Ok, I've had some sleep since I first posted - the key word being some. It's sporadic at best.
I've always been a night owl as far back as I can remember. These days it's even harder to get to bed at a decent hour because so much is going on during the day & there's numerous interruptions so I can't get much done. So at night — after Mama is settled in & she thinks I've gone to bed so she will only call me for necessary things — when Big Daddy is in bed snoring [Seriously! You can hear him at the bottom of the stairs with the door shut, or in the guest bedroom downstairs. At times I can even hear him in my craft shop which is one room over from the guest room!] — THAT is when I can sit down & go through the mail, check the bank accounts online & balance the check books, pay the bills, read e-mail, try to gather up all the necessary paperwork for the CPA to do our taxes [better get on that one quick!], and all the other things that went undone during the day.
Whew! Before I know it, it's 3 or 4 in the morning & I drag myself up the stairs to bed. Only recently have I had a provider come in regularly to do things for Mama — like get her breakfast, bathe her, change her gown or get her dressed that day if she's getting up [which she hasn't done much of lately], clean her room, vacuum, dust her things, & do laundry.
Now you may wonder if I have someone coming in to do this on a daily basis [yes 7 days a week] what is left for me to do? Well, first off we only get those services 28.5 hours a week. That's the MAX she is allowed by the government. It's really not much when you consider there are 168 hours in a week. So basically the hours cover 9-1 which leaves me the rest of the day & evening to try & do things as well as take care of Mama.
So what's up with Mama that she has to have all this done for her? She has advanced Multiple Sclerosis. Multiple sclerosis, often called MS, is a disease that affects the central nervous system —the brain and spinal cord. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking. (For more info http://health.yahoo.com/ms-overview/multiple-sclerosis-ms-topic-overview/healthwise--hw190816.html) Advanced MS means that person is entirely dependent on others for his/her personal care & daily activities, is rarely able to leave the home, cannot be left alone for any extended period of time, & has complex clinical issues. While this advanced condition in MS is not common, the level of care & attention required is complex & demanding. (Caring for Loved Ones with advanced MS: A Guide for Families)
When there is no one who can come in regularly, that leaves me to do everything 24/7, which I have pretty much done from the first of the year until about 3 weeks ago. Thankfully, we now have someone 7 days a week & I can get out & get things accomplished [errands, grocery store, personal things] or just get away for a while. It's still hard for Big Daddy & I to plan any out of town trips but we manage occasionally, though not nearly as often as we should because of it.
NJ lives in Ohio. She normally comes down for Christmas, but came to stay 3 weeks this time because Mama was so sick & in the hospital for 10 days. Turns out she had a severe urinary tract infection & she was very much out of her head! She was seeing people & things, spitting, cursing [well, she said ass & ass**** — but even for Mama that is severe! lol] & just overall not herself. It later required more hospitalization followed by 8 days of IM injections of a drug that would normally be administered by IV if in the hospital. She was still having "episodes" as they are referred to, which left her unresponsive, sleeping almost 24 hours a day, & no memory of the previous few days.
The only thing I could think of that had changed was while in the hospital they gave her Neurontin — [Essential Tremor, Extreme Discomfort in Calves when Sitting or Lying Down, "Change of Life" Signs, Pain Originating From a Nerve, Neuropathic Pain, Pain Following an Operation - http://www.webmd.com/default.htm WebMD] — & is mentioned in the MS Guide as a pain medication used for spasticity [an increase in tone in a muscle group so that there is stiffness & resistance as the muscle is moved]. They had her on it 4 times a day & after a discussion with the NP [nurse practioner] I weaned her down over the course of 10 days to where she only took it at night because it helped her sleep. While the episodes seemed to lessen, they were still more frequent than she had them before, & I took her completely off it. Now she is awake & alert, she is back to her normal sleeping routine, though still not completely back to her previous condition. Chances are she's not going to be, but we don't really know yet.
At present she is unable to feed herself due to the pain in her thumbs. She can't hold the utensils & can barely control her cup for drinks on her own. Before she couldn't even manage finger foods [bread, crackers, cheese, etc] on her own because she was so shaky it would take her ages to feed herself. Of course, I had to let her [as advised by PT] because it helped to strengthen her. It was really tough to sit there & watch her struggle, but I knew it was for her own good. Now she is much better at it & we work with her fingers & thumbs to try & make them even better.
BJ [whom I sometimes refer to as 'useless' or my mother's son lol] lives here in town. He's not much help though. In the past it was all because he was an OTR [over the road] trucker & was away a lot. He'd married again & she went with him at first before getting a place here. Gradually he got off the road — not so much that he wanted to, but had to as his right knee isn't in the greatest condition. He had a football injury in high school, a few surgeries over the years that didn't quite heal right, and now it's pretty painful for him. But the reason he's not helping out is his wife [note I did not say my sister-in-law] — which is a whole 'nother story in itself & I am sure I will get around to it eventually. Anyway, BJ only comes every other weekend for about 6 hours. . . That's it. Doesn't come any other time for any other visits. Just those 6 hours on Sunday every other week. And she hasn't come at all — since Christmas of 2007, which is fine with everyone except Mama.
Punkin' comes out the every other weekend my Mother's son doesn't come. She comes on Saturday night after work, spends the night, then leaves around 3 or so on Sunday. That is more of a break & helps me out tremendously. I get to sleep late [lol] & we get to go out & eat Saturday night, which is nice.
I suppose that is enough for this installment. I was really just trying to get the basics in there of the situation here at home. It definitely affects my moods & thoughts, & it seems this is going to be the best way to express them.
