Update from Weyton’s wife: 9/26/17
This “epilogue” has been a long time coming. Weyton passed away November 26, 2015, on Thanksgiving morning, almost five years after his diagnosis. We praise God that his suffering has come to an end and he is rejoicing in heaven.
I know every ALS patient has his or her own journey with the progression of the disease, and I wanted to share Weyton’s (and mine). I share these details of my husband’s journey with ALS not to scare or worry any other families of patients with ALS reading this, but because I hope it may shed some light on what it means to share life with a loved one with ALS. I also hope it might help decrease some of the uncertainty surrounding its progression and what happens at the end. Furthermore, I hope it can provide some comfort, knowing that other spouses and families have gone through it and were still able to see the good that comes through enduring such tough moments. As you may or may not know, Weyton viewed having the disease as a ministry and he vowed to glorify God to the end, which he did. That is not to say it was an easy journey. I was fortunate, however, that with God’s grace, he was never angry or depressed about having the disease.
Although Weyton declined quickly the first year, his symptoms plateaued and we generally had a good handle on what he needed as far as care. Once we realized I needed some help with his care, I contacted several agencies. I will admit that finding good, dependable caregivers was one of biggest challenges I faced. Through the years, I looked for good caregivers through many agencies, as well as through personal recommendations. I had three excellent part-time caregivers, but never had coverage for all the shifts for any length of time.
I had the caregivers help get him stretched out with range of motion exercises, give him showers, and get him dressed every morning. They also helped get him changed for bed and another set of range of motion stretches before going to sleep every night. In between caregivers doing the above, I spent most of the days with him on days I was not working. He lived a very full life, writing a book, putting together this website with our daughter, remodeling the house with a good friend, and landscaping our yard with me, caregivers, and friends being his hands.
Now comes the difficult part. In early 2015, a fellow ALS spouse/widow gave me a heads up on what happened before her husband passed the previous year. He experienced some frontal lobe dementia (FLD). Apparently about 50% of ALS patients experience some degree of FLD. Weyton started randomly saying some things that didn’t make sense, probably around the end of summer.
However, everything started really changing after the first week of November. He lost so much of his voice that even my son and I really had trouble understanding him. He had trouble breathing even after his respiratory therapist made repeated, aggressive adjustments on his ventilator settings, which was not typical. Soon after that, he also apparently experienced “terminal restlessness” – a form of delirium with symptoms of irritability, paranoia, and agitation – which is commonly seen during the end stages of life, as the body approaches death. This was probably the most difficult for me, as his primary caregiver and wife, to endure. What I understood to be a mostly physical, motor disease was also beginning to affect his brain, cognition, and personality, as well. Toward the end, some of his reactions and responses toward myself and others, whom I knew he sincerely loved and cared for, were unlike the husband I had known for 30+ years. My friends and family had to remind me that this was not Weyton, but the FLD and terminal restlessness.
Up until then, Weyton did not want to be on hospice care, as he did not feel ready. However, his respiratory therapist strongly encouraged starting hospice, as the hospice nurses could administer morphine to decrease his “air hunger.” Weyton had always expressed that he was not afraid of dying and leaving his earthly body, because he knew he would be going on to enjoy eternity in Heaven, with his Lord and Savior, Jesus Christ. However, he did make it very clear that he was anxious about experiencing the feeling of suffocating and discomfort associated with “air hunger.”
On Sunday morning, November 22, he was ready for me to call hospice. He was very weak and said he felt his diaphragm go out. He also had our kids call his friends to come over so he could say goodbye to them.
Upon receiving a couple of doses of morphine in the early afternoon to decrease his air hunger, he seemed to “awaken,” as God gave him mental clarity and a much clearer voice. During this time of clarity, he took back many of the negative things he had said to me previously, as a result of his frontal lobe deficits and terminal restlessness. This was such a blessing for me to hear. We were also fortunate that with this extra day or two where he regained enough strength to be somewhat more himself, he was also able to spend time with all his closest friends and some family members who had travelled from California to say their goodbyes and comfort him in his final moments.
As Weyton’s lungs were slowly starting to fill with fluid over the next day or two, the hospice nurse started the sedation process with increased doses of morphine. He was kept sedated for two days before he was taken off his ventilator. The hospice nurse said that he had actually passed before she took him off the ventilator, as he did not take a final breath when she took it off. This gave us so much peace, knowing that he did not struggle for his last breath and that this was exactly what Weyton had wanted – to not suffer.
Again, I realize everyone’s experience will be different, but I wanted to share my personal experience as a spouse, hoping to alleviate some fears of the unknown to other spouses of ALS patients and encourage you.