SCA7 Through My Eyes

The final ten years of my mom’s life were particularly difficult. It was hard on so many levels. In a way it scares me to write the final post of my mom’s life because this will very likely be my own fate, unless a miracle happens. The silver lining through out this last period is love. Not just any love but charity, which is the pure love of Christ. My mom needed a lot of help, most especially from my Dad, and us, her family, and also the many people around her that had to step up for her. What resulted was a wonderful outpouring and feeling of pure love. My dad now says that he came to realize that this is the purpose of life, for us to learn godly love.

“Charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in truth, beareth all things, believeth all things, hopeth all things, endureth all things.

Wherefore, my beloved brethren, if ye have not charity, ye are nothing, for charity never faileth. Wherefore, cleave unto charity, which is the greatest of all, for all things must fail–

But charity is the pure love of Christ, and it edureth forever; and whoso is found possessed of if it at the last day, it shall be well with him.” Book of Mormon, Moroni 7:45-47

Around 2004

The last ten years of my mom’s life began with my parents becoming empty-nesters. My youngest sister, Aubree, moved into an apartment by BYU with our cousin Callie where they were both enrolled. I got married in April. My brothers Luke and Dan were home from their missions, going to college at BYU as well. And Josh, the oldest, was married and had one child, Maddy (the first grandchild). My mom LOVED her grandchildren! Life really was good, but the disease made things hard.

With the disease worsening, my mom’s Jazzy or electric wheelchair became too hard for her to operate. Her eyesight and deteriorating coordination made it hard to avoid objects and obstacles. It was also much more difficult to get in and out of the Jazzy to do things like gardening. Reluctantly, she gave it up and began to use a regular wheelchair. It was hard for her to give it up. Although, she had worried at how weak her legs were becoming due to lack of use while sitting in her Jazzy. Transitioning to a regular wheelchair, she removed the foot rests and used her legs and feet to get around. This now gave her legs daily exercise, and she enjoyed this. Sadly, it was during this transition that she had to give up gardening. My mom knew that my dad did not enjoy yard work, and all the kids, her helpers, had moved out. And so her big flower beds by the front door filled in with grass. The garden beds in the back yard were also emptied. I think my mom was probably grateful that her eyesight was bad enough that she couldn’t see her empty flower beds.

https://www.youtube.com/channel/UCO8APm728uoozLpgCZiTXEQ

My parents developed a good system at home for meals and cleaning. With the yard now simplified, they also simplified the cooking. Costco sells really good, preassembled meals that can be placed into the oven, crock pot or microwave. Thus, easy cooked meals from Costco became their go-to. For Sunday dinners with their college kids, including their spouses and children and any other family in town, they developed a factory like approach to serve such a big group. The meal was usually a crock pot roast, mashed potatoes from food storage potato flakes, Rhodes’ orange rolls, fresh pineapple and a veggie soaked in butter. Together they were quite the team to feed such a big crowd each week. My dad would say, “Cindee was the brains, and I was the hands.” During these years, my dad also had to help more and more with the cleaning, but my mom tried to help out as much as she could. It helped that it was just the two of them at home.

As the disease took away abilities, my mom and dad looked for things she could do to continue enjoying life to the fullest, so they adapted, got out of the house and still experienced much. For example, she had to give up scuba diving. Her last dive was in Hawaii with my dad and her father-in-law, Jack, and they saw the giant manta rays. As scuba diving became too hard for her and unsafe, she turned to snorkeling instead. And when that became too difficult, she and my dad did more cruises, something still very enjoyable from a wheel chair. She enjoyed all the food, shows and even the sights as most places had handicap accessibility. The next three years they went on one cruise each year. In 2004, they went on a Panama Canal cruise with their parents. In 2005, they went to New England, and in 2006, they went on a Baltic cruise to Russia, Scandinavia, and Madagascar with Aubree and my dad’s sister’s family. She also traveled with my dad when he traveled for his work. In 2006 and 2009, they went to China and Dubai, respectively. My mom and dad knew that if they had something exciting to look forward to, it made enduring the disease easier. My mom and dad always had a fun vacation on their calendar (and many times more than one!).

When my parents were not on vacations, they kept busy getting out and having fun together. They discovered that the nearest movie theater offered free movie tickets to those in wheelchairs and to the person accompanying her or him. So every Friday morning my mom would call the theater to hear what new movies they were showing. Then that week they would go watch all the good movies. I think they saw almost every movie not rated R for several years. Eventually that theater stopped its offer, so my parents stopped attending weekly. In addition to movies, another thing they enjoyed doing together was fishing. My dad loves fishing! He goes all the time, and he figured out a way to take my mom along. He found a fishing rod with a giant reel on it. Even with my mom’s poor coordination, she was still able to work the reel because it was so large. When my did lake fishing, he used a fishing float tube. If my mom came, he would tie their tubes together, and he would steer them around the lake fishing. My mom loved doing this with him, and she surprisingly fared quite well. She meticulously keep score of the number of fish they each caught. Then, when we kids would call home, she would brag how that week she caught more fish then my dad, an impressive feat given my dad is practically a professional fisherman. I think he has far surpassed the 10,000 hours of practice. So even with a very limiting disease like SCA7, there was still a lot in life to enjoy. My dad helped make my mom’s life so good.

