Note, I recognize this is longer than Akhil’s normal blogs. There is a lot that goes into creating another day in Akhil’s life so lots of words were needed!
A day in Akhil's life isn't simply a day in his life. His every action must be completed by someone else so a day in his life becomes a day in someone else’s life.
When he wanted to write a blog about his day, I thought it was a good idea to share with the world what the guts of living daily with ALS looks like both from Akhil’s perspective and mine (Laura, his wife). Akhil will share his perspective next week.
A day in Akhil's life isn't simply a day in his life. His every action must be completed by someone else so a day in his life becomes a day in someone else’s life.
When he wanted to write a blog about his day, I thought it was a good idea to share with the world what the guts of living daily with ALS looks like both from Akhil’s perspective and mine (Laura, his wife). Akhil will share his perspective next week.
Let's begin our "day" at night, right around midnight. Akhil has been in bed preparing for sleep for about an hour at this point. He has had morphine for any pain and “air hunger”. Because of the weakening in his diaphragm muscles from the ALS, Akhil is not able to breathe deeply enough to satisfy his body’s need for air. When that happens, it can induce anxiety and breathlessness and feelings of ‘air hunger”.
He also has had Lorazepam which helps with the anxiety brought on by the air hunger as well as from thoughts that I won’t hear him needing something at night and he will be left to suffer, his cries unheard. He has also had Amitriptyline which helps reduce saliva production. Taking this medication helps prevent Akhil from choking on his saliva in his sleep which can induce an anxiety attack. All of these things help his caregiver (either me or Russell) sleep better too!
Back to our day at midnight, Akhil is still requiring adjustments to get comfortable so he can sleep: he decides he is cold and needs to be covered, his body needs to be shifted, his nose needs to be scratched and the mask to his AVAPS machine that expands his lungs further than he can on his own, is leaking air so it needs to be adjusted.
After about forty-five minutes of getting comfortable, Akhil is ready to sleep. I take a dose of Benadryl so that when I am awakened during the night to take care of Akhil’s needs, I can quickly fall back to sleep. If I skip this, I tend to lie awake for a couple of hours tossing and turning trying to fall back asleep before my next awakening.
He also has had Lorazepam which helps with the anxiety brought on by the air hunger as well as from thoughts that I won’t hear him needing something at night and he will be left to suffer, his cries unheard. He has also had Amitriptyline which helps reduce saliva production. Taking this medication helps prevent Akhil from choking on his saliva in his sleep which can induce an anxiety attack. All of these things help his caregiver (either me or Russell) sleep better too!
Back to our day at midnight, Akhil is still requiring adjustments to get comfortable so he can sleep: he decides he is cold and needs to be covered, his body needs to be shifted, his nose needs to be scratched and the mask to his AVAPS machine that expands his lungs further than he can on his own, is leaking air so it needs to be adjusted.
After about forty-five minutes of getting comfortable, Akhil is ready to sleep. I take a dose of Benadryl so that when I am awakened during the night to take care of Akhil’s needs, I can quickly fall back to sleep. If I skip this, I tend to lie awake for a couple of hours tossing and turning trying to fall back asleep before my next awakening.
We both finally doze off around 12:45am. I am awakened at 2:00am by Akhil’s shouts muffled by the mask and noise of his AVAPs. The mask is leaking again. After attempting to adjust it, but not being able to stop the air from leaking around the mask and blowing into his eyes, he insists I remove the mask altogether.
I hate to do this because the AVAPs helps deliver more oxygen to his body then Akhil can get without it. I reluctantly agree. I adjust Akhil’s position in the bed to prevent pressure sores from forming. We both get back to sleep by 2:30am.
At 6:00am, I am awakened again by Akhil. He needs to be moved. I shift his position quickly and slip back into bed. Now sleep comes more slowly for me because it is getting close to the time that I awaken the rest of the week when I am not taking care of Akhil. I know I need more sleep or I will be dragging so I force myself to lie there until I doze off. I wake up on my own at 8:40am feeling well-rested.
