My mom passed on Nov 26 2020, having taken EOL medication after been given a prognosis of less than 6 months to live in early July. She just turned 62. She was diagnosed with bulbar-onset ALS on March 6 2020. The typical form of ALS takes hold in the extremities and moves inwards towards the core. Bulbar-onset is rarer and more aggressive, and begins in the throat/ mouth and moves outwards. We were originally given a timeline of 3-5 years, which shrunk rapidly to a matter of months.

My brothers and I put our lives on hold the last 9 months to take care of her and help her with her diagnosis, the escalation of symptoms, and to help support her through her passing. She did not want to be given artificial means of prolonging her life, like a respirator or feeding tube, and wished to die at home. She did. I am so proud of my mom for fighting as long as she could and for everything she has done for us.

I just wanted to give some advice to anyone with a family member who has bulbar-onset, or who has been diagnosed with it themselves. Some of this advice is from my mom directly and some is from me as her full-time caregiver, and her daughter who held her hand as she left this world.

BTW, this is all anecdotal and shouldn't be used as strict medical advice, as you know. But I wouldn't want this info to be unavailable for anyone who needed to read it.

For folks with bulbar

• Eat and enjoy as much food as you can, while you can. My mom's ability to eat food diminished swiftly over 9 months. She went from being able to eat solids to being able to only eat solids in a processed form, to being only able to eat a certain texture. What we didn't understand was that as the nerves in her mouth began to fail, she also became unable to taste certain flavors. Her ability to taste salt went first, then sugar. Near the end she was eating extremely salty foods to enjoy anything, and for the most part could only taste the acidic and bitter components of food no matter how sweet they seemed to us. It is beyond cruel. She said many times she wished she could have eaten and enjoyed more foods while she was able to.
• Find foods that work for you and try to add onto them. My mom is Asian and cannot eat a lot of the foods that are normally suggested to western palates (milk-based foods for example). We found a lot of foods that worked for her and stuck to them, added to them, or modified them to work. Just a list for other Asians who might come across this and who would like some suggestions: mashed yams, oatmeal (our daily staple), pureed mango, oamisua (thick oyster soup with a gelatinous consistency), glutinous rice, steamed eggs/ chawanmushi, modified chowders (using cornstarch as a thickener), etc. Not great for the body, but for enjoyment: salt egg and preserved black egg in rice porridge. Good protein options were silken tofu, tofu pudding, stewed chicken in broth chopped up small, and chicken livers cooked gently (has a very light texture that requires little chewing). Good fiber options are pureed fruits and roasted/ strained veg (to cut down on aspirating fibers or particles). A helpful hint: starch is dissolved by amylase, the protein found in saliva. A more liquid meal that is thickened with starch will become watery if saliva hits it, negating its texture. With bulbar, my mom was unable to form a perfect seal with her lips very early on, and found the constant stream of saliva an endless fight to stave off. She used a small plastic cup with a handle to catch her saliva before it got to her food to avoid destroying the texture that made it possible for her to eat it successfully. It helps to use lighter plastic utensils and tools especially as strength begins to wane.
• Focus on drinking water/ intaking liquids as much as you can. My mom tried to force herself to drink as much as she could even when she wasn't able to. The forms this took varied over time... we started with water and a straw, then her ability to use a straw disappeared. Then she tried to sip from a cup with a thin edge, but would choke heavily on the liquid itself. We switch to ice chips, which slowed the rate at which the water went down her throat, but some chips were aspirated and caused a lot of trouble. Then we switched to shaved ice, which worked for a while, until my mom lost enough muscle reaction in the back of her throat that she was able to take in liquids again without the sensation of drowning. Near the end, we used a spoon to pour water down her throat, as she was unable to move liquid to the back of her throat at all under her own power. But staying hydrated is so important. Do what you can to find a way to make hydration possible for you, both to cleanse your system via urine and to relieve dehydration headaches as much as possible. My mom got a kidney stone early on due to dehydration and was terrified to get another.
• Do what makes you happy. We made as much space as we possibly could for our mom to enjoy her final days. It was so difficult for her to enjoy anything at times. But please try. You deserve to be happy as much as possible.

