Dear Family and Friends,

I know it has been quite some time since I have written and I sincerely apologize for that.  When I get overwhelmed and/or depressed, it's really hard to write.  Some say that's the best time, put your thoughts in writing and perhaps it will help to unravel the mess.  But that type of writing would only be for me to see and I really don't want a written record of the acrobatics that my mind seems to engage in during difficult times.  Although our situation has not really improved, I do feel it is time to give you all an update on Tony's health.  

The ALS continues to take a toll on Tony's life.  He can barely type with his right hand to send messages and express his needs and desires.  And the right hand is the most functional part of his body.  Every other limb is even more stiff, spastic and paralyzed.  The paralysis has made his speech completely incoherent.  He tries to speak and have us understand but it's nearly impossible to communicate with him in this way.  We have to play somewhat of a guessing game, go through the systems and identify where the problem is, then attempt to identify the aspect of the problem.  An example:  are we talking about your hands?  Your feet?  The television?  Your phone?  Do you need the bipap?  Once we identify the location of the problem, this is what follows.   Do you have pain in your foot?  Do you need me to move your hand?  Do you want to watch the news, sports, a movie, a series?  . . . . .    I'm sure you get the picture.  

Tony continues to eat by mouth but only foods that are very soft and/or pureed.  He is at the point where he has a lot of trouble sucking water through a straw due to weakened muscles of the mouth, tongue, and swallowing.  He receives about 70% of his caloric intake via the g-tube, as well as all of his medications and water.  If not for the g-tube, Tony would have experienced more pain and an earlier death for sure.  

Tony's respiratory status has diminished although we have no way of measuring this.  We know this  by observation as well as his subjective needs and wants.  His oxygen saturation bounces around from low 90's to mid 80's.  Normal readings on oxygen sats would be 98-99%.  Thankfully, his lungs have remained clear and he has not yet experienced any respiratory infections.   He is quite fatigued though and any event, including eating, contributes to the fatigue.  He uses the bipap at least 18 hours per day.  The acts of breathing, eating, typing on his phone all cause fatigue.  He can't get enough oxygen into his system through breathing alone and that's where the bipap comes in.  The bipap is a device that pushes room air into his lungs, helping to expand them and then allows him to have an expiration on his own.  It gives him more oxygen (from the atmosphere), eases the work of breathing, and makes him more comfortable.   It has contributed to his longevity. He uses the bipap at least 18 hours per day.  We have another device called the Cough Assist.  This device is used after he has eaten by mouth or after a vomiting event.  It pulls aspirated debris out of the respiratory tract before it can cause infection.  Easy to use and another life saving device.  

The spasming continues and the bipap helps with that, thus the extended hours using it.  

The main problem these days is urinary tract infections.  He has had infection on and off (probably more on) for more than two months.  He is on the third round of antibiotics and under normal circumstances, the infection should have been cured on the first go-round or at the very least the second.   He has been experiencing low grade fevers for the last few months as well.  I have been banging my head around trying to figure out what is causing the infection, what's causing the fevers.  Are they related or are we dealing with different things?  Because Tony is on hospice, they do very limited testing.  We did a urine culture a couple of weeks ago and klebsiella turned up as the culprit and it demonstrated sensitivity to Bactrim.  Tony took a course of Bactrim (that was round two of antibiotics) but alas, once the Bactrim stopped, the symptoms reappeared.    However, the fevers do not resolve even with antibiotics.  The UTIs are probably caused by the condom catheter.  According to the hospice doc, even non-invasive things like the condom catheter can cause UTI with long term use and infections can be recurrent.  That explains the source there of the UTI and we'll probably have him on some type of antibiotic that will suppress the bacteria but never really get rid of it.  This is a comfort measure.   The fevers, I think,  are caused by something else.  We decided not to do any testing to try and figure out what the cause of fevers might be, and even if we did, we would probably choose not to treat.  Therefore, I can finally let it go, provide Tylenol to make him more comfortable and let nature do its thing.   This saddens Tony and me greatly.   But at least this frame of mind allows me to be more in love and comfort mode and let problem solving mode dissipate.  I'm a better caregiver when I feel at peace.  

Tony experiences much sadness as time goes on and his disease progresses.  He has felt aspects of his life slip away over the last 6 1/2 years and he has always dealt with this in a very stoic manner.  At least with me, he is allowing himself to grieve the many, many losses and the loss of a future filled with friends, family, food, adventures, etc.  It is heart breaking to witness everyday.  

It's been very difficult for Tony to participate in Zoom calls and visits outside on the plaza of our building.  He tries but often he just cannot follow through.  However, if you would like to talk with Tony for a very short time, I encourage you to call me or contact me through email.  We can set something up and try to make it happen.  I'm asking you all to please contact me initially because it's too difficult for Tony to even read messages on his phone.  Many people say, well, just give me a call when Tony is up to it.  The problem with that approach is that there's so much to take care of here and so many people who want to see him.  It takes a huge burden off of my shoulders if you contact me  and then we'll figure out a plan.  

Thank you so much for your love, caring and devotion to Tony.  He has been a great mentor, leader, colleague, and friend to so many and we are grateful for that.  I often tell him that he has done more things and helped more people in his life than the vast majority of us ever can or will.    That's something to be celebrated everyday.  

Love,

Angie