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's Patrick Doing? #11 - Part I: Mobility & DME

I started this "how's Patrick doing?" blog with the thought that it would be brief, 

Hanging out!

just more of the same. As I put "pen to paper" I realized it's not really that simple. The last update was over six months ago and although I don't see changes daily, there are a number of differences. I've decided to split this into two parts. The first part addressing his limited mobility and DME (durable medical equipment) and the second part his respiratory, speech and bulbar (the area of head and torso) issues. 

These updates are difficult and yet enlightening because they require honest reflection and assessment. I consider our daily routine, recent challenges, and differences in his needs. In regular life, I just manage the day and don't really look at the bigger picture. But, occasionally it's important to pause and consider the ALS progression.

Just a reminder, ALS progression is unique to the individual. Although there are patterns to the disease based on where it first manifests and the speed of progression, everyone's journey is different. Not everyone gets every symptom; Patrick has muscle cramping and spasticity, but only about 30% of ALS patients have these issues. He's just one of the "lucky" ones, I guess. We passed the five year anniversary of his diagnosis in December. The average life expectancy for ALS patients is 3-5 years so his progression is slower than most.

DME (Durable Medical Equipment)
Until ALS, I had never heard the acronym DME, let alone know what it meant. I guess it's more of an insurance term because it's referenced on most of Patrick's paperwork. We use many items that fall under DME. Yes, we are quite dependent on equipment, machines and technology. For us and many ALS patients, DME is where medical costs really add up.

Recently, we met a couple at the movie theater. The husband was in a power wheelchair. We sat with them in the disability section and chatted after the movie. His story was that he had been in a car accident and broke his back, leaving him paralyzed. She pointed out that Patrick had a really nice chair. After the accident she said, " I realized how important DME was going to be." Sadly, she also found out that his medical insurance had a DME lifetime cap of $25K. I thought about this - boy $25K - that doesn't cover much and wouldn't cover the cost of Patrick's chair, not to mention all his other DME. Off the top of my head our DME items include his power wheelchair, hoyer lifts, walkers, ventilators (trilogy), cough assist, suction machine, Tobii (speech generating device) etc. etc. Let's just say we've gone WAY over $25K. There is no "point" to this story, other than to say I am grateful we don't have this cap.

I'm not a fix it person... I have tremendous respect for the tinkerer, but it's just not me. So, the upkeep, knowledge, maintenance and trouble shooting on all the DME items are a source of stress for me. 

Recently, I was transferring Patrick in the battery operated lift from the shower chair to the bed.  As I lowered him onto the bed, the lift stopped with Patrick dangling in mid-air. In the moment, I thought, "ok, we'll figure this out and thank goodness he's hanging over the bed."  I used "The Google" (as my mom calls it) and downloaded the owner's manual. After a bit of time, I determined how to lower him onto the bed with the emergency release. It's only later that I thought, "holy cow that could've been bad." I figured out the next day, that the battery was dead and no longer holding a charge. Fortunately, I was able to get a replacement battery through the ALS Greater Sacramento loan closet. Technology dependence has it's downside. 

I'm not able to defer these troubleshooting jobs, its just me and things have to be fixed. I've developed a fairly comfortable relationship with the following items: krazy glue, rope, duct tape, velcro and zip ties. So, when Patrick's power chair controls broke off recently, I used a zip tie and then krazy glue to put it back together. Seems okay, so far.  It's not covered under Medicare and they run $1,000, so I'm hoping it will stay together.

Broken controller held on by temporary zip tie.

The power chair has been modified a number of times over the past year. We added a new back cushion, arm troughs, lateral and hip extensions, and attendant controller. His core muscles are deteriorating and this creates a number of challenges for him and for me. For example, the new back cushion helps to combat pressure points. Constant pressure on bony points can cause bed sores so were working to avoid this problem. 

Mobility
At this stage from head to toe, Patrick has very limited mobility. Starting at the top, his neck muscles are extremely weak. He is a bit like an infant where you have to cradle his neck during transfers or when rolling on his side. He leans left and his head needs to be turned straight throughout the day. In bed we add a pillow to keep his head up right. His ear often gets folded and has developed a bit of a callus.