Life was good, but it was about to get real tough. My mom loved to talk on the phone with her family and friends. While talking on the phone to others, she would move around the house in her wheelchair, using her feet to power the chair. One day while talking to a neighbor and simultaneously wheeling about the house, her front wheel went over the ledge of the stairs leading to the basement. She and her chair tumbled down the stairs. My dad heard the fall and subsequent screaming as he ran to her. He found her lying at the bottom of the stairs, screaming in pain with her wheelchair nearby. He immediately called 911, and when the ambulance arrived, the paramedics transported her to the hospital. The doctors took x-rays of her back, but they reported that she was fine. Nothing was wrong!? My mom was still experiencing severe pain, so the doctors on staff at the time sent her home with some pain medication. The neighbor with whom my mom was speaking when she fell happened to be married to a doctor, and they came by to see her after she returned from the hospital. Our neighbor doctor could tell that something was wrong. He was shocked that she was sent home and told that nothing was wrong. My mom and dad went back to the hospital, and this time it was discovered that she had crushed her vertebrae (in three places). She went to a radial specialist that filled her crushed vertebrae with a fluid to put her spine back in place. Afterwards, my mom spent several weeks on her back in bed, plus several more months of pain and being careful, waiting for her spine to heal. The doctors prescribed Lortab to cope with the pain. When she first took it, she started to hallucinate. It was so bad that she screamed and tried to sit up when she was supposed to keep still. It was scary to see and a great relief when it wore off. After this, my parents never wanted to try Lortab again, and instead used Percocet. It was a long, hard road recovering from this accident. This happened to be the same year (2006) that they had their Baltic cruise planned. My mom had about four months to heal sufficiently in order to go on the trip. By the time of the cruise, she felt well enough, and they were able to go and have a really good trip.

The emotional aspects of the disease became as challenging or more so than the decline and loss of physical abilities for my Mom. For a time, roughly five years, my mom had been taking Prozac, an anti-depressant, and it worked well. However, it had some side effects that bothered her, so one day she stopped taking it. She did not tell my dad, and almost immediately she began to feel very anxious. She became upset and very difficult to reason with. In this state, she could not lay in bed for long and had to be in her wheelchair, pushing herself around with her feet. Sleeping was difficult. She just cried because she felt so upset. After this went on for a few days, my dad discovered that she had stopped taking her Prozac. He persuaded her to resume taking her medicine, but oddly, it did not help calm her down. She still could not sleep and was very upset. It was like she was having a never ending panic attack! My dad said that she went three days without sleeping at all. It was a very hard time, and she could not be left alone. We had another neighbor that was a neurologist. They went to see her, and she performed a battery of tests on her. She sent my mom home with medicine. It helped her to sleep for short periods of time, but she was still really upset and crying much of the time. After a week or so, the neurologist prescribed a different medicine and the results were essentially unchanged. It helped a little but not enough. They tried several different medicines over a month or two period, but again, none of them worked. My dad finally had the inspiration that they should just increase the amount of Prozac. He shared this idea with my mom’s regular doctor, and she agreed. She also thought my mom needed an anxiety medicine to help her sleep. In the end, she increased her Prozac levels from 20mg to 80mg and prescribed Temazepam before bed . It worked!!! She finally calmed down and could sleep whole nights through again. It was such a relief!

Even though my mom calmed down and slept better again, her emotions remained fragile. This had been the case since her depression started, but it slowly worsened as the disease progressed. Her triggers became much shorter, and she would lash out more quickly. For example, my dad loved to fish, and he went often. My mom would get annoyed and emotional that he was going fishing once again, and she would passionately and even angrily shout things like: “You love fishing more than you love me! If you had to choose between fishing and me, you would ALWAYS choose fishing!” And she would continue on and on. None of this was true. Yes, my dad enjoyed fishing and spent lots of time doing it, but he also did so much for my mom daily and gave of himself to make her happy. I’m sure it was tempting for him to lash back. I know I did it at times, and I sincerely regret it. Not saying my dad was perfect, but he gained perspective that helped him. He once told me that he realized that it was not my mom saying those things, but it was the depression. Many times I witnessed my mom get upset with my dad and lash out at him, and in return he would often make a joke about it and lighten the moment. For example, he would laughingly say, “Yep, I sure love fishing.” My dad also lovingly teased my mom every so often, especially when she made shopping trips to Costco. She usually came back with super-sized desserts and candy, something she loved. He then told whoever was at the house afterwards that Cindee was famous at Costco and the workers knew her by name since she was such a regular. He would make other playful comments like: “It looks like you bought the whole store!” or “I am going to have to take away your membership card.” She usually had her set of good comebacks. Despite the difficulties in controlling her emotions, she did have a lot of love and gratitude that often shined through.

