I am Kathleen Infante
a family member of someone we've lost to ALS
California
This wasn’t an easy relationship and certainly not long enough. But I was lucky Brian chose me to spend the rest of his life. I would not have missed having him in my life for anything.
I went through the nightmare that is ALS with my husband, Brian. He had been exhibiting random muscle spasms and cramping that we just dismissed over a period of 2 years. It never inhibited him from living life and working as an anesthesiologist. In the summer of 2017, his voice started to change and he was losing weight. We talked about it which, as a physician, was readily dismissed. One of his co-workers called me to express concern over the changes they were seeing. Brian went through the gambit of tests until the ENT suggested seeing a neurologist. At that point-Autumn 2017- he was diagnosed.
We were in Hawaii snorkeling and he could not breathe. He had to be brought out of the water by the tour guides prior to the confirmation of diagnosis. That incident told him what he feared.
Brian continued to work which required his going between cases to use his BiPap. He retired at 65 in June, 2018 (We were married in April,2018).
He was ok at home finding ways to entertain himself and working on his estate plan. Brian was totally mobile until his death which made things easier for me. I continued to work every day and be his pit bull in the world that is US Healthcare. I became his voice since he had bulbar onset. He was skilled at text to voice communication which helped both of us stay connected to each other.
In March, 2019 he requested the meds to do physician-assisted suicide. Brian made it clear he never was getting a tracheotomy
but he did agree to a feeding tube.
I continued to work until July 1, 2019. Brian had taken a fall while I was at work and I decided it was time for me to be home. The fall
must have scared him because he didn’t fight the idea of my being home this time. We had 6 weeks together when we had the time to clean up paperwork and say the things to each other that needed to be said. He finally decided August 4th was the day he wanted to take things in control and say he had enough. It was 6 days before his 67th birthday.
We had people here to say goodbye and support me. He was finished and at peace that he had the i’s dotted and t’s crossed. I felt ready having had months to grieve the loss of our life together. We often said the marathon became a sprint.
This wasn’t an easy relationship and certainly not long enough. But I was lucky Brian chose me to spend the rest of his life. I would not have missed having him in my life for anything.