Throughout the day, I shove his shoulder to straighten him out. The new lateral extensions on his chair help his upper torso to stay in place, but they can't help with his head and shoulders. His arms, hands and shoulders are completely immobile. His shoulders are bony with significant muscle atrophy. We changed out the back cushion with an "air cushion" type which allows for greater comfort and support. This cushion combats the bony points that lay against a back surface. Pressure points are a common problem with the lack of mobility and muscle atrophy.

With his core muscles deteriorating, throughout the day he slouches and sometimes we put him all the way back in his chair to scooch him back in the seat.  When transferring, it's important to get him straight in the lift so that he starts straight in the power chair. Adjusting his body after he's placed, is limited.

His legs and feet are now showing signs of the disease. We elevate them in the evening to reduce fatigue on his knees.  His ankle is starting to curl which occurs due to the muscle atrophy. The addition of the hip extensions keep him in place and his legs straight. His remaining strength in his upper legs, allow him to push back in the chair. The lower leg muscles have thinned and lost much of their strength.

With a lack of mobility and muscle definition we work to keep him comfortable.  We use pillows, blue booties and blankets to cushion him. When using blankets you have to adjust them so they don't weigh heavily on his feet and ankles. With the ankles and feet being weak the weight is uncomfortable and can cause sores on his toes.

The physical therapist has prescribed range of motion exercises. We started these a few years ago. Initially, he used his own strength to complete the exercises, now the movement is entirely done by me. The goal is to avoid frozen shoulder and to keep ligaments moving.

There is an increase in spasticity and clonus.  When he coughs, he often becomes rigid and shakes. This makes transferring harder and on a couple of occasions he nearly slid out of his chair. These symptoms are exasperated by stress and can be extreme. We've had some close calls but fortunately no permanent damage.

It's sad to reflect on all these changes. The loss of movement is horrible and creates a whole new list of issues. We work to combat potential problems as to not make things worse. He can still move his right index finger a little... go figure...

Next blog - Part II: Respiratory, Speech and Bulbar Changes

Stretch out today, run a mile, do jumping jacks, walk, the body is an amazing instrument.

Friends, Loss & J.t.

Chester and Caitlin

When Caitlin was little, we decided to get a dog. We just purchased our house and the time seemed right to bring home a 4-legged family member. We adopted Chester, at the Placer SPCA after spending months looking for just the right dog. I told a friend at work about our new addition and he immediately responded with - your daughter is so young, do you think that's appropriate. My immediate thought was that he was concerned that the dog might do her harm, so I responded that we did our due diligence and took the time to find a dog with just the right temperament. It surprised me when he said, "no, aren't you concerned that the dog will die and it will be traumatic for Caitlin to suffer such a loss." I honestly never thought about it quite that way - I really didn't have a response other than to say, "no, I hadn't thought of that."

He was right, of course, Chester did die when Caitlin was a teenager and she was saddened by the loss. On the other hand, I've never regretted the decision to adopt Chester, he was such a wonderful dog and companion for all of us. Yes, we all suffered pain from his death, but to not have adopted him - that would've been a much greater loss.

Since Patrick's diagnosis we have participated in ALS Association activities, support groups, and the Walk to Defeat ALS. We've developed friendships, connections and shared ideas and support with many ALS families. Not everyone chooses to engage in these activities and develop relationships - this is a personal choice. For us it's been such blessing and I am grateful for the many people we've met along the way. We knew making this choice that we would suffer the loss of friends, a sad reality of the disease. And we have lost our share of friends on this journey, frankly some of the best people I've known. My reaction to loss has not changed - shock, numbness, grief. It never gets easier, and you never get use to it.

J.t. and Rebekah at my 50th Birthday Party

Just before Christmas, we got the news that a fellow ALS traveler and friend, J.t. Inocencio passed away. He was diagnosed in November, 2013 at the age of 42. He leaves behind his wife, Rebekah and two sons, Jacob, 13, Mateo, 8 along with a huge group of friends and family. In fact, Patrick said, "they would probably need to hold his funeral at the Golden 1 Center to accommodate everyone." Funny, but not far from the truth, the reception afterward is at a sports center. He was loved and admired by so many including Patrick and I.  J.t. shared his life and ALS trials on Facebook. He wrote about his concerns of how ALS impacts his children, his wife and family. He inspired, challenged and pushed everyone he knew to seize the day and live in the now; but above all, be grateful. Here is one of his final Facebook posts,

Physically disabled but mentally able to dance to the record playing on the turntable. 

