An Alzheimer’s Day – Part Two

A recent blog post reported on getting back into routine. Of course, with Alzheimer’s that routine constantly changes along with “the new normal” as each day passes. Over two years ago, in November 2015, I shared the Highlights of an Alzheimer’s Day back then, when Cindy might have been described as “moderate to advanced.” Now that she is very advanced here are recent highlights from “the new normal” for our routine these days.

7:00 – My alarm goes off. I’ve been awake for awhile, now that it’s light before 7:00, but I wait for the alarm to signal the start of the day. I get up to use the bathroom, then climb back into bed with my iPad, checking Facebook for birthdays, the Boneyard (UConn fan site) and whatever messages I may have received.

7:44 – I get up again, this time for Cindy. I make sure the bathroom lights are on and the toilet cover is up; easier to do these things now than when I’m balancing Cindy on one arm. I get Cindy up and we go through our morning hug routine before I bring her to the bathroom, in effect carrying her as she moves her legs. Sometimes I have to reach down and move a leg for her, like I do when we are on the stairs.

8:03 – I move Cindy to what I call “The Throne Room.” She is at her shakiest for the entire day, quite literally, until I seat her in the “throne.” I put on an episode of Planet Earth. We are now at the point when she might immediately drift off again, but in either case this is the time for me to get breakfast ready. I alternate between eggs and oatmeal. Today is an eggs day.

8:26 – I bring breakfast up on a tray and switch to watching a MASH episode. We watch MASH together, currently on season four. At the beginning Cindy needs to wake up more as I feed her. I put the forkful of eggs against her mouth until she opens it, eyes still closed, much like how a bird might feed her newborn. It takes a few forkfuls before her eyes open and her mouth opens in anticipation. Once she is fully awake I mix in the coffee as well, but this is dicey as her body still might shake unpredictably. Today only a few drops of coffee are spilled, not enough to change her shirt. Changing clothes for Cindy is need based, not daily. We may change pants five times in one day, getting close to running out before they are washed. For that reason we may go days without changing pants if there have been no accidents.

8:58 – We are done with breakfast and our episode of MASH. I practice on my acoustic guitar the fifth movement of the symphony I am composing. Playing guitar is one of the few “work” things I can do in Cindy’s company. For that reason I’ve become a much better guitarist during my caregiver days, more so on the classical guitar than the acoustic. After practicing the movement I play a few old chestnuts with a Friendship theme: Fire and Rain, Lean on Me, Pack up Your Sorrows, With a Little Help from My Friends, You’ve Got a Friend. Cindy moves in and out from perception, occasionally mouthing a few of the lyrics.

9:42 – I have a “dance” with Cindy before bringing her to the bathroom again. While our diet is impeccable and, quite frankly, so is our stool, Cindy’s mind signals her to defecate only once every 2-4 days. Today was after a four day lapse, which means there is a clogged toilet to remedy.

9:55 – I return Cindy to the throne to watch an episode of Andy Griffith while I do some morning chores: starting the laundry, washing the breakfast dishes and, unfortunately, unclogging the toilet.

10:31 – I’ve settled down in the seat next to Cindy. I’ve attached my computer to the television monitor in order for us to watch the UConn women’s basketball game that has been archived. Both of us are UConn alum. Initially, Cindy had no interest in watching basketball but I slowly converted her and watching games became one of our favorite things to do together. She has an autographed T-shirt from Stefanie Dolson, her favorite player. No suspense awaits us, since I know the outcome, but with the UConn women the outcome is usually known ahead of time anyways. Indeed, we just watch the first half when the team plays its best.

11:22 – I put on another episode of Andy Griffiths while I go down to make our customary smoothie for lunch, to be served with toast and hummus. This does not take long and I return in enough time for us to finish watching the episode together.

11:49 – I bring Cindy to the bathroom and follow that with bringing her to our bedroom where we do our “exercises.” I work her legs and arms to maintain their range of motion. As she progresses with Alzheimer’s her joints have become stiff and more difficult to move. Fortunately, I’m much stronger and will result to “cheating” if I must, using both of my arms to straighten out one of hers.

