A Lot of Stuff

Patrick and Jake

J.T., a friend and ALS patient, regularly uses the hash tag - #attacklifesmiling, he's a positive guy so it fits perfectly for him. For me I think ALS stands for A Lot of Stuff, because my house and life is bursting with machines, equipment, and supplies. I've never been a stuff fan it has always created a bit of anxiety for me. In fact, I've been known to go out of my way to drop off things that were left at my house. But here I am an ALS caregiver with lots of stuff to take care of, find space for and often learn how to use.

For years, I volunteered as Service Unit Manager for Girl Scouts in Roseville. We had around 85 troops, about 150 leaders and over 800 girl scouts. I worked with a group of women that were a lot of fun and made it all run. Girl Scout leaders and volunteers acquire A LOT of stuff. This was probably one of my greatest anxieties when managing leaders and the service unit. For those I worked with, they all knew that if an item was going to be purchased one of my first questions would be "who is storing it?" Nothing annoyed me more than to come home and find boxes and bags of troop equipment, craft supplies etc. sitting on my porch. It happened every now and again and it made me crazy. 

Fast forward to now and like it or not I live in a world full of ALS stuff. Just for the "fun of it" I put together a list of the items that came quickly to mind...

shower chair
ramps
blue booties
formula - cases
syringes
cough assist machine
cough assist machine supplies: mask, cushions, hose, filter
trilogy ventilator 
trilogy ventilator supplies: mask, cushion, hoses, filters, distilled water, canister
suction machine
suction machine supplies: tubes, sucky thing, filters, canister
speech generating device, travel bag, and bar attachment
gyro mouse, Microsoft surface and big clicker
medicine - prescribed and non-prescribed, liquid, powder, spray and pill form
pill grinder (2)
pill cutter
pill boxes
gauze pads, medical tape, saline solution
hoyer lifts (2) - one electric, one manual (back-up)
slings (2)
urinals
power wheelchair
extra seat cushion for chair
leftover parts from power chair adaption
manual wheelchair (backup)
walker
foaming liquid soap - non-fragrant
neck brace
neck pillow
blanket rack for over the feet
lift
van
towels, pads, blankets, pillows
and straws, lots of straws

It's like that old wedding rhyme:

Something Old - Van (we opted for purchasing a used van)
Something New - Supplies for the machines, general supplies and feeding tube items
Something Borrowed - Hoyer lifts, walker, shower chair, manual wheelchair (all borrowed from the Greater Sacramento ALS Association)
Something Blue - Patrick's highly valued "blue pillow booties." 

Jake admiring the blue slipper booties

Patrick's blue booties are big blue pillow slippers he wears when he goes to sleep - these help combat bedsores which often occur on the heals of the feet. He says these slippers are awesome.

As you can see from my list - even the ALS stuff has stuff. I coordinate all the supplies for the various machines, order prescriptions, make sure everything stays in working order, provide regular equipment cleanings and take out/put in the items from the ALS Association loan closet. I feel a bit like Radar on MASH - remember him, he was always doing inventory and completed all the necessary paperwork to get the supplies the unit needed. 

PEG Surgery Anyone?

Recently I was given a surgery kit for a PEG tube. I only needed the head of the tube, but the nurse said "here you can have the whole kit." It sits in my kitchen, I've not been able to throw it out - what I'm going to do with it is a mystery to me. I was thinking about letting other ALS caregivers know that I was trying my hand at PEG surgery, in case there is a need. 

I try to ignore the additional stuff that is accumulating and most of the time it works. Lately though, I feel a bit overwhelmed by the amount of stuff and I'm struggling to find new places to store things or at least hide them on the occasion we have company.

I saw on the news recently that thieves are stealing packages off front porches. I kind of chuckled at what a surprise a thief would have if they stole a box from our porch, perhaps a 6 foot tube or replacement mask. We get plenty of packages so the thief would think he'd hit the jackpot. The respiratory company sends supplies in separate boxes so instead of one box, we get six. I'm sure they have their reasons, but it seems a bit of a waste.

I'm not 100% sure where I'm going with this blog - there is no real point. The stuff is here to stay and likely there is more to come. Of course I'm grateful for the stuff and life would be difficult without it. But, I think I'm reaching my stuff limit. 

Gleason Movie

During my "free time" I tend to avoid ALS websites, ALS organization Face book pages and ALS movies. I do keep up with a couple ALS blogs, but not many. Shelly, an ALS patient, made the comment when I asked her how she was doing one day, "I'm living the dream, baby." This cracked me up. So, I guess the primary reason for avoiding all these "ALS things" is just this - I see ALS up close and personal every day, and frankly it's not pretty. There are three ALS movies, that I know of, that came out in the last couple of years; "The Theory of Everything," "You're Not You," and "Gleason." 