Trapped in a physical form as my mind prepares to weather the storm. 

Your eyes upon me see death essential but inside this brain is unlimited potential.

I cast my cares on the man upstairs which allows me to live free without being scared. 

A servant I am for the king of kings shining light on the darkness as the Angels sing. 

Each day is a gift for all of us but instead of being grateful we whine and fuss. 

Tomorrow nobody is guaranteed so Seize the day and look to succeed. 

If you're struggling daily just tryin to survive Keep moving Forward with eyes, to the sky. 

#AttackLifeSmiling

He was strong in his faith, it never wavered throughout his diagnosis. He encouraged everyone to embrace their better selves and be grateful for the moment. His hash tag was #AttackLifeSmiling. He had a wicked sense of humor and tremendous love of life. He didn't sugar coat things, instead he was brutally honest.  He described being hoisted in the hoyer lift, bathroom challenges and using medical marijuana, all in great detail. Yes, on occasion I wondered how Rebekah felt about his candid posts, but if she was concerned she never let on.

Both J.t. and Rebekah have been tremendous sources of information and support for Patrick and I. I am grateful for their friendship and will continue to be inspired by J.t.'s approach to life.

In one of his final posts, he discussed his concern on the impact of ALS on his sons. I've considered this for my daughters and grandchildren too. I'm not going to sugar coat it - I think it's a mix of good and bad.  My belief is that Jacob and Mateo will grow up to be thoughtful, caring men that will make the world a better place. What J.t. showed them was grace, and dignity in facing life's challenges. These are lessons we all hope to pass on to our children.  

When Patrick and I go out, we rely on the kindness of others to open doors, hold the elevator and help clear a wide berth. I'm always a bit surprised by who comes to our assistance. Generally, anyone I ask will help, it's those who rush to help before being asked that I wonder about. What is their story? It's not any specific age, gender or ethnicity - no pattern that I've ever noticed. Instead it's my belief that they have a story - something or someone taught them to look around and help others. I know Jacob and Mateo will run to get the door for us - of this I am certain. 

So farewell J.t., we are grateful for your friendship, honesty and incredible ability to see the bright side. We are better people for knowing you. #AttackLifeSmiling

Now That's Funny

Sean and Family Visited Us Recently

The world is a crazy place these days, add in the holidays and ALS and it just makes for a stressed out time of year. Lately, I've been feeling my annual mixture of longing for people who've passed and wishing ALS wasn't part of our story. As much as I love the holidays, I always struggle with a mixture of feelings. However, there are plenty of things to enjoy and be thankful for throughout the holidays; grandchildren, Jake, pumpkin spice, egg nog, Christmas music, and decorations, to name a few. Luckily, I generally snap out of the negative feelings pretty quick.

I was talking with my sister, Denise, and we were having a sad, heavy discussion. I do, on occasion dive into black holes. I think we both realized we were being a bit gloomy, so Denise asked how's the Christmas decorations coming along. She knows I have a bit of an obsession for holiday outdoor decor. I told her, "It's all good, I've got Rudolph the Red Nose Reindeer playing in the window, just about every inch of the front and side yard lit up and I'm hoping to put out the last of the holiday figures this week. I paused and told her, "yeah for a brief moment this week, I stood in front of the house admiring my decorations and thought, "wow, you've really gone over the deep end this year."

Denise laughed and reminded me that I was talking to a woman that is collecting little holiday birds from Target and is now nearing 20 birds. She tags and names each bird. Honestly, they are pretty cute.

 "The Tweets" Aspen, Sierra and Whistler - Denise's Birds

It was such a wonderful moment of release... the conversation turned pretty quickly to our dad at Christmas. He would take the family out to the woods to chop down a tree. He had an incredible knack of finding the most disfigured, sad, sorry looking tree. In future years,  Patrick would label dad's tree selection "the Charlie Brown tree." We all looked forward to seeing the tree each year.