I hate to do this because the AVAPs helps deliver more oxygen to his body then Akhil can get without it. I reluctantly agree. I adjust Akhil’s position in the bed to prevent pressure sores from forming. We both get back to sleep by 2:30am.
At 6:00am, I am awakened again by Akhil. He needs to be moved. I shift his position quickly and slip back into bed. Now sleep comes more slowly for me because it is getting close to the time that I awaken the rest of the week when I am not taking care of Akhil. I know I need more sleep or I will be dragging so I force myself to lie there until I doze off. I wake up on my own at 8:40am feeling well-rested.
I start the morning by giving Akhil a formula in his feeding tube – his first 375 calorie installment. I adjust his position and ask if he wants to get up or sleep. He chooses sleep. I go to the kitchen where I prepare the day’s three doses of a variety of supplements mixed with coconut oil and water.
I grab some workout clothes then head to the basement to exercise. It may seem selfish that I take time to work out each day but it is a time to clear my mind and build up my strength so I can continue in my part-time role as caregiver for Akhil.
I am cognizant of the time as I am exercising. I run upstairs every ten minutes to check on Akhil. Although I am working out in the room directly beneath him and could hear him if he called out, I think it makes him sleep better knowing that I will be checking in frequently. At 9:40, I head upstairs to give Akhil his first dose of supplements through his feeding tube. Then I finish up my workout and am back upstairs shortly after 10am.
I grab some workout clothes then head to the basement to exercise. It may seem selfish that I take time to work out each day but it is a time to clear my mind and build up my strength so I can continue in my part-time role as caregiver for Akhil.
I am cognizant of the time as I am exercising. I run upstairs every ten minutes to check on Akhil. Although I am working out in the room directly beneath him and could hear him if he called out, I think it makes him sleep better knowing that I will be checking in frequently. At 9:40, I head upstairs to give Akhil his first dose of supplements through his feeding tube. Then I finish up my workout and am back upstairs shortly after 10am.
I ask Akhil if he ready to get up at 10:15. He agrees that he is ready to start the day. I give him a sponge bath in his hospital bed. I used to give him a shower but lifting him has gotten more difficult for me as he is able to assist less and less so we skip transferring him to the shower chair and settle on a bath in bed.
He interrupts the bath to request suction as he has more mucus than he can swallow in the back of his throat. After helping him with that, I continue his bath. I carefully clean around his feeding tube in his belly. I change his condom catheter, a device that catches his urine. I think about how freeing it was when we first began to use the condom catheter. We would use it for outings because it allowed us to leave the house and not have to worry that there would not be a bathroom that I could help Akhil use. Now it is not an option but a necessity. I check his body for signs of skin breakdown or pressure sores. I put shorts, socks and shoes on Akhil.
I lift him from his bed into his power wheelchair at 10:30am. Akhil indicates that he wants to use the toilet. I maneuver his 24” wide chair carefully through the 25 ½” opening to the commode room. There are plenty of scars on the door and trim indicating where failed attempts have been made. This time, I am successful! I get his chair as close to the toilet as possible in the 3’ x 5’ space that is the commode room.
It is a tight fit with me, Akhil and the chair trying to occupy the same space. I lift the 130 pounds of limp weight that is Akhil and try to pivot his feet to help me position him on the toilet. Some days the landing is gentler than others; today goes fairly smoothly. I back the wheelchair out of the space into the main bath area. I get Akhil a neck brace to hold his head in place so it doesn’t flop back or forward sending him into a panic when he either cannot breathe or swallow. He lets me know that he needs more suction to clear his throat.
He interrupts the bath to request suction as he has more mucus than he can swallow in the back of his throat. After helping him with that, I continue his bath. I carefully clean around his feeding tube in his belly. I change his condom catheter, a device that catches his urine. I think about how freeing it was when we first began to use the condom catheter. We would use it for outings because it allowed us to leave the house and not have to worry that there would not be a bathroom that I could help Akhil use. Now it is not an option but a necessity. I check his body for signs of skin breakdown or pressure sores. I put shorts, socks and shoes on Akhil.
