September 14, 2008
Right now I'm fighting the urge to scream something like oh god what have I done? But that's not a good way to start out the blogs from my new place. A good way would be to tell you that this will probably read like one really long blog entry posted on Wednesday because that is when I will regain Internet access. The guy came today but the maintenance person has to be in the building to unlock whatever room he needs to set things up in, and apparently said maintenance guy does not work on the weekends. Generally I am discovering that the weekends are a really crappy time to move into an assisted-living building, because nobody in the office is there either. And my doctor somehow failed to fax my medication list over, even though I had been bugging her for days prior, so even though I have my medication, they can not legally give it to me until they get those signed orders, and of course, my doctor is off on Monday. So I'm one big muscle spasm, and pretty unhappy about it.
Other complications? The major one. The bulk of the people in this building, residents AND caregivers, are either hard of hearing or completely deaf, and I don't yet understand very much sign language, and even when I do learn, I do not know how I will be able to send it out legibly with the level of disability in my hands. There are only 10 residents who can hear. And the other residents, most of them, are a little frustrated at the "infiltration," wanting to keep this a Deaf only community. But the owners had no choice because there are 70 apartments and there were only 40 or so residents to fill them, until they opened it up to the disabled community at large. As always, it seems to be a money issue. The major issue for me however, is communicating effectively with my caregivers. Now that I've got my computer set up, I will be making use of a word processor screen a lot, but at night it gets a little complicated and scary, although I made it through my first night last night comfortably without needing help once I got set up, and there is a call light system.
Other little but not so small complications. I just moved from a place where there were only five residents, so when I needed help, there was not a lot of waiting. Now there is. I'm a very patient person, I'm finding, especially when I have other things to do while I wait, but in certain situations, like today, I shouldn't have to. Like when I need my clothes changed. One should not be made to sit like that for too long because of skin integrity and other health issues. Today a staff member didn't show up to work, so they are shortstaffed, so if my dad had not come up to help me move, I would probably still be sitting in it right now. That's going to have to be discussed at my meeting tomorrow, because if they decide they can not help me very much, I might need to find a different place before I get settled too deeply into this one.
When I was going to try to pull the call light to get help at first for this, my catheter bag fell out of its protective case onto the floor. This made me immobile because I did not want to run it over, and I was not near either of the two places where there are call lights. Yelling for help doesn't do much good here, so I just had to try to breathe and meditate for an hour and a half until someone came to remind me it was lunchtime. Something good must be changing me however because I literally just sat there very calm, mostly because I heard the voices of friends in my head reminding me that I really do not need to waste my energy on anger over something nobody can help. However I forgot that lesson momentarily when the cable Internet guy came today as scheduled and could not install my lifeline. I began crying after he left, and my dad and sister came back and caught me.
I'm scared about the whole thing, mostly wondering if the communication is going to get any easier, and feeling very isolated, and even slightly homesick for the place and very much for the people and the food I just left behind. In the promotional video, the food was advertised as restaurant quality, but that video is two years old and the building has changed ownership twice since. So honestly, it is above the nursing home quality, but way below homemade. I guess institutional food will always be what it is. But the good news on that front is that while I am waiting for my mechanical feeder arm to show up in a week, people are willing to help me eat, as long as I am willing to wait until last. There is even a lady who can hear named Debbie who helps me when no one else can. She lives on my floor. Most of the residents who can hear at least a little live on this floor, the second.
More good news. Once I get settled, I know I will fall in love with this apartment. It is the biggest space I've had in years, and although it's a studio, I even have my own little kitchenette with microwave and refrigerator, and my own bathroom. My dad got me one of those adjustable beds with heat and massage, and although some people complain about it, I find it pretty comfortable. I slept really well last night, even though it took me a long time to actually fall asleep. The building itself is beautiful on the inside, with a library, a computer room, though I'm not going to use public access Internet here, a movie viewing room with a big screen, though I've yet to go down there, and big open spaces and lighting. And it's a block away from my commuter train stop, and about four blocks away from all the buses I will ever need to get anywhere.