Nope, nada, no thanks, I'll take a "hard pass" on these films. When asked, I always say, "Nope, I'm living the dream..." I am however, a movie lover, we go out to the movies at least twice a month. Just this past month I've seen Lego Batman, Split and John Wick, Chapter 2 - just fun movies, a diversion from daily life. Before I press on, I will say that I've heard nothing but good things about each of these three ALS movies, so I suspect they all have merit.

Patrick didn't show any interest in the "The Theory of Everything" or "You're Not You," but he did want to see "Gleason." Steve Gleason is a well-known ALS advocate in our world. He championed a bill that allows ALS patients access to Speech Generating Devices through Medicare - called the Gleason Act. The bill was passed by Congress unanimously and signed by the President in July, 2015. How many bills do you hear passing unanimously in today's political climate. He heads up his own foundation and generates funding for a number of ALS issues - Team Gleason. He is also an ALS patient and former New Orleans Saints' player. His contribution to the ALS community is undeniable, however, I just wasn't interested in the film. I saw part of an ESPN special, A Football Life, that he did early in his ALS diagnosis where he "climbs" with another patient, Machu Picchu and frankly I just found it a bit ridiculous. But, Patrick really wanted to see "Gleason" and its available through Amazon, so I told him I'd be around during the movie, but I got things to do. Nope, nada, no thank you... 

As you can imagine, I got drawn into the film, frankly not because of Steve Gleason, although, I did like him, but more because of his wife, Michel. Her feelings, comments and sadness were so incredibly real. I got her. She makes the statement in the film that "ALS is a complete mind fuck." I had to stop the film, look at Patrick and say - yep, that is exactly what ALS is! Frankly that's the best definition of ALS I've heard yet. At one point in this journey I had someone tell me ALS is a blessing... nope, not a blessing, but "complete mind fuck" yep, I'd agree with that... 

On a side note, I must say that the generational story with Steve and his father and then Steve and his son is such a human story. How we grapple with mortality, religion and beliefs, what we want for our children and how we learn to accept our differences. This is beautifully done in the movie.

"Gleason" is not sugar coated and is a documentary so you're watching, real people, with real reactions and feelings. I worried that there would be fanfare at the end, that all was great and wonderful - but there wasn't, nope it was real. There is even a scene with Steve and Michel in the bathroom. Constipation, urgency and diarrhea are realities of ALS - sitting in a chair for about 12 hours a day is not good for the bowels. We've had our share of problems - it's not fun for him and it's not fun for me. Rushing to the bathroom in an "emergency" is not possible with ALS - nothing can be quick. In our house that means getting Patrick onto the lift, sending him upstairs, getting him off the lift, transferring him with the hoyer from his wheelchair to the shower chair and into the bathroom. If you need to run to the bathroom - you can forget it.

I think probably, the most profound discussion for me with Michel was her description of herself before Steve's diagnosis. She talks about how she "use to be" much more funny and happy. She didn't think that person would return. I've had the same experience, my former self was a bit less "heavy" and certainly much happier. Sadly, I don't think you get to go back. Bruce Hornsby, wrote a song (made popular by Don Henley) called "End of the Innocence":

But this is the end
This is the end of the innocence
Who knows how long this will last
Now we've come so far, so fast

But, somewhere back there in the dust
That same small town in each of us
I need to remember this
So baby give me just one kiss

I suspect it's a bit more of a political song, but for me it really has a different meaning. I think the end of innocence is about things that happen and force us to become scarred or cynical and frankly ALS does this in spades. We get a big dose of life isn't fair, really awful stuff happens to good people and a reminder that we not in control of what happens to us. Such as when Bruce says, "When happily ever after fails and we've been poisoned by these fairy tales." 

"Gleason" is a tearjerker and I'll be honest, I had to do things while watching it. This often makes things easier for me to digest. But, I think it really captures how one family manages an ALS diagnosis. ALS journeys are VERY personal and families manage differently so this is really Steve and Michel's story - along with other family members, friends and caregivers.

A couple of items I think are important to note in the film. The first is that at one point Steve has a stem cell procedure. There are a few different stem cell trials going on throughout the United States - they are in the early stages. I think it's important to note that most ALS patients do not have access to stem cell treatments. Only a very small group have been accepted into these trials. This is not my area of expertise, but one of the major challenges for stem cells is how do we get them into the body. There is no FDA approved stem cell treatment. I've often had people say to me that Patrick should get stem cells and generally I joke to myself, "yep, I'll just head on down to Walgreens and pick some up." - pardon the sarcasm.

