Sweet Sabbath Experiencesby Jim

16
Mar/14
10:03 pm
0

Mom continues to get weaker each day. Yesterday we weren’t able to get her to eat or drink much of anything, but today we were much more diligent (especially Dad) in making sure Mom was hydrated. We really don’t want to put in an IV unless we need to, and as long as Mom can still swallow, we’ll keep giving her water instead. Mom was really a trooper and drank sip by sip throughout the day. Several times, Dad explained to her that we know it’s hard for her to keep drinking, but we want to keep her comfortable. She gave no indication of a response, so one of the times, Dad turned to Angie and said, “Well, at least she’s not resisting.” Angie replied, “That’s because she thinks you’re irresistible!” Mom’s eyebrow quirked up and her eyes widened a bit, making it clear that she had heard and understood the quip, and enjoyed it.

We listened to the soundtrack of Rob Gardener’s Lamb of God this morning. It is amazing how much the meaning of that beautiful music has deepened for us over the last year. We’ve faced some difficult challenges, and our testimony in the comforting and enabling power of the Atonement has been strengthened. There are times in our lives when our circumstances have a bitter sting, but we are never alone: the Savior Himself felt overwhelmed by what he was called to bear, and asked if the cup could pass from Him. But He endured and overcame, making it possible for us to do the same. Mom knows this, and we’re continuing to learn from her.

Rachel arrived this morning and she sat with Mom and told her some memories from her childhood. Afterwards, Angie, Rachel, and I sang to Mom for a bit. She got sleepy and so we let her nap for a couple hours after lunch. I’m pretty sure I got a faint smile from her after she woke up and Dad was giving her more water.

Something very special happened this afternoon when the young men from the ward came to bring us the sacrament. We were under the impression it was going to be just a few boys, but we probably had 16 young men in our living room. They started by singing a hymn and then administered the sacrament. Three of the boys were in Boy Scout uniform and after the sacrament, each of the three sat down next to Mom to personally express their gratitude for Mom’s service in helping them achieve the rank of Eagle Scout. One of the young men was very emotional and couldn’t hold back the tears. It was very touching to see the love these young men have for my mom. Dad said a few words on Mom’s behalf about her experiences in the calling. He said it was difficult for her — in fact, probably the hardest calling she’s had — but that she persevered, faithfully served, and now she has left a legacy in this ward that will continue to bless their young men for many years.

It is getting to the point that we can’t get any response out of her most of the time. Instead of nodding or shaking her head, she usually will just look at us. We’re also not sure how much her memory loss has progressed, though she continues to recognize family and friends. We were talking about Mom’s memory and someone asked Mom, “Do you remember you’re amazing?” We all we saw her faint nod, which made us all laugh.

This evening we sang to Mom again and we were able to sing 4-part harmonies. With five of us here, I got to sing bass with Joseph, which was fun. We sang some Easter hymns and some Christmas hymns tonight before sending Mom to bed. Since Joseph and Rachel just got here, the two of them sat with Mom in her bedroom to chat with her and sing a little more before Mom fell asleep.

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This Frail Existenceby Jim

15
Mar/14
11:03 pm
0

Mom said very little today.  Jon got a faint “good morning,” but she didn’t say much more than that all day.  We had some visitors this morning: Dad’s cousin, Ann, and her partner, Sue, stopped by to visit for a few minutes on their road trip to the east coast.  It was good to see them and to chat for a bit.

We took advantage of having a superb pianist in the house and had Joseph play for us this morning.  I could tell Mom enjoyed it.  Her smiles are getting fainter, but you can still see them in her eyes.  She always loved listening to Joseph play the piano.

After our concert, Jason’s wife and girls came to visit.  They sat with their grandmother and sang and told her stories. Tiffany held 4-month-old Claire on the bed near Mom, reaching out a tiny hand to stroke Mom’s and wrap her baby fingers around her grandma’s thumb.  Claire was very happy and Mom’s eyes were shining — it was clear that they both enjoyed the visit.  Mom sure loves her grandbabies.

Jon had to leave this afternoon.  His presence here has been a great strength to us.  Thanks for helping with our posts and for singing with us and everything else you did.  We look forward to your return next week.

