Pete and Lachi

Pete at the ALS Walk

When I wrote the last blog post in Our Family's Journey back in October, 2018, I had no plans to write any others.  It wasn't that I had "moved on" because any widow will tell you, you don't really "move on."  This blog was our story and I didn't have anything left to share regarding "us."  But its also a story about all the family, people and friends that shared our journey. So, when I got the text from Lachi that Pete had died, I realized there was still another blog to write.  

The news shouldn't have been a surprise, Pete had been living with ALS for over 6 years. Still I was surprised, pained and saddened. We get into a mode of living, where we think either consciously or subconsciously that things won't change... but they do. I remember after Patrick passed away one of his close friends said, "I just thought he'd stay the way he was forever."

I can say without hesitation that I have yet to become comfortable with death - it still shocks and saddens me whether or not I should've expected it. So, when I got the news from Lachi I was overwhelmed with grief. With one more of our friends passing, it felt like I was losing a little bit more of Patrick. 

There are only a few ALS patients left that started this journey with Patrick and I. Pete and Lachi started support group about a year after we did. They were like us, sorting through the diagnosis, making adjustments and trying to figure out what it meant for their future. They had the added consideration that Lachi, herself has an mitochondrial disorder that significantly reduces her strength and she often gets around with the help of a power wheelchair. 

So, they had to figure out how it would work with two people with disabilities. Over the years, I never heard either of them wallow, they struggled, yes but never self pity. They were quick to help others in support group, showed tremendous compassion and empathy, and provided helpful suggestions and insights. They were people that made things work.

Pete's journey differed from Patrick's, his symptoms started in the respiratory region. Which generally means your life expectancy is reduced. In all honestly, it never occurred to me that Pete would live such a long time. 

After Patrick's death, I've gone out to visit with them every few months. He was declining, I could see that, but he was still Pete and such a positive guy. Lachi and I would head out for lunch at a local restaurant or I'd bring take out. 

Very early in the diagnosis Lachi knew that she needed help to care for Pete. They came up with the unique plan of hiring pre-med, pre-nursing students from UC Davis. The level of care varied at times but increased over the years. The last couple of years they employed anywhere from 5-7 students for about 60 hours a week. Lachi ran an amazing staff.

I met a number of these students and it was an obvious win-win for everyone. In addition to being paid, the students got real life experience that impacted and prepared them for their careers. For Lachi and Pete, who have no children, this added a tremendous amount of life to their home. They rejoiced in their triumphs and encouraged and mentored them in their young adult decisions. Whenever I visited I heard a story about one of their student caregivers - they were family.

The love between Lachi and Pete was always apparent, as was their commitment to each other. Pete took care of Lachi for a number of years and in turn Lachi took care of Pete until he passed away. Not many of us have been on both sides of that coin. They did this "dance" with tremendous grace and love. They are a testament to what a marriage could be, not the easy stuff, but how we manage the hard stuff. I will miss witnessing the dance.

Pete Richards lived a full life, with friends and family. He opened a collectibles shop in Davis called the Davis Gold and Silver Exchange for over 25 years. He was an avid history buff, and always willing to discuss the news of the day. In his final years he wrote short stories from his life and put them into a book for his nieces and nephews. He was optimistic, witty and generous with family and friends.

Here is his obituary from the Enterprise, it does a wonderful job of sharing his life. He was an interesting guy.  

Peter Charles Richards - Obituary, the Enterprise, Yolo County News

Team Timmons 2017

Selfie of Therese, Lachi and I (and my hand:)

An aside:
Patrick and I never met Pete or Lachi until ALS support group. We found out quickly, that our connection was not just ALS.  Lachi worked for a small engineering firm where Patrick and I had other friends. Interestingly, when Pete died, I got a call from a friend at the firm to make sure I had heard the news. It reminds me that we are all interconnected, like that six degrees of Kevin Bacon game. 