The other item in the film that I think bares a bit more discussion is the statistic towards the end of the film that states that about 95% of ALS patients do not opt for a tracheostomy due to the high cost of care. I think this is a bit oversimplified; absolutely money figures into this decision, but not exclusively. Frankly, I've yet to meet any ALS family that hasn't stressed over some health care cost. But, I think there are two other significant factors in making this decision, first and foremost - quality of life. ALS patients have to make their own decision about what is quality of life and this is very personal. Secondly, I think there is an undeniable impact on the people around an ALS patient beyond just financial. We were told at Patrick's diagnosis that this is a family disease - nothing could be more true.

I would rate "Gleason" - 5 out of 5 Stars - definitely worth watching, but be prepared to cry and note that this is not a Disney movie - no princesses, no knights, no happily ever afters, just real people, managing a real diagnosis. And just for the record I'm glad I saw it. 

Time and Energy - Figuring Out What is Important

Us

One of the things that you learn early in an ALS diagnosis is that there is limited time and energy during the day. For an ALS patient, simple tasks and movements take much longer and require more energy. I've often heard patients and caregivers say we limit outside activities to at most once a day because that's all we can manage. This is also true for us. The work to make things happen is so much greater at this point in our lives. Because of this, time and energy have taken on new meaning and we must discriminate on where we chose to spend it.

As a caregiver, I find I also have limited time and energy. This is a totally new phenomenon for me and it causes me stress. For those of you that know me, you know that I like being busy. My stress comes from not doing all the things I want to. Before ALS I always felt I had no limits on how much I could accomplish, so now I'm learning to work with limitations. I have to look at things and ask, is this important or can I let it go. Very few things are absolutes, except my most sacred time spent on my morning walk. I'm very protective of my time in the morning... it keeps me sane.

Jake, on our morning walk in his nice red jacket,
a gift from Patrick...
Picture taken before Jake decided he didn't like it.

In addition, to managing my own priorities, I'm challenged with Patrick's priorities. At this point, there is not a lot he can do without my assistance, so if he wants to do a project of any kind, my involvement is generally necessary. This creates stress between him and I, because frankly sometimes what he sees as a priority isn't even on my radar.

This year, in March, I turn the big 5..0... Patrick has been planning my birthday party pretty much since I turned 49 last year. I told him to let me enjoy my final year before I'm half a century old. I actually didn't want a birthday party, it just seemed like too much time and stress. My hope was that he'd let it go. But over the past six months, I've realized that he would not let this go and although Corrinne was conspiring with him, he still needed my help to make this happen. It finally became apparent to me that I needed to be ok with this, because it was important to him and frankly it came out of love. 

So, I'm helping with my 50th birthday party, although I can't take too much credit. A group of friends and family helped to secure a location, find a DJ, cater, create invitations, RSVP web pages and the list goes on. I have to thank my Old Goat friends, Corrinne, Pat & Dave and my favorite sister, Denise in helping Patrick to make things happen. However, reluctant I was to do this, I am incredibly touched by all the activities going on. With Timmons' motto, "anything worth doing, is worth overdoing," it will be a super fun Star Wars evening, with Ewoks, Stormtroopers, and Jedi...

At this point in Patrick's life, it's interesting to see what things he will extend his energy on. Patrick and I have been involved with our local ALS Association since the beginning, we attend support groups, he served on the board and we do various side projects as they arise. One issue that Patrick and I both noticed when attending support group meetings was that caregivers and patients who were referred to hospice had a wide range of experiences - some good and some not so good. We both agreed that hospice, when done well, was such a benefit to the ALS patient and their families. It was odd that experiences were so varied based on the agency or even specific representatives.

If you are not knowledgeable about hospice or palliative care. Hospice is provided to a patient that meets the criteria of being terminally ill and with less than six months to live. Hospice care is a team approach that provides the patient with professionals both medically, psychologically and spiritually to manage a patients end stage of life. 

Over a year ago Patrick began thinking about what could be done to bring a more consistent level of care to ALS patients in hospice. He starting doing research and discovered that the California Hospice and Palliative Care Association was working with the AIDS community to address end of life care for AIDS patients. Which led to his thinking, why couldn't there be a collaboration with the hospice association and our ALS association to address the needs of ALS patients. With this in mind he began corresponding with Nancy Wakefield, Director of Patient Services and members of the Care Services Committee to encourage a collaboration. This has been on his agenda for about two years and he is relentless in his efforts to make this happen. 

I'm thrilled to report that this collaboration is now a reality. A task force between ALS Association Greater Sacramento Chapter and the California Hospice and Palliative Care Association is now working on creating best practices for ALS patients in hospice care. The Hospice ALS Care Protocols Work Group is comprised of people who work directly with ALS patients as clinic doctors and nurses, social workers, hospice care specialists, association staff and caregivers. It is an impressive group of individuals in the ALS community. 