I spent some time talking to Mom again, like I’ve done over the past few days, telling her stories from our childhood.  Even though she doesn’t talk, I feel a connection with her.  I could see her love in her beautiful eyes in the way she looked back at me.  Many times throughout the day, each of us tell Mom that we love her.  Days ago, she would always reply with, “I love you, too.”  I have begun telling her, “and I know you love me too,” because I can see that she wants to reply but can’t.

A funny and unexpected moment happened today while we were sitting around Mom’s hospital bed. She had people sitting on either side of her and someone was talking to her.  Dad came around the foot of the bed and Mom caught his eyes looking at her.  She followed him with her eyes for a moment and then suddenly, Dad ducked and pretended to sneak around the bed.  Mom actually laughed out loud at his antics, which surprised us all.

The following was written by Joseph, who offered to contribute to tonight’s post.  Thanks, Joey, for helping us document the day.

Mom is now to the point where she does not respond to most questions that you ask her. You might ask, “Are you thirsty?” or “Would you like to watch some Studio C?” and she will just look at you, and you know that she can hear you, but it seems very difficult for her to find a way to reply. That is, unless it is something she has a very strong opinion on, and then we may get a little quiver of her head to indicate a nod yes or no. We’ve experimented with other ways to communicate yes and no, like blinking, or squeezing, or pointing to the “Yes/No” sign, but all have become too difficult for Mom to coordinate at this point. So, for now, the best we can hope for is an occasional little hint of a nod or shake of the head to let us know her desires.

One humorous example of her feeling compelled to share her opinion was during “music time” today. I had exhausted all of the classical and sacred piano repertoire that I had brought to share, and I wanted to lighten the mood, so I had moved on to some musical theater selections. We sang “People Will Say We’re in Love” from Oklahoma and “I Whistle a Happy Tune” from King and I and many others. Then I came to “Nothing Like a Dame” from South Pacific, and I said, “Hey Mom, here’s one that Dad might want to sing for you!” I started to play the chorus and sang out, “There is nothing like a dame, nothing in the world…” Then, wanting to make sure Mom was enjoying this, I paused and turned to ask her if she wanted to hear that one. She gave her strongest and clearest “no” of the day: her eyes got wide and her head gave a little shake back and forth. Needless to say, we moved on to other songs!

Another fun and very memorable moment was when Dad joined in the singing and serenaded Mom, singing “On the Street Where You Live”. It was very sweet. Only problem was he started forgetting some of the words, and inventing new ones of his own, which got Mom smiling and even laughing out loud (which is rare now).

At one point in the evening, I had the special experience of sitting close to Mom and we just looked into each other’s eyes for a while. After a little while, I said “Hi, Mom”, and her eyes seemed to light up a little, as if to say, “Hi” back. So, looking deeply into her eyes,  I said it again, “Hello, Mom”. And her eyes lit up even more and it was like we both understood in that moment that I wasn’t saying hello to her body, which was unable to say anything back, but to her spirit, which was able to say “hello” back with wonderful clarity. Her spirit is still very strong, though it seems to be preparing to leave her body very soon.

Then, in a tender moment, Dad and I sat on both sides of Mom and talked a little about her approaching departure from this life. I can’t remember the exact words, but we both expressed to her our gratitude and love. We said that even though we would miss her sorely, we recognized and accepted that her time left on earth was short. Dad then offered to give Mom a priesthood blessing, which we proceeded to do, with Jason, Jim, and me participating, too.

After the blessing, it was getting close to Mom’s usual bedtime, so we all decided to continue our tradition of singing to Mom as the last thing we do before she sleeps. Tonight we enjoyed full 4-part harmony with Jim on melody, Angie on soprano or alto, Jason on tenor, and me on bass. We sang probably a dozen hymns, and then we told Mom it was time for bed. She somehow seemed reluctant, so Jim asked, “Do you want to stay up and do some more singing?” She gave a very clear yes with a little nod of the head, so we sang for probably another hour, even venturing out into a few Christmas hymns. It was a very sweet evening. It is amazing to me how many hymns have new meaning now, given our present experiences.

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An Open Letter to Alex Boyeby Jim

15
Mar/14
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

15
Mar/14
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

Filed under: Mom, Posts by Jim

Friday, Pi Dayby Jim

14
Mar/14
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

13
Mar/14
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

12
Mar/14
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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