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Time or Just One Continuous Move Forward?

Are you the type of person who keeps a calendar and checks their watch several times a day?  I am.  Since I can remember, I have been a clock watcher. I always had a sense of what time it was and what day.  Not that I was always punctual but I always had my schedule somewhere in my subconscious. 
I’ve found that keeping track of time is one of the things that seems to be “slipping” as a priority now that I’m a full-time caregiver.  I don’t even wear a watch anymore! When I first started taking care of Lynn full-time (meaning doing almost everything for him) I tried having a schedule. I even wrote out a treatment schedule and recorded when I gave certain treatments and when I did catheterizations, breathing treatments, etc. After a few weeks, I found that was a task that was just not necessary. Things would get done when they got done.
Why this change in philosophy?  Mainly because being flexible is essential to survival.  When we get up is contingent on when we go to bed and how often he gets up at night. When we go to bed is determined by how many times I was interrupted by him during my work day which influences whether I stop working at 7 pm or, like tonight, at 11 pm.  When we eat depends on what needs to get done when and how hungry we are.  Sometimes I get up and shower, fix his breakfast and supplements, then fix my breakfast, help him with his exercises and then help him with tolieting.  Other days events happen in the reverse order.  Sometimes it takes two hours; sometimes more than three.  If I try to keep a schedule, it just produces stress and frustration.  I’ve actually started setting a timer if I need to call in for a conference call at work because I often have no concept of what time of day it is.  I guess that happens, too, when you actually, truly, never stop in a twenty-four hour period. 
Work twenty-four hours?  Everyday?  How can that be?  Well, when you think about it, the only time I’m not working at either being a caregiver, employee, or housekeeper, is when I’m asleep but I only sleep two 1/2 hours at a time usually before I have to get up and be a caregiver again.  I take a series of naps instead of sleeping straight through the night–sort of like being a new mom.  Sometimes I’m only up for 15 minutes; other times it’s 30-45 minutes.  Lately it’s usually just 15 or 20 so I’m getting more sleep than I used to but if you can’t go to bed and sleep straight through the night does that count as an actual night’s rest?
I know I get rest but I still feel like I’m on duty all the time.  I guess it’s like being a medical resident.  A medical resident works all day then is on call all night.  How much sleep they get is dependent on how much the patients need them.  They might catnap or they might sleep a couple of hours but they are always “on” and when the next morning rolls around, they are back to work, the same as if they had a full night’s sleep.  That’s me!
So for a caregiver, time is irrelevant.  It doesn’t matter what time of day it is or what day of the week; you are “on duty.”  Weekends are just another day, more or less; and 3 a.m. will often catch you doing what you did at 3 p.m. ….so who needs a watch?

Things are improving…

I try to be thankful for any positive changes.  Sometimes I almost forget that but I try to remember each night when I say my prayers, to say, “thank you,” for all the good things that happened that day, even if the good thing is that nothing bad happened.


Although Lynn has not been feeling well since this week’s full moon made him feel all achy, we’ve been seeing improvements.


First off, he’s been getting hot and hasn’t had to wear extra layers as much.  We suspected the iron he was taking was helping him and sure enough, we got his lab work back this week.  His hemoglobin had risen from 8 to 12 in just one month!  That’s awesome!  He’s still low but low normal now.  His iron levels are still too low (he’s 33 and normal is 30-400) but he’s now at least in the range.  He’s been so bone-chilling cold for months now that this is great.  The other good point about this is that if he get’s his hemoglobin stabilized, they might do another treatment of plasmapheresis to see if he can get even more improvement.  That wouldn’t be till November or December but that’s a good possibility.


Second, he saw his pulmonologist and got a good report.  We were a little worried because he’s not using his Hayek as much because he now sits up all night to sleep (my third good

change).  Remember, I wasn’t getting any sleep at night?  Well he now sits up in his wheelchair all night attached to his peddler exerciser so that if he gets stiff, he just starts the peddler going again. He’s also careful not to drink very much just before bedtime. That means that now I only get up once a night to cath him!  Which means I sometimes get up to four hours of sleep in a row!  I’m a much happier camper.  Anyway, since he doesn’t lie down, he can’t use the Hayek so we were a bit concerned about what that might mean for his lungs.  His doctor said that as long as he’s sitting up, gravity doesn’t affect his diaphragm so it’s easier for the lungs to expand anyway.  Also, he’s not bothered by sleep apnea when he sits up probably because his tongue doesn’t fall to the back of his throat.  So that’s all good.


He has also started promoting his book through book clubs and has gotten some who want to review it in their club.  He’s sending out letters himself and researching places to contact.  Previously he has always had to do that with either myself helping him or one of our friends.  He’s sent out about 65 emails and so far gotten five positive responses which statistically is very good. The positive responses have been good for his morale and the typing has been good exercise for his fingers.