My mom’s day to day life was very restricted due to her many failing physical abilities. She could not get out of the house on her own, and household work was also becoming too difficult. This gave her a lot of time with a very limited list of things she could do. This is one of the most depressing parts of this disease. You do not get to spend your life doing things you really want to do. If she could, I bet she would have spend her time helping out her kids and grandkids because family meant everything to her. That said; my mom did do some good things with her limited list. Of course there were her regular TV shows that she watched each day: The Price is Right and Oprah. In addition, she did some more enriching things like making use of the Library for the Blind. They sent her a large tape player with extra large buttons to control it, so people like my mom could easily operate it. Those utilizing the Library would call it, and a worker would send you as many books on tape as requested. Its book selection was fairly extensive and all free. My mom once requested that it continually send her all biographies and autobiographies starting in alphabetical order. She probably listened to a hundred plus biographies and learned about ALL kinds of people. She would often ask others for book recommendations, and then she would request and listen to them. If she found an author she liked, she would listen to all of his or her books. She especially enjoyed mystery books. This library reported that it sent her 501 books in her lifetime. The Church of Jesus Christ of Latter-day Saints also sent her the scriptures and the monthly Ensign magazine on tape. Each day she would listen to the scriptures and each month to the entire Ensign magazine (as soon as it arrived). My dad joked that she was the first member of the church to read the Ensign and do her visiting teaching each month. Thanks to her tape player, my mom was very well read!

Another very enriching activity for my mom was spending time with her many good friends. It went both ways. She would call her friends and neighbors to set up monthly visiting teaching, weekly shopping trips, or just to talk. And in return, she had many great friends that served and helped her out. There were so many that I cannot name them all, but I will mention two to three to show examples of their selfless service and genuine friendship. Tami and Laura were assigned to be my mom’s visiting teachers. They became familiar friends by coming by often to come help my mom with whatever she needed. Tami was a nurse, so she new how to help someone like my mom with physical challenges. In addition, she put together some CDs for my mom to listen to, and she helped my mom decorate our front room with curtains and pictures. Eventually our church congregation geographical boundaries were changed, and Tami and Laura were not in my mom’s ward anymore. Laura, however, continued to visit, and she stayed very close friends with my mom. She helped my mom weekly for many years…all the way to the end of my mom’s life. Laura, a super healthy woman, would daily drink a “green drink” packed full of natural vitamins. Somehow she persuaded my sweet toothed mom to also drink one daily. Everyday she would bring my mom a green drink, seriously every day! And on days that she could not come by, she would leave extras in the fridge. This lasted for years! It was amazing. Along with the green drinks, she would take my mom to a nearby nail salon to get a manicure every month. My mom always had her nails decorated for the holiday of the month. Her nails looked amazing, and the grandkids loved to see whatever was on them. Laura was also a good tennis player, and occasionally she would take my mom to see some of her matches. Most importantly though she also spent a lot of time just visiting with my mom. They had many good memories together. One other special friend of note was Celecta. She took my mom on many of her weekly grocery shopping trips and on MANY other errands. She actually passed away shortly after my mom. I know they are continuing their friendship in Heaven. Those women mentioned here and many, many others not named here definitely touched her life for good. My mom cherished her friendships with these special women; they were her ministering angels.

The disease continued to get worse, and there was yet another time when her emotions became too difficult to deal with again. My mom starting having panic attacks much fore often and severely. For example, once my parents chose to travel by plane for a planned vacation. Prior to this particular trip, on airplane trips my mom would put her hands on my dad’s shoulders from behind and awkwardly walk with him down the isle. It was probably quite the scene, and I imagine they hated all those eyes looking at them. After sitting, my mom would try her best to not go the bathroom. For the specific trip mentioned though, this routine became too difficult. The airline required that a special isle wheelchair be used. The flight attendants placed her in the chair and strapped her in. They would not allow my dad to help (something my mom was super-uncomfortable with since he knew how to best help her). Inconceivably they left her unattended, and she fell out of her chair! My mom became so upset that by the time she got to her seat she was crying and yelling out; she was having a panic attack. My dad did his best to calm her, but the flight was miserable. The loss of additional abilities also set her off. Examples included things like not being able to dial phone numbers or use the TV remote because of her lack of coordination. This meant more waiting on other people (i.e. to call her or to dial for her). When she started having a hard time pushing buttons on the TV remote, my dad searched for and found a remote she could do on her own. Seems like it had four super large buttons that she could navigate. This overall process of losing abilities, dealing with emotions, looking for solutions to problems, and then finding a new normal was hard, and it just kept happening. Soon enough she struggled to feed herself. She could not get off her bed unassisted or similarly off the toilet. As if these things weren’t enough, people started to struggle to understand her increasingly slurred speech. Dealing with these struggles led to panic attacks. Fortunately, she was able to sleep at night with the prescribed anxiety medicine, but the days became very difficult. Her doctor eventually prescribed clonazepam, a real strong medication to be taken when things were out of control and too hard. It worked well, but essentially knocked her out for 24 hours. She would sleep for much of the time, but when finally awake, she was like a vegetable or zombie – either quiet and just staring off into space or with extra slow and slurred speech. Neither my mom nor my dad liked these side affects. My dad only gave it to her when things were really tough. He named this medicine the “I don’t give a damn pill!” For a time this helped my parents cope with these tough situations, and it wasn’t needed too often. Sadly, after a year or two it stopped working. Her body became immune to its affects, and it no longer calmed her down. She learned to deal with it, and my dad did a lot to avoid her triggers and to try to help her stay happy.

