Ten ^ Eleven Things ALS Has Taken From My Mom

**Note from 2023–I wrote this 8 years ago before my first Walk to Defeat ALS. I just reread it for the first time since last year and it brought back so many memories of the most challenging time in my family's lives. Please take a few minutes to read (or reread) what it is like for a person living with ALS. And then sign up to walk with us or donate! Thank you!

Ten--change that--Eleven Things ALS Took From My Mom

1.) Her ability to drive.

Months before anything else, my mom felt very unstable. This made her very hesitant and uncomfortable behind the wheel. I am grateful that she decided herself that she did not want to be driving anymore. In many families, this is a point of contention.

2.) Her ability to speak.

At first it was just difficult for her to talk. It took a lot more effort, kind of like when you are running or getting over a bad chest cold or bronchitis. The sound of her voice changed. It became hoarse, slurred, gravelly, and weak.

Once my mom had her trach placed, however, her ability to speak was lost completely. For a while she could use a speaking valve, but even that began to require more strength than she had. It became very frustrating to her (and us) when we couldn't figure out what she needed or wanted.

3.) Her ability to cough a strong cough.

At the beginning, it was more that she couldn't really clear her throat completely. It seemed like she was hoarse and just couldn't get enough power behind a throat clearing to do anything about it. Then when she coughed, it just seemed so weak, like she was trying to be careful not to crack a rib or something. But she wasn't trying to be careful; her diaphragm was just too weak to push the air out of her lungs forcefully.

Once she had the trach placed, she didn't make any sound when she coughed. Or sneezed. Or laughed. It was very odd and took some getting used to. She could not cough strongly enough to cough up mucus from her lungs on her own, so we used a machine to help with that. It involved inserting sterile tubing through her trach and into her trachea to suction out her secretions from her lungs every few hours. It made her cough and she didn't like it much, but it was better than getting pneumonia.

4.) Her ability to swallow.

I was speaking with another woman whose mother also had ALS. She tearfully asked, "Why do they make the pills [to help improve swallowing] SO HUGE?" I completely understand her frustration! When my mom started having difficulty swallowing, you know what was the most difficult? Water. Because it is a thin liquid, it would make her choke. This was especially bad since her cough was already so weak. I went with her to have a Swallow Test done at the hospital. The test itself was somewhat fascinating. They gave her substances of different thicknesses (one at a time) and had what I think of as a Video X-ray on either side of her head/neck. Without realizing it, over the previous several months, I had memorized my mother's swallowing patterns. How she'd take in a deep breath, give one big swallow, pause, then a second. Sometimes third. As I watched the x-ray while she swallowed these items, I was blown away. I could see that the first big swallow moved the food about half way down her throat. It paused and fell onto her epiglottis. It rested there until she gave a second big swallow. Then most of it went down, but not all. The third swallow pushed a bit more down, but there was always some residual sitting there on top of her windpipe, especially with thin liquids, like water. The concern, of course, being that anything that hangs out there could very easily be aspirated and end up in her lungs. That would bring on aspiration pneumonia. Definitely something we were trying to avoid.

5.) Her ability to pick up her little grandson.

My mom actually had more use of her arms and legs than most people who have been living with ALS for as long as she did. Her presentation was bulbar, meaning the disease strikes her swallowing, talking, breathing, etc. first and limb weakness comes later. Only about 25% of people with ALS present this way. But even though the weakest areas of her body were her throat and diaphragm, her arms and legs were still weaker than normal. This limits many things for her, but one of the first (and most upsetting to her) was that she was not able to pick up her little grandson anymore as the disease started progressing. She made due; we would have her sit on the couch and put him right next to her, but it is not what she wanted.

6.) Her ability to eat.

Another very tough loss. As I said the other day, swallowing had been becoming increasingly difficult for my mom for a few months. Thin liquids and pills were becoming challenging. If a food was chewy, her muscles were starting to get kind of tired and she would be "done" simply because it was too much work to eat. But somewhere between June 24, 2014 and July 17, 2014 my mom went from being able to eat a steak (slowly, but surely) to being able to eat nothing besides soft boiled eggs. I made so many soft boiled eggs in those 3 weeks, I should have bought a chicken! I would ask her what she wanted to eat, what she felt like she COULD eat. She would come up with something that sounded good to her and I would make it. She would take 1 bite and not even be able to swallow it saying, "I'm sorry...it's too chewy." It was a couple weeks of soft boiled eggs, cottage cheese, canned peach slices, and pear juice. I would try to bargain with her, saying things like, "Please just take 3 more bites, Mom...three more bites." We could tell she was losing weight. I have a distinct memory of thinking that whatever was happening was making quicker progress all of a sudden. I remember thinking that if this decline didn't slow, she would end up on a feeding tube by the end of the summer. I guess I was right.

My mom had had a feeding tube for about 15 months. She could take nothing by mouth. No food, no drink. Nothing. For a while, she worked with a speech therapist who practiced swallowing with her and even used some electric shock on her throat muscles to help strengthen them. She was able to swallow the tiniest piece of a communion wafer for a while. Then we switched to the tiniest drop of wine. She was able to handle that until the end of her life and she was so grateful.

 

7.) Her ability to breathe.