Patrick recommended me to fill a role on the committee and frankly I really didn't know what to expect. I found the first meeting to be very inspiring - the group is engaged, excited and positive about the potential outcomes. Apparently there are other state hospice groups and ALS chapters interested in the final report and recommendations. I couldn't be more proud to be part of this group and to know that it came about because Patrick Timmons wanted to make a difference in the lives of his fellow ALS patients and their families. As Margaret Mead once said, 

     “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

For all my fellow caregivers and patients, we are working on creating a survey to get your feedback on your experiences with hospice - likely it will be posted over the next month. Please complete the survey with your thoughts and feedback. It will be included in one of the upcoming association newsletters and if you send me your email I'll make sure you get an email directly.

I'm inspired by Patrick, his ability to see beyond himself and look to make a difference for all ALS patients. Someone wrote me a note a while back asking to be remembered to him because he was always a great guy to work with. My response... he's still a great guy and he's still making a difference even with limited time and energy. 

I'll keep you posted on the outcomes from the work group - I'm hopeful and empowered. 

All the best to you and yours!

Looking Ahead, Looking Behind...

I think we can all agree it's been a strange year. Between the horrible massacre in Florida, the untimely deaths of many entertainers, and the Presidential Election - it was not an ordinary year. Since ALS, I've often felt like a stranger to the outside world, like a child with their face and hands against a window looking in at a store window. In the past, the outside world seemed simpler, more romantic than my life, but not this year. The outside world looks as foreign as the strange inside world I live in. So, my scattered thoughts this year are probably a combination of both the inside the world of an ALS caregiver and an outside world that appears to be a bit chaotic. This blog recaps our past year, "the good, the bad and the ugly" and looks to 2017 for what it may bring.

The holidays are always a bit of a mixed bag for me, the monkeys I've spoken of in the past

On the Porch Bundled up with Jake

have returned with a vengeance. I've struggled with writing a blog over the past month, somewhat due to my own busyness with the holidays and somewhat because I find myself feeling a bit confused by my own thoughts. Writing this blog has always been a bit of therapy for me, it forces me to sort through my feelings and put what's going on, "on paper." Frankly, it calms the monkeys in my head.

I've never gotten into new year's resolutions but each year I've always taken time to reflect on the past year and consider all the possibilities for the next. I'm afraid it's now a huge mix of emotions and feelings, reminders of people I've lost, realistically considering what the next year will bring, and considering the past year with it's losses and changes. However, with all of this, there are always good things to consider - so it's a mix.

Reflecting on 2016 - A Year of Loss
I can't recap the past year without recognizing Patrick's continued ALS progression. So here is a list of changes over the past 2016 - in no particular order:

Feeding tube insertion and adaption
No longer standing and modifying routine and clothing to accommodate
Increased coughing and phlegm
Changing power chair controls from hand to head
Constipation and bathroom issues
Loss of Speech

Such a crappy list, but to really consider 2016 they can't be ignored. Another list is all the folks we lost in 2016, both personal friends and famous celebrities. The many talented entertainers that died this year including Muhammad Ali, Prince, Leonard Cohen, and Carrie Fisher, to name a few, their deaths impacted us all. For me these folks were part of different phases of my life from my childhood to present. Mixed in with these famous deaths are the death of friends over the course of the year. There is no way to consider the past year without recognizing the people we lost. 

Reflecting on 2016 - A Year of Joy
But frankly, there were some really wonderful moments in 2016. Here is a quick list of only a few of the things that brought us joy in 2016:

Christmas Lights

Fantasy Football Guys and Gal!

Family Dinners
Birthday and Holiday Celebrations
Team Timmons and the Walk to Defeat ALS
New Family
Family Visits
Grandkids
Fantasy Football - Patrick WON after 25 years!! (kind of like the Cubs)
Goats
Days on the Porch

Weather Station

We've continued our genealogy journey into our family histories and connected with distant cousins. These connections have enriched our lives with new friendships, family stories, and histories that will live on through our documentation. Patrick became an official member of the Mayflower Society having descended from Constance Hopkins a passenger that traveled over with her father Stephen Hopkins. 

For Patrick's birthday in September, we got him a weather camera, called the Bloomsky. It captures real time photos of the weather at our house and does 24 hour timelaspe of the changing sky. Justin built a wonderful stand and Caitlin and Patrick work to keep the software going. It's been a bit of a work in progress, but seems to be working nicely these days. Check it out... Weather Camera at the Timmons' House

We've been so blessed to get to know and spend time with members of my mom's biological family. It is interesting how comfortable we all already are after only getting to know each other this year. My mother said to me on the phone the other day, how thankful she was that I found them. It reaffirms my belief that we are all connected to each other.