My dad knew that one thing that helped my mom stay happy and up in spirits was getting her out. Too much time inside gets depressing. One thing they did together was bike rides. My mom’s poor balance prevented them from using their tandem bike, so my dad found a recumbent tandem bike that did not require balance. It had shoes that attached to the peddles, and my dad made a seat belt for her. Despite limited abilities, my mom could now go biking. They did this so often that they got in pretty good shape and became easily recognized among the Provo Canyon trail regulars. The bike was also so unique that people started to ask if they could take pictures of them on it. In addition to small local adventure, my dad also sought bigger, global adventures. My mom was still able to go on some cruises as one of the main events is eating great foods, one of her favorite things. She could also enjoy the music and shows at night and experience new places, even if she could not do much there. In 2010, my sister Aubree and I, along with our spouses, joined my parents on a Caribbean cruse. During this trip my mom needed someone to feed her, since she didn’t have the coordination and sight to get food onto her utensil and into her mouth. We all took turns feeding her throughout the trip. At the different stops, there were some things my mom could do like swimming in the ocean in her tube while others snorkeled or scuba dived. We all had a really good time on this trip, including my mom! Her last cruise was a Mexican Riviera cruise in 2011 with all her family, kids, spouses and grandkids. It was a large group, and we enjoyed our time together as a family. These activities and trips gave my mom something fun to look forward to and to keep her spirits up.

Fishing was another activity that got my mom out of the house; it was a big part of my parents’ life because of my dad’s passion for it. He took my mom with him whenever possible. As a professor, he took two months off in the summer, and during this time, he often took a long fishing trip to northern Idaho and Montana, where the fly fishing is excellent. His trip would be several weeks to a month long. My parents bought a large camper trailer for trips like this. For several years my dad persuaded his mom and dad to accompany him and my mom. My mom could not actually go fishing with him on these trips since there was a lot of walking involved. My grandpa, who also loved fishing, was my dad’s fishing partner, and my grandma would stay in the camper with my mom, helping care for her. She fed her, helped her into the bathroom, and assisted her in and out of bed. Everyday my dad and grandpa would leave early to fish, and my mom and grandma would spend their day in the trailer. It was too hard to get my mom in and out of the camper. They usually listened to books, watched movies and talked. My grandma also enjoyed working on crochet and sewing projects. While these trips were not easy for my mom or especially my grandma, they did it for my dad. My mom knew that he did so much to help her, so she was happy to go. And I know my dad was grateful for his parents generous help.

In addition to his big summer fishing trip, my dad enjoyed doing many smaller fishing trips throughout the year. Given the loss of abilities, it became too hard for my mom to fish in the float tube. However, she could still fish with him on Strawberry Reservoir in the family ski boat. Often thought my dad fished various rivers throughout the state. He would probably do a weekend fishing trip as often as once a month or so. When planning one of these 1-2 day trips, my grandpa and I would help out. My grandpa would come by my house (not too far from his) early in the morning to pick me up with whichever kids I had at the time, and then we would make the hour trip south to my parents’ home. I would then stay with my mom, and my dad and grandpa would take off fishing. Over the years, my kids and I were able to spend a lot of time with my mom while my dad went fishing. At this time, SCA7 had also started to affect my eyesight such that I was no longer able to drive. Other than that, I did not have any other significant limitations while caring for my mom. During these visits, my mom and I would eat together, watch movies, talk and walk (push her in her wheelchair) to a nearby park where my kids loved to play. I am so grateful for this time we had together. It kept our bond strong and alive.

Once while staying with my mom, she fell out of her wheelchair! She was at the point where she could not lift herself up after sliding down a bit in her wheelchair. My dad had to help her sit up straight in her wheelchair; he would have her put her arms around his neck, and then with his hands on her armrest, he would help to lift her up as she held on tight to him. On this particular day, I did my best to keep her sitting up. However, when I was in another room, she got too far down in her chair and slid backside onto the floor. She screamed and cried, not due to pain, but because of a panic attack. At this point in the disease’s progression, she was completely blind and couldn’t roll over unassisted. Sitting in a wheelchair, my mom could still use her feet to slowly push herself around a bit, but out of her wheelchair and on the ground, she was stuck (and blind). I could understand why she was so panicked. Unfortunately, I could not lift her up off the floor as I was many months pregnant with twins at the time. I called 911. This was actually a normal thing for us to do. My dad had to leave my mom home alone when he went to work, so he got her an alarm that she wore around her neck. If there was an emergency, she could push the button, and it would contact 911 for her. They would then come to the house to assist her. She pushed the alarm a couple of times previously when she fell out of her wheelchair, bed, or whatever. An ambulance and fire truck would both come. The service was free if the ambulance did not have to transport her to the hospital. As such, my dad told me to call 911 if my mom fell out of her chair. It is funny to think that seeing an ambulance and fire truck at our house was not a big deal. In this instance, after calling 911 to request help, I sat with my mom and tried to talk with her and to calm her down. She eventually did calm down, and emergency responders came and lifted her back into her wheelchair. This experiences taught me to stay calm (even when things around me got crazy) because it all worked out and I new it was all going to be OK.

