An Open Letter to Alex Boyeby Jim

Sat
15 Mar 2014
8:03 pm
1

Dear Brother Boye,

I wanted to write to you and thank you for your music video Smiles for LifeMy mother was recently diagnosed with a rapidly degenerative and terminal neurological disease called Creutzfeldt-Jakob Disease. She began by having balance problems followed by losing her short-term memory. Smiles for Life was posted just before she lost the ability to remember new things. She has a special fondness for it because her oldest daughter and son-in-law are featured for just a moment in the video. They’re the couple that does a spin and dip during one of the dance montages. She was so proud of her children and loved the music and the message it conveyed. Multiple times a day she asked us if we’d seen it and wanted to show it to us, having forgotten that we’d seen it already. She liked it so much that we always just watched it again with her.

That was about 2 months ago; in the last couple weeks she has deteriorated to the point that she barely speaks and needs help with everything she does. Every day she gets a little worse. Her time with is us is very short; she will probably not live to see her 62nd birthday at the end of this month. We watch your video each morning because it always brings a smile to her face. It has brought happiness to our mother at a difficult time for our family. We do our best to fill her days with joyful memories and happy moments. It is a very precious gift to us to see her smiles and her laughs. Thank you for contributing to the happiness of our mother. I wanted you to know how much it means to us and how grateful we are.

Sincerely,
James & the rest of
The Hoffman Family

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An Open Letter to the Cast of Studio Cby Jim

Sat
15 Mar 2014
8:03 pm
0

To the cast of Studio C,

I wanted to write to you and express my gratitude for your videos on BYUTV and YouTube. In an unexpected and poignant way, your show has become very significant to our family. My mother was recently diagnosed with a rapidly degenerative and terminal neurological condition called Creutzfeldt-Jakob Disease. She began by having balance problems followed by losing her short-term memory. Back before she started showing symptoms in September of last year, she was already very fond of your show. My mother has always been very selective about what was viewed in our home and strove to provide good, clean, and wholesome entertainment for our family.

The stages of this disease progress very quickly and in the last couple weeks, my mother has slowly lost the ability to communicate. She’s degenerated enough that she requires help with everything she does. Every day she gets a little worse. One thing that she has not lost is her sense of humor. She is still able to laugh and appreciates good clean fun. Her time with is us is very short; she will probably not live to see her birthday at the end of this month. We try and fill her days with joyous memories and anything that makes her laugh brings us tremendous satisfaction.

Lately, we’ve been watching familiar Studio C sketches daily because they still get a laugh out of her. Mom’s favorite sketch is Shooting Booth, which makes her chuckle every time. I think she likes that one best because it’s about a protective mother. I can’t tell you how much it means to us that you’ve provided us with something that brings happiness to our mother during this very difficult time in our family. Every laugh now is a precious gift to us. Thank you for contributing to the happiness of our mother in her final days.

Sincerely,
James & the rest of
The Hoffman Family

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Friday, Pi Dayby Jim

Fri
14 Mar 2014
10:03 pm
0
Mom laughing at her daily dose of Studio C

Mom laughing at her daily dose of Studio C

Mom was quieter today. Each day she says a little less. She’s most talkative in the mornings after a good night’s rest. This morning Mom slept in and didn’t come out to the living room until mid morning. She had a little breakfast and Angie read to her from the Ensign. After our usual routine of YouTube videos (which still gets a good smile out of her), I read her some cards and posts people had written to her.

This morning I sat with Mom again and told her some stories I remember from my childhood. She looked right at me while I was talking to her, just like yesterday and I think she enjoyed it. I admit that I told her some of the same stories, but I don’t think it bothered her. There are moments like this, when she seems very aware and attentive; however, there are more and more moments when she seems to be in a daze, even though her eyes are open.

She wasn’t able to eat much today and drinking is getting pretty difficult. Sometimes she’ll surprise us, but more and more often, things are just too difficult for her. It is strange how she’ll just tense up when she’s trying to help us feed her. What I did today is feed her a bite or two and then tell her some stories to help her relax, which allowed her to open her mouth again, and then I could spoon something in. It makes for slow progress, but we do what we can.

