Inspiring Women: Life With Barbara

“ Bruce was better at taking things as they came. I remember when the neurologist confirmed for us that it was ALS, my eyes filled with tears… and Bruce made a joke. I wanted to hit him, maybe I did, this wasn’t funny, but that is how he faced things with courage and a smile. ” Inspiring Women: Life With Barbara.

I have never met Barbara. Her sister-in-law Marianne Ayton, had written me saying she thought Barbara would make a lovely woman to feature. Barbara’s story is something most of us will never go through. I think you will find her beautiful story one of heartache and hope. I am truly honoured to share Barbara’s and Bruce’s story.

Inspiring Women: Life With Barbara

Journal Entry Oct. 18/12 (our oldest son’s birthday)

“Go gently through this day keeping your eyes on Me.” Those words echoed in my mind as we walked the halls of the hospital. It was the opening line of the devotional I read this morning. The Oct. 18th devotional from Jesus Calling, by Sarah Young. Good advice I thought for the day ahead of us as we were to find out Bruce’s official diagnosis. Somehow, we were holding hands, sitting in the neurologist’s office, shuddering inwardly. Certain moments in life you just wish you could be excused from. Then she was there with compassionate eyes, speaking in soft tones confirming that the diagnosis for Bruce was indeed ALS.

A Little About Me:

My name is Barbara, I am a widow, still a foreign word to me, how did I get here?

For most of my life, I have been Bruce’s wife. We had our first date exactly one week after I turned 16. We only dated for a few months. Later he told me when he realized that just over a week before I had been 15, and in 2 ½ months, he was turning 20, that scared him off. Eventually, though, we started dating again, and when I was 19, and he was 23 we were married.

We moved to southern Ontario from Sault Ste. Marie, went to college and then became parents to three incredible sons. We were two very different people so life was not without its bumps in the road, but we were committed to each other and to God. Bruce had told me to “be sure” when he asked me to marry him. He said he didn’t believe in divorce, so we were either going to live happily or miserably, but we’d do it together.

Back when I was somewhere around 13 or 14 years old, I saw the movie of Lou Gehrig’s life. He had ALS.

Amyotrophic Lateral Sclerosis, is a fatal motor neuron disease where basically the nerve cells die and stop sending signals to the muscles. This means an eventual loss of the use of your body. Imprisoned inside a body that doesn’t work anymore, the disease eventually takes your life.

It frightened me so much, it was a true story. The whole idea of struggling to breathe and choking, made me feel near panic. I began to pray that I would never get the disease myself, that I would never even know anyone with it. For weeks, I lived in fear of it, maybe more, until I finally realized that I couldn’t keep on like that. I gave it up to God and acknowledged that He could either keep it from me or He could see me through it if I ever had to face it. I left it there and finally had some peace. 

Fast forward to many years later when my husband appeared to be losing muscle mass.

Bruce went through a series of tests until in our family doctor’s office he finally spoke ALS out loud.

My heart pounded in my ears before it sank to my shoes. This was the disease we were facing?

God knows I need time to process things, so He began preparing me way back then for what He knew I was going to be facing down the road. A lot of the fear and spiritual battle took place then so that when the time came, I knew where to go.

Journal Entry:

Well, I’ve had to get back out of bed tonight because I can’t seem to sleep, I feel like I can’t breathe, the weight of this knowledge is too great.

… I do not know for how much longer I will have my husband. His breathing is different when he sleeps. How can I watch this happen? How can I watch him die? My heart trembles at the thought. “Let not your heart be troubled, believe in God, believe also in Me.” John 14:1. “The Lord is my light and my salvation, whom shall I fear? The Lord is the defense of my life. Whom shall I dread?” Ps. 27:1

Lord you know all things. You know the end from the beginning. You know the number of our days, nothing surprises You. I have trusted You my whole life and I have to trust You now. I will trust You, but I don’t like it.

Bruce, on the other hand, had no idea what ALS was when they first started to suspect it.

He was better at taking things as they came. I remember when the neurologist confirmed for us that it was ALS, my eyes filled with tears… and Bruce made a joke. I wanted to hit him, maybe I did, this wasn’t funny, but that is how he faced things with courage and a smile.