Sometime later after this incident with my mom, I called her, and she was super depressed. Apparently, she fell out of her wheelchair twice that week while my dad was at work, and sadly she was not wearing her emergency button around her neck at the time. There was absolutely nothing she could do, so she had to lie there for hours waiting for my dad. Even with all of her good friends and neighbors, no one happened to come visit on either occasion. When I heard this, I just ached, imagining her lying there and remembering how panicked she was that day with me. It must have been so difficult for her, and worse still, it happened twice! My dad said that when he got home and found her on the ground, she was covered in tears and in a deep depression that she was struggling to escape. After this, my dad hired hospice to come daily to watch over and care for my mom while he was at work.

It It

Not long after this experience, I was again staying with my mom while my dad went fishing. During the stay, one of her friends came to visit, and as I knew her too, the three of us sat and visited together. My mom and I shared with her some of the strong spiritual experiences my mom had had with the disease in years past. After listening, she asked, “Now that this disease is so much harder, do you feel the Spirit extra close helping you?” My mom replied, “No, not really.” I was very bothered by this! I knew she wasn’t saying that she never felt the Spirit. She still daily read her scriptures and prayed, went to church weekly, kept her covenants and the commandments; I am positive she felt the Spirit to a degree as she did these things. BUT…she was saying that during this VERY hard time in her life, she did not feel an extra measure of the Spirit (which she and the rest of us really could use).

I went home and began to ask God questions or say in my prayers things like: “Where are you?” “When my mom was stuck on the ground, why didn’t you send one of the many faithful women around her to come help?” “I can’t see your hand in it all. Is the promise true that You will not leave us comfortless?” “All I see is my mom suffering, and oh how she longs for her sufferings to end!” Her sufferings ranged from small to large. Small and simple things had become challenging. Examples would be like the many times I would hear her in her bedroom, flipping through all the channels to find the show she wanted to watch. The up/down button was one of the few she could press on the channel changer. I would often go to her room to help her get to the channel she wanted. She be on something like channel 177 but wanted channel 2. Another small thing would be when she was struggling to find a book tape; after finally and successfully loading it into the recorder she would push play only to discover she blindly selected the wrong book. After a couple of attempts of this, she would call out for help. So frustrating! Things like this happened pretty much daily. On our phone calls, it was clear how little she could do and how much she needed help, yet she had to wait and wait and wait some more. I hate thinking of all the times she had to wait for someone to help take her to the bathroom. I personally hate having to hold it! Then there were the family memory making moments she missed out on. One time our family (my parents, their kids and grandkids) took a trip to Bear Lake, Idaho. She had to stay back in bed whenever we went out to play. She would listen to her books all day long, since it was hard for her to come with us. Everyone went outside, playing all day on the beach or in the boats on the lake. At meals and during breaks I tried to sit with my mom and talk with her. A few days into this trip, my mom asked for a priesthood blessing; she did not ask very often. I believe she was hoping to be healed, knowing she was nearing the end. My dad and three brothers gave her a blessing, but she was not healed. The next day, as I sat and talked with her, she told me that at her funeral she wanted it to be a party with a disco ball and dancing. Being freed from her disabled body would be something to celebrate. She said that she planned to be celebrating to the max, and she wanted us to be happy and celebrate with her. She truly wanted to be freed from her diseased body and the accompanying suffering.

All I could see was my mom’s sufferings with no relief, and I could not see the Lord’s hand. I knew He was there and that He loved us. I had had too many witnesses to deny His existence and involvement in the lives of His children. So I prayed and prayed that I could see His hand because He felt so distant and hidden. After a few weeks of this, I one day searched SCA7 on Google. I had recently told someone that I had this disease, and the next time I saw her, she told me they were so, so sorry for me. She had searched it on Google and was shocked at what she learned. Out of curiosity, I did the same and was also shocked. My heart ached as I watched videos of several people who had our same disease. They had been placed in nursing homes because they did not have family to take care of them. They looked so lonely and forsaken.