I lift him from his bed into his power wheelchair at 10:30am. Akhil indicates that he wants to use the toilet. I maneuver his 24” wide chair carefully through the 25 ½” opening to the commode room. There are plenty of scars on the door and trim indicating where failed attempts have been made. This time, I am successful! I get his chair as close to the toilet as possible in the 3’ x 5’ space that is the commode room.
It is a tight fit with me, Akhil and the chair trying to occupy the same space. I lift the 130 pounds of limp weight that is Akhil and try to pivot his feet to help me position him on the toilet. Some days the landing is gentler than others; today goes fairly smoothly. I back the wheelchair out of the space into the main bath area. I get Akhil a neck brace to hold his head in place so it doesn’t flop back or forward sending him into a panic when he either cannot breathe or swallow. He lets me know that he needs more suction to clear his throat.
At 10:50am, I lift Akhil off the commode back into his wheelchair. We continue with his morning routine. I put his shirt on him so we can tackle the next item on our agenda: clearing his lungs. I take him back to the bedroom which is beginning to resemble a hospital room with the bed and all the paraphernalia used to keep Akhil functioning.
I put a vest on Akhil that attaches to a machine that violently vibrates his chest for twenty minutes to loosen the mucus that has built up overnight. Meanwhile, I throw in a load of laundry, make the beds and tidy up. I stay within earshot because Akhil can suddenly need suction during this process. Today the machine runs its course uneventfully.
After unfastening the vest, I get two more machines ready to go: the cough assist and the suction machine. The cough assist does just what it sounds like. It helps Akhil cough because he no longer has the muscles to do that on his own. It forces air in his lungs to expand them then it pulls air back out. We go through a couple of cycles of this before the cough is productive bringing up mucus which I quickly suction away. We repeat this process until Akhil is either worn out or feels that his chest is clear, whichever comes first.
At 11:30, we have completed that exhausting regimen. I give Akhil a second formula through his feeding tube. I shave him, trim all the unruly hair that you men know about, trim his nails and brush his teeth. He is looking handsome and ready to tackle his plans for the day. I am finally able to get in the shower. It is 11:50am.
I put a vest on Akhil that attaches to a machine that violently vibrates his chest for twenty minutes to loosen the mucus that has built up overnight. Meanwhile, I throw in a load of laundry, make the beds and tidy up. I stay within earshot because Akhil can suddenly need suction during this process. Today the machine runs its course uneventfully.
After unfastening the vest, I get two more machines ready to go: the cough assist and the suction machine. The cough assist does just what it sounds like. It helps Akhil cough because he no longer has the muscles to do that on his own. It forces air in his lungs to expand them then it pulls air back out. We go through a couple of cycles of this before the cough is productive bringing up mucus which I quickly suction away. We repeat this process until Akhil is either worn out or feels that his chest is clear, whichever comes first.
At 11:30, we have completed that exhausting regimen. I give Akhil a second formula through his feeding tube. I shave him, trim all the unruly hair that you men know about, trim his nails and brush his teeth. He is looking handsome and ready to tackle his plans for the day. I am finally able to get in the shower. It is 11:50am.
I go to the basement where I have been living for the past two years since this disease took over my space in the master bedroom. I sleep on a sofa bed when Russell is here, living in a space that was intended for short-term guests, not a permanent resident.
I have moved my toiletries downstairs so I can shower and get ready but I have not moved my clothes. I think part of me is hoping that there will come a day when life returns to “normal” and I once again occupy the queen’s place in the house!
I have moved my toiletries downstairs so I can shower and get ready but I have not moved my clothes. I think part of me is hoping that there will come a day when life returns to “normal” and I once again occupy the queen’s place in the house!
At 12:30pm I give Akhil his second dose of supplements in his feeding tube. This is a source of additional calories thanks to the coconut oil and also counts toward Akhil’s liquid intake. It is my (or Russell’s) responsibility to make sure Akhil gets his four formulas per day plus four cups of water or liquid. If we fail, there are consequences like issues with using the bathroom and dehydration.