A Typical Day:

I don’t know that there was a “typical” day for us, that was the whole thing, this monster kept changing things for us at a pretty fast-moving pace.

Over those 4 years and 3 months, we went from Bruce working, to not working, to needing us to steady him while walking, to being in a sit-down wheelchair to being in a lay-down wheelchair. From struggling to breath, and having to sit in a chair with high enough arms so he could lift himself up a bit to breathe, to being on the BiPAP machine at night, to eventually being on it all the time. He went from feeding himself to having others do it to being on a feeding tube. He didn’t want others to do his private, personal care, he wanted his dignity, so I did it.

I know that seems strange, but when I couldn’t do anything else for him, I couldn’t change things, I could do that.

In the last stages, typical days consisted of disconnecting the feeding tube and flushing, personal care, change/sponge bath, washing/adjusting masks, using the cough assist for hours some days when he would struggle with saliva, answering a myriad of requests… fix the mask, wipe my eyes, scratch my ear, tape my finger to the controller (so he could play Minecraft – one of his joys), leg up, leg down, roll me to the side (this helped alleviate the pressure of being on his tailbone all the time and to keep him from getting bed sores), pull the blankets up or take them down, adjust cushions. There were OT exercises, meds through the tube if/when required… visitors, taking him for walks…flushing and connecting the feeding tube, he might sleep for a bit and then the requests would continue through the night.

There was so much need, I was thankful not to be alone. Our youngest and middle sons were living at home most of the time. They helped immensely with the constant need. Our oldest son and his wife stayed with us for awhile too.

My Struggles:

I hoped that God would heal Bruce here and prayed for that, so many people did, but it became apparent that was not what God was going to do. So what then? I was faced with the decision. Do I trust Him even in the dark places, even when He doesn’t do what I want Him to? I believe God can heal, but there is purpose in it, to show who He is.

I also recognize that sometimes God allows us to walk through the difficulty and He can still reveal Himself all the way through it. My eyes had to be fixed on Jesus.

The medical side of it scared me. I’m as squeamish as they come. There was the BiPAP machine to help him breathe, the cough assist for when he needed to cough and clear saliva, the feeding tube to nourish his body, all the issues that went along with them and more. These were important things for him to stay alive. It mattered if you messed up. I remember in the hospital they had me watch as they dealt with the feeding tube and told me when Bruce came home that someone would come the first night to show me once, and then I would do it. Wait…what?

The physical side was difficult to deal with and more than difficult to watch as he lost his ability to function on his own increment by increment, but the loss of relationship was huge. In many ways we lost him before we lost him.

The firm handshake he had taught his sons was so important was gone. The ability to hug, to protect, to care for which was so “him”, slipped away. Even that brilliant smile dimmed.

I thought, especially when I went on leave, that we would have conversation at least, but his voice became quieter and quieter until it was barely a whisper.

We got a voice amplifier, but even when he could still talk, I would ask why he wasn’t responding when I tried to engage in conversation and he would say, “It’s just too much effort”. I realized, that was gone, too.

So much more…death – living life without Bruce was ahead, it was in your face all the time and it was real, but it wasn’t real…not being good enough…frightening situations…constant calls…very little sleep at night…exhaustion…attitudes starting to fray.

Bruce passed away January 27, 2017, it was the most peaceful he could have had for an ALS patient. They always told us it would most likely be a panic situation with pneumonia or choking, but his sister was sitting with him and suddenly realized it had become quieter. He was gone. I’d been wrestling before God knowing there might have to be a change in his care, uncertain if we could keep doing it at home. Just that day I’d met with Maeve, who said we were in caregiver burnout, about seeing what options there were although I wasn’t ready to do anything yet.

My journal that day included a plea to God for help in knowing what was right to do. Having that conversation with Bruce was something I dreaded. I never had to, God took him home. 

