A couple of months ago our visitation pastor who visits our home, Pastor Roger, asked my mom if she would mind if he spoke about her and told her story at church during one of his services. My mom’s face lit up right away….and she said yes. If you attend St. Andrew Lutheran Church, you might notice that they have a pretty large prayer list in their program each week. My mom’s name has been in that #1 slot for many years now. Pastor Roger told us that so many people see those names…but don’t actually know specifically why they are praying for that person. By now, the congregation has surely seen my mom’s name week after week for years and wondered what exactly is wrong with this Julie lady…and how they can help her in their prayers. So, a couple of weeks ago Pastor Roger told us that he spoke about my mom like he said he was going to in his weekend services. He said that he had many people come up to him after & say that they needed to hear an inspiring story such as my moms. This brought my mom to tears of course. It really meant so much to her (and to all of us). We received the audio copy of the service a few days ago…and I am going to attach the last 3 minutes below. If you have a few minutes, we would love for you to listen to it! Pastor Roger does a great job showing what an inspiration my mom is! May she continue to inspire me & all those around her!!
Category Archives: Personal Family ALS Stories
When I look back on my life, I can say it had all been pretty planned out. Once you graduate from high school, you go to college. After college, I ended up getting married and moving a bunch of times. I had predictable jobs that fit my marketing degree & lived the life that I always thought I would have. You could say it was pretty smooth sailing. I always felt that God had a plan for me…and everything always happened for a reason. I had never experienced the feeling of my world being turned upside down over night.
Once my mom was given her ALS diagnosis, things began to change very quickly. I became addicted to calling home and seeing how things were going (I was living in Boston at the time). My mom had officially left her job at Nordstrom (which she loved) and was now cooped up in the house more than she would like. My dad had taken on an enthusiastic endeavor of learning everything about ALS he could and possible homeopathic therapies that can help. He had to continue going to work as well, and he never found time to rest. I felt completely helpless. I kept hearing about little things that were happening, like random falls or not being able to get up off of the couch after being seated. Eventually, I was being told that my mom was having a hard time feeding herself. This was tough to hear. I wanted to come home. My dad had told me to wait until things got really bad when I kept asking if I should come home for a visit. Eventually, I just said I was coming….and he said ok. He sounded relieved. I told the company that I worked for that I needed to go home for a month. They were kind enough to hold my job for me & I headed home. I remember when I told my sister (who was attending school at the University of Kansas) she got upset. I assured her that I wasn’t going home because they couldn’t make it without me. In my heart I didn’t know if that was the truth, but I have always felt a need to protect Jenna. I didn’t want her to get upset and worry while she was at school. I told her that I was going home to check out the situation & I felt that I just needed to be with mom & dad. I think that she was happy I was going home too. We were all so confused with how to handle our new situation. Our emotions were all over the place & who knows what stages of coping we were all at. I think we were all at different places.
The day that I came home, I will always remember the look of relief & excitement on my mom’s face. She was sitting in the corner of the family room in her lift chair on the phone (of course) with her legs tucked up. She looked so cute like there was nothing wrong with her. How could this amazing woman be sick? She got off the phone & I gave her a huge hug. I was so excited to be with her too. How would I ever be able to leave her again? This woman just meant way too much to me.
Over the next month, my mom and I spent every day together. We both (with my dad) mentally got used to what ALS was. We accepted the fact that a walker was necessary. Little steps such as this were hard to accept. You hate accepting the fact that you are getting worse. But compromising safety is far more dangerous, and we had our falls (which we would try to laugh through). I would feed my mom every meal. One bite for her, one for me. It didn’t even bother me. And she handled it like a trooper. We had many of her friends over, like we do now & they would bring organic meals & we would chat our afternoons away. After spending a couple of weeks at home, I knew this would have to be a permanent choice for me. If this disease was going to do this to my mom, then I had to be with her. My husband at the time & I were growing apart….so I made the choice to move back home with my family. (of course there was a lot more behind the scenes than that….but I won’t go into it). Shortly after I moved back home, my sister decided to transfer to the University of Minnesota when her semester was done. My parents went from “empty nesters” to having 2 of their 3 children back home. We wish it could have been under better circumstances, but I know that it made my mom happy. If you talk to any family that has had a member with ALS, you will hear about sacrifices that had to be made. There is just no other way. In fact, I could write a whole story about going from being an independent working woman with her own home that moves back home with her family & the struggle to be a respectful daughter yet still be an independent adult. haha. That was probably the hardest adjustment. But in the end, we are a very close family that has travelled a very long a challenging road together to find what our new sense of “normal” is now.