Family

Anticipating 2017
Patrick and I have had some difficult conversations over the past few months centered around things to come. When you're given an ALS diagnosis, with it comes an estimation of time - the average life span is 3-5 years for an ALS patient. This past Dec 21st marked the 4 year anniversary of Patrick's diagnosis - not much of a date for celebration, but a date we remember nonetheless. Although Patrick has had a slower progression than many of the patient's we've known, he still progresses and when these discussions occur, it's with a recognition that time is limited. So, anticipating 2017 is difficult, we can assume that his progression will continue with a reduction in what's left of his mobility, elimination of his ability to eat orally and speak only through the computer - that is pretty much assured. His respiratory will likely decline to what extent is unknown. So, I start this section with a difficult, but honest note - 2017 is going to be hard. 

But with all things there is hope, love and beauty in this world. Due to this, I'm sure the upcoming year will hold some amazing moments, time with cherished friends and family, and people/events unknown that I will be grateful for... in all things there is grace. So here is my final list... a list of things to look forward to in 2017...

Caitlin heading to a 4-year college (mixed feelings)
My 50th Birthday Party
My Mom's 80th Birthday
Grand kids
Holiday and Birthday Celebrations
Beautiful Sunrises
Time on the Porch

So, I welcome 2017 and say goodbye to 2016 with a bit of mixed emotions (kind of like the Rolling Stones song, "you're not the only one with mixed emotions, you're not the only ship a drift on the ocean." In the New Year, I wish you all good moments and more importantly the ability to recognize them.

Here are some photos from 2016... 

National Chocolate Cake Day!!

Sofia...

Mom's Visit in May

Anthony's Basketball Game with his fans!

Me and my Sis!!

Farrell's - Oh, how sad they closed...

Vineet, Johannes and Patrick

Patrick and Sean

Comic Con

Christian, Our Little Actor and Grandpa

Bob and Patrick

Debbie, Denise and Me

Patrick and Corrinne

Brotherly Love...

Grand Kids!

Jake

Tribute to Cousin Eddie - "Christmas Vacation"

Winter Wonderland Lights

Elizabeth!!

Happy National Caregiver's Month: How Did I Get Here?

I've discovered quite a bit about myself on this journey. If ALS does anything, it certainly pushes us to our limits. November is National Caregiver Month, I don't know why it's important to me, but it is. I guess it reminds me that I'm not alone and somebody had the good sense to recognize and celebrate "us caregivers" for a whole month. I should point out that for me, a caregiver is a family member or friend that cares for someone they love. I know there are wonderful people out there that do care giving for a living, but their experiences are a bit different. I dedicate this blog to all my fellow family/friend caregivers.

How did we get here?
How did we get here? This is a question I've muttered and thought so many times over the past four years - 5 simple words. Often I include an expletive in that sentence, but I'll refrain from that in this blog. Truly there is no answer for this question, except perhaps a line from the John Lennon song, Beautiful Boy, "life is what happens while you're busy making other plans." My dear friend, Therese (an ALS caregiver), mentioned this phrase to me on the phone the other day - seems that it's not mine exclusively. Frankly, it's been a trying month for us, so this has been an ongoing thought for me.

Before ALS, I never really understood the challenges that having a disability can bring. Simple things like, going the bathroom, voting, getting out of bed or taking a trip to the grocery store and the list goes on, have become major events. I considered doing a "day in the life" segment for National Caregiver's month, but instead I think I'll just highlight a few activities that previously I never gave a thought about and show you how we manage them with ALS in the picture.

Surgery: Pre-Planning & Managing a Timeline
I try very hard to schedule Patrick's appointments in the afternoon. He goes to bed late and sleeps in. In the morning while he's sleeping, I take a walk. For Patrick he needs his beauty sleep and for me I need my walk. The morning time allows me to rejuvenate and face whatever comes in the day. But with all things sometimes a morning activity or appointment can't be avoided, so it takes a bit of discussion and pre-planning. 

The second feeding tube surgery that we had this week was scheduled for 11:30am at Sutter General Hospital in downtown Sacramento. They needed us at the hospital at 9:30am for registration and pre-op. To get there on time we work backwards from the 9:30am arrival time. To some degree we all do this, but with ALS in the picture you have to budget quite a bit more time for regular activities and potential surprises. It's important to note that you really can't speed the process up... so if we're running late, frankly we're just going to be late.

Here is our schedule for getting to Sutter Hospital based on a 11:30am surgery... (working backwards)

11:30 Surgery
9:30 Arrival
8:30 Depart House
8:15-8:30 Get Patrick in Van and stuff (out the front, up the ramp, clamp down all buckles belts and seat belt, adjust his seat for comfort, sunglasses for each of us) Load SGD (Speech generating device and related items), paperwork and identification for surgery and Cheryl stuff (book, purse, phone)
6:45-8:15 Get Patrick up (hoyer lift, bathroom, shave)
6:00-6:45 Cheryl (shower, tea, dress)

No breakfast was scheduled because Patrick couldn't have any food for 12 hours prior to surgery. Breakfast would have greatly increased the time in the morning. 