My Joys:

My greatest joy is in Jesus, knowing that this is not the end, we have the hope of heaven. I have never been so thankful for God sending his son, Jesus, to be born as a baby, live a sinless life among us so that He would qualify to die on the cross as the perfect sacrifice to take our place for all sin for all time. He rose again because death couldn’t hold Him and because of what He did, it can’t hold us either if we accept Him. Bruce and I and our kids had accepted this gift so we had that hope shining before us the whole time even though life here was pretty messed up.

There were joys here too, not just struggles and it became almost like a discipline to be thankful:

We got to see our oldest son, Nathan, get married to a beautiful woman, Kristen.

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Two adorable, granddaughters, Nora & Gwen, were born. Those two little ones were a bright spot in all of this.

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Our middle son, Justin, was accepted into the nursing program at Fanshawe/Western but gave it up to help care for his dad.

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Our youngest son, James, graduated from High School and Bruce got to see it.

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There were overwhelming blessings along the way…

friends and family praying, giving and holding us up. Meals provided, groceries bought and delivered, gift cards, books, hugs, family and friend visits, cards filled with kind words, a hospital bed provided – I don’t even know by who, it just showed up. Friends moving to their basement and letting us rent their wheel chair accessible main floor. Work allowed me to do half my work day from home, then gave a leave of absence so I could be home to care for Bruce.

PSW’s who cared about Bruce. The ALS clinic staff, the ALS Regional Manager and the ALS Support group helped us get whatever was needed. Ramp van available for purchase at the right time, for only the cost of the used van not including all the upgrades to make it a ramp van, people pitching to help.

Our church family in support of Bruce at one of the ALS walks.

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A group of friends from our church got together and presented us with an unbelievable gift of a Mediterranean Cruise – time together before the disease progressed too far to make it impossible. Family provided luggage etc.

My Dreams:

This is a difficult one because it means looking ahead. All I really do is put one foot in front of the other each day. I don’t look too far ahead. When I do, the future that stretches out before me is a stranger, unexpected and unknown. But I do not meet it alone.

I would like to see Christ move in the lives of my sons and daughter-in-law as they allow Him to lead and use the gifts He has placed within them.

I have two granddaughters aged 2 and 3 with a third grandchild on the way. I’m looking forward to tea parties, reading stories, etc.  I would like to leave an imprint on their lives that looks like Christ.

Moments with God:

There were a lot of difficult things that had happened in life before ALS hit where God had showed Himself faithful. A move to a new city, my mom died, my dad died, we lost everything financially. (Bruce’s mom died during our ALS journey) All these things, once there, God used like building blocks in my faith to create a deeper trust in Him, a greater understanding of who He is.

Still, I felt so flawed at the time ALS hit. I felt inadequate as a wife, mom, secretary, then as a caregiver.

I constantly need (yes, present tense) to be brought back to the fact that God’s love for me doesn’t depend on me or anything I do or don’t do. He loves me because He loves. That’s who He is. -Barbara

I just need to let it sink in. I will never be perfect here, but I can let His Spirit work in me to make me more like Him.

Eventually, PSW’s would come for three hours/day. I wouldn’t get away for all that time, but as much of it as I could I would take my Bible and my journal and go drive somewhere pretty to walk and pray or just sit in the vehicle and have time alone with God. It was a lifeline to get through the day.

Each New Year after diagnosis I chose a verse instead of a New Year’s Resolution to draw my attention to Him and remind me to depend on Him. They were: Psalm 28:7 (2013), John 14:27 (2014), Psalm 105:4,5a (2015), Hebrews 10:23-25 (2016), Psalm 73:26,28 (2017)

I asked Bruce how he was doing, spiritually, and he said he was just holding on to Jesus, I felt that clinging to Him, too. I would pray wherever I was, whatever I was doing…Lord, just give me the grace to get through today…Lord, be merciful to Bruce, whatever that means (because I didn’t know)…God, if You can use this somehow to make Yourself known, then please do it…Lord, please help our sons turn to You and not away in this, don’t let bitterness take hold…and when I felt like I couldn’t go on…

Lord, please fill me with Your love for Bruce…and He did.

I hope you were touched by Barbara’s and Bruce’s story. We have many amazing Inspiring Women in our series. Read about Sherie, and her amazing hope despite having a child with terminal cancer: Life With Sherie.

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