Discovering that my mom was experiencing changes in her body did not happen over night. In fact, before she was diagnosed, she had been experiencing symptoms for about a year. We believed it was just clumsiness. Looking back, the day that she broke her foot was when it all began. My mom was racing to get to the EPHS auditorium with her friend to see my sister perform in the talent show. She slipped on a piece of ice & broke her foot as a result. My mom wouldn’t be my mom if she didn’t sit through the entire show before realizing that something might be broken. After getting a cast she felt as if she was not healing properly. She eventually went back to work at Nordstrom, but didn’t feel quite right. Next she went to Mexico with my sister for her spring break. All throughout the trip, my mom’s foot felt weak & she was experiencing random tripping & falling. Apparently she & my sister went parasailing & my sister was worried the entire time about how they were going to land back on the boat. Of course my mom was not worried at all & had a great time. Leave it to Jenna to do all of the worrying.
After Mexico, my mom headed back to work still feeling a little weak on her supposedly “healed” foot. Nordstrom was doing a large renovation at the time, and my mom ended up tripping on some torn up carpet & broke her wrist this time. Ugh! Because of the severity of the break, my mom ended up with a titanium plate in her wrist & then developed a staff infection. After being hospitalized & treated for the infection she was off to hand therapy. This is when we started to notice a drastic change. My mom was not getting the strength back in her hand that she had had before. She also began to have a hard time pushing herself off of the floor if she sat down. We blamed it on the wrist….but apparently other things were happening that we had no idea about. Around this time my sister was graduating from high school & my mom was planning her graduation open house/party. I had come home from North Carolina (where I was living at the time & between moves) to help her out. My mom seemed especially worn out & I thought that she just didn’t enjoy throwing parties. Anything involving creativity & planning was never especially loved by my mom…while I loved party planning! Don’t get me wrong, my mom loved to party though! I remember ending up organizing most of the party because my mom was so worn out. I distinctly remember one night when she asked me to look up the symptoms of MS. I thought that my mom was crazy. All of my life my mom was what you can call a “drama queen”. If we ever said we had an ear ache…she thought it was cancer. Etc. So, after a wonderful graduation party for my sister, I headed out to Boston which was my new home at that time. Over the next month or so, my mom really began to notice that her wrist was not healing. She was feeling off balance & the random tripping continued & became more often. At this point, she decided it was time to head to a neurologist.
I remember getting the phone call from my mom saying that they were thinking she may have ALS. I had no idea what ALS was & immediately googled it. After reading the definition, I knew that my mom could not have that. What kind of a crazy idea was that?! So, while I was in denial, my mom headed to the Mayo Clinic with my dad for some extensive testing. Apparently the testing that they do is incredibly painful & emotionally draining. When all of the tests were done, the doctor came in and told my mom that it was undoubtedly ALS (commonly referred to as Lou Gehrig’s Disease). Looking back, I remember my mom telling me that the doctor was young & had a horrible bed side manner. He didn’t seem at all sincere or sorry about the completely life altering news he was giving my parents at the time. He even said that there was no use trying any alternative therapies or changing diet and lifestyle. He basically came across as “go home and get ready to die very soon”. When my parents got home, my mom immediately called me. I was hosting a party with my ex at the time & I remember getting that phone call…and my world turning upside down. I was half in denial and half completely destroyed/devastated. I couldn’t believe it. My mom had never been sick a day in her life. It just didn’t make any sense. After that day, I headed to work as usual, but found myself staring blankly at my computer screen. I sobbed & sobbed on my way home in my car. I basically became a shell of a person. I will write another time about coming to the decision to move home to help & all of the many challenges I faced personally & emotionally.
One important thing I want to come out of this story was what a rock my dad was. He didn’t falter once. He said “we are going to do everything in our power to treat this disease and slow it’s progression”. Over these last few years we have tried and done everything. Some things help & some don’t at all. But one thing will always remain the same, we never give up the hope & believe that some day my mom really could be cured. We don’t live each day as if it could be her last. We live knowing that anything is possible & God is good. I am not going to say that it hasn’t been a really tough road. Because it has. It has been impossibly hard at times. But it has also given us wonderful times together as a family & proven that we will do anything for each other.
I thought that I would begin sharing personal ALS stories from my family’s experiences. We have had many personal times of triumph & many times of sadness. All of them have shaped my family into what it is today. Today I wanted to write about the time in our lives when my mom decided to get a tracheotomy and go on a ventilator.
For a period of time (about 6 months) my sister, dad & I had been staying up around the clock in shifts to watch my mom sleep through the night. It had gotten to the point where we were all scared that she would choke on her phlegm…and nobody would be awake to help her. My mom was especially terrified with the thought of her life ending that way. She had so much fight left in her. Over the years we had heard so many negative things about going on a ventilator. Doctors were always very quick to share their opinions on my mom and all of us. They often suggested that a life would not be worth living with ALS & people always choose the fastest way out. We just didn’t believe that. We are a very unconventional family, and knew that we could do it. We figured that we had about a year before we had to make that decision, and then life took a tough turn for all of us.