I am reminded of the power of laughter in difficult times. It helps us to cope and with ALS, reminds us to laugh at the absurdity of it all. A few years back in a support group meeting, there was a moment of levity amongst caregivers, honestly I don't remember what was said just that it was funny. I remember a new caregiver after the meeting complaining that laughing was not appropriate and that ALS is a very serious disease. I thought about this gentleman many times over the past few years wondering how he's doing, he never returned to support group. The truth is he's right, ALS is a very serious disease. What he failed to recognize was that everyone in that room knew that. We don't need to be reminded, we know how this disease progresses, we know the statistics, and frankly we know the outcome. But those brief, wonderful moments of laughter make a serious diagnosis bearable.

Some of the funniest stories I've heard come from ALS caregivers and patients, as strange as it may seem. One of the most stressful events for me, in this journey, was learning to use the Hoyer lift. I felt very overwhelmed psychologically and it was a struggle to figure out a process. It drove me to tears a couple times. Patrick has a great sense of humor and knows when I'm stressed, so at one point during this process as he's dangling from the sling, butt naked, he yells to me "take a picture for the blog." Honestly, in the moment it wasn't that funny, but afterwards hysterical.

Elevators with a power chair are a bit of a challenge. The doors shut too quickly for a disabled person to get in (they need some kind of delay system), and often they are shaped incorrectly. There is an elevator in Patrick's doctor's office that is a pain in the arse. It shuts quickly and is shaped rectangular making it necessary to turn in the elevator. As the disease progresses, it gets tougher and tougher for ALS patients to control their power chairs - yeah watch your toes. Before Patrick turned over controls to me, which he still hates, we had an "incident" in this elevator. In addition to the weird shape, the building decorators thought to put a "painting" in the elevator that stuck out from the wall.

Patrick was getting in as tightly as he could, allowing me to stand behind him, when we heard a ripping sound. I wasn't sure what the noise was from, but as he continued to get his chair adjusted we heard more and more ripping noises. I finally noticed that the "painting" was dangling off the wall by a piece of Velcro and stuck on the back of his power chair. When we arrived at our floor I casually velcroed it back to the wall, smoothed over the tear which was pretty good size and we both started laughing. You gotta laugh at this stuff. Come on, who thought having a painting stick out 2 inches in a medical elevator was a good idea. Now don't worry I don't think it was a Van Gogh or Picasso, so no masterpieces were damaged. 

Humor and laughter is found daily in our lives, here are a few of the things that made us laugh recently...

This is Elizabeth, our youngest grandchild. Don't be fooled by the cute face, this one's trouble. Recently, she went through our bathroom cupboards and found feminine hygiene items, removed the tape and stuck them around the bathroom. -- Not sure what the plan was, but she was busy.

Elizabeth

Jake loves the Christmas tree, he disappears during the evenings to the front room to sit and stare at it. He moves from couch to couch.

A few years back our Elf on the Shelf, Fred disappeared. So, Jack Skellington now makes his annual appearance - he's got a bit of an attitude.

Here are this year's outdoor decorations, still a work in progress...

No, you will not find a photo of Patrick in the Hoyer lift - I do have limits.

To you and yours Happy Holidays & Merry Christmas! Wishing you a peaceful 2018, in which we all strive to be our best selves.

Advice for the New Caregiver

2017 Walk to Defeat ALS

My caregiver journey started with buttoning Patrick's shirts and clipping his nails. Fast forward about five years and my list of duties includes everything from showering and bathroom to managing equipment and prescriptions (and all things in between).

Being that November is National Caregiver's month, I've decided that I have some advice for the new caregiver or advice to my prior self of five years ago. At this point, I have a pretty good understanding about being a caregiver - I guess I consider myself an expert in the field (no credentials, no certificate, no three letters after my name... just on the job experience).

My first bit of advice is about... advice

Take it or Leave it... "Friendly" Advice
Through this journey you will get lots of advice, suggestions and opinions. Honestly, I've received some great advice from a variety of sources. Sort through the advice; it's ok to ignore some, it's ok to laugh at some, and its ok to say thanks, but no thanks. Generally people have the best of intentions so be thankful for their interest, but know that you are not obligated to take it.

With that being said, you are welcome to embrace my "pearls of wisdom" or "discard in file 13." Or do what I generally do - "cherry pick."

No One Stays the Same...

One of my favorite artists, Leonard Cohen states in the song, A Street

"I’m standing on this corner, where there used to be a street"

This is such a great description of how it feels when your world is abruptly changed with an ALS diagnosis. Life as we know it has ended and where do you go from here? I don't have the answers for that, all journeys with ALS and in life are unique. Which way do you go, left or right? I can remember standing on that corner for a long time when Patrick was first diagnosed feeling paralyzed.