Rebecca called this afternoon to tell Mom about her hibiscus, which seemed to please Mom. Later, we put on The Sound of Music, one of Mom’s favorites. We had a visit from Misty, our hospice nurse, who is always so kind and gentle with Mom. She came to place a catheter which will hopefully help Mom be more comfortable and minimize all the getting up and down.

When Mom has to get up to go to the table or to the bathroom, we have to help her up. Her legs have strength and when we steady her, she can put weight on them, but she has so little control over her body that she can’t stand or stay up on her own. It’s difficult to lift her safely and gently, so it’s helpful to be able to alternate between Dad, Jon, and me. I usually tell her I’m just giving her a big hug and that it is my favorite part of the day. She’s always been a really good sport about all the things we do to take care of her

After Misty left, Jon and Mom watched another of Mom’s favorites, an edited version of Joe vs. the Volcano, while I got some work done. I’ve been very fortunate that my employer has let me work remotely the last week and a half so we can be out here to help my dad. It has been such a blessing.

Normally we like to celebrate Pi Day, but with everything going on, none of us felt like making a pie.  Thankfully, the kind sister from the ward that brought us dinner brought us a pizza.  (That counts, right?)  “You’re probably tired of casseroles,” she said, as she handed us our dinner.  You probably don’t realize you did it, but thank you for helping us keep our tradition.

Joseph decided to fly out for the weekend, so tonight we kept Mom up a little later than her usual bedtime to wait up for him to arrive. We queued up a long list of Studio C and watched with her. Right near the end, Mom let out a big yawn, just like her stretch from yesterday’s nap. It was really strange to see because we’d spent a lot of the day trying to get her to open her mouth to eat or drink. Her yawn looked absolutely normal — a nice wide-mouthed yawn. Since yawns are contagious, maybe we should all just start yawning the next time we need her to take a bite of lunch.

Jason was over when Joey arrived, so he got to participate in the nightly singing. We had four boys and Angie. I hope she didn’t feel too overwhelmed by male voices. It was good to sing with everyone. We kept things a little shorter since it was already so late. We did sing the dehydrated carrots song, thanks to Becka who posted the lyrics.

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Every Word is a Giftby Jim

Thu
13 Mar 2014
10:03 pm
0

Today was another quiet day.  This morning we read scriptures with Mom, which I know she appreciated.  Afterwards, I fed her some applesauce, which she was thoroughly enjoying, and she actually said (with unusual clarity), “that tastes really good.”  Her words are usually difficult to understand and I can tell it takes her effort to say them.  A few times today she tried to say something, but all we could hear was muttering.

We watched our daily routine of YouTube favorites, which Mom always enjoys.  (One blessing of losing your short-term memory is the same stuff doesn’t get old!)  It is so good to see her smile and hear her laugh.  What a blessing it is that we can still brighten her day and that she is peaceful and comfortable enough to enjoy a little humor.

Later this morning I sat with Mom and told her stories from our childhood and others from more recent years.  I told her about our infamous camping trip to Hawai’i, our visit to the Tillamook Cheese Factory, trips to Disney World and Universal Studios, and many others.  I talked about how she loves to explore in the tide pools and find all sorts of creatures during low tide.  I told her about the time raccoons ate all our food while Angie and I were camping with Joey and Kelly at Oswald West.  She seemed to really enjoy all of it because she was looking right at me and had a beautiful smile on her face.  It really was a very precious time for me to spend with her.  Jon also had a similar experience with relating tales from his recent trip to Thailand — Mom doesn’t speak much but you can tell when she’s able to pay attention to you and she’s attentively listening.

Something strange happened this afternoon while Mom was napping.  Angie and Jon were out running errands and Dad was in the other room.  I was quietly sitting watching Mom while she slept.  She took a deep breath, almost a yawn, and then reached her arms up past her head in a stretch.  Her movements lately have been very slow and quivering, but this was fast, just like a normal stretch.  In that brief moment, if I hadn’t known about her condition, I wouldn’t have thought anything was wrong.  I realized it must be an indication of what is going wrong in her brain.  Her body is still quite functional, but her mind is progressively disconnecting from her ability to control her body.