I was giving my mom breakfast in her room. My dad had gone to work & I believe that my sister was catching up on her sleep. Jenna had decided to take off a semester from college to help our family. At that point, our plan with her didn’t go much further than that. It was day-to-day around our house. My mom told me that she was having a hard time breathing. Now that I look back, these were probably the last words that I ever heard her speak. I checked her heart rate & it was racing at about 150. Her oxygen saturation was low, and I decided that we needed to go to the emergency room. I figured that I would take her thinking it was pneumonia & she just needed antibiotics. I called my dad & through the course of the conversation my mom began to look really distressed. My sister was up by now & didn’t know if my plan to take mom to the ER myself was a good idea. My dad decided to come home & when he arrived they made the decision to call an ambulance ( I was still thinking I could drive my mom myself & didn’t want to stir up the neighborhood). In the end the ambulance was the best idea. Plus you don’t have to wait in the waiting room…you get in right away!
After arriving we spent about 6 hours sitting in a little room while they kept giving my mom Ativan to try to calm her heart rate & ran a bunch of tests. In the end, it was determined that my mom was fighting several infections in her blood stream & urinary tract. It was told to us later by my mom that she does not remember anything from the point we left her bedroom until several days later. Once she was checked into intensive care, it was determined that a breathing tube needed to be placed down her throat because her breathing was being compromised. My sister’s reaction to this news was devastating. I remember having to bring her down the hall while she sobbed & sobbed. I knew that my time to cry would come later, and I needed to stay strong for her. And besides, there was always the chance that we would be able to remove the breathing tube a few days later when my mom was better.
Over the next couple of days my mom was heavily sedated because of the pain of the tube. Her dad had flown in from FL and her family was constantly in her room and at her bedside. Jenna and I were spending the nights sleeping in the hospital room with our mom on chairs that were not very comfortable. We let our dad go home & get much-needed sleep because he still needed to go to work since we didn’t know how long my mom would be in the hospital. His insurance has been wonderful….and boy did we need it! About 3 days later they tried removing her breathing tube…and that didn’t go well at all. Apparently a person with ALS has muscles that atrophy quickly when not in use. Since we were not able to remove the tube, we now had to made the dreaded decision. To trach or not to trach? Luckily we had been smart and created a living will for my mom before all of this happened. She had clearly made the decision (on her own might I add) that when the time came, a tracheostomy would be her decision. We were all in shock that the decision came so quickly, but we knew what had to happen.
After the trach procedure had been done, we realized quite quickly, this trach thing isn’t so bad! All of the things we had previously worried about (like my mom choking) were quickly put at ease. We now had the ability to suction down her trach tube and pull out all of the gunky stuff that she had previously been terrified about choking on. And another huge plus, we were able to SLEEP AGAIN!!!! The ventilator that she is on will alarm to tell us if anything is clogging her airway or compromising her breathing. We suddenly had a lot of stress taken off of our shoulders & we had never even thought about the new benefits. One immediate downfall was the fact that my mother could no longer speak. We had to quickly learn a new method of spelling through blinking. My mom took to it right away & that is how we have spoken ever since.
Once the tracheotomy had been done, we had to look at how to move forward as a family. Our next step was to convince the doctors & social workers that we could take care of our mom on our own. The medical company we were using said that they had never sent a patient home with family members versus going to a care facility. Over the next few days we learned how to use the ventilator, clean my mom’s trach tube & change her inner canula. We were determined to bring my mom home & take care of her. Another change that we made was moving a hospital bed into our living room so she could be in the center of all the action. It would no longer be possible to bring her upstairs since she was attached to a ventilator. Again, this turned out to be a good thing. My mom no longer felt secluded & we all learned to party around her. She always knows what is going on, and that is the way that she likes it!
Overall we spent about 4 weeks in the hospital fighting infection & transitioning to life on a ventilator. It was a very emotional & sometimes terrifying time in our lives. Our world felt as if it was turned upside down over night, but in the end, the changes we made had a positive impact on everybody that lived at home. My mom has not been hospitalized since, and it has been about 3 1/2 years now. We take turns sleeping on the couch in the living room at night to be with her. Luckily our couches are amazingly comfortable & now looking a little worn out….but I love them! I get most of the nights of the week on the couch, but that is ok by me. Every night I sleep near my mom, I find the gentle breathing sound of the ventilator soothing. It is that sound that reminds me how thankful I/we are to still have her with us. She is such a strong and amazing woman. The ventilator decision was such a positive decision for her and my family. She has since seen my sister get engaged, helped plan a wedding, got to see her say her “I do’s, spent time with all of her family, seen all of her friends, she attends the ALS walk every year, was there for my dad when he lost his mother, was there for my uncle when he lost his wife to cancer, was there for one of her best friends when she lost her battle with breast cancer. And in the words of my mother, she has truly learned the meaning of the phrase “everyday is precious”.