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.

Good night.

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Comments

View Comments (1)
  • teddy s.
    3 years ago

    As a caregiver, I came to this website a few months ago as a result of links to several of your posts. I understand and identify with many of the issues you address, but have a different outlook on many of them.

    I have been with my fiancee, Tracey, for ten years. She had been diagnosed ten years earlier and the RRMS had transitioned to SPMS after two years. By the time we met, she had fully lost the use of her legs and was wheelchair bound and incontinent. Having a disability myself (hemiplegia) her MS did not scare or deter me. We bonded quickly and I realized that she was the woman I wanted to spend the rest of my life with.

    Five years ago, her MS was complicated by the development of four stage 4 bedsores, from which she is still recovering. After returning from the hospital, she was approved for a PCA five days a week, and received thrice weekly nurse visits for wound care. We went through several attendants, all of whom were unreliable or incompetent. After a year of missing a lot of work when the attendants did not show up, I decided to retire and become a full time caregiver. I also learned all about the wound care, and can fill in for her nurse when necessary.

    I can identify with the lack of sleep and the problems that come with it. But for me, this is a problem that I have had most of my adult life. Figuring out ways to deal with this has allowed me to adjust to the uneven sleep patterns that come with caregiver status. I have always worked very hard to keep myself in good physical shape. Before I became a full time caregiver, I would exercise for two hours every day as soon as I woke up. Now I find that an hour or so of intense exercise two hours before bedtime allows me to recover and fall into a deep sleep much quicker. It goes against the conventional wisdom, but it works for me.

    I have some advantages that most caregivers do not have, and I deal with many of the negatives that we all deal with. I know I made the right choice to become a full time caregiver, and the positives far outweigh the negatives. Although Tracey has lost the use of most of her body, her mind is still sharp, and we find interesting and enjoyable things to do together.

    I get frustrated from time to time, mostly with myself for the things that are difficult or impossible for me with my own disability. But I wouldn’t trade the caregiver life for anything.

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