This afternoon we got a visit from the local bishop and John, Mom & Dad’s home teacher.  John is a contractor by trade and spent time here several weeks ago installing railings and other safety features as Mom’s health declined.  The two of them stopped by to chat and thank Mom for the wonderful work she’s done in this ward, and especially in the scouting program.  They were so gracious and loving in their words of comfort.  It was neat to see how much they appreciate her.  It is a treat to see people I don’t even know caring so sincerely for my mom.

Tonight Mom wanted to go to bed a bit earlier, so we had more time for singing, which was great.  We were a little braver about trying to sing parts instead of just unison.  I kept asking Mom if we should keep singing and she kept nodding, so it must not have been that bad.  We got off topic a bit about how our family enjoyed making up silly lyrics to hymns or other tunes, and we tried to sing the Dehydrated Carrots song.  (Do any of you older kids remember the words to that one?) That got Mom giggling — she must have remembered it.  My favorite part of the day is singing to Mom at night.  Thank you, Rebecca, for starting that tradition when you came to visit last week.

The sweetest moment of the day was when I asked mom if she had liked our singing and she quietly said, “Yes, I love it.”  As we left the room, Jon put it best by saying that “every word Mom says now is a gift.”  Every smile, every chuckle, every word is a gift.

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The Next Phaseby Jim

Wed
12 Mar 2014
9:03 pm
0

We’re getting to a more difficult part in Mom’s care. It seems that more often than not, we can’t understand Mom’s responses. We know she is still conscious and has wants, but she is having a very difficult time expressing them. Eating is also difficult because it exhausts her, and if we take a break, she doesn’t get much to eat. The same goes for drinking: we can tell she is thirsty, but when she drinks too quickly or too much, she coughs a lot. Her coughs are getting weaker and we’re all a little worried.

In spite of these difficulties, we are still able to make her smile during the day. This morning, we had our usual routine of “Smiles for Life” followed by “Dana’s Dead” and “Shooting Booth”. Those got her to smile and laugh. The pictures I’ll attach are while she was watching those this morning (and again this evening). It is so good to hear her laugh and see her smile, and since she can’t remember having watched them earlier in the day, we don’t mind seeing them multiple times a day.

We ordered a hospital bed for her and have it set up in the living room. It is more convenient because we can sit and face her more easily for feeding and communicating. We had to do a little rearranging of the furniture, but we’ve managed to get things configured nicely. Mom finished watching Anne of Avonlea, Born Free, and then Tangled tonight. We can tell she really enjoys watching her favorites. I’m glad we all have such similar taste in entertainment 😉

(Jon’s addition:) Mom is speaking less, but she repeated a few things back today when prompted. We had some potato soup today, which I was describing to her (with cheddar cheese and bacon bits), and mom said “Yum!” Later when I asked her if she’d prefer some more “chocolate milk” (actually Boost) or more potato soup she responded with “more potato soup.” Seems small, but since she’s saying so little it’s still nice to hear her talking. I also asked her today if she knew who I was and she said “Jon”, so I know she still recognizes us and knows what is going on around her, although there are more times now when we ask her questions and she seems unable to respond. (End of Jon’s addition)

We really got her to laugh tonight as we were singing to her. We decided to sing to her in the living room before taking her back to the bedroom. We had been singing a few songs and we got to the hymn, “Secret Prayer”. None of us were super familiar with it, but it has such a fun tune that we sang it with gusto. When we got to the chorus after the 2nd verse, I thought I would try the tenor part (which has a different rhythm from the melody), but I totally lost the notes and we stumbled for a couple lines and it sounded so bad that we all busted up laughing. It got a good chuckle out of Mom, too, which was hilarious. It was really fun to all laugh together. It took us a minute or two to regain our composure and then we all decided who was going to sing what and we finished the song. We sang a few more and then put her to bed. I recorded one of the songs, but it was a little dark, sorry. You may not be able to see it, but Mom was mouthing some of the words with us, especially on the first verse.