Shirley

Shirley (mom) and Patrick

Patrick's mom, Shirley, passed away this week.  It didn't come as a surprise, she had been battling Alzheimer's for over eight years. A tough disease especially for such an outgoing, funny, charismatic lady. The fact that it was not a surprise does not lessen the impact of her loss.

For many years she worked as a waitress on the night shift at both IHOP and Western Sizzlin. Starting her shift at 11pm and working until the early morning - her sleep cycle was always a bit different. She had, what she called her "regulars", folks that came during her shift to chat and share their day. She was friendly, funny and always willing to lend an ear.

She was a "foodie" long before that became a thing. She loved food and was a tremendous cook, who specialized in comfort foods - brisket, potatoes (scalloped, mashed, twice baked), deviled eggs etc. No one went hungry at her house. Her recipes were difficult to follow only because she didn't use measurements, she would say - "oh, you know just add a little of this and a smidge of that." She would often go through her restaurant menu describing items in great detail. While working at IHOP she recommended to Patrick that he try the Country Griddle Pancakes they are delicious. She said the secret ingredient was cream of wheat. This became one of his favorite foods and if you like pancakes I would recommend you give them a try.

To say Shirley was a talker would be an understatement. Shirley's phone calls to Patrick were legendary. He would prepare himself by finding a comfortable spot with ear phones in and emerge a couple hours later. Sadly, these calls are history now, not having received any since her diagnosis. 

Jim, Sean, Patrick, and Shirley

Shirley had three sons, Jim, Patrick and Sean. Jim passed away in 2011 and at a point where she was already battling Alzheimer's disease. Prior to flying out for his funeral, I wondered how much of Jim's death she would understand.  I sat next to her at the funeral she just stared forward without expression. In a moment of clarity, she turned to me and said, "you should never out live your children." Then she just turned back to the front. It was a powerful moment, one I will never forget.

The three brothers were jokesters and their mother was often the victim of their pranks. She was a chronic smoker for years. There are stories of poking holes in the cigarette filters, and replacing tobacco with other substances. Perhaps that is one benefit of her diagnosis, when she was hospitalized after a particularly bad episode she was not allowed to smoke. During this time she forgot about smoking and never smoked again. Occasionally she would mention that she remembered smoking. Sean would respond, "nope, nope, you never smoked." 

Don't feel too sorry for Shirley. She had a great sense of humor and enjoyed the banter with her sons. While we were visiting a few years back, Sean made dinner for everyone at his house. Shirley was living in a residential care home and had been quarreling with another resident over a reclining chair - Shirley had deemed it "her chair." This had prompted a few calls to Sean to help calm Shirley down when she found "her chair" occupied. 

During dinner Sean said, "you know mom there are other chairs to sit in." She responded, "that's what I told her, she doesn't need to sit in my chair." I had to laugh... she had a point, kind of. I'm not sure that Sean was entertained, but it sure made me laugh.

We didn't tell Shirley that Patrick had ALS. That was an easy decision, it would just upset her and the information would soon be forgotten. Why cause her this pain, what would be the point. When we visited her the year Patrick was diagnosed I think she noticed that he didn't walk with his usual ease, but she seemed to disregard it.

Timmons Family 2011

Shirley, along with most of Patrick's extended family, live in the Denver area. This placed the caregiver role on Patrick's brother, Sean and his family over the past years. Sean visited her regularly, delivered soda (or "pop" as Shirley called it), candy and puzzles, which she enjoyed for a few years. He managed any issues that occurred at the home, coordinated with her doctors and hospice staff and was the point person for her care. We owe Sean and his family a debt of gratitude for the many years of care they provided. 

Regardless of the expectation of death, the loss of a parent is never easy. Shirley was a wonderful, free spirited soul. She was loved by all who met her and she could always make you smile. So farewell Shirley, we were blessed to know you. I'm sure you are enjoying a plate of country griddle pancakes with Jim.

