SAC of Fun scrapbook.  Louise is interested in starting a program in her family, so she was really excited to look through Mom’s books.  She especially liked Mom’s puppet show theater.  I’ll have to grab a picture of that for tomorrow’s post.  They also went through photo albums together.

We had an early dinner so that Dad could go pick up his sister, Kay.  We have normally fed Mom, but during dinner, she reached up and grabbed a spoon and clearly wanted to feed herself.  So, even though it was slow, we let her.  Angie and Louise sat and chatted together and with Mom while she finished eating and I got back to work.  I’m trying to keep regular California hours, so I usually work until pretty late.

While Dad was out picking up his sister, Mom watched some Studio C and a few other of her favorite YouTube videos (I’m pretty sure they watched Smiles for Life again).  Kay arrived with Dad just before Mom retired for bed.  We have a long day tomorrow, so I need to get to sleep.

Oh, I Love Waffles!by Jim

Mom had a nice relaxing day.  Mom got waffles and scrambled eggs for breakfast, one of her favorites.  She doesn’t say much these days, but Dad said the other morning, when he wheeled her up to the table for her breakfast, she said, “Oh, I love waffles!”  Thank you, Debbie for making them for her 🙂

This afternoon the weather was so nice that Dad and Rebecca took Mom outside to sit in the sun for a while.  They bundled her up so she wouldn’t be cold.  They sat outside for quite a while because she liked it so much.  Dad went in after a while and Rebecca got to spend some special quality time with Mom looking at the beautiful trees and appreciating the lovely world Heavenly Father gave us.

Rebecca also worked on repairing Ben’s quilt that Mom made today and finished everything except some of the hand embroidery, so we snapped a picture of that too.

Mom got a package and a few letters from friends.  The letters were very sweet and Rebecca read them aloud to Mom.  Pam sent a letter and a very cute stuffed sheep.  I believe they named her Maggie, but later when I asked Mom what the sheep’s name was, she said, “Sheepie”, so I guess that’s just her nickname.

After dinner, we went back to the couch to watch some Studio C, which got Mom really smiling.  It was good to hear her laugh and see a big grin on her face.  After we ran out of episodes, Angie showed her some movies she took from her phone.  I think Mom’s favorite was one of a gang of turkeys that wandered into our back yard.  Maybe Angie can share the video with this group so you can see it also.

After helping Mom to bed, Dad, Rebecca, and Angie knelt around her and had a family prayer.  Mom was already asleep, but the girls stayed a few minutes longer to sing her Joseph’s family prayer song and wish her goodnight.  Rebecca leaves early tomorrow morning, and we wish her a safe journey home.

Fierce Windsby Jim

Several people asked us about Mom at church today. She has only visited a few times in our ward, but she’s made an impression enough that they care about her and her welfare. It was very sweet.

One sister in particular told me about a comment Mom made in Sunday School that had an impact on her. This sister was teaching the lesson and remembers Mom pointing out that the Lord caused a fierce wind to blow the Jaredites to the promised land. In our lives we often feel the fierce winds blowing, but the Lord is just sending us to the promised land. This sister was going through some tough times and so this comment was particularly poignant. Mom’s perspective on the scriptures was always refreshing and enlightening.