Instantly, my eyes saw and recognized God’s most lovingly, kind and gracious hand in my mom’s life. First and foremost, she had my dad. Together they raised a large family that was still a big part of their lives, spending time together often. My dad took my mom on many trips, traveling to different parts the world. All their many many adventures together made my mom’s life so much sweeter and exciting. My dad also consistently found ways to solve for my mom’s decreasing abilities so as to allow her to enjoy life along the way. For example, he helped find the jazzy, built the many wheelchair ramps around our home, purchased the tandem recumbent bike, designed and built the wheelchair buddy, bought her special fishing rod and a large keyed phone and remote, and planned and took her (and us) on many vacations that she could still enjoy. The list goes on and on. Plus, he was her caregiver. He hand fed her all her meals after a certain point, and he showered and dressed her each day. He put her in and assisted her out of bed; he took her to the bathroom several times a day. Then, he hired hospice to take care of her while he was at work. In addition, he shouldered home duties: cleaning house, meal and clothes shopping, cooking, and laundry (all these things in addition to his full time career as a BYU Engineering professor). Note that this wasn’t just for a couple years; my mom showed symptoms and suffered from this disease for almost 30 years. The last decade of her life, the care giving responsibilities were heavy. Not to be forgotten, over that period my dad was also especially good at taking care of my mom’s emotional well being, a big part of this disease. Nobody could cheer my mom when she was feeling down like my dad could. I have never met someone so resiliently optimistic. He has such a positive outlook on life. He is a brilliant realist, but he is also energetic and enthusiastic about experiencing the good this life has to offer. With how unrelentingly hard this disease is, I never saw or knew of my dad being depressed. He truly was a perfect match for my mom and all she had to face. I know the Lord had a hand in helping them to find each other.

Yes, my mom did fall to the floor and lie on the ground for hours waiting and panicing, but the Lord knew that my dad would come home, take care of and comfort her in a way that no one else could. He knew that she would be OK in life because my dad loved her and was deeply committed to her. On top of that she had children, a sister, a mother and in-laws who helped or were willing to help when needed. She was also surrounded by many wonderful neighbors and friends who did so much to serve my mom (and dad), like bringing them several home cooked meals each week. They did this for years. Importantly, the Lord was also always there for her to turn to in prayer, helping her find hope, peace, and comfort. Sure, the disease was extremely hard for my mom to deal with, but now I could see all the wonderful and good people and things that the Lord had put in place to help my mom endure her heavy burden. My mom truly was not left comfortless.

As mentioned, my dad had hired hospice to come help my mom on days he had to work. Hospice usually only comes to a home if a person is in the last year of their life. My dad knew that my mom was nearing the end and that she needed the help, so they came. My mom ended up living three more years, and fortunately, hospice continued to help during that entire period. Several nurses helped my mom during this time, and they were good to my mom. They came to know each other well. I even came to know some of them well, since I often talked with them while visiting and spending time with my mom. In addition to hospice, Sister Bailey continued to bring my mom her green drink each day and would often stay to visit. They had a special relationship. My mom also had other sweet friends that continued to help and visit her too.

In the last couple years of my mom’s life, she often used gratitude to stay upbeat. She had become fairly immobile, weak, and tired at this point. Most of her time was spent in bed napping and listening to books. Around this time, my family and I moved to Oklahoma because my husband took a job there. His parents lived in that area of the country. It broke my mom’s heart when we moved (and mine too!). Sister Bailey brought my mom chocolate each day for awhile after we moved to cheer her up. I would call my mom a couple times a week to stay in touch. It was hard though because her voice had become so slurred that her speech was difficult to understand, especially over the phone. Often I asked her to repeat herself and then guessed what she said. I hated how frustrated it would make her feel, so I only asked when I really needed to know what she was saying. A couple times on hard days my mom expressed her frustration at not being able to do anything. Then she would call back the next day to apologize and list her blessings. It would be things like: “I am grateful I can still listen to books and for the new remote dad bought me, so I can actually change the channel on my own.” Her list always made me awe at the power of gratitude. I frequently heard her list her blessings to me. It helped her so much.

On New Year’s Day 2013, my mom told me that her new year’s resolution was to live one more year. This surprised me because the end was close and also because my mom often spoke of wanting to die to be freed from her body. This then was her way of saying, “I am going to face this next year with a positive outlook.” And she did it! She lived about one year and three months more. Almost a year exactly before she passed away, my mom and dad took my sister Aubree and her family to an all inclusive resort in Cozumel, Mexico. They all enjoyed the food together, as well as the ocean breeze and the hot tub. In this final year my dad also took my mom on his fishing trips, since I was no longer able to watch her overnight. Once (and only once) he left her at a nearby nursing home; my mom absolutely hated it. From then on my dad would take my mom and their camper trailer. The nurses taught my dad how to insert a catheter into my mom, so she could be comfortable in the trailer while he fished during the day. He made sure she was comfortable, and he came back often enough to help her when needed. My mom was glad she could still accompany him, and she was happy with the arrangement. Although, there were a couple trips when she became violently ill; she vomited all night long. On one of these two occasions, my family and I happened to be visiting my parents and with them on the camper trip. It was terrible! When she vomited, she could not roll over, so she gargled in her throw up. Again, it was terrible! These trips ended early to take my mom back home. After talking with the nurses the second time, they put it together that it was altitude sickness. On both trips they were camped in the mountains at high altitudes, so my mom was not getting enough oxygen in her blood. This was the cause of her sickness.