Thanks for reading and thank you for your love and support.

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A Dip in the Poolby Jim

Tue
11 Mar 2014
9:03 pm
0

I actually wanted to start before 3 PM where Angie left off.  Something very cute happened this morning after breakfast.  Jon and I had just laid Mom down on the couch for a rest (breakfast is pretty exhausting) when Jon grabbed a pillow and said, “Pillow fight!”  Then he very gently “hit” Mom in the stomach with it.  That got Mom to giggle.  He then touched the pillow to her face, which made her laugh even more.

Another sweet moment happened while Mom was resting.  Sometimes when she lies down for a nap it’s difficult for her to relax and close her eyes, even though she’s tired.  We turned on some of her favorite music and and “How Firm a Foundation” from Roger Hoffman’s album came on.  Jon started quietly singing to Mom along with it and to his surprise she began singing as well.  She struggled to form the words and to voice similar notes and rhythm.  Many would not consider it much but in her state it is a precious exertion that she is willing to expend for the hymns she loves so much.

After Mom’s short rest, we put on some YouTube and showed Mom her favorite music video, “Smiles for Life”, by Alex Boye and then one of her favorite Studio C sketches, “Dana’s Dead”.  We had an incident last night where Mom coughed and sputtered a bit while we were getting her water before bed.  It got Dad a little wet, and afterward Mom thought it was pretty funny.  It reminded Dad of “Dana’s Dead” — that really gets her laughing, which is why we watched it today.  You’ll understand when you watch it.  I’ll include a link below.  As she usually does, Mom loved it and laughed out loud as we watched.  The picture of her on the couch with a huge smile is while we were watching it.

After Mom’s sit in the sun, Carol noticed that she was pretty warm.  Angie went to help change her into something cooler and jokingly suggested that Mom go for a swim in their little indoor pool.  Much to Angie’s surprise, Mom’s eyes lit up and she nodded and it was clear she wanted to.  A couple days ago we suggested it, but she was scared to try — but not today.  So, they put her in her swimsuit and we brought her to the pool.  It took all of us helping to get her into the water safely, but once she was in, she loved it.  I think it really helped to loosen her up.  Her arms and legs tend to get stiff during the day and floating in the pool seemed to be relaxing for her.

This evening Mom smiled and laughed along with Jon as they watched Anne of Avonlea.  (Yesterday they watched Anne of Green Gables.)  It really is the perfect thing to watch with Mom right now.  It’s such good wholesome entertainment and an old family favorite.  Since we’ve seen it so many times, it is easy for Mom to follow along and she seems to really enjoy it.

We ended the day again singing Mom to sleep — or at least, singing before she went to sleep.  I think she likes staying awake to listen to us, so we have to stop so we don’t keep her up too late.  We always either start and/or end with the Family Prayer Song Joseph wrote a few years ago that she loves so much.

Thank you all for your love and prayers and support.

Smiles for Life: http://youtu.be/Zz3ZbP0IF7A
Dana’s Dead: http://youtu.be/5BxyeGdCyD4

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The Master Editorby Jim

Mon
10 Mar 2014
10:03 am
0

We had an interesting chat over lunch yesterday that I wanted to share: we started talking about seeing our lives after we die.  Dad told Carol that in most recorded near-death experiences the individual usually sees their own life play back.  Jon started talking about how interesting it would be to watch a playback of our life.  Not so much from a near-death experience perspective, all in a flash, but just if someone could put together a movie of our life.  He supposed that you could make someone look like a real jerk or a saint just by how you choose to “edit” their “footage.”  We started talking about how our own memories are somewhat selective and that a movie (edited by someone else) could be very eye opening to someone about themselves.  Carol then suggested that the Atonement takes out the bad parts.  I said that makes the Savior the best editor for our life movies, and that the Atonement is what makes it possible.  We all agreed that Mom’s movie would be the longest of all of ours, having the fewest parts removed.

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