I've always been a night owl as far back as I can remember. These days it's even harder to get to bed at a decent hour because so much is going on during the day & there's numerous interruptions so I can't get much done. So at night — after Mama is settled in & she thinks I've gone to bed so she will only call me for necessary things — when Big Daddy is in bed snoring [Seriously! You can hear him at the bottom of the stairs with the door shut, or in the guest bedroom downstairs. At times I can even hear him in my craft shop which is one room over from the guest room!] — THAT is when I can sit down & go through the mail, check the bank accounts online & balance the check books, pay the bills, read e-mail, try to gather up all the necessary paperwork for the CPA to do our taxes [better get on that one quick!], and all the other things that went undone during the day.
Whew! Before I know it, it's 3 or 4 in the morning & I drag myself up the stairs to bed. Only recently have I had a provider come in regularly to do things for Mama — like get her breakfast, bathe her, change her gown or get her dressed that day if she's getting up [which she hasn't done much of lately], clean her room, vacuum, dust her things, & do laundry.
Now you may wonder if I have someone coming in to do this on a daily basis [yes 7 days a week] what is left for me to do? Well, first off we only get those services 28.5 hours a week. That's the MAX she is allowed by the government. It's really not much when you consider there are 168 hours in a week. So basically the hours cover 9-1 which leaves me the rest of the day & evening to try & do things as well as take care of Mama.
So what's up with Mama that she has to have all this done for her? She has advanced Multiple Sclerosis. Multiple sclerosis, often called MS, is a disease that affects the central nervous system —the brain and spinal cord. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking. (For more info http://health.yahoo.com/ms-overview/multiple-sclerosis-ms-topic-overview/healthwise--hw190816.html) Advanced MS means that person is entirely dependent on others for his/her personal care & daily activities, is rarely able to leave the home, cannot be left alone for any extended period of time, & has complex clinical issues. While this advanced condition in MS is not common, the level of care & attention required is complex & demanding. (Caring for Loved Ones with advanced MS: A Guide for Families)
When there is no one who can come in regularly, that leaves me to do everything 24/7, which I have pretty much done from the first of the year until about 3 weeks ago. Thankfully, we now have someone 7 days a week & I can get out & get things accomplished [errands, grocery store, personal things] or just get away for a while. It's still hard for Big Daddy & I to plan any out of town trips but we manage occasionally, though not nearly as often as we should because of it.
NJ lives in Ohio. She normally comes down for Christmas, but came to stay 3 weeks this time because Mama was so sick & in the hospital for 10 days. Turns out she had a severe urinary tract infection & she was very much out of her head! She was seeing people & things, spitting, cursing [well, she said ass & ass**** — but even for Mama that is severe! lol] & just overall not herself. It later required more hospitalization followed by 8 days of IM injections of a drug that would normally be administered by IV if in the hospital. She was still having "episodes" as they are referred to, which left her unresponsive, sleeping almost 24 hours a day, & no memory of the previous few days.
The only thing I could think of that had changed was while in the hospital they gave her Neurontin — [Essential Tremor, Extreme Discomfort in Calves when Sitting or Lying Down, "Change of Life" Signs, Pain Originating From a Nerve, Neuropathic Pain, Pain Following an Operation - http://www.webmd.com/default.htm WebMD] — & is mentioned in the MS Guide as a pain medication used for spasticity [an increase in tone in a muscle group so that there is stiffness & resistance as the muscle is moved]. They had her on it 4 times a day & after a discussion with the NP [nurse practioner] I weaned her down over the course of 10 days to where she only took it at night because it helped her sleep. While the episodes seemed to lessen, they were still more frequent than she had them before, & I took her completely off it. Now she is awake & alert, she is back to her normal sleeping routine, though still not completely back to her previous condition. Chances are she's not going to be, but we don't really know yet.
At present she is unable to feed herself due to the pain in her thumbs. She can't hold the utensils & can barely control her cup for drinks on her own. Before she couldn't even manage finger foods [bread, crackers, cheese, etc] on her own because she was so shaky it would take her ages to feed herself. Of course, I had to let her [as advised by PT] because it helped to strengthen her. It was really tough to sit there & watch her struggle, but I knew it was for her own good. Now she is much better at it & we work with her fingers & thumbs to try & make them even better.
BJ [whom I sometimes refer to as 'useless' or my mother's son lol] lives here in town. He's not much help though. In the past it was all because he was an OTR [over the road] trucker & was away a lot. He'd married again & she went with him at first before getting a place here. Gradually he got off the road — not so much that he wanted to, but had to as his right knee isn't in the greatest condition. He had a football injury in high school, a few surgeries over the years that didn't quite heal right, and now it's pretty painful for him. But the reason he's not helping out is his wife [note I did not say my sister-in-law] — which is a whole 'nother story in itself & I am sure I will get around to it eventually. Anyway, BJ only comes every other weekend for about 6 hours. . . That's it. Doesn't come any other time for any other visits. Just those 6 hours on Sunday every other week. And she hasn't come at all — since Christmas of 2007, which is fine with everyone except Mama.
Punkin' comes out the every other weekend my Mother's son doesn't come. She comes on Saturday night after work, spends the night, then leaves around 3 or so on Sunday. That is more of a break & helps me out tremendously. I get to sleep late [lol] & we get to go out & eat Saturday night, which is nice.
I suppose that is enough for this installment. I was really just trying to get the basics in there of the situation here at home. It definitely affects my moods & thoughts, & it seems this is going to be the best way to express them.