In September of that year, my cousin Callie passed away from SCA7. My parents, some siblings and I met up in Snow Flake, AZ to attend the funeral. The morning before the services, we all went to the new Snow Flake temple. In the temple, I primarily focused on helping my mom, and I remember it being really hard for her physically. All she had to do was sit in her wheelchair for two hours, but even that was a struggle. She got really hot, despite a cool, well air-conditioned environment, and she kept slipping down in her chair. All she wanted to do was go back to the hotel to lay down and nap. After the funeral the next day, my mom was anxious to get home to her comfortable bed. I was struck with how weak she had become.

At this time my oldest brother, Josh, was living in New Zealand with his wife and four kids. They had been there about a year, and they invited my parents to come spend Christmas with them on the island. This is something my parents really wanted to do except that the idea of such an extremely long airplane flight made my mom very uncomfortable. The last flight she took didn’t go well at all due to her anxiety. As mentioned before, even being in her wheelchair for a couple hours at a time was getting hard. She also was starting to experience pain in her legs and back. Recently, her doctor had prescribed morphine pills her pains and discomfort. She only took them when needed. Knowing they could use these, my dad also thought of a plan to give her a strong sleeping pill, so she could sleep through most of the flight. With these two aids in place, they decided to make the trip. Their flight went fairly well thanks to the sleeping pill and morphine. They had a really great time in New Zealand. As my mom was surrounded by her grandkids on Christmas morning, she said it was her best Christmas ever! Maddi, Josh’s oldest was able to read to her while she was there, something Maddi had done for her previously when living close by in Utah. My mom also enjoyed all of Josh’s family’s favorite foods that they had discovered while living there. Another memorable experience was going to the ocean and enjoying the water in her tube with her family playing around her. Everyone thoroughly enjoyed and savored this last time they shared together.

After the Christmas trip to New Zealand, it became more apparent that the end was soon approaching. My mom continued to get weaker over the next couple months, and she also began to take the morphine pills more regularly to address her pains. Generally, she was less alert, and her speech was also very slurred. In March, we had a trip planned to Las Vegas, NV for an ataxia conference. Dr. La Spada, a doctor developing a drug to stop our disease, was going to be there, and we hoped and planned to speak with him in person. Right before leaving, my brother Luke’s wife, Melinda, had a third baby girl three weeks early! My mom had the opportunity and blessing to hold this new grandbaby before the trip. Luke remembers this time too because my mom was also able to very clearly say that she loved them all so much. Given her very slurred speech, this was a tender mercy. I flew to Utah to meet my parents, and we drove together to the conference in Las Vegas. There we met Aubree, her husband, Taylor, and son, Sam. That first day we did some sight-seeing, checked into our hotel, ate dinner and went to bed. At dinner, my mom wouldn’t eat anything; my dad tried hard, but she refused. She was very tired and went immediately to bed. We all slept in the same room, and during the night, my mom started breathing funny like she had a bunch of flem in her throat. It was a very unsettling sound. The next morning my dad could not get my mom to eat. Again, he tried real hard, but again, she refused. Before leaving Utah for the conference, my mom’s good friend, Carolyn, brought her some German chocolate cupcakes, a favorite. She ate one, and that is the last time I remember her eating anything. That had been more than a day ago, and now my dad could only get her to take a couple sips of water. That day we went to two conference meetings, and my mom was already tired and ready to leave. The meeting with Dr. La Spada was next, so she was going to have to endure. Towards the end of the meeting, my mom had become so uncomfortable that she started to cry out. I took her outside of the room to the hallway to help her and allow the meeting to go on without interruption. I think she was having a panic attack. I did my best to calm her down. I just kept telling her that it was OK, and that we would leave soon. It was difficult to see my mom so uncomfortable. Eventually, we went back to the hotel room, so she could rest. That evening my dad brought my mom down to the pool to watch Sam learn to swim. I remember my dad sitting with my mom. He could only get her to take a couple more sips of drink while also encouraging Sam to swim across the pool for $1.00. That night, while sleeping in the hotel, my mom’s breathing was terrible sounding with all the flem rattling in her throat. We have since learned this is called the “death rattle.” It is a very disturbing sound or noise. Even now I can still hear it in my mind when I reflect back on it. The next morning we said goodbye to Aubree and family, and my parents and I drove to their home in Utah. My mom was not talking much, but on the drive we were able to discuss her funeral and what she wanted for it. She told us that she wanted all five of her kids to speak.