My mom was slowing down. She wasn't moving as quickly and wasn't able to move very far. Along with not being able to cough, she also couldn't seem to get a full breath. It was hard to tell which was the cause and which was the effect. Was she not moving as quickly because she couldn't get a deep breath? Or was she not able to take a deep breath because she wasn't very mobile? The pulmonologist had her using a sleep apnea machine at night that was hooked up to oxygen. She didn't like using it, but she did. She said it felt like it was suffocating her. The doc also suggested we get a supply of oxygen tanks for her to keep at home and use if she was ever feeling short of breath. We were told that her lungs were functional at about 70%. She never did use them, though.

June 26, 2014 my dad called 911 early in the morning because my mom wasn't responding to him and wasn't making sense. We got to the ER and her oxygen was low and her CO2 levels were high. I used to remember the numbers, but there have been too many numbers since then. We had "concluded" that she put her sleep apnea mask on, but never turned on the machine. A little bit of oxygen and an overnight stay and she was released. Even the one night stint weakened her, though.

About two weeks later came another 911 call. Similar complaint; she felt like she couldn't settle down, couldn't catch her breath, and was very anxious. I met my dad at the ER and we both thought this visit would end similarly. Boy, were we wrong. This trip to the ER didn't end until 5 months later.

They told us we were 10 minutes from being discharged. My mom was sleeping so peacefully. Just waiting on results from one more test. We were packing up, straightening up, getting ready get go home. All of a sudden we were being asked about intubation...about living wills...about life support. To this day, I still don't know how we went from packing up to dire straights in such a short period of time. I guess that is what happens with CO2 poisoning. You see, it wasn't so much that she wasn't able to take a deep breath. The real problem was that she wasn't able to exhale the breath she had taken in. This is what kills almost all people with ALS. (Although at this point she had not yet been diagnosed.) This deep sleep that my mom was in wasn't it a deep sleep at all. It was her body being poisoned because her muscles in her diaphragm were too weak.

So they intubated. And ventilated. And that machine breathed for her 24 hours a day for the rest of her life.

8.) Her ability to keep personal hygiene personal.

I know. Nobody really wants to read about bedpans and sponge baths. It seems far too personal to share, especially on Facebook. But for us, it just became a part of every day life. You almost get numb to it. You forget that other people's lives don't involve things like putting their mother on a bedpan or keeping their loved one clean. You forget that to most people, these things aren't even thought twice about. These things SHOULD stay personal; they SHOULD stay private. But this privilege was been taken from her.

9.) Her ability to walk.

This one sure snuck up on us. Before July of 2014, my mom had certainly slowed down in every way possible. But she could still walk. She had just started using a cane maybe a month prior, but she didn't really seem to NEED it. It just made her feel more stable. Every doctor that she went to (which was a lot!) asked her "Have you fallen?" The answer was always, "No," but every time someone asked her, it made her more cautious.

Ok, so maybe she DID need the cane. I had kind of a hard time accepting that for a while. It's kind of funny---when she was admitted to the hospital she had her cane with her and we lost it somewhere between the ER and the ICU. We spent so much time over the next week trying to locate that stupid HurryCane! We eventually had it returned, but it was never used again.

Over the course of the 10 days in the ICU, my mom's legs weakened enough that she would never be able to walk again. Over the next several months she had physical therapy every day of the week, but the muscles had already weakened too much. At first she could stand with full support, pivot, and sit in a chair. At one point she was even "walking" along parallel bars with the (significant) help of two physical therapists. But once the diagnosis of ALS came in, it became obvious that she would not be able to regain the strength that she had lost. Her strength would be better spent on breathing and keeping up the other tasks she could still do instead of walking. 

10.) Her ability think clearly.

Until somewhat recently, cognitive and behavioral impairment were considered a rarity with an ALS diagnosis. If it occurred, it was often considered two unrelated diagnoses. More recent studies, however, suggest that as many as 50% of people with ALS have mild to moderate cognitive or behavioral impairment.

Even before my mom was put on the ventilator she started having trouble spelling common words or doing somewhat simple math problems. Her reasoning was sort of off sometimes, too. She saw several specialists and was assessed over and over. I can still hear her telling the doctors, "That one doesn't count--I've never been good at math!" :)

Probably the hardest part of any of this is seeing my mom become frustrated. I remind myself--why wouldn't she be frustrated?? She can't talk, she can't eat, she can't walk, she can't even get up and go to the bathroom! Of course she is frustrated! I'd be down right pissed! But I think it is more than that. As I read more studies and information, I see that changes in a person's behavior often accompany these cognitive difficulties. People who suffer from this, like my mom, show signs of increased anxiety, difficulty with reasoning and judgement, and getting stuck on certain ideas or thoughts. All of these are things that my mom struggled with on a daily basis.

On top of her body not working like it was supposed to, she  also struggled with not being able to be herself. How incredibly frustrating! Not being able to spell even the simplest of words took away her ability to communicate at all.

This disease is horrific; this piece of it is by far the most difficult for me to watch.

Addendum added Nov. 5, 2015

11.) Her life.

We were not expecting this.  Not at all.  Upon reflection, this seems a bit silly.  I mean, my mother had ALS and was being kept alive by a ventilator and a feeding tube.  We had grown pretty comfortable in her stability, though.  However, the day after our first Walk to Defeat ALS, my mom spiked a fever.  Three days later, the pneumonia had taken over her lungs and we made the painful decision to turn off the ventilator.  It wasn't really a choice.  The antibiotics were not working and she was not going to get better.  I lost the most amazing woman I have ever known that day.  

I know many people who could tell you their own ALS story.  The sad thing is, every single one of them has ended or will end the exact same way.  ALS has no cure.  Please donate to help us change this.