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| Last Picture: At Elizabeth's 4th Birthday Party - Jul 29 |
I think it's important for me to share our final months; someday, somewhere, someone will get the awful diagnosis of ALS. They will search the Internet and stumble on our blog. I know this because there were a number of ALS blogs that Patrick and I stumbled on and read. People we never knew, never met, but we were so grateful they shared their stories with us.
To my fellow ALS travelers, know this, there is no road map for this disease and the progression is extremely personal and unique. So, my caution while you read this blog is that you recognize your story will be just that... your story. I've had people tell me, "I know just what you're going through." It's usually someone who means well, but it's not really true. You are unique, your story is unique, and your situation is unique - but you are not alone.
I write this blog, in hindsight without Patrick's review or comments. Although, I will tell you, he rarely changed much just added bits here and there. He was a tremendous grammar and spelling checker - so... it will not be quite as "clean" as you've been use to and this is solely from my perspective.
Respiratory Decline
Over the past year, Patrick's breathing was becoming more labored and the bulbar impact was substantial. The bulbar impact included his face, throat and mouth making it impossible to test his respiratory levels. The way we judged his respiratory decline was simply through his increased dependence on the ventilator. Which, in my opinion, is probably a better test anyway.
He consistently used the ventilator while sleeping for a couple years, but about 18 months ago he started extending the usage into the late morning hours, then a year ago he added a couple hours in the early evening and ultimately he used it about 20 hours a day. He came off to sleep on his side for a couple hours at night, to shower and dress, and to switch masks for using his Tobii (speech device). If he was off the ventilator too long he would start to cough and the clonus and spasticity would set in. Sadly, the noise of the ventilator and facial mask became our normal. We took his ventilator everywhere, including the movies.
The past few months, even while using the ventilator he experienced low oxygen level symptoms, including morning headaches and fuzzy thinking. These are classic symptoms of not getting enough oxygen. He bought a finger tip pulse oximeter a couple years back and would occasionally want to check his oxygen levels. While he was on the ventilator up until about six months ago it would be fairly steady between 92-96. But the last six months it dropped to a normal of around 88-90, so we knew even the ventilator wasn't able to compensate for the respiratory decline.
Bulbar Changes: Secretions and Communication
The bulbar changes had a profound affect on his quality of life. I've back tracked in my mind ways I could've made this less profound, but really it was out my hands. We worked to find ways to compensate for the bulbar impact but in the end ALS was relentless.
We don't realize it, but we are constantly managing the mucus and secretions in our mouths. He lost the ability to do this himself over the past couple years. In March, we started using the cough assist and suction machine regularly to bring the mucus up and remove it from his mouth. The suction machine is similar to what they use at the dental office and the instrument that goes into the mouth is called a yankauer. We did this process 3-4 times a day, primarily in the morning and evening.
The clonus and spasticity that he struggled with throughout this journey moved to his jaw and mouth. This made the ability to use the suction machine difficult and problematic. Just getting the yankauer in his mouth was tough because his teeth would clamp down. I was always concerned that he'd bite down on the yankauer and break it off and I'd have no way to get out the broken piece. That never happened, but I felt it was a constant possibility. He repeatedly bit his tongue and cheek which became very sore and tender. We tried various mouth guards to combat this issue but they were uncomfortable and he couldn't control the slight shifting. Sadly, when he bit down on his tongue or cheek he often couldn't get his jaw to relax - I would massage his jaw to relax the muscles, but I know it hurt.
Absolutely the saddest bulbar impact was on his already limited ability to communicate. This caused him and me the greatest anguish. He was limited to making noises to answer yes or no, but not much else. In the last few months, even this ability had severely declined. Our method of a-e-i-o-u, that I've described in previous blogs, was proving difficult because it requires him to affirm the letter selection and with the significant bulbar impact facial movements and noises were quite hard. He continued to use his Tobii (speech generating device) but that was becoming troublesome and it took me often 30 minutes to an hour to get it adjusted just right to where his eyes connected with the computer. Sometimes he stopped and spelled out with his eyes, "I'm done." A few months back he admitted that he was having trouble controlling his eyes and eye lids, our absolute greatest fear was that he would be "locked in" which is a term used to describe someone unable to communicate.
I have to pause here and say to anyone who has an ALS diagnosis, not everyone with ALS has the communication problems that Patrick experienced. In fact, I don't think I ever met anyone that was quite as challenged. I visited with ALS friends this past week, Pete and Lachi, Pete was diagnosed a year prior to Patrick, he speaks and is perfectly understandable. Remember, your journey is your own and some of the challenges of other persons with ALS will never affect you or at least not in the same way or to the same degree.
Hospice
Patrick started hospice in Mid-July, he was not much of a Facebook person, but he wanted to announce it on his page. Here is his post from July 21,
"I want to let family and friends to know that I have made a decision to start hospice in the home. This is a difficult decision to make as their wasn't an event that preceded this decision. It's just another stop in this journey where I need the extra services and medications to make me comfortable. I want to thank everyone for their love, support and prayers for me and my family. It is much appreciated."He wrote it himself on the Tobii without any help from me, took him over an hour.
Hospice was a tremendous blessing and I would be remiss if I didn't thank the people at Snowline Hospice that helped us through his final month. I have to be honest, I really thought he'd be on hospice for a while, my expectation was that he would live for at least another six months. A reminder to me that these things are beyond our control...
The day after his Facebook post, Patrick woke up feeling sick and vomiting. I still don't know what caused it. The vomiting created a whole host of problems. Firstly, he couldn't use his ventilator while he was vomiting and as the time away from the ventilator increased he complained of his inability to breath. I tried as best I could to clear the vomit out of his mouth but the clonus in his jaw would clamp down making it near impossible. He eventually stopped vomiting and was able to sleep through the night. In retrospect, he never recovered from that episode.
The following week he seemed to struggle even more with communicating and slept most of the time. He was able to attend Elizabeth's 4th Birthday, but it wiped him out. The hospice nurse told us she didn't think he would make it through the weekend. His final couple days were spent with me, Corrinne, Caitlin and Jake, reminiscing. He died Friday night.
One More Post
I have another blog to complete with Patrick's obituary - a tribute to him. He was so much more than the diagnosis of ALS and the post will be about him. True to his nature he left me a list of notes, "Patrick's Thoughts" he titled it, which included (I'm paraphrasing) move on from ALS, don't dwell there, don't remember me for a disease.
To Corrinne and Caitlin - He will always be with us, remember
"One bourbon, one scotch and one beer".... thank you George Thorogood for a final moment of laughter.
Corrinne made this lovely announcement for Patrick's Celebration of Life...
