So you ask, “What’s so different about your day and mine?”. Several things I’d guess if you don’t have ALS. I am usually sound asleep at around 7:45 a.m. when I am awakened by my husband removing my Trilogy (think BiPAP) mask. You see, my aides are not allowed to do it; it requires special training, something my husband doesn’t have. Oops!
Once I’m half awake he reaches under the covers to get my feeding tube. It’s time for breakfast in bed! (More special training required.) I get an 8 oz. container of IsoSource for breakfast. I do not put real food in my tube. I can’t taste the food and I know that the IsoSource has the right amount of nutrients so why mess with a good thing. When you no longer eat by mouth, insurance pays for your food. (It’s funny when you consider what insurance covers and what it doesn’t cover. The insurance gods cover just enough to stay alive but not always enough to be comfortable.)
Once breakfast is done I’m back to sleep until my aide shows up at 9 a.m. Then I either beg for a few more minutes of sleep or get up and it’s time for toiletting and a shower. Toiletting now requires either a bedpan or the shower chair to be used over the toilet. I’ve lost the use of my toilet seat bidet. Getting out of bed is a task that requires a Hoyer lift. Sleeping in bed on the Hoyer sling makes it a bit easier for the caregiver but can be annoying and scratchy to sleep on. Positioning of the sling is key. Getting into the upright shower chair requires a bit of strength to either pull me into position or pushing against my knees as I am lowered in the sling and onto the chair. Most times I land uncomfortably or crooked. I have learned to live with it if at all possible. If not, it’s try again. So now I’m in the chair and all clothing is removed by my aide. If I use the toilet, the aide cleans me afterwards. Then it’s into the shower. Our huge garden tub was removed and replaced with a roll-in shower. In the shower I can no longer stand or use the grab bars. I brush my teeth in the shower because it is less messy than at the sink. Holding the electric toothbrush is getting difficult.
Shower is done. I’m dried off, powder and lotion is applied, a fresh piece of gauze is placed around the feeding tube and under the silicone retainer. I’m ready for dressing which means I’m back to the Hoyer lift. The bottom half of my clothing is put on in bed. Depending on who is dressing me, I will either be rolled side to side (something I cannot do myself) or lifted into the Hoyer so my pants can be pulled up to my waist. The next Hoyer ride is over to the wheelchair for bra, shirt, shoes and socks. I’m almost ready for the day and it’s sometime after 11 a.m., probably closer to noon.
Lunch? Aides are not able to feed me formula in my tube so it has to be something I am able to chew and which will not cause choking. This means no crackers or bread, nothing spicy, and food needs to be cut up small. I wear a bib to eat. I usually can feed myself but sometimes need help. I cannot raise my arms high enough at times or I am just too fatigued and require help. If I were to have a choking attack, I have a cough assist machine which could help. Of course, the aide is not permitted to use the machine. I guess they don’t want her to kill me while I’m choking.
So now I have reached midday and can try to do some off the things I enjoy. Not much time left if I am going to take a nap. When most people are leaving for home, I may be napping or just waking up. It’s hard to find enough time to get things done and I don’t work. I cannot do much anyway. There are a million obstacles I encounter each day. I can’t even pick up something weighing five pounds. One pound may even be too much.
By 9:30-10:00 p.m. I’m ready to go to bed. My husband is now the lone caregiver. He’s the one without training who does all the jobs the skilled, paid caregivers are not permitted to do. Of course, I can get an aide who is fully qualified, but all the fees are out-of-pocket. This surprises a lot of people who believe that medicare pays for caregivers. We had a nighttime aide for a few days, but there is a three-hour minimum. We decided we were spending money for the aide to watch tv in my bedroom. We also didn’t want to keep teaching aides about ALS.
This is just one typical day in the life of this PALS (person living with ALS). Each PALS has a unique journey. We need your support. You can help with ALS research and resources by walking or donating to Team Kathryn