Frank, Jim, Patrick and Shirley

Goldie (Shirley's mom), Shirley & Jim

Corrinne, Shirley & Caitlin 

Shirley

How's Patrick Doing? #11 - Part II: Respiratory, Speech and Bulbar Changes

Patrick and Christian

This second part of Patrick's update concerns his respiratory, speech and bulbar region (head & chest). As time progresses, ALS has affected all his muscles; from the ability to move legs and arms to swallowing, speaking and breathing. As I've mentioned before, ALS starts in one of the following places: limb onset (arms or legs), bulbar onset (speech or swallowing) or respiratory onset - most of the statistics I've seen are about 30% Leg, 30% Arms, 30% Bulbar and 10% Respiratory. For Patrick it started in his hands and now affects all the various areas to some degree.  His hands and arms are the most impacted because it is the place of onset.

Respiratory and Coughing
There is no way to know Patrick's actual rate of respiratory decline. As I've mentioned in prior blogs, they haven't been able to get respiratory readings in over three years. This is due to his extreme decline in the bulbar region specifically his facial muscles. Years back Patrick participated in a trial at UC Davis where they were looking at using ultra sound technology to determine respiratory decline in ALS. I never heard the outcome of the ultra sound trial, but it seemed like a good idea.

Without any measurable way, the only way to determine his status is through his dependency on respiratory equipment and observation. Over the past 8 months he has increased his typical use of the trilogy (Noninvasive ventilator) from only overnight (6-8 hours) to about 18-20 hours per day. However, he is not fully dependent on the ventilator and can go without it for a few hours if necessary. 

He struggles with saliva and coughing which subsides while using the ventilator. So, part of the increased use is related to assisting in the management of coughing. I don't totally understand how the ventilator assists with this issue, but it does help.

When he is not using the ventilator, coughing can become quite severe. He has the added bonus that his body reacts to coughing with spasticity and clonus. Essentially, he begins coughing and his entire body becomes rigid and starts to shake uncontrollably. It's not pleasant to watch. If this happens in the car or while sitting at a table he often hits his shins which have a number of bumps and bruises.

We've had some close calls during transfers where he almost slides out of his chair as he begins coughing and becomes rigid and shakes. These are tense moments for him and me. Fortunately, I've been able to manage to get him hooked into his sling or tilted back in his chair before he slides to the floor. Unfortunately, being stressed, further exasperates these symptoms. 

Much of his coughing comes from a difficulty in managing saliva/mucus. With throat and tongue muscles compromised it's becoming more difficult to manage the fluids in his mouth. We have two machines that help with these issues: the cough assist, which does exactly that, it forces a cough. A mask is placed over the mouth and nose, the machine is activated and it pushes air into the lungs and then sucks the air out; hence a cough. This helps to keep the airway clear of mucus and brings up fluids. Then we use a suction machine, which is very similar to what is used at the dentist's office, to suck up the fluids in his mouth.

I doubt it's pleasant for him and it's not particularly fun to be the administrator, but it does cut down on the coughing and makes him more comfortable.

Food and Medications

Patrick has had a feeding tube for over a year.  He eats, drinks and takes medication exclusively through a tube. He simply can't manage food or beverage orally. When he initially had the feeding tube placed he still occasionally ate regularly, but sadly those days have passed.

The Ultimate Pill Crusher - Silent Knight

All his medications are given through the feeding tube. I've been through a number of different pill crushers and settled on the Silent Knight (thank you, Justin). This pill crusher is the easiest to use and does a good job of crushing the pills into a fine powder. You have to be careful with putting ground medication in the feeding tube, you don't want to clog it - trust me. I'm a bit of a pill crusher and syringe connoisseur.

We've looked at his medications to determine if they can be ground into a powder. Time released formulas are not meant to be ground up so we had to change a few.  In addition to prescription drugs you have to stay away from any over the counter medications that are time released. I try to find uncoated medicines or liquid formulas if available, these are the easiest and grind up the best.