This doesn't show all the little things that have to happen but this is what we look at when making an appointment. Additionally, our night activities have to be adjusted because Patrick hits the hay about midnight and me about 1am. So, we make every attempt to get to bed earlier.

I try to anticipate all potential "bumps in the road" so things go smoothly, but it is difficult. When we were at Sutter Hospital an orderly came to the pre-op room to take Patrick's power chair and personal items to the recovery room. My first thought was no I'll take care of it, but I didn't want to leave Patrick so I let the orderly take the items. Unfortunately, when we got home I realized that the chair head array had been moved and the controller was stuck in place. So, we'll be headed to see the medical equipment company to have them repaired. Moving a power chair is not as easy as it seems.

While in pre-op, the general anesthesiologist spent time with us going over the various options and risks affiliated with the surgery. These days I spend quite a bit of time as a translator, I understand his speech better than most. As the doctor was leaving he came over to me and said "you know there is a special place in heaven for you," I think I must of looked a bit surprised because he then said, "truly, there is." After a difficult month, it was such a kind comment. 

Voting

WE VOTED!!

This year we really earned our "I voted" stickers. It's been a busy month, so when I got our voter registration materials I really didn't give them a second glance. I thought I had put Patrick on permanent mail in ballot so I believed us to be all set. When I finally looked at his sample ballot I realized he was still slated to vote at our local polling place: the middle school a couple blocks away. I called the election's office to have a mail in ballot sent, but you can't speak for someone else and they couldn't understand his request on the phone. After speaking with 5 different staff members, his options were to go to the election's office and pick one up, vote at his local polling place or send in a request for a mail in ballot. I took the last option and mailed a request for a mail in ballot. Unfortunately, although we made the request before the date on the form, they called and said it was too late and he needed to go to the polling place. Determined to do our civic duty we figured we'd work with the poll workers and make this happen. 

Every election we spend a few hours going over the propositions, debating and filling out our sample ballots. Frankly, we should have done it earlier, but we wound up spending election day afternoon going over each item and it took the usual few hours. Unfortunately, I really didn't think this through because by the time we were done it was 5pm and starting to get dark. That really wouldn't matter except that our van was in the shop so the plan was for us to walk over to the polling place, which is a few blocks down on the bike trail next to our house. Anyway, with darkness settling in I realized there is no lighting on the bike trail, I searched the house for flash lights and finally gave up and went to the store to buy a couple of new ones. This was one of those, "how did I get here?" moments. 

Just an aside, we use a lot of pleasantries in every day life. Phrases like, "how are you," "what are you doing today,"  etc. etc. I know that the answer folks are looking for is fine or good or nothing really. But sometimes when I'm asked these questions, I have a stress moment and answer the question honestly and with way too much information (TMI). When the Raley's clerk (who looked to be about 25) asked "what are you doing with the flashlights." I responded something like this: "Well, I'm trying to vote, my van is in the shop and I couldn't get my disabled husband a vote by mail ballot, it's getting dark and the polling place is down the bike trail which is not lit and I'm a bit concerned about him using his head array in the dark, even with the flashlights, once we get to the polling place I'm hoping it won't be a hassle because my husband has limited speech and can't use his hands." At this point, I realized I was rambling and the clerk looked a bit shell shocked. Oops, I thought, I said all of that out loud, I chuckled and told her "no worries, it's all good - life is just an adventure sometimes." She laughed, but I think I traumatized her a bit. As I left the store she yelled after me "I hope it all works out and you get to the polling place, it's important to vote." 

When I got home, we took the flashlights, the dog and the ballots and headed down the bike trail. Other than my own personal nerves the walk was pretty uneventful. The polling staff was quite nice and eager to help so that went smoothly. Last election, the polling place was on the stage in the school cafeteria. The staff didn't know how to use the disability lift so it was a bit of a challenge. This time it was in the gym so there were no stairs or lifts to navigate. Anyway, we made it with an hour to spare. Yes, we truly earned our stickers this year!


Going to Bed
One of the things I miss is simply falling into bed, especially after a stressful day. The process of going to bed takes me about two hours from start to finish. I usually begin around 10:30pm in an attempt to get to bed about 12:30pm. I start with getting Patrick's bedtime medications, pulling them out and cutting a couple of them. With his bulbar changes, we moved from using water/juice to swallow pills to applesauce and soon we'll move to the feeding tube. Either way, a few of the pills are just too difficult to take whole. He takes his pills and uses the cough assist machine. This machine pushes air into his lungs and then sucks it back out - like a cough, hence "cough assist." It helps bring up the phlegm and mucus that accumulates.

