A Day in the Life...

Now that my husband has recuperated from his peg placement surgery (feeding tube), our days have fallen into a routine for the most part. Bill is trying to maintain his present weight, so he starts the day with a tube flush and a feeding. He can do this himself, which lets me sleep in some mornings.

When I do get out of bed, I hit the floor running. I make his coffee, which includes adding a thickening agent so that he can swallow it without choking. . Thin liquids often "go down the wrong hole" and cause him to gag and choke. My time is then directed toward our dog, who needs a walk to take care of "digestive" needs before he gets breakfast.

Speaking of which, I eat my breakfast while Bill shaves and takes his shower. I am so lucky he has the use of his hands and can still shave himself and brush his own teeth. I am also fortunate for the VA grant which allowed us to rehab our bathroom so that our toilet and sink are at the optimal level for wheelchair access, and the shower is a wheel-in with hand-held controls, grip bars and a wide bench.



Once Bill is dressed, he needs me to moisturize his feet and put his socks on. Then I place his feet in his AFO's, or Ankle/Foot Orthotics, so he can walk. He still uses the walker around the house but the AFOs keep him steadier on his feet. I grab up Bill's laundry basket every other morning and do a load, empty the dishwasher and put the breakfast dishes in and clean the kitchen.

Now we can go out if we need to. Bill mostly only goes out to doctor appointments and the movies. If we don't go out, I sit down and check my emails, check the to do list I made the night before and take a shower.

Throughout the day, I will get things for Bill - water bottles, medicine, snacks, meals, turn the heat up, turn it down, tie his shoes, take off his AFOs, find a DVD - the list is endless, the interruptions constant. This is not a complaint, it is a way of life, a day in the life of a caregiver of a person with ALS. I get tired sometimes, I get frustrated, sure, but after forty years of marriage, those wedding vows are still fresh in my mind. He is my soul mate, my life mate, and I will cherish and honor and take care of him until our time together ends.