You'll stand there for a while too... wallowing in self pity, angry at the world and unsure of where to go from here. It is one of the most painful memories I've had on this journey. 

I can guarantee you one truth, you will never be the same again. None of us get out of this journey the same as when we started. Where we end up, I don't know the change is ongoing, but I know parts of me are profoundly different than five years ago.

I'm not the only one in the family that has changed on this journey. Caitlin, who is now a Gator at SFSU, came home last week to join us on the Walk to Defeat ALS. While I drove her from the train station she talked about the sushi place she liked and the theater she went to with her roommate. During her discussion, she mentioned the handicap access at both locations. It wasn't her primary focus, it was just her observations of "how dad could get in with his wheelchair or not get in as the case may be." It dawned on me that she would forever be influenced by this journey. I'm not going to qualify this change as good or bad, frankly it just is.

You Get to Have Feelings Too...

You will not make it through this journey without allowing yourself to mourn, be angry and experience sadness. You will have losses on this journey. No matter how you manage caregiving, you will make sacrifices. You cannot take care of an ALS patient and continue to do everything else you did prior to ALS nope, it is not physically or emotionally possible. You are allowed to be sad and mourn these losses.

I quit my job four years ago and over the past few years limited my volunteer work. Do I miss these activities? Of course I do. Do I regret my decisions, no I don't. But that doesn't mean I don't feel a sense of loss and sadness. I give myself permission to grieve, I find it's easier to manage feelings when they are acknowledged and recognized. It also says that I am important and my losses are as real as anything else. Which leads me to...

You Are More Than a Caregiver

Yes, you will give things up on this journey, but don't give up the things that make you - YOU. It is important to have an identity outside being a caregiver, don't get swallowed up. For many years prior to ALS, I put on a Girl Scout Halloween party for over 100 scouts. With a group of Girl Scout friends, family (including my supportive husband, Patrick) and older girl scouts we put together a fun evening that included everything from a Halloween dinner with zombie wait staff doing the thriller dance, to mad scientists, and gypsy fortune tellers. 

Past Girl Scout Halloween Party

No, I can't put the energy I use to into a Girl Scout Halloween Party. But I still enjoy Halloween by doing a family dinner, decorating the house and helping with the grand kids costumes. I get lots of nice compliments from the neighbors on our decorations and it allows me to continue being creative... I've been blessed with a supportive husband who rarely says I think that's a bad idea. Although, he did tell me that the 9 foot T-Rex skeleton is too big to store in the garage.

You need to determine what things you love and want to continue, than adjust and find a way to continue to do these things albeit differently. You are more than just a caregiver, find other important things that define you. 

How We Measure Up

Halloween 2017

I'm not sure why, but you will make comparisons to other caregivers. I had a fellow caregiver tell me, "you are amazing, how do you do everything." This came from someone I thought was in the "sainthood" realm of caregiving. For some reason we make comparisons; wow, they are doing so many activities; wow, they are really happy all the time; or wow, how do they have so much energy. Yep, we compare. I give myself permission to make comparisons, but I stop short of berating myself for things I don't seem to do as well. The truth is we only see what is presented to us and I suspect even the best caregivers have bad days.

When you're at the beginning of this journey, its really easy to say, I won't do this or I would never do or say that. Be careful, things often look different five years later and you might surprise yourself. Don't pass judgment on other caregivers' decisions. We all make the decisions that work for us based on our strengths and in a particular moment.  You may or may not make the same ones. That does not make one way right and another wrong. We are different people all working to meet the challenges presented.

Dumb Things People Say...

If you haven't already, just be advised that you will have strange, unthoughtful things said to you on this journey. Very early in Patrick's diagnosis at a party, a woman (someone I had just met) proceeded to tell me why she would leave her husband if he were to get ALS because the sacrifices would be far too great for her. I wish I could say I said something clever, but I just stood there a bit dumb founded. She went on for at least five minutes explaining all the reasons it would be too hard and at the end handed me her phone number and told me to call her anytime. All I can say, is that her husband is one lucky guy;) Yes, I'm being sarcastic and no, I never made that phone call.

Sometimes I think people just don't realize what they are saying. Which leads me to...

