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. 

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...