The afternoon moves along at a more leisurely pace. Akhil has time to play chess on his eye-gaze-equipped computer or watch TV. I have an opportunity to do more laundry and get caught up on household tasks. The time from 12:45 until 4pm is basically “free time”.
I just have to give Akhil a formula at 1:30 and another at about 3:45. Other than that, I stay close in case he needs something. He typically needs his elbows moved and feet adjusted fairly frequently and occasionally some suction. Other than that, the afternoon is mine! Today I choose to spend that free time writing this essay and catching up on laundry.
The afternoon moves along at a more leisurely pace. Akhil has time to play chess on his eye-gaze-equipped computer or watch TV. I have an opportunity to do more laundry and get caught up on household tasks. The time from 12:45 until 4pm is basically “free time”.
I just have to give Akhil a formula at 1:30 and another at about 3:45. Other than that, I stay close in case he needs something. He typically needs his elbows moved and feet adjusted fairly frequently and occasionally some suction. Other than that, the afternoon is mine! Today I choose to spend that free time writing this essay and catching up on laundry.
Just before 4:00, I move the van into the street so I can load Akhil into it so we can attend our church’s evening service. Our driveway is slanted and Akhil feels it is dangerous to ride up the ramp into the van on a slope. (I have the computer set up so Akhil can see what I am typing on the big screen TV so he informed me he does not “feel” it is dangerous, it IS!)
I humor him and move the van to the flat street. I maneuver the wheelchair into the van using the ramp that comes out the trunk. I fasten the hooks to the front and back of the wheelchair to keep it secure. I put a seatbelt on Akhil to keep him secure and adjust his chair so he is comfortable.
As I drive us to church, I have to be careful to avoid potholes and go slowly so Akhil doesn’t get too jostled. He doesn’t particularly enjoy going places these days because of how uncomfortable the car ride can be. Once we get to church, I unhook his chair, unfasten his seatbelt and Jordan drives him out of the van and into church for reasons I won’t go into but think back to the bathroom door scars.
I humor him and move the van to the flat street. I maneuver the wheelchair into the van using the ramp that comes out the trunk. I fasten the hooks to the front and back of the wheelchair to keep it secure. I put a seatbelt on Akhil to keep him secure and adjust his chair so he is comfortable.
As I drive us to church, I have to be careful to avoid potholes and go slowly so Akhil doesn’t get too jostled. He doesn’t particularly enjoy going places these days because of how uncomfortable the car ride can be. Once we get to church, I unhook his chair, unfasten his seatbelt and Jordan drives him out of the van and into church for reasons I won’t go into but think back to the bathroom door scars.
We enjoy the church service and get home at 6:30pm. I give Akhil his last supplements in his feeding tube and figure out if he has had enough water today compensating for any shortage. I get dinner ready for me and Jordan. It is usually something quick and simple because I am exhausted from having most of my time spoken for.
I lament my expectation that weekends are supposed to be for fun and relaxation, something that evades me. We wrap up dinner and dishes by 7:30pm. I sit down for an hour or so to talk to Akhil or watch a show with him. Russell comes to take over at 9:00pm. He and Akhil head to what used to be my bedroom where they shut the door and begin their routine.
I descend to my bedroom where I spend some time planning the week ahead and reflecting on the blessings of this past week. Rather than focusing on all the work and exhaustion, I focus on how thankful I am to still have Akhil in my life. I close my eyes and enter a peaceful rest.
I lament my expectation that weekends are supposed to be for fun and relaxation, something that evades me. We wrap up dinner and dishes by 7:30pm. I sit down for an hour or so to talk to Akhil or watch a show with him. Russell comes to take over at 9:00pm. He and Akhil head to what used to be my bedroom where they shut the door and begin their routine.
I descend to my bedroom where I spend some time planning the week ahead and reflecting on the blessings of this past week. Rather than focusing on all the work and exhaustion, I focus on how thankful I am to still have Akhil in my life. I close my eyes and enter a peaceful rest.
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