For caregivers

• Most pain medications will cause depressed breathing. You'll probably experience this. We saw it with Morphine, Vicodin, Fentanyl patches, and Haldol. Honestly, also with Lorezapam and Phenobarbitol and other anxiety relievers. Sometimes you just have to let it happen, as the pain is overwhelming and the relief is worth more than the cost.
• Try to get medications that are administered by patch or via suppository. I wish we knew about the suppository option sooner... sometimes pill-form medications are actually also able to be given rectally, by pushing them in and against the side of the rectum (the phenobarbitol was one example). Doesn't hurt to ask if a pill can be taken this way, since sometimes they don't tell you off the bat. Taking pills orally became a huge ordeal near the end. We made yams for months for the sole reason of providing a vehicle to carry the pill down her throat, while also masking the extremely bitter tastes of some of the pills. My mom doesn't like the way bananas brown so quickly, and because pills take a long time to swallow (or need to be taken in intervals) we didn't use bananas, but maybe your loved one might. If you put some acid like lemon juice on them it will slow down browning/ oxidation (but if they are sensitive to acidic tastes, this might not be ideal).
• Eating becomes difficult for many reasons. First, the tongue and mouth cease to work properly. Chewing fails. The lips no longer seal and cannot suck via a straw or even hold food in. My mom struggled a lot with her own saliva washing the food she was eating right out of her mouth. At times the only way to push it to the back of her mouth was to tilt her head back, which she stopped being able to do near the end. At that point she pushed it to the back of her throat manually, with a spoon. To combat the saliva, you can use Scopalamine patches or Atropine drops, and wipe with a towel, but eventually she just used plastic containers or cups to manually catch the saliva or food that fell out.
• Buy one of those 30 packs of white hand towels from Costco, we used ours constantly, went through 4-6 a day and had a constant rotation in and out of the laundry.
• Most food/ liquid thickeners like Thick-It are corn starch based. If you're cooking with thickeners, try a finer starch like potato starch, tapioca starch, or rice flour if gluten isn't an issue. We found the final texture was a lot better and smoother that way than with corn starch.
• ALS burns calories. When my mom didn't have the stomach to eat much (she suffers from anxiety-induced vomiting), she lost weight EXTREMELY rapidly. This is one more terrible feature of ALS, it will burn more of your calories than you would normally burn without ALS. She dropped 5 lbs in one week even though she was only in the upper 90 lb range. Another reason why it is so important for your loved one to eat as much as possible when it is possible.
• Try to understand your loved ones speech as long as possible. We noticed in August that when my mom didn't talk for a few days, her ability to speak would begin to fade. So we all made an effort to keep talking and listening and communicating. Until the last 2 weeks, we were still (with extreme effort) able to understand her own voice. In the last 2 weeks we could understand a certain percentage but required an iPad or other device to fill in gaps. But we all adapted our ears to understand her and that made her feel loved and supported. It was VERY difficult. But at least in our case, we found it somewhat possible to keep her voice in play even when it was compromised terribly.
• Don't guess at words. Keep in mind that bulbar works "backwards" and your loved one will often still be able to walk or perform certain tasks. My mom could type on an iPhone at times but even this ability began to decrease at the end. Both via typing and speaking, there was an urge by me and my siblings to "fill in the blanks" with a guess at what the word was. In the beginning she used to be very angry and near the end she became quietly disappointed with her inability to scold us. It must be terribly frustrating to have your words guessed incorrectly, or to be treated like you are slow, simply because your body can't react fast enough. Please don't guess, and let your loved one talk at their own pace.
• Skew tools towards holdability. Heavy items are a no. Thick bowls and utensils are a no. Very hot or cold items are dangerous, as they can't be held or reacted to swiftly and could be dropped/ cause burns and such. We almost exclusively used light plastic bowls, light plastic cups with handles, and small, light spoons. Lightness is key here, as well as something to leverage a grip to when finger strength fails.
• Showers are dangerous. The mist from a hot shower made my mom choke and cough. Eventually she began to wash her hair over the sink and did a quick rinse in the shower. She did this up until the day she died. We unscrewed the lids from the shampoo and other bottles to make it easier for her since she insisted on doing it by herself.
• The progress is so fast. Being her only caretakers, and due to Corona (and my mom's wishes) mostly without support from hospice, we had to figure out a lot of things ourselves. We went from trying to understand her slurring speech to having to help her lift objects, to cutting her nails and doing her hair for her, to finally needing to help her walk without stumbling and even lifting her legs into bed. Near the end my mom wasn't able to even roll to the side, or keep her head up with her own neck muscles, which we needed to aid with when lifting her in and out of certain positions. It was incredibly difficult to keep up with the moving goalposts and coping with the constant loss and pain while also providing comfort. Just be aware that something that works today might not work tomorrow.
• Understand that you can't understand. I know I'll never know what my mom experienced. The constant headaches from oxygen deprivation, anxiety, and stress. The depression. The pain of tightening tendons in unused limbs. The frustration of being unable to talk after a lifetime of chatting and sharing. The endless stream of losses of things so mundane that most of us don't even notice that we have them. Sometimes I would just hold her and cry with her. In her worst moods she said that she was dying alone, that nobody could understand the bitter solitude caused by a disease this rare and isolating. I know she was correct. I feel a lot of pain for her isolation. But I tried to respect that although I can't share her pain, I can do my best to lessen it. It's not fair for an able-bodied person like me assume or impose or even try to imagine something this unimaginable, my support and love for the person with ALS is more important to focus on.
• Try not to take things personally. Near the end my mom wasn't really herself. She was so stressed and terrified and yearning for an end. Since her kids were the only ones around, she took a lot of her pain out on us in the last 4 months, some of it felt unbearable... even though we are adults, I constantly felt like a horrible, unloving child. I know that was not how she would have behaved if she had not had ALS. There's no way you will feel good during these times but try to remember that your loved one is going through incomprehensible changes and loss. My perspective, now that it is over, is that I would experience it all over again. And I wish I had been more patient with her and put my feelings aside more, even though it felt like it was not possible to do in the moment.
• Do your best. There is no winning this fight. I can sleep now, finally, after many months of heartache. The reason is not because I'm not grieving (because I am), and it's not because I don't care. It's because I know I did everything I possibly could. Some of you will have the option of in-home care, or helpers, or advice, or another adult. We didn't have those things for a variety of reasons ranging from pandemic fears to having a shitty dad to my mom's own wishes. I didn't do a perfect job. But I know my mom died knowing that we loved her more than anything.

Anyways, I'm still coming out of the immediate shock. I hate ALS so much and what it took from a creative, funny, and constantly growing person. She had so much life to give and ALS took it from her. ALS plus Covid took away most of her ability to travel safely and experience certain things from the last time. But she never stopped doing her best with the limited options she was given, and she never let ALS take away her dignity and ability to make choices for herself, and I will always love her for that.

Much love to all of you who are caring for your own loved ones, and to you fighting the impossible fight.