So we’ve had much to be thankful for this past week or so.  We still have our challenges.  Ragweed is out and making him stuffy and congested.  That’s no fun.  He can’t find the motor he wants for the leg lifting device he wants to make so he can sleep in the bed at night.  My son called to say he might have to move back home because his girlfriend’s family might be evicted in October (they are two months late in their house payment and have already gotten an eviction notice…how cruel).  He stays there so if they lose the house, he will come home till they all find a place to move into later.  Our lawn tractor is broken so we can’t mow but that’s no biggie…it’s mainly the back yard that grows anyway.  The arthritis in my thumb joints and wrists have been really bothering me a lot.
So even though we have new and ongoing challenges we face every day, we have much more to feel blessed about than we had last month– so we’re to the good.  I hope you are as well.

 

I have the blues today

I don’t know why.  But I’m feeling blue. Maybe the atmospheric pressure is playing a role since we are waiting for  the hurricane to roll in tomorrow night.  I think it’s primarily due to lack of sleep and trying to get away today.


I worked till 10 last night and then Lynn wanted to lie down for a nap.  I put him to bed and had so much I needed to do that I let him sleep from 10:30 till 12:30.  I know that was a mistake and I knew it when I was doing it but I needed some uninterrupted time to finish what I was working on.  (Plus we spilled some urine on his seat cushion and I wanted to get his favorite socks, leg warmers and the seat cushion clean for him before he got up)….so I let him sleep.


Of course he didn’t feel like eating right away when he woke up so I worked on downloading my contact list on my phone so I could transfer the information to my new phone. As usual I ordered what I needed over the internet so I was reading instructions so I could “do it myself.” I got him feed and into bed by 2:45 a.m.   I set my alarm for 9:00 a.m. because I was supposed to have a conference call regarding an issue at work.  At 4:00 a.m. he needed to be cathed.  I got up and did my thing, (while he slept) and was just about to settle back into bed when he decided he was too stiff to sleep and wanted to get up–so I got him up and got to bed around 5:00 a.m. He peddled till 7:00 a.m. and wanted to come to bed.  I was so tired.  I pulled up my work email and a message that I needed to reschedule the 9 a.m. meeting.  I went back to bed.  He got up at 9:00 a.m .  I went back to bed after getting him dressed and settled and fell right back to sleep.  My alarm went off again at 11.


I had a 2:00 doctor’s appointment for myself.  It was for a physical but also to talk about my painful hands and hip joints and the fact that my feet are numb all the time now. I showered, got breakfast, got Lynn dressed, got his meds ready, we ate, I took him to the bathroom, checked my emails, got my stuff for the appointment, put a foley in him for the day since his son was going to stay with him, got a message his son was going to be late but to go ahead and go….In the middle of this, I had several “special” requests, help with his email, help with the window AC, measure something for the device he wants to have built to help him keep his legs moving while in bed.  Each interruption just caused me to become more tense.  I finally, in frustration, told him he couldn’t ask me for one more thing, I was going to be late. He then said, “that’s why I asked you if getting up at 11 would give you enough time.”  To which I responded, “but you also told me you didn’t want me to go if I was going to fall asleep driving so I was trying to get at least 6 1/2 or seven hours when all the naps were totaled.”  He agreed that was more important.  I finally ran out of the house to go to my appointment.


I made it right at 2. I have a 45 minute drive.  I got so sleepy driving and was so tired.  I listened to a book as I drove which helped but I was really more like a zombie.  I read while I waited for my appt. and was seen. My doctor told me I really needed to find a way to get some sleep or it was really going to take a toll on my health.  She admitted she knew that would be a challenge.  She also told me until I could get some rest, I probably wouldn’t be very successful trying to lose weight because the stress was causing my body to hold on to “stores” to fight the stress.
I think that’s part of why I’m blue.  I want to see if we can get someone to be here at night so I can sleep more than two hours at a time but Lynn is so against it.  He doesn’t want anyone but me to do anything for him.  He promises to find a solution; create a device to help him stay in bed.  He assures me he is getting better and it won’t be an issue soon.  I so want that to be true but I admit, I don’t believe he will get so much better, with or without the device he’s making, that I will be able to sleep.


I asked him if while I was gone he could have Eric get the deck ready for the hurricane and to go to the gas station to fill up the gas can for the generator.  When I got home, nothing had been done.  He had not asked Eric to do any of it, including he hadn’t had lunch and nothing was put away from the things he had done while I was gone. In his defense, he just didn’t think of it but it made me sad. I wish he would think about me a little more and do things to make my life a little easier too.  I know he’s the disabled one and his burden is so much worse than mine. He is so appreciative of what I do and he tries to keep a positive attitude, but….I’m tired, and I’m sad, and I just want to be able to go to the store without rushing to get back home, and I want to not do anything of importance or any chores for a while.  Oh, well.  Time to get over my pity party.
Time to go get supper out of the stove.  Thank goodness all I had to do was heat something up tonight because I’ve been “at it” catching up work and trying to fix his computer  since I got home….It’s 11:30 pm. time to start the two-hour process of dinner and getting ready for bed.    Have a good night and stay safe from the hurricane.

Love/Hate Relationship with the Night

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 afterwards.  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.


Bed time is a ritual.  He’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 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 peddlar (make sure it’s not rubbing any ankle bones after it’s jumped a few times), putting weights on the peddlar 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 terri-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.