He heads upstairs on the lift, we brush his teeth, go to the bathroom, undress and transfer to bed. These activities all are dependent on me, he isn't capable of doing them himself. It takes about an hour or more depending on activities.  When I get him into bed, I set up his respiratory equipment, this usually goes smoothly, but sometimes it can be tricky getting it just right.

Then I start my chores, taking the dog out to go to the bathroom, putting the garbage cans (on Friday) out, plugging everything in, general tiding up and ultimately get myself ready for bed. It's my evening activities and few things get done without my involvement.

This is the life of a caregiver, it's not glamorous and jeans and a t-shirt have become my staple. I wouldn't have chosen this career, I do it out of love not for pay. I say this to my fellow caregivers, of which there are many in this country, you are not alone. When you have those moments where you are think "how did I get here?" Remember, what you do is important and that there is a special place in heaven for you, truly there is.

Happy National Caregiver's Month!

Feeding Tube Update

Just a quick follow-up on Patrick's surgery. We spent the day yesterday at Sutter General Hospital in Sacramento for a second attempt at inserting a feeding tube. I'm pleased to report the surgery was a success. Dr. Zipser, the radiologist, had some difficulty with the location of Patrick's stomach, but after collaborating with another doctor, he was able to get it placed.

Selfie at Sutter General

Gail, a nurse practitioner from Dr. Zipser's office, taught us how to use with the feeding tube and we've used it a few times already. As for his recovery, Patrick is sore, but no problems from the surgery. With all things we are adjusting to the change; making sure not to tug on the tube, figuring out how to accommodate Patrick's best buddy, Jake, on his lap and heading over to the pharmacy to see about changing medications into liquid format.

The Sutter staff were wonderful throughout the day, a huge shout out to them! I got lost in the hospital a number of times (Sutter is not an easy hospital to find your way around in) but staff seem to recognize lost individuals and took a bit of pity on me.

Thank you for all your prayers and warm thoughts.

How is Patrick Doing, #9 - Part II: Bulbar Challenges - The Feeding Tube

In addition to Patrick's speech issues, he is now challenged with other problems from the impact of his declining mouth, tongue and throat muscles. This is commonly referred to as the bulbar region in ALS, which references the head and torso. When ALS affects the bulbar region it impacts the speech, respiratory, digestive functions and core muscles. We are facing a variety of these issues and the most troublesome is Patrick's ability chew and digest food and drink. This has forced the decision to have a feeding tube surgically inserted.

Bulbar Changes: Eating and Drinking
The muscles in his mouth, lips and tongue are becoming quite weak which makes it difficult to move food around, suck from a straw and ultimately creates choking problems. We started with eliminating some foods from his diet simply because they were too difficult. These included candy (specifically sticky candies) and cold vegetables these are just too difficult to chew up. Most foods must be cut or minced into small pieces so chewing is minimal. We've had some scary choking moments where it was necessary to use the Heimlich Maneuver, so we work to eliminate any potential hazard. However, as time progresses this gets to be more and more difficult.

In addition to foods, he is also starting to be challenged by fluids. It surprised me, but one of the most choked on liquids is water. Soda, juices or thicker beverages (smoothies or shakes) are easier to digest and reduce choking. The struggle with this is that because his mouth muscles are impacted he is starting to lose his ability to suck from a straw. This makes thicker liquids better for reducing choking but more problematic for sucking through a straw. You never "win" with this disease.

The time to chew and swallow a bite of food probably takes three times longer than it use to. Aside from the bummer that your food goes cold, you also just don't always get enough digested. There are other risks due to bulbar decline including dysphagia, dehydration and aspiration pneumonia. 

Sadly, overtime Patrick will lose his ability to eat and drink orally and these functions will need to take place through a feeding tube. As with all ALS problems, it is critical to make decisions and be proactive before they become unmanageable.

Feeding Tube: Decision and Process
Let me point out that not all ALS patients get a feeding tube, either because it doesn't become necessary or they decline to have one. Often the decision has quite a bit to do with the way the disease progresses. A feeding tube will prolong your life so it is an individual decision as to whether or not to have it inserted. In Patrick's case his respiratory decline is not significant yet so if he decided to decline a feeding tube he would likely die due to dehydration or starvation.

The other issue with a feeding tube is the question of timing, when do you have the surgery completed. Insertion of a feeding tube is not major surgery, but with respiratory decline there can be issues with the use of general anesthesia. Often doctors will encourage patients to get the feeding tube put in before the respiratory decline becomes too significant. This reduces the risks of respiratory problems during surgery.