Although one of the workers, who just started two days ago, gave me a speech about not being able to leave the building after 10 because they lock it down for safety and alarms go off. So that's a little scary but I think it might be resolved after I talk to the office tomorrow. One of the workers, the head nurse, Jan, worked with me when I was in the nursing home. And she knows I go out at night sometimes. So I think it will be okay. I think staff member is just a little overzealous. He's one of those kind that you would never know he's only been working here for two days, because he already knows everything and cannot wait to divulge his knowledge to you. The presentation of this information was just like a yelling lecture, although I have to remember that he has a legitimate reason for raising his voice, being hard of hearing.
I have been told, however, that on Monday through Friday during the day shift, the staff is hearing. This will be good.
And my dad has decided that his monthly contribution, instead of direct money, will be to pay for cable TV for me, so that I have something to watch from bed when I can't sleep, or in a quiet moment like these when I can't access the Internet. Before, I did not watch TV at all, but I got kind of used to it being there because it was free in my last place. And I got really into the history Channel and discovery health and even the all-day kids channels sometimes, because there is nothing like childhood memories like the Berenstain bears to calm me down when I'm really really frustrated. Laugh all you want. I don't know what level of access my dad will pay for, but I know he likes history Channel as well so I know I will get at least that. It's not so sure about the upper Discovery Channel ones, like health and investigation discovery, and I'm pretty sure no all day to the educational, because they are all high numbered channels.
I'm trying to ignore the fact that is after 7 p.m. and I am missing my friend Pony's first online DJ set in months. Okay, so more good things to deflect that. The other side of the extreme quiet which I am no longer used to is privacy, which I was no longer used to either. My apartment has a locking door, though all the caregivers have master keys in case you leave it locked and pull your call light at night. But I'm going to ask for a please do not disturb sign in case I need it and also a please do not wake up for breakfast sign in case I find I am allowed to go out later at night. They serve breakfast at 8 a.m., and although I got enough rest to be up for it today, I am not usually a morning person, especially if I go out the night before. And my family and other friends do not have master keys, and the staff pretty much leaves me alone except when it's time to remind me of meals which I'm going to ask them to stop. So privacy is still more than I've had in years. And I can listen to music over speakers whenever I want and have friends over whenever I want and they can occasionally even sleep here.
It still doesn't feel like home yet, my pictures are not up and it's only going to be my second night. And like I said I am not used to the quiet. Well, except for the commuter train coming and going every 15 minutes, but that seems comforting at the moment. Always having kids around for 11 months before was a little aggravating but comforting at the same time. They are going to bring my radio over though. That should help, although the scary thing to know right now is that I don't really feel like music. A couple of people I know are gasping right now, but music makes me feel so much, and right now I'm kind of surviving by feeling not nothing, but close to nothing, warm and sleepy. I'm willing that state onto myself so that I can make it through this time before I can connect with people in my tribe, especially one I know who is really hurting. If I think about any of these people or things too much I will start hurting. Like remembering that I'm 31 and by all rights should have a job and a apartment with no rules and no institutional food, and a regular life, and maybe even a partner to share it with. Is that too much to ask?
If Wesley and pony are reading this right now, they are both giving me a look. No, that is not too much to ask, but it doesn't fit my life the way it is. This is me. I am. I somehow have to keep remembering that, and keep remembering that a situation like this is the best possible for me the way that things are. The way that it is. The way that I am. I am. I am...
Okay, good night everyone. More tomorrow, although this will look like one really long entry.. Hope you enjoyed it so far, and how you can help is to keep connected with me by writing or whatever to keep the loneliness at bay. My phone will hopefully be installed tomorrow, so I will be calling those of you I have numbers for, although you won't see this until after the fact. Also keep the prayers and positive energy coming. I love you all.
September 17, 2008
I didn't end up writing more between because my dad was here longer than he thought he would be.. And there's not much to write today. They put the Internet up, but still no phone. I have been enjoying be able to go out more but I'm too tired to stay out really late and I miss being able to communicate with people. I still pill pretty isolated and lonely even though I know this is a much better situation.
That's all I feel like writing for now.