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!