The feeding tube has been one of the most difficult decisions for Patrick. In July, we were told at clinic to get the process moving, now. We've learned that you don't want to let things go until you need them, because if you need it NOW then you've waited too long. Things like ordering medical equipment, having surgeries and making home modifications require time, planning and preparation. So, delaying the surgery was not a good option. This is the first time I've really seen Patrick drag his feet during this journey, he says he's not excited about "a hole and tube in my stomach."  Frankly, this is a significant milestone in the ALS journey, the primary causes of death are with challenges to the bulbar region, so it's a reminder of how far he's progressed.

I should point out here that getting a feeding tube does not negate the ability to eat food by mouth. It simply provides another means of getting fluids, food and medications into the body. Over time he will completely lose the ability to orally digest but that isn't the case yet. 

Medical Directives
The surgery brought up the discussion of medical directives. In the event of a problem during surgery what did Patrick want to have happen. In addition to advanced medical directives we completed a POLST (Physician Orders for Life-Sustaining Treatment) for the hospital so it was clear what decisions were to be made or not made. 

I believe in direct communication although its not fun or comfortable. I want to be sure that I'm doing what Patrick wants and decisions are not made at stressful moments. My recommendation, tell your family what you want, what you don't want and do the appropriate paperwork - it makes life easier for your loved ones and you won't find yourself on the receiving end of decisions you did not approve.

Surgery
The ALS Clinic referred us to Dr. Feinstat here in Roseville and if you're looking for a gastroenterologist I would highly recommend him. We met with him and went over the procedure and the various considerations. There were two different procedures available to Patrick for feeding tube insertion: "the radiologically inserted gastrostomy (RIG), and the percutaneous endoscopic gastrostomy (PEG). Both RIG and PEG tubes are inserted directly into the stomach through the abdomen and held in place internally, however, the procedure for inserting them is different." (Massachusetts General Hospital, Neurology) 

We decided to go the PEG route to have the feeding tube inserted and we scheduled surgery for this past week at Sutter Roseville Hospital. 

We got to the hospital two hours prior to the scheduled surgery, filled out paperwork and got prepped by the nurses. With Patrick's limited mobility and a hoyer lift being required to move him to the gurney his prep time is a bit more involved. I was impressed with the nursing staff at Sutter Roseville Hospital, while they were transferring Patrick in the hoyer they asked me for the best methods of transferring and were not defensive when I changed the way they were using the hoyer. At one point one of the nurses said its always important to ask family members advice, after all they work with the patient every day. Which I thought was a nice acknowledgment of a caregiver's knowledge and experience.

After his prep time I headed out to the waiting room. Sutter Roseville Hospital is a new facility and its quite open and friendly. While we were waiting, Marley, a hospital service dog, even stopped by for a visit. Now you know Patrick and I love the dogs. So, I settled in while Patrick had his surgery. It's kind of weird sitting in the waiting room with an empty power wheelchair, but that's what I did. It didn't take long before Dr. Feinstat appeared and told me Patrick was fine, but that there was a problem in finding Patrick's stomach and he was unable to insert the feeding tube. With all the concerns we had about the surgery, this was not even on my radar screen. Dr. Feinstat said its not very common and certainly not something he thought was going to be a problem. 

So, it's on to plan B, which is having the surgery done through radiology (the other method for inserting a feeding tube). The surgery is scheduled for next week at Sutter General Hospital in Sacramento. Send your prayers and good wishes on Thursday!

On a Fun Note...

Moon Tree - Sacramento Capital Building
Taken By Uncle Burton

During the ALS Walk weekend in October some of my mother's family came out from Arizona and they all went sight seeing. Patrick and I have always been fascinated by the "moon trees" that traveled on Apollo 14 as seeds and are planted around the world. During their sight seeing, Patrick asked them to find the moon tree at our California State Capital Building. They found it and took some wonderful photos. They are now seeking them out and taking photos of the ones they find. Here is a link to the video where we first learned about the moon trees, Huell Howser's California's Gold

So, while we were waiting at the hospital we were gifted by photos of the moon tree in Fort Smith, Arkansas taken by Aunt Sherrie while she was on vacation! I'll leave you with some moon tree pictures...

We would love to have you join us in finding the moon trees! Here is a link to where they are located, they are all over the United States and abroad!

Moon Tree Locations: http://nssdc.gsfc.nasa.gov/planetary/lunar/moon_tree.html

Take pictures and post them to our Walk to Defeat ALS -Team Timmons Facebook page https://www.facebook.com/teamtimmons1/, our individual Facebook pages or email them to Patrick at pjtimmons@hotmail.com! 

Sebastian County Courthouse in Fort Smith, AR
Taken by Aunt Sherrie

Moon Tree Plaque at Fort Smith, AR

Happy Halloween!!