When we got home, hospice came to the house, and we talked with them about my mom’s breathing and refusal to eat anything. They told us that her body was beginning to shut down and that she would probably pass away within the week. They informed us that she wouldn’t eat because she was aspirating, meaning everything she ate would go strait to her lungs. We knew she was not doing well at all, so this news did not surprise us. I cancelled my flight home to Oklahoma, so I could be with my mom during this time. She was becoming less and less responsive. She would hug you back, but she would not really talk anymore. My dad called family and close friends to tell them this news. Lots of people came to visit over the next couple of days. She had lot of friends come to say their goodbyes, and many people brought us food. It seemed like someone was always there. Sadly, I was not able to have much time alone with her. After a couple of days like this, my mom was no longer responsive. Most memorable of the many visitors was that of my grandma Canfield and Aunt Caren. They sat with my mom, their daughter and sister, respectively, and they cried. It is not an exaggeration to say that my aunt Caren truly mourned for her; we could her hear her cries from the other part of the house where we sat. This was Karen’s fifth sibling to pass away from this disease.

My sister, Aubree, flew to Utah on her own, so she could be with my mom too. It had only a few days since we said goodbye to her in Las Vegas. My mom had not eaten or drunk really anything for over four days now. She was completely unresponsive, and her hands were tightly clenched shut. We hoped that this did not mean that she was in pain. The hospice nurses continued to visit and to ensure that my mom was as comfortable as possible. That day her breathing became irregular. She would breath once or twice, and then she would pause for half a minute or so before breathing again. The end was near… That evening two of my brothers, Dan and Luke, came to visit. All of my mom’s kids were there except Josh, since he was in New Zealand. My dad and all the kids present sat around my mom lying on her bed and just talked. It was a special time, and I believe that my mom could hear us and enjoyed being surrounded by her family. Afterwards, my brothers went home for the night, and Aubree and I stayed at my parents, sleeping in the guest bedroom across the hall from their room. That was the last night my dad slept next to my mom. Through the night I could hear my mom’s inconsistent breaths; I kept waking up all night long and listening to hear that she was still breathing. I didn’t want to miss the moment she passed. I felt like it should be a spiritual and special moment – a way of saying goodbye.

II

When morning finally came, I was relieved to find that my mom was still breathing. My dad told me that it was an especially hard night for him; he had expressed his final goodbyes. I sat with her for a bit after waking up, and then Aubree asked if I wanted to do exercises with her in the living room. My dad had gone into another room as well to do some work on his laptop. We didn’t know how much longer my mom would survive in her current state. It could be any moment or day away. We found things to keep us busy, so we weren’t next to her all the time. I decided to leave my mom’s side to join Aubree and do Pilates. As soon as we finished, I came back to my mom’s bedside, but she was no longer breathing. I called out to my dad to hurry and come. Both my dad and Aubree came into the room. My mom was gone. We had missed it! It was a moment I felt deeply that it was important to be there and to witness, but I missed it. I just started to cry, and I walked into the front room of the house to be alone and to weep privately. I could feel my mom there, above me, saying, “Don’t cry because I am SO happy!” Imagining my mom happy and being reunited with her family (that had already passed on), God our Heavenly Father, and the Savior, Jesus Christ, brought a smile to my face and peace to my heart.

My dad called my brothers to tell them the sad news. My brother Luke arrived soon afterwards, and we called the mortuary. They came and took my mom’s body away after we had said our goodbyes. Then the hospice nurses came to clean up and retrieve their equipment (used to care for my mom). Many of these nurses had known my mom for several years by now. While talking with one nurse and thanking her, she told me that she had never seen a husband take such good care of his wife as my dad had. She said that she had taken care of many ailing, married women, and it was rare to see the kind of love, care and attention my dad had given to his wife. She remarked that it was truly amazing to see. I knew this was true because I personally saw how much my dad did for my mom. She was so lucky to have him, and my dad in turn was also lucky to have my mom. I too was sure lucky to have her! I can see her now in my mind’s eye with her hands closed into tight fists. She faithfully endured to the end. It surely was hard, especially towards the end, but she did it. It is something I hope I can do too. Thanks mom for your example!

After my mom’s death, my dad was showered with letters from family, friends and neighbors. Many of these notes expressed how the example of my mom and parents had touched their lives for good. At the funeral, many others came and verbally expressed something to the same effect to my dad. Over the years my dad had observed the impact of my mom’s example on others, and the notes and letters affirmed it. This is why he put the following scripture on the front of her funeral program: “Yet ye shall be patient in long-suffering and afflictions, that ye may show forth good examples unto them in me, and I will make an instrument of thee in my hands unto the salvation of many souls.” Alma 17:11, The Book of Mormon

This disease was without a doubt hard to endure, but my dad said that he came to understand through his experiences helping my mom with this disease that the purpose of life is to learn to love, or charity. Reading the attributes of charity listed in scripture, I know that this hard disease truly did increase those attributes in my mom and all those around her. The scriptures say that charity:

– suffereth long

– is kind

– envieth not

– is not puffed up

– seeketh not her own

– is not easily provoked

– thinketh no evil

– rejoiceth not in iniquity but rejoiceth in truth

– beareth all things

– believeth all things

– hopeth all things

– endureth all things

We could all use more of these attributes, and my mom having SCA7 provided abundant opportunities to grow in charity. Thus, charity was the brightest part or silver lining of this disease. As Paul said, “…the greatest of these is charity.”

Below is a movie made of my mom before she passed away. Hope you enjoy it.