Caregiver Perspective: Lack of Sleep; the Root of All Evil
There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.
Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.
I miss those days.
Now I usually go to bed between 3 and 4:00 a.m. I set my alarm to get up five hours later because I can function on five hours but don’t do as well on four and I have so much to do that I really can’t just stay in bed. The alarm goes off, I moan and contemplate rolling back over trying to remember what day it is in my head and what is planned for the day. Then usually I hear, “Sweetie, get up. I need to be cathed.” That gets me up because it’s not really something one can ignore without significant consequences. Maybe five hours doesn’t seem so bad but I also have to get up at least twice during the night to cath Lynn and to relieve the stiffness in his limbs by either stretching them or putting his legs into an exercise machine that moves them automatically. While I’m up, there are usually a series of other tasks he wants done so I’m often out of bed at least 15 minutes and sometimes as long as 30 minutes. Therefore, in reality, I’m not really getting five hours. I’m getting five broken hours that might truly total 4 ½ or less.
A lot of studies have been done on sleep deprivation. I think I have most of the side effects noted due to lack of sleep.
- I eat to stay awake. I work all day at my computer. Sitting and reading for long stretches makes me feel sleepy. I don’t have time to sleep so I reach for something that will give me a jolt of energy—caffeine or carbohydrates/sugar. They both give me a quick fix but their power wains after a while and I need another fix. Therefore, I now have a significant weight problem. I know I need to lose about 30 pounds but I don’t know how I would be able to function without my sugar/caffeine fix so I put off trying.
- I fall asleep without warning. I have often awakened at my computer not aware that I had fallen asleep. I may sit back to rest my eyes (they burn terribly most of the time) and before I realize it, I’m waking up several minutes later.
- I have no energy. The slightest exertion wears me out. Part of that I know is my weight and lack of exercise but some of it is the fatigue.
- It’s difficult to remember or focus. I feel like I’m in a haze or that my thoughts are just beyond my reach while I’m swimming under water.
- I’m short tempered. I have very little patience when I’m very sleepy.
- I cry easily. When I’m very tired if something becomes very hard to do or I get frustrated, I may just dissolve into tears.
- I struggle not to fall asleep when I’m driving. This one scares me because I have to do all of the driving and I often drive in a fog. I keep a snack close by to help me stay awake because it’s about the only thing that works.
- I just feel lousy. I feel like I struggle to move, to think, to do anything and the fatigue makes me feel like I have a cold or am getting sick with a virus.
- I now have something wrong in my gut causing severe intestinal spasms.
- Fortunately, I don’t have them often but when I do, they are intense and I have to take medication to stop them. I’m seeing a specialist soon to try to find out what’s going on but it’s a good possibility it’s just stress.
I keep thinking I’ll just cut my activities short at night so I can get more sleep but that just doesn’t work. Working full time I need to put in an eight hour day in my office. Since I get interrupted a lot, I end up working till 8 or 9:00 p.m. most days. To get us ready for the following day and to do bathes and meals at the conclusion of this day takes about five hours. If I have additional things that need to be done (which I always do) then add on another couple of hours. I can’t say I’ll do them tomorrow because tomorrow is like today or it could be even worse.
For now, I don’t know how to get at the solution of getting more sleep so cat naps throughout the day are a must. I can take a 10-20 minute nap and get my energy back so I have to find times to work those in among my other duties. In fact, I need one of those naps right now.
How many specialists did you see before finding "The One"?