Communication
Patrick's ability to communicate is extremely limited. When he's not using the Tobii (speech generating device) we use the a-e-i-o-u method I've described in past blogs. I try to stick with questions that require only yes or no answers. With his neck muscles severely impacted his ability to nod has diminished so we use blinks to answer yes or no. I also ask him to "make a noise" to designate yes. Making a noise works at 4:00am when he needs something and I'm trying to figure it out in the dark. This can get confusing though because of his use of the ventilator, he sometimes just makes involuntary noises.

Out Getting Nails Done - We take the Tobii & Respirator

During the afternoon Patrick uses the speech generating device (Tobii). I'd love to report that the Tobii works well all the time, but that just hasn't been the case. It would be awful though without the Tobii, so even with its challenges it is such an amazing tool. The challenges are twofold;

Firstly, it's a Windows computer, so all the problems you have with your computer he has too. Occasionally it locks up or decides not to work requiring it to be rebooted. The software requires updates and he runs the risk of viruses just like everybody else.

Secondly, it uses eye gaze to control the computer which is precisely why we have it, but it has its problems. For someone who is losing his neck and core muscles it can be difficult to get his eyes in constant aliment with the computer eye gaze. If he happens to be placed in his chair at a bit different angle or he starts to slouch, his eyes move away from the computer eye gaze and he loses connection. We spend a bit of time daily, calibrating the eye gaze, moving him in his chair, and adjusting the Tobii.

The other limitation is that it's just not practical to have the Tobii in front of him all the time. Generally he spends his afternoons using the Tobii but the rest of the time we rely on our a-e-i-o-u system or the use of yes/no questions/answers.

Eyes
Since his communication relies on his eyes either through blinking or using the Tobii, keeping his eyes comfortable is a priority. He continues to struggle with acid tears. I don't know what actually causes acid tears but if you "google it" you'll find its a common problem with ALS. The body creates tears that burn and sting.

Jake

Another problem is the occasional item that gets caught in the eye, such as an eyelash. This is a delicate problem trying to remove it without scratching his eye. We use eye drops, but flushing doesn't always work. It can be a bit of a project to get something out of his eye - I'd say my success rate is about 80%. 

Final Thoughts
The life of a person with ALS and his caregiver are not always a "walk in the park." We do our best to find good moments. We read, watch movies and hang out with a funny white dog. 

Hope you are enjoying the start of spring (at least here in California)! Here are some photos from some recent family events.

Patrick and the grand kids - Valentine's Day

At the Movies

Valentine's Day Dinner 2018

How is Patrick Doing? #2

I've struggled this month with an update on "How Patrick is Doing."  I think for me these are the hardest to write, hence I've only posted one - back in March... There are a number of reasons I struggle with it.  Primarily, I don't really know what it's like, I'm merely the sad daily observer to his changing issues and challenges.  I am by definition a caregiver so my perception is perhaps different and jaded by the role in which I play.

So, as you read this blog, I ask you dear reader to remember that this is coming from a caregiver's perspective not the PALS (Person with ALS).

Generally, if someone asks me "how is Patrick doing," I say he's progressing and follow it up with ALS is a degenerative disease, so you are always better yesterday than today. The nitty gritty detail of ALS is not kind, pretty or enjoyable to share and discuss.  It's similar to when your child asks you "where do babies come from..." - they want the truth, but you have to consider how much detail in that moment is appropriate.

So my second struggle is how much do I post on this blog... My feeling at this moment, is to share some things to give you an idea of the challenges, but stay away from the gory details.  There is a blog done by an ALS patient, Susan, in our support group and she writes from a patient perspective - I think she does a great job talking about the daily struggles.  Here is a link to her blog:

http://www.susanssteps.com/

The journey with ALS is extremely individual based on many factors, including, but not limited to, the initial affected area, and the rate it progresses. In Susan's case the ALS started in her legs, so, that is her most challenging area. This differs from Patrick who's initial area was his right hand.

Ok, here is "how is Patrick doing update"... basically he's progressing...