12:02 – I escort Cindy downstairs. I have to bend her stiff legs one at a time; her hips swing to her right while she bends from the hip and leans to the left; her feet turn sideways on the steps as she does this; her right elbow sinks into the top of my left shoulder, sometimes hitting a pressure point; her left hand wraps down towards my face, sometimes scratching my cheek, sometimes poking my closed eye. I am reminded I need to clip her nails again, but do not take all this personally, just a small daily challenge that needs to be overcome.

12:06 – I place Cindy on the living room couch where Elphaba awaits to pounce on her lap. I put on an episode of Mary Tyler Moore and resume some chores. I put the laundry in the dryer; I fetch the lunch dishes from upstairs to wash. After the chores I sit next to Cindy for awhile. Sometimes I’ll watch an episode or two with her, but today I first take a quick nap, leaning against her arm.

1:10 – I shake myself awake. While Cindy continues to watch MTM I go upstairs to put on my running clothes. I check out the Internet a bit before going back downstairs again. I run 300 stairs today, breaking after every 50 to go over and give Cindy a kiss. “I do this all for you, baby!” I’ll say, “I want to be your arm candy!” When I’m done with the workout I return to Cindy once again with an exhausted look. “You are such a slave driver!” I declare. “Why do you work me so hard?!?!” Cindy looks puzzled at first, but then gives me a smile.

2:33 – The current MTM episode finishes and I get Cindy off the couch, causing great indignation in Garfield, who had replaced Elphaba on her lap. Garfield tends to get his way with his sister … and his humans. We hug for awhile and then off we go. Going upstairs is much easier. Her leaning occurs all on my left arm; the only problem is the wait time for her right leg to swing into place after I’ve lifted up her left leg. At the top of the stairs we curl around to hit the bathroom again. Up until now the schedule is roughly every two hours, but experience indicates the next time after this will be in the evening.

3:00 – The companion from Helping Hands has come. She will read to Cindy for awhile, then watch episodes of Gilmore Girls with her. I fetch the laundry to fold and put away, then do some computer work. I sort through articles on brain health or dementia to look for ones that focus on living well, then I work on my next blog post.

4:49 – I start supper, making a batch of brain health soup that will last us for 4-5 days. Everyone likes this soup and consider me a decent cook. In reality my culinary offerings are limited but spices good for brain health also make for a tasty soup, probably no small coincidence. Charissa once reflected I had turned into a good cook and I replied that was because I did not care how our food tasted. That reply has turned into an anecdote she shares to confirm how odd her Dad is.

5:56 – I bring up a bowl of the soup and the rest of supper: small salad, cup of yogurt with chia seeds and a large mug of apple cider. The companion leaves at 6:00; we watch yet another episode of MASH while eating supper.

6:29 – I bring Cindy to the bathroom for what I know will be the last time that day. I change her into her pajamas and brush her teeth while we are there. While waiting to hear the “tinkle” sound I connect my laptop to the television monitor again.

6:45 – I start to play World of Warcraft (WoW), while Cindy watches. WoW offers worlds to explore that satisfies the thirst of this long distance hiker turned homebound caregiver. Cindy often pays closer attention to this video game than to television shows; maybe the game is addressing her latent thirst for adventure as well. I inform her that I’m her hero, saving the world of Azeroth from murlocs, demons and other evils.

8:53 – We “dance” a few songs, then while the laptop is still hooked up to the television I call up the latest episode of NCIS from the CBS website.

9:57 – I tuck Cindy into bed. I sit on my side and read her a story from Chicken Soup: A Christmas Treasury as her head tilts slightly up to listen. Now that we are into February we are almost done with this anthology. After the story I sing hymns to Cindy and her head droops back down until it lies on the pillow. Her eyes close and I am thankful that each night she can find rest, if not peace, from her affliction.

10:23 – I go through my Facebook/Boneyard/email checks one last time. I pick up the sudoku book I’ve been working on. I’m now on the hard puzzles and work on them until my mind gets fatigued and I’m ready for sleep.

11: 27 – I turn my light out at the close of another day, much like all the other days since our return from hiking the the PCT in 2014. I kiss Cindy’s forehead and say “I love you” as she sleeps. Now I will get my own rest, if not peace, from her affliction.