A Day In The Life...
Someone asked me to write about my typical day, I thought about it and decided to do so with a little twist. I will detail a typical day, but include my thoughts and challenges I experience.
My day starts between 1am - 5pm when I wake up needing suction of mucus from my trach. I push my call alarm that shrieks, waking up Wyatt and my mom. This can occur 1-5 times during the night, which sucks for my mom. In the near future I will hire a night nurse so mom can sleep better. I then use an eye gaze computer in bed until I sleep. I usually doze in and out, I also have wild dreams during this period. Fun fact: in my dreams I always have ALS but I am walking and physically unaffected.
At 8am my morning caregiver arrives and we start with my morning meds and supplements. It all gets mixed together and given to me through my feeding tube. Next step is Wyatt's favorite, she takes him for a walk and he pees on every bush, literally. If he poops he gets a treat. When they come back, I will do range of motion exercises and stretching. I still can enjoy coffee by mouth, so half a cup goes in by mouth and then the other half goes in the g tube. We then wait for my stomach to say “ I’m ready to poop.” When this exciting time comes we use the hoyer lift to transfer me to commode. If I have a good poop I am happy for the day, small or no poop I am usually irritable for the day. When I’m done and cleaned I get transferred back to bed.
Once situated in bed I will need cough therapy and heavy suctioning to clear the mucus from the evening. I get my teeth brushed, face washed and my skin products applied. I normally let the caregivers choose my clothes and socks, it's fun because I never know what they will choose. Before I get dressed they will clean my g tube and tracheostomy sites, apply a skin barrier cream and put new gauze bandages. Then i get dressed, transferred to my powerchair, ears and nose cleaned and my hair combed. After all this activity i get my pc set up on my chair and I finally can relax. By the way it’s probably 11:30am.
At noon I take medicine for neuropathy and muscle spasms, and depending how I feel I may take anxiety meds. I eat lunch at 12:30, sometimes real foods by mouth or prepared formula food through my g tube. Always a crapshoot of how I’m feeling at this time, but typically I will go for a walk outside with wyatt and say hello to neighbors. I take Lexapro daily at 1pm and then my caregiver goes home right after 1pm.
From 1pm on I will listen to podcasts, audiobooks, read articles on the Internet, emails, texts etc. I try to get a nap in, and not bother mom too much. It’s basically free time to go or do whatever we need to do. At 6pm the night caregiver arrives. She will prepare my night meds and overnight feeding. I try to eat something by mouth between 6:30-7:00. Then I just hang around with my family, watch sports until after 8pm when I get tired. Then when I’m ready for bed, we start the night time routine.
Using the hoyer lift i get transferred to bed, will do cough therapy and heavy suctioning and try to get me comfortable in bed. I am weird, I feel all the wrinkles so my shirt, boxers and sheets have to be tight and perfect. My favorite time of day is next, foot and hand massage. We use a cbd cream for pain and relaxation. It really does help relax me, and reduce the pain in my extremities. I will receive night meds around 9pm, and watch movies until I fall asleep. Around 10pm I have skin products applied to my face, and get my cbd tincture with melatonin, and my Papa & Barkley cbd/thc tincture. I usually stay awake until at least 11pm so I don’t wake up too early.
So that’s the outline of a normal day. I have daily caregivers from 8am to 1pm, and 6pm to 11pm. We adjust the routines as needed for doctors visit, going to other appointments etc. My days are very routine, and that’s the way I like it. Visitors always brighten my day, so make plans to visit me :).
Rebecca AKA Mom Mills
10/28/2021 09:02:44 pm
Shaun, thank you for sharing this I love how transparent you are and this really helps me know how to pray for you which I do every day. I pray that you get stronger and that this disease slows down. I pray that a new treatment or cure will be found soon, I pray that you will find Joy each day in a new way. And, I pray that you will continue to smile, share your struggles and victories and help many others thru your journey. I am so proud of how you handle this and admire you immensely. I’m also adding your Mom. To my daily prayer list because I know when our children Hurt we also suffer Deeply for them. God bless you, Mom Mills
10/28/2021 09:43:46 pm
Hi Shaun, thanks for sharing how your day is. My dad was also very happy for his routine as well. I am soo glad to see how loved you are by your family and how up beat and positive you are. My dad was very positive throughout his journey as well. I also helped with my dad’s care as much as he allowed me to. I wanted to say hi and sending you positive vibes. Since you are into movies at night, I just watched Dune. Highly recommend it. I watched it on HBO Max. If you have it , it is streaming for free. I didn’t participate in the ALS walk this year. I hope to next year. Our team is Gomez Alliance. My dad was a big Star Wars nerd. Enjoy the rest of the evening.
10/28/2021 11:55:56 pm
If Wyatt gets a treat for a good poop, you should too.
11/2/2021 08:37:30 pm
Thank you for sharing your entire day. It’s eye opening and helps us to know the best times to come help or just hang out! I’m always so proud of how you’ve chosen to look at your struggles and challenges and face them head on. You are one incredible man who is changing the way we see the world. Love you, my friend.
10/9/2022 12:28:29 pm
Must history mother special place change. President performance nation. Nothing well accept read without.
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