The fasciculations that started in his right hand and arm have progressed to his left hand and arm as well as his legs.  He still has strength in his legs although reduced. His balance is off and he's had a couple falls and a few close calls. The lift we've put off is scheduled for end of August, beginning of September time frame. The stairs are becoming difficult due to his balance issues.

Fatigue is a constant issue which is typical with ALS patients. The simple tasks such as the morning ritual of bathing, dressing, teeth brushing takes longer and is tiring. Initially, Patrick suffered fatigue generally in the late afternoon, but now it tends to be connected to performing various tasks. Conserving strength is important, so that energy is spent on more important activities than the daily tasks.

Patrick continues to work at Blue Shield although he now works at home three days a week. The three days at home are much easier than the two in the office  The mobility challenges and fatigue make those days in the office difficult. We are starting to discuss the time frame for Patrick to go onto disability, this day is approaching.

The continual loss of mobility is difficult to watch, especially with the understanding that you don't get it back. I know that when I started putting on and taking off his shoes that he would never again do this task. There is a sadness whenever these changes take place - I feel it, so I can only assume he does too. I'm learning patience as I watch him struggle with some tasks, I know the importance of maintaining independence as long as possible.

If you are interested in the disease, ALS, there is a YouTube video that was created by Forbes Norris ALS Clinic that does a good job of explaining the disease and the progression process. It's titled, "The ABC's of ALS," if you're interested in the disease in general I recommend you view it.  Here is the link:

http://www.youtube.com/watch?v=0tS4oTKRYfA

There are three parts - the first does a good job explaining the disease. Dallas, the presenter, is the research nurse that we've met a few times at the Forbes Norris Clinic. She keeps us up to date on research, potential upcoming studies and new things happening in the ALS world.

We continue to work through the changes and find alternatives to managing daily activities. We are fortunate to have a strong group of family and friends that help out with various items. Thanks to all you unsung heroes that provide assistance when needed.

Seize the day my friends...

Notes on Life #4

The past month has been a whirlwind of activities with Europe, Caitlin's Graduation, end of year activities and family visits. As wonderful as it all is, I must say it's taken its toll on me and I was glad to head back to work and get a little bit back to "normal," whatever that means these days... So much to recap I hope I don't miss anything...

 

Traveling with Superman and Visiting Shoe Trees

Superman and the Shoe Tree

My parents are at a stage where driving down to Sacramento from Susanville is just too much for them. For them to attend Caitlin's graduation I decided to drive and pick them up.   Susanville is about four hours north of here and it makes for a long 8-9 hour day. Patrick was busy working and Caitlin was in school so I decided to make the journey solo.  Well the week prior to leaving the grandsons were over and I thought, why don't I take Christian on my Susanville trip, he is out of school and just a little bit bored. 

 

So Christian and I headed out on our adventure to Susanville. Our first stop, Starbucks, I gifted him with a Superman cape and hot chocolate - so we started the journey off right. Christian is an easy traveling companion and other than a few stops to run around the car with his cape flying in the wind, he was good to go.

I made Christian a promise that on our trip we would stop at the infamous "shoe tree" and make a donation of a pair of his old shoes. He was a little distressed to part with the "one" shoe with a hole in the toe, but he was anxious to throw the shoes up into the tree. I'm not really sure about shoe tree edict, but we made a wish when the shoe was placed in the tree. I've stopped at the shoe tree quite a few times over the years, I find it a good place to reflect and the shoes always make me smile. If you're ever on the rode to Susanville (HWY 395), take an old pair with you and enjoy the view.  Yes, shoes do grow on trees or perhaps what I should say is "yes, there is a shoe heaven!"

 

Caitlin's Graduation

The big celebration this past month was Caitlin's graduation from Woodcreek High School. It was a bitter sweet moment watching my youngest child graduate. Sweet to see her graduate and know that she is on her way to college and the beginning of adulthood.  Bitter to think that there are no more children at home and Caitlin will be heading to Sierra College.  