Forgiveness

Get angry, stomp around, watch revenge movies and then... forgive. You just can't hang on to things forever. This is NOT a fair diagnosis and the journey does NOT get easier. Allow yourself to feel and be angry and then let go. Let go and forgive, not for other people's benefit but for yourself - you will go crazy if you don't.

Forgiveness is so powerful. It allows you to reflect and release... It takes the power away from ALS or the person who wronged you and returns it to you.

I've also learned to forgive myself. I'm not a saint, I get tired, I have bad moments and I have anger; at the disease, at stupid comments and at a variety of other things. I forgive myself and acknowledge I'm doing the best I can and frankly I'm doing ok as a caregiver.

Awesome Responsibility

Being a caregiver is by far the most awesome responsibility I've ever had. It's a bit scary at times. I remember when they first delivered and spent a couple hours explaining the respiratory equipment. I kept thinking, am I the right person for this, I have a degree in accounting. The truth is no one would volunteer for this job without loving the person they care for, it's all about love.

Finally, and most importantly you'll be fine and you'll make things work. Remember the saying, "you can't see the forest for the trees." In ALS this is a a good way to look at things. Concentrate on the trees immediately in front of you and leave the forest for another time. Not the usual way to look at problems, but a little at a time tends to work with ALS.

Happy National Caregiver's Month and a huge thank you to all my fellow caregivers! Never doubt what you do is important and makes a difference. 

I'll leave you with some pictures of our Halloween decorations. Happy Fall and Happy Halloween!

Loss and Connection

Eclipse

On my morning walk, I stopped at the Aquatics Center parking lot to conquer a Pokemon gym - yes, I enjoy catching critters, hatching eggs and fighting gyms in the virtual world. While I sat and was just getting ready to leave, a car drove up right beside me. Bummer, I figured they were Pokemon players that wanted to take over my newly conquered gym. The SUV stopped and a lady got out with her phone in hand. Bummer... We made eye contact and much to my surprise she began to cry and very quickly started telling me about her son, who was missing and had not taken his medication.. She spent about five minutes describing her son who had schizophrenia and her concern that he would do harm to himself in his current state. I wanted to tell her something to console her, some words of wisdom to make it better, but I had nothing. She left as quickly as she came with someone calling her to say they found her son - off she went.

It was such a brief moment and yet I've spent the past few hours thinking about it. The truth is I've been thinking about how sorrow unites us all. We mourn for the hurricane victims in Texas and Florida; and the earthquake victims in Mexico. We are miles away and yet we are greatly saddened by the devastation and human loss. We are all connected. I couldn't help this lady, but I could listen. I don't know what it would be like in her situation, but I had empathy for her feelings and felt her pain. I hope she found her son and she's able to get him the care he needs, but I doubt I'll ever hear the end of her story.

The truth is I believe our greatest connection to one another is not happiness or shared joy instead it's our connection during sorrow and grief.

"Grief and sadness knit two hearts in closer bonds than happiness ever can; and common sufferings are far stronger than common joys" Alphonse de Lamartine

Perhaps I've been thinking about this lately because we got word of an old friend's passing and another we lost to ALS.

We received a call from Mary Ellen Webb, an old friend who let us know that her husband, Russell, had passed away. This came as a shock to us, Russell was one of the first people Patrick met when he went to work at Electronic Data Systems (EDS) back in the early 1990s. He and his wife are such kind people it really saddened us to hear of his passing. Here is a link to his obituary
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Cheryl & Mike Strella

Additionally, on August 31st we lost a fellow pALS, Cheryl Strella. Cheryl was a strong advocate for ALS patients and traveled to D.C. to draw attention to the needs of pALS and their families. Cheryl was a nurse and later an associate professor at Sacramento City College. Because life has it's full circle moments, one of the hospice nurses that cared for Cheryl had been one of her students. Here is a link to her obituary - she lived a full life, albeit too short. 

Cheryl's husband Mike and I have shared concerns and stories in support group and an occasional instant message - my prayers and thoughts are with him and his daughters.

If there is an upside to my recent thoughts on loss, its this... even with all the division today, there is so much more that unites us, than divides us. We are all connected through our shared humanity.

I hope this day finds you well - the weather is improving (here in Roseville) and my walks are much more pleasant.