I’ve always loved to sleep. I don’t nap during the day, but if I had my preference I would go to bed between 10 and 11 p.m. and not get up again till 9:00 a.m. A good night’s sleep for me is 9 hours. During that time I might get up once to go to the bathroom but most of the time I would spend in slumber. I also love after a good night’s sleep to slowly come awake–stretch a bit, and allow myself to fully come awake.
I can’t remember when I last had a “good night’s sleep” based on the description above. I long to go to bed (which is the “love” part of the relationship) but I hate how often I have to get up at night. A typical night for me now is to get into bed between 1:30 a.m. and 3:00 a.m depending on how long it takes Lynn to eat dinner (he likes to eat around midnight) and how long to get him settled and comfortable afterward. It takes him about 45 minutes to eat dinner. After I feed him, then I help him do his teeth. Then I put him to bed.
Bedtime is a ritual. It’s very difficult to get comfortable in bed. Since he cannot move any part of his body himself (other than his left arm), I spend a lot of time moving body parts, positioning them with pillows or whatever, putting corn starch in places that might rub, putting his “contractor prevention” boots on, then setting up and strapping on his Hayek shell (making sure it doesn’t have any leaks), etc. Meanwhile, I put in a catheter to drain his bladder, adjust the settings on the Hayek, and heat up 2-3 heating “pads” in the microwave to put in various places against his body because of the air movement from the Hayek over his chest makes him cold. Then he gets some water, sleeping aid, and dry mouth gel. I pull his covers up tight under his chin and tell him goodnight and then go off to get ready for bed myself. Some nights I have to repeat some of the above a few times. Other nights I just about get him settled and his leg starts “jumping” (muscle spasms).
If his leg starts to jump, that means undoing all the above, getting him back up and dressed in his wheelchair, setting up the peddler (make sure it’s not rubbing any ankle bones after it’s jumped a few times), putting weights on the peddler so the spasms don’t knock it out of position, then putting a head strap on his head to keep his head from falling onto his chest when he falls asleep and putting a terry-cloth cape over him and his wheelchair so he won’t get cold. Then I go to bed.
Somewhere around 1 1/2 – 2 1/2 hours later, I hear, “Hey sweetie, I want to go to bed.” I get out of bed, take him off the peddlar and start the process outlined above (cath, Hayek, heating pads, boots, water, mouth gel, covers). Then I go back to bed. Usually about 2-3 hours later, I hear, “Hey sweetie, I need to get up; I’m stiff.” So up I go and reverse the process again. Usually I put him to bed about three times a night and get him out of bed twice. The last time I put him to bed is usually when I’m getting up for the day which is usually six or seven hours after I go to bed; sometimes five but always less than it seems because of being up so much.
When I get up most days now, I’m tired, sleepy, and my body aches. The body aches are a combination of sore muscles from lifting but also age so I guess if I had a full night’s sleep I would still be achy. The sleep deprivation is a bear, however. Coffee helps a lot but just keeping up movement does, too. I usually hit a wall around 5 p.m and if I’m lucky, I can catch a 30-60 minute nap before he gets me up for something he needs. That keeps my feeling pretty rested till bedtime. But with all that I have to do at night now, I feel like I’m “on” 24-hours a day without a break. Night-time just isn’t what it used to be anymore.