 



Me & Sofia (Peanut), Caitlin the Graduate, Proud Dad & Sister

Always a wonderful moment to see your children achieve these milestones. My sister Denise and her boyfriend Mike came out from Arizona for the event and we had a wonderful celebration with Caitlin's friends. The big news is that Denise and Mike are getting married, which is cause for celebration!

 

Support Group

The ALS Association provides a monthly support group for PALS (People with Amyotrophic Lateral Sclerosis) and CALS (Caregivers of ALS patients).  We've attended some of these meetings over the past few months. I've never been to any type of support group meeting before so the experience is new to me. At the meetings they separate the PALS from the CALS so I can only attest to the caregiver side of the equation.  On the caregiver side each person introduces themselves and talks about how ALS has affected them and the challenges they are currently facing. You can share as little or as much as you like. The caregiver side of the group is diverse ranging from current immediate caregivers, individuals that have a more distant connection like a family member that doesn't live locally to people who lost relatives to the disease either recently or years ago.

There are things that I've noticed and are difficult for me at the meetings. Firstly,Patrick & I are younger than most other participants. When there are 40 somethings in the group generally, its because they are the child of an ALS patient not the spouse. At the first group meeting this made me feel sad and more than a little "ripped off," but we don't get to chose these types of things so I try not to dwell on it.  The other thing that makes the meetings tough - at least on the caregiver side, is there is always someone who comes to announce that their spouse, father, or friend died.  They come with photos and many of the other caregivers know them from previous groups.

So, you're asking, why do you attend these meetings... well, I've considered this myself and I think its because there are so few people who understand the challenges with the progression of the disease.  It's really not like other diseases, and it's helpful to hear how others are managing things as the disease progresses. In fact, the contractor who we purchased the lift from was a referral from another support group member. So the information is truly invaluable. 

 The other reason is that there is comfort in knowing that PALS and their caregivers still lead quality lives and do remarkable things, even with such a degrading disease. I find many of the caregivers to be inspiring and I enjoy hearing the stories they tell about their PALS. I can't speak to why Patrick attends and it has to be difficult seeing people at various stages of the disease, but he seems to get something out of it too.

My hope is that someday there will be a cure and there will not be a need for support groups, but for now it does provide an invaluable service to all that attend.

Did Someone Say Road Trip?  "Get Your Kicks on Route 66"

Patrick and I have talked about taking the old Route 66 from Chicago to Santa Monica over the years. It's a long trek, 2,448 miles, and we estimate it will take about two weeks to drive and enjoy all the sights along the way. Over the years Patrick and I have done many road trips, even traveling at one time from Sacramento to Harrisburg, PA. There is nothing like the open road and I don't think there is anything more traditionally American than taking a road trip on Route 66.

 

The dates are still being considered, but it looks like August/September time frame at this point. Although the traveling is slowly getting more challenging we both value the time we spend together and the sights along the way.

Odds and Ends..

Pretty Feet

The girls took Patrick to the nail shop for Father's Day to get his first pedicure. I rarely do this, I find it strange to have someone "working" on my feet and it scares me that they have clippers. Yep, not my favorite thing.  For Caitlin, Corrinne and Patrick though, they had a great time.  If you're wondering... no he didn't get his toe nails painted although we tried to encourage it:)

 We are in the midst of planning Patrick's 50th birthday in September. Should be lots of fun. I want to say thank you to Pat Kennealy, for your email it was really sweet. If you don't know Pat, he is an old friend of Patrick's dating back to his EDS days. Pat does some of the best BBQ we've ever had and has agreed to help with the birthday party food. Patrick is lucky to have such a good friend.

Hope all is well with you and these hot days find you inside with a cold drink!

Things to Look Forward to...

 

July Denise & Mike's Wedding in Sedona, AZ

July Visit with Timmons' Family in Littleton, CO

August, Hot August Nights, Reno

September, Route 66 Trip

September Patrick's 50th Birthday

October 5 - ALS Walk, Sacramento CA

November - Anthony's 9th Birthday